Tag Archives: celiac disease

GFgoodjpg

Dr. Fasano’s Gift of Gluten Freedom

Dr. Alessio Fasano, founder and director of the Center for Celiac Research at Massachusetts General Hospital, is one of the world’s leading experts in celiac disease and non-celiac gluten sensitivity. Without his dedication and research, there’s a good chance that many of us with celiac disease would still be walking around undiagnosed and chronically ill. As I have stated before, he is one of my heroes.

I had the fortune to read Dr. Fasano’s brand new book, Gluten Freedom, as I sat at O’Hare airport earlier this week due to a flight delay.   It made for one of the most fascinating flight delay experiences of my life.

Gluten Freedom explains the history of celiac disease, celiac disease awareness in the medical community, and the amazing leaps in celiac research over the past two decades.  Most significant research findings related to celiac disease are discussed and summarized in an easy to read manner. Dr. Fasano shows how celiac disease can have effects on all areas of the body, not just the digestive system, and discusses new research on the neurological and psychiatric/behavioral effects of gluten.  Non-celiac gluten sensitivity is discussed in depth as well, and Dr. Fasano makes it clear that non-celiac gluten sensitivity is a separate diagnosis from celiac disease that occurs in up to 6% of Americans. In addition, Dr. Fasano paints us a picture of why not all of us are successful on the gluten free diet, and justifies the need for additional medical treatment options for celiac disease.

My favorite part of the book was Part 3, in which the chapters deal with living with celiac disease during specific phases of life, including pregnancy, childhood, college, and the elderly years. A lot of the questions I have had others ask about me about being gluten free during pregnancy are discussed in this book.

One of my favorite quotes was Dr. Fasano’s discussion of what happens at the time of diagnosis. He states, “As a physician, I’m very sympathetic with this complex combination of emotions.  I never minimize the feelings of someone who has just realized that his or her life has been changed forever by this restriction on one of the most enjoyable activities of humankind, that is, eating.” He truly “gets it” like I wish other doctors would.

Although I’d love to be able provide a summary of the entire book for you, like I often do for journal and research articles, I cannot, as my post would end up being about 500 pages long!  If possible, I urge you to read this book on your own.  No matter what age you are, or where you are in your gluten-free journey, you will be helped by the information in it and will gain a better understanding of your medical condition.

Although the hardcover version of Gluten Freedom will not be available until April 29th, the Kindle version is already available on Amazon.com for $11.99. If you can swing it, it is money well spent, I promise.

And Dr. Fasano, if you (or one of your representatives) ever do read my post, thank you for all you’ve done and continue to do for all of us with gluten-related disorders.  We truly appreciate it!

 

ID-100149378

Happy Gluten-Free Spring

I intended for this post to be an overview of a recent review article about celiac disease written by three prominent celiac researchers in the UK, Drs. Mooney, Hadjivassiliou, and Sanders. However, after just doing 7 hours of online continuing medical education modules, my heart and brain are not cooperating, and I am also ready to throw my laptop out the window. So I’m going to shorten my post by quite a bit and save the life of my computer…

Below are the “take home” messages of the article, as well as some interesting comments on the original article that were published by another physician. Please bear in mind that I am “translating” from medical terminology to lay terminology, so if anything seems confusing, just post a comment and I will clarify.

1. The prognosis for celiac disease is good and those with celiac have a normal life expectancy.

2. The gluten free diet is currently the only treatment for celiac disease (this is the only 1 of the 6 that I was told when I was diagnosed).

3. Although the risk of lymphoma is greater than the general population, it is small, and being on the gluten free diet reduces the risk of lymphoma.

4. The average celiac patient has low bone mineral density, therefore, adequate vitamin D and calcium intake must occur.

5. If patients do not get better on the gluten free diet, then they need to seek medical advice as this indicates that there is either ongoing gluten exposure, or another condition that needs to be evaluated.

6. Close family members have a 1 in 10 chance of also having celiac disease; 1st degree relatives (parents, siblings, and children) should be screened.

Dr. Andrew Smith, also from the UK, had some interesting comments about this article in regards to the role of an endoscopy and biopsy in the diagnosis of celiac disease. I’ve cut and paste a few of Dr. Smith’s statements below (originally published online in the British Medical Journal on 3-12-14).

“The article is an interesting and informative overview of coeliac disease. However, the discussion related to the necessity of a duodenal biopsy in adults seems comparatively inadequate; especially considering that it is reported that European guidelines provide an algorithm for avoidance of biopsy in children.”

“The formal diagnosis of coeliac disease seems to be an academic endeavour in certain cases. If an adult patient has resolution of symptoms on a gluten-free diet, especially if combined with high serological markers, can this not be enough to recommend continued trial of dietary gluten avoidance? Even if the patient has Irritable Bowel Syndrome with an element of gluten-sensitivity, the treatment will be the same. The insistence on endoscopy seems unnecessary in these cases; both in relation to patients’ perceptions and experience of such an invasive procedure and to the financial costs associated with it.”

“Another factor is that of an ethical one. It is well known that a fundamental basis of medicine is ‘primum nil nocere’ (‘first, do no harm’). It therefore seems erroneous to encourage patients to continue with gluten-containing diets whilst awaiting an endoscopy appointment, especially when serological tests can be taken within one or two days. Even more conflicting is prescribing individuals a ‘gluten challenge’ with the explicit aim to create the histological features, but also concomitant symptoms, to aid the diagnosis of a disease for which the treatment may have already had benefit.”

I think that Dr. Smith brings up some of the same questions that many of us, as patients, have had through the years, and it is nice to see that this is being debated and discussed.

On a totally unrelated note, sometime this week is my 4 year anniversary of being diagnosed with celiac disease and going gluten free (I’m not sure of the exact date but know it was around St.Patrick’s Day).

As a tribute I would like reflect on the ways that this diagnosis has changed my life for the better:

-I have energy and can run, chase my kids around the yard, ski, do yoga, and stay awake all day (and sometimes all night for work) without feeling like sleeping all of the time. My joint pains are gone and I feel younger than I did 4 years ago.

-I have been forced to eat healthier and provide my entire family with more nutritious food. I no longer take what I eat for granted, and I have mastered the art of label reading. I have also learned to cook and bake from scratch, something that I had never had to confidence to try to do in the past. I also have an excuse not to eat all of the junk food in the break room at work, donuts at conferences, etc.

-When we road trip and travel we have to plan out our food-related stops ahead of time, and no longer rely on eating at fast food places like McDonald’s. This has been a blessing, and just last week we discovered a super great eatery called Egg Harbor Café, with GF options, outside of Chicago while on a road trip. I highly recommend checking them out if you live or travel through the area, there are a bunch of locations.

-I have formed an incredible network of people with celiac disease and non-celiac gluten sensitivity around the world. And although I have met only a few of you in person, it is a joy to be able to communicate, email, and share ideas, stories, articles, laughs, etc. I am so grateful for your love, advice, and support.

-I’ve realized that I can live a full life, even with celiac disease and 2 other autoimmune conditions. Although it’s not always a piece of cake, celiac disease is not a death sentence (see #1 above) or a reason to hate the world. It has been empowering for me to triumph over celiac disease.

The next time I get glutened, I’ll have to remember to look back on this post. Dear Tom, if you are reading this, please remind me to do so!

Have any of you had experienced positive life changes following your diagnosis? If so, please feel free to share. I would love to balance some of the negativity and bitter feelings about celiac disease and living gluten free that seem to be increasingly prevalent these days in the internet world.

I won’t be writing much this spring, but feel free to post questions and comments either here or on my Facebook page, and I’ll respond as soon as I can. Thanks for reading and Happy Spring!

Reference:

Mooney, P., Hadjivassiliou, M., Sanders, D. Coeliac disease. BMJ 2014;348:g1561. Published online 3 March 2014.

ID-100142496

Celiac Disease Can be a Pain in the Joint

Unexplained joint pains (arthralgias) were one of the main symptoms that I dealt with prior to my celiac diagnosis. Throughout my twenties I had pain and stiffness in my fingers, knees and ankles that would come and go with no apparent explanation.  I ran track for part of high school and continued to run for fitness during college, but shortly after graduating had to stop running for a long time due to my joint issues. I was evaluated over and over again for lupus, rheumatoid arthritis, Lyme Disease, etc. but there were never any answers for why I had developed the pains. So I learned to live with them and I stopped running. Fortunately, since going GF in 2010 my arthralgias have almost entirely disappeared, and I was able to resume running again.

Based on previous research, up to 25% of people with celiac disease may experience joint pains. In just the last few months there have been a few interesting studies published about the relationship between celiac disease and joint issues.

A group of researchers published a paper last week showing a significant relationship between joint inflammation and celiac disease in children. They evaluated the knees, hips, and ankles of children with celiac disease (n=74) by ultrasound. They compared ultrasound findings of those with treated v. untreated celiac disease and found that 50% of those who were not on the GF diet had evidence of joint inflammation v. only 11% of those who were GF.

In a recent Tunisian study, researchers tested over 200 women with unexplained arthralgias (joint pains) for celiac disease.  They found much high rates of undiagnosed celiac disease in their sample (2.37%) than in the general population in their country (0.28%).  Interestingly enough, all of the women who were diagnosed did have other symptoms of celiac disease, such as anemia and infertility, when their medical records were reviewed after-the-fact.

In addition, Dr. Guandalini refers to the relationship between celiac disease and arthritis in his review of celiac disease in children that was published earlier this month in JAMA Pediatrics (see my previous post for a summary and for the actual reference).

Although the relationship (or lack of one) between juvenile idiopathic arthritis (JIA) and celiac disease appears to be debatable in the medical literature, this story, which was published last year in the NY Times, does present a compelling case for a link, at least in some cases.

Have any of you experienced celiac-related joint pains? If so, please share, as your stories may lead others to be diagnosed…

References:

  1. Lubrano E, Ciacci C, Ames PR, et al. The arthritis of coeliac disease: prevalence and pattern in 200 adult patients. Br J Rheumatol. 1996;35(12):1314.
  2. Iagnocco ACeccarelli FMennini M, et al. Subclinical synovitis detected by ultrasound in children affected by coeliac disease: a frequent manifestation improved by a gluten-free diet.Clin Exp Rheumatol. 2014 Jan 20. [Epub ahead of print]
  3. Ghozzi MSakly WMankaï A, et al. Screening for celiac disease, by endomysial antibodies, in patients with unexplained articular manifestations. Rheumatol Int. 2013 Dec 1. [Epub ahead of print]
image-17

Celiac Disease in Children (Summary of January 2014 Review Article)

Drs. Guandalini and Assiri have written a summary of pediatric celiac disease that was published in the online edition of the journal JAMA Pediatrics last week. In this post I will share some of the highlights of their review article.

Although the overall prevalence of celiac disease is 1% in the pediatric population, only 10-15% of children with celiac disease have been diagnosed and treated.

The celiac genes (HLA-DQ2 and DQ8) contribute 40% of the risk of developing celiac. Environmental risk factors for celiac disease include infant feeding patterns, early infections, gut microbiota, and the amount and timing of initial gluten exposure.

The two major autoantibodies used in the diagnosis of celiac disease include the anti-TTG IgA and antiendomysial IgA. The antibody against deamidated gliadin peptides IgG (DGP IgG) is a 3rd antibody that has been identified. The DGP IgG may be the best one to use for diagnosing celiac disease in young children (under the age of 2) as it has the highest sensitivity in this age group.

During the past few decades there has been a shift from children presenting with celiac disease having typical symptoms (gastrointestinal) to having extraintestinal (atypical) symptoms.

“Typical” symptoms include abdominal pain (most common), diarrhea, chronic constipation, weight loss, vomiting, abdominal distension, and malnutrition.

“Atypical” (extraintestinal) symptoms in children include all of the following:

  • fatigue
  • iron deficiency anemia
  • dermatitis herpetiformis
  • dental enamel defects
  • aphthous ulcers (canker sores)
  • arthritis and arthralgias (joint pains)
  • low bone mineral density, fractures of bones
  • elevated liver enzymes
  • short stature
  • delayed puberty
  • cerebellar ataxia
  • recurring headaches
  • peripheral neuropathy
  • seizures
  • psychiatric disorders, including anxiety, panic attacks, depression

Celiac disease is associated with other pediatric conditions, including type 1 diabetes mellitus, selective IgA deficiency, Down syndrome, Turner syndrome, and Williams syndrome.

Patients with celiac disease are at an increased risk of all of the following (I was not aware of many of these associations until I read this article):

  • adrenal insufficiency
  • asthma
  • IgA nephropathy
  • lupus
  • pancreatitis
  • hyperparathyroidism
  • endometriosis
  • cataracts
  • ischemic heart disease
  • dilated cardiomyopathy

Dr. Guandalini recommends that celiac diagnosis in children involve celiac antibody testing, endoscopy with small bowel biopsy, and response to the gluten free diet. He does discuss that the European Society for Pediatric Gastroenterology, Hepatology, and Nutrition (ESPGHAN) has recently issued guidelines for diagnosis in which, in select cases, the small bowel biopsy can be omitted. Dr. Guandalini’s major concern is that if children undergoing evaluation do not have biopsies done, that other GI diagnoses that may need treatment, such as eosinophilic esophagitis, can be missed.

Celiac Disease resources that were discussed toward the end of the article include the Academy of Nutrition and Dietetics website, www.eatright.org, and an e-book created by the University of Chicago Celiac Disease Center called “Jump Start Your Gluten-Free Diet.”

In summary, this is a nicely written paper that is a great summary for pediatricians and other practitioners who need to be on the look out for celiac disease in their pediatric patients. I also thought that some of you non-medical folks might be interested as well!

Reference: Guandalini S, Assiri A. Celiac Disease: A Review. JAMA Pediatr. 2014 Jan 6. doi: 10.1001/jamapediatrics.2013.3858.

Lastly, the super cute children in the photo are my baby brothers and nieces who are now in their late teens and twenties. Since none of them read my blog, as they seem to be in denial that they have a risk of celiac disease, I had no qualms about sharing their adorable photo. Also, I became an aunt for 19th time this past week! Welcome baby Gabriel Dominic and congratulations to my sister and her family on his birth.

Thank you for reading!

 

IMG_4333

December Book Review, Recipes, and Ramblings

If you are one of my readers who visits this page to be able to learn about newly published research studies about celiac disease and gluten sensitivity, this is not the post for you. I am not going to write about any research this time. Instead, this is going to be a rambling post written by a chronically sleep-deprived, working mother 2 weeks before Christmas! If you don’t like the sounds of it, please stop reading now!

We celebrated Thanksgiving a few weeks with our wonderful friends who have become like family since moving to Wisconsin 4 years ago. M, the husband, went out of his way to prepare an almost entirely GF dinner for all of us, even though I was the only one of the guests unable to eat gluten. He stuffed the turkey with Rudi’s GF stuffing mix and it turned out really good. My husband and I were responsible for only a few items for the dinner, which included cornbread, cranberry sauce, wine and beer, ice cream, and pumpkin pie. I made a lovely pumpkin pie using a GF Pillsbury pie dough the night before Thanksgiving and when I was taking it out of the oven at 9:45 pm I accidentally dropped it to the ground and it was smashed to bits. I foraged through my cupboards and found an old bag of Cup 4 Cup GF flour that I had forgotten I had, and an extra can of easy pumpkin pie filling. I searched the internet for a pie crust recipe using Cup 4 Cup flour and I came across this recipe on a website called Kitchen Simplicity. I followed the recipe using 3 tablespoons of water and the “mix by hand” option because my food processor is broken, and the pie crust turned out a million times better than the first one that I had ruined had tasted (I only know this because I ate a few bites of it that had fallen on my kitchen floor as I tried to figure out if I’d be able to salvage it!) The pie dough from the recipe I made was very soft and the consistency reminded me a lot of other GF doughs, like Chebe. I used my hands, as opposed to a roller, to shape it into the pie dish. I am planning on using it as my basic pie recipe from now on since it was so simple and good. So, in the end I am thankful that I ruined my pie!

Once we get through this crazy week (my two oldest daughters are performing in our local production of the Nutcracker and there are rehearsals or performances every night) we are going to make some Christmas cookies. We have been using an easy cut-out GF sugar cookie recipe that I adapted from the Land O’Lakes recipe with great success (see link). I am going to omit the xanthan gum again this year as I have made it without the gum the last 2 times and we haven’t been able to detect a difference. Please feel free to share any of your favorite GF cookie recipes too in the comments section if you’d like. My kids and I love trying out new cookie recipes and my 4 year old loves to be in the kitchen with me.

I was recently introduced to the children’s book “Gluten-Free Me” written by a fellow Clevelander named Christy Bykowski. Christy’s middle son Beckmin has celiac disease. The main character who is also named Beckmin, has celiac disease, and this book describes his navigation of his first day of kindergarten. My three oldest children, who are 8, 6, and 4, really enjoyed the book and through reading it with them, I feel that they gained a better understanding of why those of us with celiac disease need to be so careful about gluten cross-contamination. I recommend this book for children with celiac disease, as well as siblings, other relatives, and friends of people with celiac disease who are from about 3 to 9 years old. This would also be a great book for teachers to have in their classrooms. You can purchase the book here or at amazon.com. Now that I think about it, it would make a great Christmas gift! As a disclaimer, I was sent a free copy of this book to review.

9781612442280-250x250

A few other random things:

I received an email from a company that has recently created an iPhone/iPad/Droid app called GlutenFree VIP. At this point, outside of reviewing celiac-related books from time to time, as I just did above, I am opting to not review any products for compensation. That being said, I did download the app and was happy to see that GF foods from some great online stores, like Moon Rabbit Foods, are available, so this looks like this may be a promising tool. I haven’t actually tried it yet, but thought that this app may be of interest to some of you to try out.

I was recently hired as a freelance writer by the magazine Gluten-Free Living and my first article about Probiotics and Celiac Disease will be in their Jan/Feb 2014 issue that will soon be hitting the shelves. I encourage you to check it out of you are interested in learning more about the topic and have been considering whether or not to start taking a probiotic. This is my first publication since I published research from my fellowship training, so I am pretty excited about it. Gluten-Free Living is also having a conference in Orlando in April (4th thru 6th) that I am considering attending.

Lastly, I would like to recognize Sue, a fellow Celiac who works in dietary services at the hospital where I work. Over the past few months Sue has gone out of her way to enable me to safely eat in our doctors’ lounge by doing things such as moving the bowl of fruit salad far away from all bread crumbs and keeping a secret stash of Rice Chex and other GF foods for me. Thank you Sue for all of you have done to make my work life easier. I really appreciate it and hope that you are reading this!

If any late-breaking, hugely important celiac-related papers are published between now and Christmas, you will hear from me. Otherwise, I’ll be back sometime around the new year. Merry Christmas to you and your families (if you celebrate) and Happy New Year! I wish you peace, love, and joy. Remember that you can always reach out to me by email at thepatientceliac@gmail.com.

20051212_0137

This was my first Christmas as a mom in 2005. My daughter Grace was 7 weeks old when this was taken. It is one of my favorite Christmas photos and when I look at it I am reminded of how quickly my kids are growing up and that I need to slow down and enjoy the present time with them! And take a break from blogging for a while! I’ll see you in 2014!

ID-10031676

If Research Looks Too Good to Be True, it Probably is…

I recently learned that bovine colostrum (the milk produced by cows in the first few days postpartum) was discussed during a large online presentation for those with gluten-related disorders.  As some of you may know, I am a huge advocate of breastfeeding and I think that it is very important for newborn babies to get their own mothers’ colostrum, if possible, because it is full of antibodies and other immune proteins, pre- and probiotics, and it promotes optimal functioning of babies’ digestive tracts.

However, I was unfamiliar with any benefits of bovine colostrum for humans, and in doing a search of the literature on Pubmed.gov, I was unable to come up with any scientific references regarding the use of bovine colostrum for celiac disease or non-celiac gluten sensitivity. All that I could find regarding bovine colostrum and “leaky gut” in humans was one study showing that bovine colostrum is associated with an increase in intestinal permeability in runners, and another showing that it may decrease intestinal permeability in athletes.

Many of the bovine colostrum manufacturers have loads of references about bovine colostrum available on their internet pages. Interestingly enough, many of them have exactly the same references that they appear to have shared with each other. I decided to check a couple of them out (taken from an anonymous company’s page):

1.   Immunoglobulin from bovine colostrum effectively reduces and prevents viral and bacterial infections in immune deficient subjects: bone marrow recipients, premature babies, AIDS, etc. New England Journal of Medicine

-This one caught my eye because I work with premature babies and I have never heard of bovine colostrum being used as a treatment in my patient population. I checked the entire New England Journal of Medicine (NEJM) database for the last 20 years and there is only one article regarding bovine colostrum, which is a case report in which it was given to an AIDS patient with a cryptosporidial infection causing diarrhea.

2.   Immunoglobulin in colostrum has been used to successfully treat: Thrombocytopenia, Anemia, Neutropenia, Myasthenia Gravis, Guillain Barre Syndrome, Multiple Sclerosis, Systemic Lupus, Rheumatoid Arthritis, Bullous Pamphigoid, Kawasaki’s Syndrome, Chronic Fatigue Syndrome and Crohn’s disease, among others. Dr. Dwyer; New England Journal of Medicine

-Again, I checked the NEJM database, and I cannot find evidence of an author named Dr. Dwyer who has published any research about colostrum. Likewise, Dr. Dwyer definitely did not write a review article about colostrum for the NEJM. Is Dr. Dwyer a physician who reads the NEJM and somehow found all of these articles about colostrum that I am unable to find? Or is he or she made up? It’s hard to tell.

3.   Human clinical study: Immune factors in cow colostrum, when taken orally, are effective against disease-causing organisms in the intestinal tract. Ingestion of bovine colostrum’s immunoglobulins may be a new method of providing passive immunoprotection against a host of gut-associated disease causing antigens (viral and bacterial). Dr. R. McClead, et. al.; Pediatrics Research

-Dr. R. McClead has published two studies about colostrum that are listed in PubMed.gov. The first, in 1984, showed that bovine colostrum contains antibodies against cholera. The second, in 1988, showed that bovine colostrum was not effective in the treatment of cholera diarrhea. Also, as an FYI, the journal Pediatrics Research does not exist; there is a journal called Pediatric Research. Is there possibly some unpublished pediatric research regarding bovine colostrum that Dr. McClead has done? If so, it should be described as such.

All in all, I personally have nothing against bovine colostrum, but I feel that the above references are misleading and make me much less trusting of such a product.  Scientific/research references should always contain the following information:

1. Authors’ names

2. Title of article/study

3. Journal name, volume, and page numbers (if unpublished, or an abstract only, it should be described as such)

4. Date of publication

If a manufacturer of a product is unable to provide this information with their cited reference(s), it is a red flag that the information they are providing may be inaccurate.  Also, a manufacturer of a product should not ask you to pay money to be able to see their references.  This information should be freely shared so that consumers can make informed decisions.

Have any of you had a similar experience of coming across references on the internet that do not add up? If so, please share.

ID-10073499

Non-celiac gluten sensitivity in children

I was thrilled to come across a paper about non-celiac gluten sensitivity in children in the Journal of Pediatrics, one of the main pediatric journals. Many of my pediatrician colleagues read this journal on a regular basis. In this article, a group of Italian researchers have described the symptoms and lab test results in 15 children with gluten sensitivity (GS) compared to 15 children with active celiac disease and 15 controls (children with IBS-type symptoms that have no correlation with gluten intake). None of the children included in the GS group had an IgE-mediated wheat allergy causing symptoms. Most of the children in the study were between 8 and 10 years old.

Here is a brief overview of the research study:

  • The main symptoms in the gluten sensitive group included abdominal pain, chronic diarrhea, bloating, failure to thrive (poor growth), vomiting, and constipation. These symptoms were similar to those seen in the group of children with active celiac disease. The “control” group of children with functional (IBS-type symptoms) had only abdominal pain and indigestion as symptoms.
  • The gluten sensitive children had “extraintestinal” symptoms of tiredness, headaches, and limb pains. Interestingly, these were not seen in children with active celiac disease. The celiac group of children had anemia and elevated liver function enzymes but the gluten sensitive children did not.
  • Two thirds of the gluten sensitive children had abnormally high antigliadin IgG antibodies (this is an older antibody that was used in the past to assess for celiac disease, but is no longer used because it is non-specific for celiac disease). None of the gluten sensitive children had elevated celiac antibodies (TTG IgA and endomysial IgA). All of the children with active celiac disease had abnormally high TTG IgA and endomysial IgA levels and 13/15 with celiac disease had elevated antigliadin antibodies. The control group kiddos with functional abdominal pain were negative for all antibodies (antigliadin, TTG, and endomysial).
  • Seven of the 15 children with GS had one of the celiac genes (DQ2/8) and 8 did not. The 8 gluten sensitive children who were DQ2/8 negative all had some combination of HLA DQ1, DQ5, and DQ7.
  • Eleven of the 15 GS children had an intestinal biopsy while on a gluten-containing diet. All of those with GS had normal to mildly inflamed intestinal mucosa, corresponding to Marsh stage 0 to 1.

In summary, the authors provide findings that support the existence of gluten sensitivity in children as a distinct problem from celiac disease. Children with gluten sensitivity have celiac-like symptoms that resolve on a gluten free diet and return when gluten is reintroduced. Although gluten sensitive children often have elevated antigliadin IgG levels, they have normal TTG IgA and endomysial IgA levels, at least in this study. Their small bowel biopsies show no evidence of villous blunting and, in the majority of cases, the biopsies are normal. In addition, these children’s symptoms are not as a result of being allergic to wheat. Although this is a small study, it is a step in the right direction toward the recognition of non-celiac gluten sensitivity in the pediatric population, and I am thankful that there is finally a research study to support its existence. I am looking forward to being able to read and share similar articles with you.

Reference:

Francavilla, R., Cristofori, F., Castellaneta, S., et al. Clinical, serologic, and histologic features of gluten sensitivity in children. Journal of Pediatrics. E-pub ahead of print. Nov. 16, 2013.

ID-100125319

Risk Factors for Celiac Disease

I’ve had a very difficult week getting my act together to watch any of the Gluten Summit videos, and was unable to make it to my local celiac support group’s dinner tonight due to traffic difficulties (sorry Mary Lynne!), but I was able to get my hands on Dr. Benjamin Lebwohl’s latest manuscript called “The Unfolding Story of Celiac Disease Risk Factors.” If you have Celiac Disease and haven’t heard of Dr. Lebwohl, he is one of the main researchers at the Celiac Disease Center at Columbia University in New York with Dr. Peter Green. Just this past summer Dr. Lebwohl published a landmark paper (see link) showing an increased risk of lymphoma in untreated celiac disease. If you haven’t read this paper, I recommend reading it and showing it to your family members to convince them that they need to be screened for celiac disease if they’d like to prevent getting cancer.

It is currently known that there are 3 components to developing celiac disease: ingestion of gluten, having one of the celiac genes (HLA DQ2 and/or DQ8 in most cases), and a yet to be determined environmental factor. Researchers are working hard to figure out what the environmental trigger is, as avoiding it may be the key to preventing the development of celiac disease in genetically susceptible individuals. About 40% of the U.S. population carries one of the celiac genes, and as I learned at the International Celiac Disease Symposium in Chicago this fall, Celiac can also develop in people who do not have the 2 main genes (myself included, I am double DQ7 positive).

In his latest paper, Dr. Lebwohl discusses the current theories regarding risk factors for the development of celiac disease that have been well-researched. They include the following:

1. Infant feeding practices. There was an epidemic of celiac disease in Sweden in the 1980s and 1990s which corresponded with a change in feeding practices. Babies during this time period were exposed to large amounts of gluten after they had been weaned from breast milk. The lovely Cristen Pantano wrote a guest post for me about this very topic in October 2013. Thus, the timing of the introduction of gluten during infancy may have an effect on the later development of celiac.

2. Infections, including rotavirus infections in children and campylobacter infections in adults, have been associated with an increased risk of celiac disease.

3. Hygiene hypothesis. Research has shown an increased risk of celiac disease in developed countries (i.e. Finland) than in less developed regions, such as the Russian Karelia region. A decrease in exposure to bacteria and microbes may lead to an increased risk of autoimmune and allergic conditions. Kids are supposed to be dirty to some extent.

4. Infants born via c-section are at higher risk for celiac disease than infants delivered vaginally. This is likely due to a change in the colonization of babies’ intestinal flora. For more on this topic, you can see my post about probiotics from February 2013 (and I’ve also heard through the grapevine that this is being discussed quite a bit during the Gluten Summit).

5. Gastrointestinal tract colonization with H pylori, a bacteria, is associated with a lower risk of celiac disease.

6. Medications associated with a higher risk of celiac include antibiotics (especially multiple doses) and proton pump inhibitors (i.e. Prilosec or Prevacid). I cringe when I think of how many antibiotics and anti-reflux medications I was on during college when I was repeatedly treated for ulcers and acne (in retrospect my symptoms were from untreated celiac disease and I have a feeling that this is the case for many people).

7. Infants whose mothers take iron supplements during pregnancy are at a higher risk of celiac disease than infants whose mothers did not take iron. Excess iron may have an effect on the makeup of the bacterial microbiome and have an influence on the innate immune system. More research into this area is needed before specific recommendations can be made and/or changed in regards to iron supplementation during pregnancy.

Overall, this paper by Dr. Lebwohl is the most comprehensive, up-to-date summary of our current understanding of celiac disease risk factors that I have come across, and every risk factor has research to support its inclusion. I am optimistic that, in the future, as more information becomes available, that we will be able to better identify those at risk for celiac disease and prevent it. Right now the only way to prevent celiac disease from developing is to exclude gluten from a newborn baby’s diet for life. And as we all know, in our gluten-filled world, this is much easier said than done! Perhaps for my great-great grandchildren we’ll have an easier way to prevent it. As my 4 year old daughter reminded me today as I dropped her off at school, “Mommy, you are going to be a grandma soon because you look like you are almost 100 years old!” So, perhaps this will be sooner than later!

Reference:

Lebwohl, B, Ludvigsson, JF, Green, PHR. The unfolding story of celiac disease risk factors. Clinical Gastroenterology and Hepatology (2013), doi: 10.1016/j.cgh.2013.10.031.

ID-100114989

2013 International Celiac Disease Symposium Poster Highlights

Although I did not allot enough time to check out all of the posters of abstracts that were on display at the International Celiac Disease Symposium (ICDS) in person, all of us received a spiral bound book that contained the hundreds of scientific posters that were presented. Abstracts are summaries of new research studies, and in many cases, they have not yet been published in a journal. I have started to review the book of abstracts that I received from the ICDS and there are some abstracts that are truly fascinating. We’ll hopefully hear more about these studies in the future as they get published in journals.

Here is a brief synopsis of five of the most interesting studies that I’ve been reading about:

1. “Nine years of follow-up of potential celiac disease in children.” A group of researchers from Naples, Italy (Aurrichio, et al) followed 156 with potential celiac disease who were not on a GF diet. Potential celiac disease, as I discussed here, is when a patient has abnormally high celiac antibodies on blood screening, and often symptoms, but a normal intestinal biopsy. The management is currently controversial. In this study, over a 5-year period, 46.8% of the children with potential celiac disease developed full-blown celiac disease.

2. “Celiac disease detection in asymptomatic children of 2 and 11 years old in a primary care health center using a transglutaminase antibodies quick test.” A Spanish team (Vallejo, et al) screened groups of 2 and 11 year olds for celiac disease in an outpatient clinic using rapid tests. 2% of the 2 year olds had confirmed celiac disease, and 1.5% of the 11 years had celiac disease. The overall rate of celiac disease in their population was 1.7%, which is higher than previously described.

3. “Absence of HLA-DQ2 and HLA-DQ8 does not exclude celiac disease in Brazilian patients.” HLA DQ2 and DQ8 are the 2 main celiac disease genes and are the ones that are currently tested for by most U.S. laboratories. In this study, a Brazilian team (Kotze, et al) performed gene tests on 101 patients with biopsy confirmed celiac disease. They found that 9 (8.9%) of their patients with celiac disease were DQ2 and DQ8 negative. They suspect that this is related to having such an ethnically diverse population in Brazil.

4. “Neurological dysfunction in patients with newly diagnosed celiac disease: a large prospective study.” Dr. Hadjivassiliou and team from the UK performed neurological evaluations on 73 patients with newly diagnosed celiac disease. 63% complained of neurologic symptoms; the most common were frequent headaches, problems with balance, and sensory symptoms. 32% had abnormal white matter lesions on MRI scanning and 43% had abnormal spectroscopy of the vermis of the cerebellum. The cerebellum is the part of the brain involved in balance and posture.

5. “Potential or definite celiac disease: push enteroscopy changes the diagnosis.” A celiac research team from the UK, lead by Dr. Eross, evaluated 16 patients with “potential” celiac disease. Potential celiac disease, as discussed above, is the term for when a patient has abnormally elevated celiac antibodies but no evidence of celiac disease on small bowel biopsy. They found that when their original duodenal biopsies were re-reviewed and biopsies of the jejunum (2nd part of the small intestine that is not typically biopsied when a patient is evaluated for celiac disease) were performed that 15 of the 16 patients actually did have celiac disease. They recommend that a diagnosis of potential celiac disease can only be made if the jejunum has been evaluated by biopsy.

Please let me know if you are interested in reading more about the abstracts that were presented at the ICDS poster session, as there are literally hundreds more that I can summarize for you. Also, I would love to hear about any interesting research that you have stumbled upon!

1331341-1331357-932104-1415516

ICDS 2013: The Celiac Iceberg Revisited

The second to last session on day one of the 2013 International Celiac Disease Symposium (ICDS) was a talk entitled, “Melting the Celiac Iceberg-potential, latent, silent: to treat or not to treat?” I was very confused about these terms when I first came across them in the Celiac medical and research literature a few years ago.

“Silent” Celiac Disease refers to patients who have Celiac Disease (elevated Celiac antibodies on blood testing and abnormal small bowel mucosa on endoscopy and biopsy) but no outward symptoms (or at least, do not appreciate any abnormal symptoms). Many silent Celiacs are picked up when they are screened for Celiac Disease due to having a family member with Celiac Disease and/or being in a high risk category for Celiac Disease, i.e. having Type 1 Diabetes.

“Latent” or “Potential” Celiac Disease is the term for when a patient has abnormally high Celiac antibodies on blood testing but either normal, or almost normal, small bowel mucosa on endoscopy. Many with potential Celiac Disease have abnormal symptoms. Some patients with this problem are told they are gluten sensitive, some have been told that they may have “early” or “pre” Celiac Disease, some are told by their doctors that they can continue to eat gluten, and others are advised by their doctors to go gluten free. My understanding is that, in recent years, the word “potential” is preferred over the word “latent” to describe this group.

Dr. Daniel Leffler, from the Celiac Center at Beth Israel Deaconess in Boston, presented the case for the GF diet in patients with potential and silent Celiac Disease, while Dr. Riccardo Troncone, from Naples, Italy, presented the case against the GF diet in these populations. Here are some interesting points that were brought up during both sides of the debate:

Children with first-degree relatives with Celiac Disease (parents and/or siblings) should be screened for Celiac Disease every 2-3 years in the absence of outward symptoms. Many “silent” Celiacs who think they feel “fine” prior to diagnosis will notice improvement on the GF diet. The presenters reminded us that 60% of newly diagnosed Celiacs have atypical symptoms.

There are many types of tissue transglutaminase (TTG) antibodies. Type 2 TTG antibodies can attack the placentas of pregnant women, type 3 cause the skin problem of dermatitis herpetiformis, and type 6 can attack the brain and nervous system. As an aside (from another talk during the ICDS), the commercially available assays in the U.S. test for Type 2 only!

There is conflicting information of the risks to silent Celiacs who do not go gluten free. One study in 2006 (Metzger, et al.) showed that untreated silent Celiacs have an increased risk of mortality and cancer over a 10 year period. But another study in 2009 (Lohi, et al) did not show an increase in cancer for this group. As with many areas, more research is necessary.

According to Dr. Troncone, it is not known if untreated silent Celiac Disease is associated with the development of other autoimmune diseases. He did state that going GF does not improve blood glucose control in patients who have both silent Celiac Disease and Type 1 diabetes.

Dr. Leffler presented research that shows that up to 50% of potential Celiacs will develop full blown Celiac Disease over a 5 year period and reminded us that TTG antibodies can cause harm even if there are no intestinal changes. He also stated that in order to be diagnosed with “potential” Celiac Disease that one must have an abnormally high TTG antibody level on at least 2 separate occasions (this is to rule out a false positive on the initial test).

I felt that the take home message from this lecture/debate was that those with silent and potential Celiac Disease should be on the GF diet, but that much more research is needed. Per my notes, they recommended that silent Celiacs should be GF, but it was not explicitly stated that potential Celiacs need to be GF. My concern is that many potential Celiacs may actually have full blown Celiac Disease that was not picked up on biopsy (see my previous ICDS post for information on how biopsies can be done incorrectly and that the damage from Celiac Disease can be missed). I will update all of my ICDS posts once I can get my hands on the power point presentations from the lectures, which I hope is soon! We were unable to take photos of the slides and although I tried to write as quickly as I could, I will add in key information that I may have missed.

Also, as a total aside, I am thankful to the anonymous reader who has nominated me for the WEGO Health “Geek Health Activist” of the year award. I have never been so proud to be called a geek in my entire life!

ID-10091069-1

Updates on Celiac Disease Screening and Testing from the 2013 International Celiac Disease Symposium

It’s been a busy three weeks since I attended the 2013 International Celiac Disease Symposium (ICDS) in Chicago and I have dedicated only two posts to the symposium thus far (as I was reminded by my friend last night). So, here is some more information for you. This will be post #3 of about 9 or 10 total.

On the first day of the conference, Dr. Benjamin Lebwohl from Columbia gave a lecture entitled “The Correct Diagnostic Approach.” Some of his bullet points on the diagnosis of Celiac Disease included the following:

  • At the current time, most algorithms for diagnosis use both blood tests (serology) and a small bowel biopsy.
  • The TTG IgA antibody is the blood test that is the most sensitive and specific for Celiac Disease. If a patient has a selective IgA deficiency (occurs in about 3% of the population), the deamidated gliadin peptide IgG (DGP IgG) can be useful for screening. The DGP IgA antibody is also more sensitive than the TTG IgA antibody in children under the age of 2.
  • The Celiac antibody tests are imperfect. In approximately 10% of Celiac patients, at time of diagnosis the antibody tests will be negative (normal) but there is still damage seen on biopsy. If these patients had only blood tests performed, their cases of Celiac Disease would be missed.
  • All patients with Irritable Bowel Syndrome (IBS) should be tested for Celiac Disease.
  • It is not feasible to screen all people for Celiac Disease because the positive predictive value (PPV) of the Celiac tests is too low. PPV refers to the percentage of patients with a positive test result who actually have a disease. He stated that if all people were screened, 2/3 of people with abnormal Celiac antibodies would actually not have Celiac Disease (too many false positives) .
  • Lastly, he reminded us that it is crucial that 4 to 6 biopsies be taken during endoscopy, as the damage from Celiac Disease can be missed if too few biopsies are taken. There are many people walking around who have Celiac Disease but were told that their small bowel biopsies were normal because not enough biopsies were taken. If you are interested in reading more about this, I discussed this in a recent post.

Later in the day, Dr. Enzo Bravi from Europe discussed rapid “point of care” tests for Celiac Disease.  There are several tests on the market that require only a few drops of blood and can give results in 5 to 10 minutes.  Simtomax and Biocard are two examples that are used in Europe and other parts of the world.  All of the rapid tests look for some combination of antibodies (TTG IgA, total IgA, DGP IgA and IgG, etc).  There are hopes that these tests will be especially useful in pediatric populations and in developing countries.  Dr. Bravi is currently researching if these tests can be used to assess compliance with the GF diet in Celiac patients who are already GF.   He emphasized that these tests are not intended to be used for the final diagnosis of Celiac Disease.  For more on the Simtomax tests, please see link.  I had an opportunity to briefly speak with Dr. Bravi during one of the breaks and learned that none of these tests are FDA approved for use in the U.S.  If/when they are approved,  I would love to be able to use them in a clinical research study!

Session 4 of the ICDS focused on the pathology of Celiac Disease.  The speakers were Drs. Marsh, Hart, and Bhagat.  We were reminded that small intestinal (duodenal) tissue biopsies are graded from Marsh Type 0 (normal) to Type 3 (villous atrophy and destruction).  Types 1 and 2, the intermediate lesions, have infiltration of tissues with white blood cells, which is called intraepithelial lymphocytosis (IEL). Type 2 also includes tissue hyperplasia, or thickening.

Type 1 lesions, with IEL only, can be seen in IBS and other causes of malabsorption.  If a patient has a Marsh Type 1 lesion in the duodenum and positive TTG antibodies, the diagnosis is either Celiac Disease or Crohn’s Disease.  If anti-endomysial antibodies are present, it is Celiac Disease, and if they are absent, it is Crohn’s Disease.

There are several other diseases that can cause villous blunting that is similar to that seen in Celiac Disease.  They include the following:

  1. Olmesartan associated enteropathy
  2. Common variable immunodeficiency (CVID)
  3. Crohn’s Disease
  4. Giardia infection
  5. Tropical sprue
  6. Autoimmune enterocolitis

CVID, an immunodeficiency, has a mean age of diagnosis of 35.  Two thirds of patients with CVID have increased IEL +/- villous atrophy on their biopsies.  Celiac antibody tests are often negative.  Patients with CVID have no improvement on the gluten free diet. This is one of the biggest red flags that CVID is a possibility for a patient.  CVID needs to be ruled out in cases of refractory (non-responsive) Celiac Disease.

Olmesartan is a medication used for high blood pressure (hypertension) that is in a category of drugs called ACE inhibitors. It can cause duodenal damage that is almost identical to that seen in Celiac Disease. Colchicine is another drug that can cause similar bowel changes.

The speakers emphasized that in patients with refractory Celiac Disease (that do not respond to the gluten free diet), #1-6 need to be excluded.

More information from ICDS to come, including what to do for those with “potential” Celiac Disease and nutrional aspects of Celiac Disease.  Thank you for both reading and being patient with me!

For additional information from the conference, please check out recent posts from both The Savvy Celiac  and Pretty Little Celiac who were official ICDS bloggers.

ID-10085666

What are medical students learning about Celiac Disease these days?

I’ve been wondering this for a while. I graduated from medical school 10 years ago, which makes me a relatively “young” doctor.  Although I did learn about Celiac Disease during my medical training, the image that I had burned in my mind was of a sickly child with a huge belly, diarrhea, and failure to thrive.  I do not recall seeing a single adult patient with it during my clinical years of medical school, outside of a patient with Celiac who came to one of our genetics lectures to share her experiences.  I vividly remember thinking that her gluten free life sounded horrible (sad, but true!)

Although I now work in a community hospital, I have a teaching appointment at a large, well-respected medical school which allows me to be able to interact with and teach medical students on occasion.  I recently worked with an exceptionally smart and motivated student who hung out with me for a day. Just for fun, at the end of our day together, I asked if she had ever heard of Celiac Disease.  She told me that she had learned about Celiac Disease during her pre-clinical years (first and second year).  I gave her a short quiz on what she had learned about Celiac Disease. Here are her answers:

What is Celiac Disease?  An autoimmune disease where the body produces an antibody to gluten and is unable to digest gluten.  Exposure to gluten leads to characteristic GI symptoms of bloating and diarrhea, and is also associated in some cases with dermatitis herpetiformis.

How is Celiac Disease diagnosed? Testing for the presence of TTG antibodies.

Have you seen a patient with Celiac Disease? If so, what were his or her symptoms?  Yes, it was a man with bloating, diarrhea, weight loss, and a rash of the upper extremities.

What is your best estimate as to the prevalence of Celiac Disease?  1 in 100,000

I thought that her answers were okay until I read the 1 in 100,000! Although these are the answers of only one medical student, who is only half way through her medical schooling, my impression is that students are still learning that Celiac Disease is a rare disease associated with digestive and skin symptoms only. I really hope that I am wrong, and I will report back as I further investigate this topic.

Are any of you in medical or nursing school right now? If so, would you be willing to share what you have actually learned about Celiac Disease in your lectures?

 

ID-10039017

“Celiac Disease Now”

Note: This is part 2 of several posts summarizing information discussed at the International Celiac Disease Symposium (ICDS) 2013 in Chicago 9/23-9/25. 

The introductory lecture of the clinical forum of the International Celiac Disease Symposium (ICDS) 2013 in Chicago last week was entitled “Celiac Disease Today: An Overview” given by Drs. Alessio Fasano and Peter Green.

Although the official slides and presentations from the symposium are not yet available for purchase, based on my notes the following topics were addressed during this opening session:

Celiac Disease involves both an innate and an adaptive immune system response to gluten. 1 in 133 Americans have Celiac Disease. The risk of Celiac Disease in 1st degree relatives of Celiac patients (parents, siblings, and children) is 1 in 22. The risk in 2nd degree relatives (aunts and uncles and grandparents) is 1 in 39.  Research has shown that the true prevalence of Celiac Disease has increased by 15% in the last few decades.  Most people with Celiac Disease (83%) are unaware that they have it…

Although the current “gold standard” for diagnosing Celiac Disease is to perform an endoscopy and small intestinal biopsy, Dr. Fasano did bring up the concept of the “4 out of 5” rule, in which some have proposed that Celiac Disease can be diagnosed if a patient meets at least 4 of the following 5 criteria:

  1. Adverse symptoms when gluten is ingested
  2. Elevated Celiac antibodies on serology (blood tests)
  3. An improvement in symptoms when gluten is removed from the diet
  4. Genetic markers (HLA DQ2 and/or 8, although he did mention that 1-2% of Celiacs are DQ2 and DQ8 negative)
  5. Abnormal small intestinal (duodenal) biopsy

Anti-TTG IgA antibodies are greater than 95% sensitive and 95% specific for Celiac Disease.  The DGP IgA antibodies have a sensitivity and specificity of greater than 90%.

No one is born with Celiac Disease and it can develop at any age. Celiac Disease involves a shift from gluten tolerance to an immune (autoimmune) response to gluten.  The current thinking is that in order to develop Celiac Disease, one must have a genetic predisposition, ingest gluten, and be exposed to a (yet to be defined) environmental factor. In order to figure out exactly what the environmental factor(s) are, researchers will need to follow a large cohort of children from birth and monitor them for the development of Celiac Disease.  We did learn later during the conference that this is actually being done as part of the “Prevent Celiac Disease Study” in Europe, which I will discuss in a later post (www.preventCD.com).

It is now believed that a change in the gut microbiome (bacteria) is involved in the pathogenesis and development of Celiac Disease.  Although our gut microbiomes are inherited from our mothers,  the composition of our gut bacteria is continually changing.  There has been some recent research showing that birth by c-section increases a child’s risk of Celiac Disease by 2-3x. During a normal vaginal delivery newborns’ digestive tracts are colonized by bacteria that they pick up from their mothers’ bodies during labor and delivery.  During a c-section this mother to infant transfer of bacteria does not take place.

There are over 70 clinical trials of Celiac Disease going on right now, many of which are currently enrolling subjects.  You can check out www.clinicaltrials.gov and search for “celiac disease” for more information.

Dr. Green stated that currently recognized gluten related disorders include Celiac Disease, gluten ataxia, dermatitis herpetiformis, wheat allergy, and non celiac gluten sensitivity (NCGS).  NCGS was discussed at the ICDS pre-conference (see my previous post for more details).  Celiac Disease can be differentiated from these disorders by the presence of intestinal inflammation and villous atrophy.  Based on a 2012 publication, only 17% of people with Celiac Disease have actually been diagnosed. Young men in the age range of 20-30 have the lowest rates of diagnosis.

Currently recognized risk factors for Celiac Disease include formula feeding, being introduced to gluten before 4 months of life or after 7 months of life, being born during the winter months, PPI (proton pump inhibitor, a type a reflux medication) use, and frequent respiratory infections during infancy.  Much of this information comes from Sweden, where there was an epidemic of Celiac Disease in children during the 1980s and 1990s which triggered much research and analysis.

We were cautioned of a few pitfalls in the diagnosis of Celiac Disease, many of which I will describe in more detail in future posts.  Some of the researchers have found that TTG (tissue transglutaminase) antibody testing from certain labs can be unreliable.  Likewise, some research has shown that only 35% of the biopsies performed during evaluations for Celiac Disease are done correctly. Most GI docs take only 2 samples of small bowel, despite the current recommendations that 4-6 samples be taken.

Although Celiac Disease is often associated with digestive symptoms, many patients do not have any symptoms at all (i.e. they are picked up because they are screened due to having a family member with Celiac).  Some of the most severe cases of Celiac Disease have been found in patients whose only symptom is anemia (low red blood cell count).  On the flip side, a 2009 study showed that only 51% of patients with symptoms of Celiac Disease were actually screened.

A few sort of depressing stats:

-only 20% of patients with Celiac Disease have adequate follow-up after diagnosis

-the average U.S. medical student learns about Celiac Disease for one hour during medical school (I can personally relate to this one!)

And things that I think everyone should know:

-If a patient has dermatitis herpertiformis (DH), then they have Celiac Disease. Dr. Green stated that if one has DH, there is no need for a small bowel biopsy.

-1st degree family members of Celiac Disease patients should be screened every 5 years.

-The Celiac Center at Beth Israel Deaconess Medical Center in Boston has a great new website called “Celiac Now.” Check it out here.

More ICDS information to come soon…Also, any questions are welcome in the meantime!

 

ID-10069040

Celiac Disease “Journal Club” 2013 Part 2

This is going to be a quick post, as I am getting ready to head to Cincinnati for a wedding, and then to Chicago for the International Celiac Disease Symposium 9/22-9/25. I look forward to being able to meet some of you in person at this conference, and to hear the experts, including Dr. Fasano, speak about the most recent research, recommendations, and guidelines regarding the diagnosis and management of both celiac disease and non-celiac gluten sensitivity.

Below are summaries of three recent journal articles that may be of interest. Part 1 of my Celiac “Journal Club” series can be seen here. Under each article summary statement I am including a link to some of my previous posts about relevant topics.

1. “2013 update on celiac disease and eosinophilic esophagitis.” Authors: Pellicano, R, et al. Published in Nutrients in Aug. 2013.

-authors reviewed 30 publications regarding celiac disease and eosinophilic esophagitis (EoE), a chronic inflammatory disorder of the esophagus which is on the rise. They found that the prevalence of EoE in subjects with celiac disease is 10x higher than the general population in the majority of the studies. They recommend that all children who get small intestinal biopsies for celiac disease diagnosis also get evaluated for EoE.

-for more information on the relationship between EoE and Celiac Disease, as well as an overview of the symptoms of EoE, please see my post from Jan. 2013.

2. “The rising incidence of celiac disease in Scotland.”  Authors: White, L, et al. Published in Pediatrics in Sept. 2013.

-researchers looked at the incidence of celiac disease in children in Scotland from 1990 to 2009. Overall incidence increased by 640% over this 20 year period, with the incidence of “atypical” celiac disease increasing by 1140%!

-of note, 51% of the children who were actively screened for celiac disease and found to have celiac disease had no symptoms at all. Active screening takes place if a child is in a “high risk” category for celiac disease, i.e. has a sibling or other first degree relative with celiac disease.

-for more information on the screening of children for celiac disease, and who should be screened, please check out my post from June 2013.

3. “Potential new mechanisms of placental damage in celiac disease: anti-tranglutaminase antibodies impair human endometrial angiogenesis.” Authors: Simone, N., et al. Published in Biol Reprod in Aug. 2013.

-the authors demonstrate that tissue transglutaminase antibodies seen in celiac disease damage the placenta by interfering with the development of crucial placental blood vessels.  This finding helps to explain why women with untreated celiac disease often have problems of infertility, miscarriages, and fetal growth restriction.

-I wrote about the topics of Celiac Disease and Pregnancy in Jan. 2013 (see link) and Celiac Disease and Infertility in Mar. 2013 (see link).

I anticipate returning from Chicago with a lot to write about on this page. I will also be making my conference tweeting debut (@PatientCeliac), so feel free to follow me for real-time updates. Lastly, if you will be attending, please reach out and let me know so that we can meet!

ID-10090197

Celiac Disease “Journal Club” 2013 Part 1

As some of you may have figured out, I love to keep up to date with the latest research regarding celiac disease and non-celiac gluten sensitivity (NCGS). My interest in research stems from the countless Journal Clubs that I participated in during my decade of medical training. Journal Club gives medical students, residents, fellows, and other trainees the opportunity to learn how to read, interpret, and critically review research articles. Although there are many things which I do not miss about medical training (especially the sleep deprivation), I do miss Journal Club.

I have created my own overview for you of some of the most interesting research articles about gluten-related diseases that have been published during the past few months. This is part 1 of 2.

1. “Clinical features and symptom recovery on a gluten-free diet in Canadian adults with celiac disease.” Authors: Pulido, et al. Published in the Canadian Journal of Gastroenterology in August 2013.

-Almost 6000 adults with Celiac Disease were surveyed regarding their symptoms of Celiac Disease and their recovery on the GF diet. Average age at diagnosis was 45 and average delay in diagnosis was 12 years.

-Conclusions: Although many subjects had a complete resolution of symptoms after 5 years on the GF diet, almost half reported continuing problems with migraines, lactose intolerance, constipation, itchy skin, and depression after being GF for 5 years. Women were less likely than men to report full recovery from symptoms, especially in the areas of abdominal pain, bloating, weakness, diarrhea, anemia, muscle cramps, constipation, migraine headaches, and swelling of the hands and feet.

2.  “Mucosal healing and risk for lymphoproliferative malignancy in celiac disease: a population-based cohort study.” Authors: Lebwohl, et al. Published in Annals of Internal Medicine in August 2013.

-Researchers found that 43% of adults with Celiac Disease in their study population had persistent villous atrophy on follow-up biopsies after being GF. These patients were found to have a significantly higher (3.5x) risk of lymphoma than the general population.

-Conclusion: Partially treated Celiac Disease is associated with cancer.

-For more information please check out this summary article from Columbia University.

3. “Antibiotic exposure and the development of celiac disease: a nationwide case-control study.” Authors: Marild, K., et al. Published in BMC Gastroenterology in July 2013.

-Main objective of the study was to examine the association between antibiotic use and the subsequent development of celiac disease by comparing subjects with celiac disease with matched controls (subjects without celiac disease).

-Antibiotic exposure was found to be associated with an increased risk of celiac disease, intestinal inflammation, and “potential” celiac disease (elevated Celiac antibodies on blood testing without any small intestinal changes seen on small bowel biopsy).

-Conclusion: The first study to show an association between antibiotic doses and the subsequent development of celiac disease. The authors postulate that an alteration of gut flora (ie. killing off of “good” bacteria) may play a role in the development of celiac disease.

4. “Markers of celiac disease and gluten sensitivity in children with autism.” Authors: Lau, N, et al. Published in PLOS One in June 2013.

-The researchers examined 37 children with autism and found that they had significantly higher levels of anti-gliadin IgG antibodies than children without autism (controls)

-Of the autistic children with anti-gliadin antibodies, most did not have either of the celiac genes (HLA-DQ2 and DQ8) and did not have other celiac antibodies (TTG IgA and IgG and DGP IgA and IgG). However, the majority of autistic children with anti-gliadin antibodies did have gastrointestinal symptoms.

-Conclusion: The anti-gliadin (gluten) immune response in autism involves a mechanism that is different from celiac disease.

5. “Colonic involvement in celiac disease and possible implications of the sigmoid mucosa involvement in its diagnosis.” Authors: Picarelli, A., et al. Published in the Journal of Clinical Immunology in July 2013.

-Researchers took samples of the colon (large intestine) of patients with Celiac Disease and evaluated the samples for celiac antibodies. They found that 75% of patients with Celiac Disease had anti-endomysial antibodies and 81% had anti-TTG antibodies in colonic tissue.

-Conclusion: The immune tissues of the large intestine are affected by Celiac Disease. In the future, large intestinal biopsies may be used in diagnosis.

Part 2 will be coming soon. Please feel free to comment and share articles related to celiac disease and/or non-celiac gluten sensitivity which you have found interesting as well. I would love to discuss.

ID-10094074

Women with celiac disease, we are not alone…

I have spent a good portion of this summer enjoying my time with my family, traveling, and not obsessing about celiac disease (which has led me to not write about it either!) Overall, I am comfortable with my gluten free household and life and have accepted my diagnosis. But, the other day, in part due to fatigue and in part due to accidentally eating a KIND bar with soy protein (soy is one of my other food intolerances and I feel like total garbage after eating it), I totally lost my calm. I found my 4-year-old, Gabby, eating a bag of Goldfish crackers when I picked her up from day camp. Instead of hugging and kissing her, and asking her about her day, like I should have, I began to obsess about celiac disease. Thoughts like, “Now I have to clean all of the gluten off of her face and I don’t have any napkins or wet wipes,” and, “Why the heck is she getting Goldfish crackers as a ‘healthy’ snack’?” and, “I cannot afford to get ‘glutened’ this week because I have to be able to work and function as a mom!” went through my mind. The encounter of picking up Gabby from camp quickly became “all about me,” which is one thing that I truly despise about this disease.

That very night I came across a timely article entitled “Everyday Life for Women with Celiac Disease” in which 16 Swedish women with celiac disease share their experiences. Amazingly, there has not been much published on this topic over the years, so I read it with much interest.

Here are some of the common themes that came up in the discussions in the study:

1. Celiac Disease affects a person’s entire life.

2. The experience of persistent fatigue, even after years on the gluten free diet.

3. Many women reported new signs and symptoms in other areas of the body, such as headaches, after starting the gluten free diet.

4. Anxiety about always having to plan ahead to have food to be able to safely eat and frustration at the lack of spontaneity associated with eating outside of the home.

5.  Reluctance to attend parties and social events due to fears of gluten contamination.

6. Feelings of sadness, vulnerability, anger, and hopelessness surrounding having to follow the gluten free diet. Many women felt lonely in their struggles.

I have experienced #1-6 more times than I can count, and although it has gotten easier with time, I continue to struggle to explain to others how careful I need to be with eating food that is not prepared in my own kitchen. Many of my friends and family members have had no idea how careful I need to be about cross contamination, and that I have to avoid foods that not only contain gluten, but that are prepared on surfaces and in equipment where cross contamination might occur.

Reading about the experience of these women with celiac disease made me feel much less alone, much less “crazy,” and I realized that my reaction to Gabby’s Goldfish crackers was probably not as severe as I had initially thought.  I have decided to be a little easier on myself and move on as I know that Gabby definitely already has. Also, when I pick her up today I’ll be better prepared with some wet wipes and paper towels to clean up the gluten crumbs!

Reference:

Roos, Suzanne, Hellstrom, Ingrid, Hallert, Claes, and Wilhelmsson, Susan. Everyday Life for Women with Celiac Disease. Gastroenterology Nursing. 2013. 36(4), p. 266-273.

First download from new camera (summer 2013) 325

Two Things

Thanks to another cancelled flight, I am apart from my family for one more night. I am desperate to see them and cannot put into words how much I miss them.

3 weeks ago we drove 1300+ miles to visit with family in Cape Cod and Boston. I flew back home to work a week ago and am flying back to meet them in Boston and then drive home with them (I would never make my husband do a 1350 mile road trip with 4 kids under 8 by himself!)  We are going to drive north into Montreal and then across northern Ontario to get home, which is going to be quite the 1350 mile adventure.

This quiet evening has given me the opportunity to run, read, and to reflect. I am grateful that I have been diagnosed with this disease, even though there are aspects of it that really stink.  If you haven’t read or heard, there was an article just published in the Annals of Internal Medicine which affirms that those with untreated Celiac Disease have a much higher risk of lymphoma (cancer) than the general population.  If you haven’t read the article, I encourage you to read this summary. I am glad that I am being treated with the gluten free diet and that I have come to the realization that I needed to make my entire household gluten free in order for my intestines to heal and for my symptoms to resolve. I am thankful for all of you who I have “met” and connected with through this blog over the last 8 months.  I am thankful that this disease has caused me to prioritize the nutrition of my family. If learning that untreated Celiac Disease causes cancer does not lead my family members, and others, to get tested for Celiac Disease, then I do not think that anything will. I want you to get tested because I do not want any of you to get lymphoma, not because I want to make your life harder by having to give up bread!

Over the past month I have had the opportunity to see many family members and friends who I have not seen for a while. I wanted to take this opportunity to thank all of you for being so supportive of my gluten free life and give a few examples of the love I have felt…

Mom: Thank you, thank you, thank you for having a cookout for us when we were visiting in July and having a GF spread for me and the kids (tons of fruit and veggies, tortilla chips, GF hot dog buns, ice cream bars, etc.) It was so wonderful to be able to eat everything at a BBQ without being worried about being sick.

Chan: Thank you for bringing your beautiful kids over and making blueberry mojitos for us to drink, and bringing me my own special crispy rice dessert! I hope that next time we can visit for a bit longer and get more adult time to catch up (and drink more Mojitos!)

Ashleigh: Thanks for introducing me to 2 ingredient (banana and egg pancakes) and for letting me visit with beautiful little Luca.

Carol: Thanks for making kick ass guacamole and buying pistachios galore the week in the Cape.  Thanks also for the adult only time, Zumba class with Bunny, and the re-introduction to Gordon Lightfoot.

Ali: Thank you for making an awesome lunch of chicken and mozzarella caprese salad, my absolute favorite salad, when we came to visit. Thanks also for all of the American Girl stuff for the girls.

Dan: Thanks a bunch for buying me my own stash of Celia beer when we hung out…it’s nice to have a new beer to add into the mix and I was so happy to see that Celia is portrayed as being a healthy female Celiac!

Colleen: Thank you for roasting up all of the leftover veggies for me and for basically feeding my kids for the entire week in the Cape so that I didn’t get sick from preparing their food!

Nana and Pop: Thanks for bringing all of the gluten free food down to the Cape for me, buying me and Claire sweet potatoes, taking care to make sure that the grill was clean before cooking for me on it, and for having an never ending stash of gluten free K cups at your house.

Grace, Tommy, Gabby, and Claire: Thanks for always reminding everyone that gluten makes your mommy sick and for going with me to Captain Frosty’s to get gluten free custard. I cannot wait to hug and squeeze and kiss all of you tomorrow!

Tom: Thank you for supporting me throughout this crazy journey, helping to calm me down when I’m acting a bit crazy (which is just once in a while, right?), and providing unconditional love.  I love you very much!

Happy August everyone! Hope to see some of you at the ICD Symposium in Chicago next month!

celia

patchwork-quilt-100160_640

The Intestinal Villous Blunting (Flattening) in Celiac Disease is often “Patchy”

Villi are the fingerlike projections of the small intestine where nutrient absorption takes place and are the location of Celiac Disease’s assault on the digestive tract.

Untreated celiac disease leads to blunting (flattening) of the intestinal villi that can be seen when a gastroenterologist performs an endoscopy with biopsy. Despite current controversy over whether or not an endoscopy is necessary for all cases of celiac diagnosis, it is still considered by many experts to be the “gold standard” for officially diagnosing Celiac Disease. I look forward to learning more about this moving target at the International Celiac Disease Symposium being hosted by the University of Chicago in September 2013 (see link).

Although in many cases of Celiac Disease the villous blunting is continuous throughout the small intestine, it has been increasingly recognized that the blunting/flattening can be patchy, and in some cases, localized to one specific portion of the small intestine called the duodenal bulb (see references). Thus, in many cases of Celiac Disease, totally normal areas of intestine alternate with diseased areas. Because of this, experts recommend that gastroenterologists take at least 3 to 4 biopsies, including at least one of the duodenal bulb, when evaluating a patient for Celiac Disease. If not enough biopsies are taken, the diseased portions of the small intestine may be missed (and hence, Celiac Disease not properly recognized). Since starting this blog last fall I have interacted with many people who get terribly ill from eating gluten, have many symptoms of Celiac Disease and have abnormal Celiac antibodies on blood testing, only to be told that they do not have Celiac Disease based on “normal” biopsies. I have also encountered one woman in which no biopsies were taken at all! I strongly suspect that some of these “gluten intolerant” people actually have Celiac Disease.

A group of researchers in Italy (Valitutti, et al.) have recently published the findings of a study in which they mapped the patchiness of villous blunting in 41 pediatric patients with Celiac Disease. 17/41 (41.5%) showed diffuse villous blunting throughout and 24/41 (58.5%) had patchy villous lesions. Of note, one child with Celiac Disease had villous blunting in the jejunum, the second portion of the small intestine, only. In most cases only the duodenum, the first portion of the small intestine, is biopsied, so had this child not had his jejunum biopsied for the study, his celiac changes would have been missed. I find this to be very significant, as he would have likely been labeled as being gluten intolerant, or having “Potential” Celiac Disease as opposed to having actual Celiac Disease….for more on Potential Celiac Disease, please see my previous post from March 2013.

In conclusion, if you are one of the gluten intolerant or gluten sensitive patients out there who had a “normal” biopsy (or are parents of one), I encourage you to obtain your biopsy results and check out how many tissue samples were actually taken from your small intestines. Check also to see if your duodenal bulb was evaluated. You may be surprised by what you find!

Also, if you are going to be attending the Celiac Disease Symposium in Chicago next month I would love to connect with you in person. Shoot me an email at thepatientceliac@gmail.com, or comment below. We are very fortunate to be having it be held in the U.S.A. this year and it will be a great opportunity to learn and network.

References:

1. Valitutti, F., et al. Mapping histologic patchiness of celiac disease by push enteroscopy. Gastrointestinal endoscopy. E-pub, ahead of print. June 2013.

2. Kurien, M., et al. Duodenal bulb biopsies for diagnosing adult celiac disease: is there an optimal biopsy site? Gastrointestinal Endoscopy. 2012. 75 (6): 1190-6.

3. Ravelli, A., et al. How patchy is patchy villous atrophy?: distribution of histological lesions in the duodenum of children with celiac disease. American Journal of Gastroenterology. 2010. 105(9): 2103-10.

ICDS 2013 Banner

1010174_4925974041132_668028260_n

Eating Gluten Free During a 311 km Ragnar Relay

“I have Celiac Disease. I am very hungry and need to be able to eat without getting sick. Can you help me?”  These were my words as I stepped into a chain restaurant called “Crabby Joe’s” in the eastern Toronto area.  I was one third of the way through running a Ragnar Relay in which my team of eleven ran 311 km from Cobourg, Ontario to Niagara Falls over the course of 30+ hours. The entire experience is worthy of its own blog post, and I hope to post a link to some of my other team members’ blogs.  For the sake of brevity, I plan to discuss the logistics of traveling and running this race strictly gluten free. This race took me away from home (and out of my comfort zone of eating safely gluten free at home) for four days.

To prepare for the race I packed a ton of shelf-stable food in my carry on bag. My stash consisted of Larabars, Zing Bars (one of my new favorite snacks, zingbars.com), GF almonds and cashews from nuts.com, rice cakes and individual packets of almond butter, 2 packets of Glutenfreeda instant oatmeal, and about 4 Go Picnic lunch boxes (www.gopicnic.com).  In the past I would have packed some sort of dried fruit and/or homemade trail mix, but I can no longer eat dried fruits and raisins since I now have a sulfite intolerance/allergy. Nuts.com is the only place where I have been able to find nuts that are not processed on shared equipment with wheat.

Once we arrived in Buffalo, NY, we stopped at Target, where we bought food and supplies for the race, including apples, bananas, clementines, snap peas, baby carrots, and blueberries. I also bought an additional 5 pack of peanut butter and chocolate Larabars. I am not sure why as I had about 20 Larabars in my carry on bag! We stopped for lunch at Chipotle where I had chips and guacamole.  Chipotle’s corn tortilla chips are prepared in a dedicated fryer, and they opened up a virgin container of guacamole for me.  I did not risk eating anything else because I have gotten sick from gluten cross contamination at fast food restaurants more times than I can count, especially in the first 6 months after diagnosis.

We ate at Trattoria Gusto in Port Hope, Ontario on Thursday night.  I had called ahead and discovered that the wife of one of the chefs has Celiac Disease.  I had a mixed greens salad with grilled chicken and butternut squash risotto that were both delicious. I have become a huge risotto fan since being diagnosed with Celiac Disease, as it is usually the one “safe” item on menus in Italian restaurants. In addition, they did have gluten free pizza and pasta options on their menu as well.

We stopped at a random diner for breakfast on Friday morning. Once I learned that the eggs and bacon were prepared in a separate area of the kitchen from the toast and pancakes, I indulged by eating fried eggs and 5 pieces of American Bacon!  This was fitting since my team’s name for the relay was “American Bacon.”

We never really ate lunch on Friday because we were running and then stopping to pick up and drop off runners and cheer people on.  Fresh fruits and Zing Bars and Larabars fueled me.  This lack of eating came back to bite me in the butt at dinnertime, hence my pathetic entrance into Crabby Joe’s while my teammates were eating BBQ at a restaurant that was clearly not gluten free. Once I expressed my hunger and desperation to be able to safely eat to the hostess, the manager asked me what I wanted to eat and within 20 minutes I had a dinner of chicken, a baked potato and steamed asparagus. They cooked the chicken fresh with salt, pepper, and oil in a clean pan, and prepared the rest of my food on clean surfaces that were free from contamination.  This was by far the best meal that I’ve eaten in a chain restaurant since being diagnosed with Celiac Disease in 2010, and I was so grateful for the help of the manager and kitchen staff. If you’re ever in the greater Toronto area and need a restaurant to eat gluten free at, check out Crabby Joe’s.

Breakfast Saturday morning consisted of fruit, coffee, and another Larabar and Zing Bar.  We bought some fresh strawberries from a fruit stand in Ontario, and then stopped at Frog Pond Farm organic winery while Amy, our team captain, was running the last 8 miles of the relay.  It was here that I had a Camino milk chocolate hazelnut bar, which I think may be the best chocolate that I’ve had in my entire life!

We met Amy at the finish line in Niagara Falls around 4:45 pm and we crossed the line together as a team.  We later grabbed dinner at Koutouki, a Greek restaurant that was a little bit off of the main strip.  The waitress who took care of our table was versed in gluten free dining. I had stuffed grape leaves as an appetizer and the chef was able to modify a stuffed chicken breast for me (omitting the sauce which is thickened with flour). Koutouki’s martinis are not too shabby either!

Breakfast on Sunday consisted of bacon, eggs, and fresh fruit at our hotel, and for dinner at the airport I had a Go Picnic boxed lunch while my team mates ate at The Anchor Bar at the Buffalo airport. The Anchor did have “gluten free” wings on their menu, but upon questioning I learned that they do not have a dedicated fryer for the wings. A reminder once again that gluten free items on menus are not always truly gluten free!

All in all, my Ragnar Niagara experience was phenomenal. I met a ton of new people, saw a beautiful part of North America, slept very little, and ate very well. I would do it again in a heart beat! If you have the opportunity to run a Ragnar, go for it!

5922_4926054803151_853911473_n-1

My fabulous team at the finish line (I am in the back row in the purple hat). A special thanks to Susan for letting me use her photos, Amy for being our awesome captain and leader, and the rest of my team for their patience, guidance, and support. I hope to see you all again!

girl with sandwich

Should Your Child be Screened for Celiac Disease?

I have four children, who are all at high risk for developing Celiac Disease. I was diagnosed with Celiac Disease 3 years ago, but have had symptoms since early childhood. My husband does not have Celiac Disease, but he carries one of the two main Celiac genes, DQ2. Due to my children’s risk, I have had their pediatrician screen them when they turn 4 years old with a Celiac panel (blood test with Celiac antibodies). My third child, Gabby, just turned 4 so she will have her first Celiac panel at her well-child visit in a few weeks, along with all of her four year old immunizations. I think I’ll try to get my husband to take her!

Since starting this page I have had a lot of people ask me if their children should be screened for Celiac Disease. The latest, evidence-based, recommendations for screening are as follows:

Children should be screened for Celiac Diease if they have any of the following symptoms:

  • short or underweight for age, especially if growth has slowed down
  • diarrhea that lasts for more than a few weeks
  • recurring constipation, abdominal pain, and/or vomiting
  • tooth problems called dental enamel defects
  • delayed puberty
  • iron deficiency anemia that does not respond to treatment with supplements

“High risk” children who belong to the following groups should also be screened (even if they have none of the above symptoms):

  • 1st degree relative (child or sibling) of someone with Celiac Disease
  • Type 1 diabetes
  • Down syndrome
  • Turner syndrome
  • Selective IgA deficiency
  • Williams syndrome
  • Autoimmune thyroid disease

The first step in screening is to have Celiac antibodies measured in the blood. For small children, especially those under the age of 2, it is important for the antibody tests to include the deamidated gliadin peptide, or DGP, antibody. Please see my post from April for more details. While most Celiac panels include TTG IgA and IgG antibodies and endomysial IgA and IgG antibodies, not all include the DGP antibodies.

The second step in testing, if Celiac antibodies are abnormal, and/or there are enough symptoms that Celiac Disease is suspected, is to have an endoscopy and biopsy. During the endoscopy a flexible tube with a camera on the end is inserted into the mouth, down the esophagus, and into the small intestine. Small pieces of the small intestine (biopsies) are obtained, which are evaluated by pathologists. In Celiac Disease, the small fingerlike projections (villi) of the walls of the small intestine are flat, or blunted, which impairs the ability of the body to absorb essentials vitamins and nutrients.

In the absence of symptoms, we are having our kids have Celiac antibody tests every two years or so starting at the age of 4. If any of them develop overt symptoms of Celiac Disease and/or have abnormal antibodies, we will go the route of having an endoscopy and biopsy done to be able to have a firm diagnosis of Celiac Disease. Although we keep a strictly gluten free household, for my sake, as I am very sensitive to any gluten cross-contamination, we do allow our older kids to eat gluten outside of our home. This enables them to have a small “dose” of gluten in their systems on a regular basis. We feel this is important because it enables us to monitor them for symptoms when they do eat gluten and will enable their Celiac blood tests to be as accurate as possible. One of the most common causes of falsely negative Celiac antibody tests is that patients are already gluten free when their tests are performed.

For more information on Celiac Disease testing I recommend that you check out the National Foundation for Celiac Awareness and the University of Chicago Center for Celiac Disease Center websites.

Reference: Patient information: Celiac disease in children (Beyond the Basics). Authors Ivor D Hill, MD and Anne Roland Lee, MSEd, RD, LD; Section Editor William J Klish, MD; Deputy Editor Alison G Hoppin, MD. Literature review current through: May 2013. This topic last updated: Dec 3, 2012. www.uptodate.com.

Coeliac_path

Nonresponsive Celiac Disease

Nonresponders are the 5% of Celiac patients who have either persistent symptoms and/or abnormally high Celiac antibodies after two years on the gluten free diet.

According the most recent medical review in the “Up to Date” database, there are 5 main categories of nonresponders to the gluten free diet:

  1. Patient is continuing to eat gluten. This is the most common cause of persistent symptoms. This can be on purpose (i.e. taking a little bite of a gluten containing food every once in a while) or accidental (i.e. not realizing that a child is nibbling her wheat containing Playdough at school).
  2. Patient doesn’t actually have Celiac Disease.  For example, elevated serum antigliadin IgA antibodies may be a false positive. Small intestinal villous blunting may be caused by any of the following: hypogammaglobulinemia, acute infectious gastroenteritis, lymphoma, Crohn’s Disease, and/or a milk protein intolerance.
  3. There is a second disease present, in addition to Celiac, which is causing symptoms. Lactose intolerance, irritable bowel syndrome, small bowel bacterial overgrowth, pancreatic insufficiency, and microscopic colitis can all lead to digestive symptoms in patients with Celiac Disease. I recently wrote about having the dual diagnosis of Celiac Disease and Irritable Bowel Syndrome (see link).
  4. Refractory sprue is Celiac Disease which has never improved, or recurs after a period of “remission.”  It usually needs to be treated with steroids or other drugs that suppress the immune system, as it can lead to #5.
  5. Ulcerative jejunitis and/or intestinal lymphoma. Patients with ulcerative jejunitis have symptoms of malabsorption, fatigue, loss of appetite, weight loss, abdominal pain, diarrhea, and fever despite being on a gluten-free diet. Small bowel obstructions may occur.  Lymphomas have similar symptoms to ulcerative jejunitis, but may also be associated with fevers and abdominal masses.

The bottom line is that If you do not feel significantly better after two years on the gluten free diet, you need to work with your doctor to figure out the reason why. Untreated refractory sprue, ulcerative jejunitis, and lymphoma can lead to death. This is yet another reason to recommend screening to our family members…and if any of my 4 siblings are reading this, yes, you need to get tested or I will continue to badger you about this for this rest of your lives!

References:

1. Cleveland Clinic Center for Continuing Education.  “Celiac Disease and Malabsorptive Disorders.” By J. Wakim-Fleming.

2. “Management of Celiac Disease in Adults.” By Ciclitira, P.J.  UpToDate, April 10, 2013. www.uptodate.com.

ID-100170578 (1)

“Up to Date” Management of Celiac Disease in Adults

“Up to Date” is an online medical database for physicians and other practitioners.  I use it almost every day when I am at work to get a brief overview of the most recent evidence regarding the diagnosis and management of my patients’ problems.

I just reviewed the most recent “Up to Date” highlights on the management of Celiac Disease in adults (published April 10, 2013). Here are some of the highlights:

There are 6 key elements in the management of Celiac patients (note mnemonic CELIAC):

  1. Consultation with a skilled dietician.
  2. Education about the disease.
  3. Lifelong adherence to a gluten free diet.
  4. Identification and treatment of nutritional deficiencies.
  5. Access to an advocacy group.
  6. Continuous long-term follow-up by a multidisciplinary team.

I highlighted #4 because I think that it is in important one to discuss and a reminder that the management of our disease is a bit more complicated than just eating gluten free foods.

The authors suggest that newly diagnosed patients should have blood work done 4 to 6 weeks after starting the gluten free diet, which should include a CBC (complete blood count, to evaluate for anemia), folate and vitamin B12 levels, iron studies, liver chemistries, and Celiac antibody levels.  In most cases, TTG (tissue transglutminase) IgA levels should decrease to normal within 3 to 12 months of going gluten free.  The authors reiterate that the most common cause of persistently elevated celiac antibodies is continued exposure to gluten (whether intentional or not).

Although the authors still recommend a repeat endoscopy and small bowel biopsy 3 to 4 months after going gluten free, they admit that this is debatable.  An increasing number of physicians will only repeat the biopsy for patients with persistent symptoms after going gluten free.

“Nonresponders” are patients who have persistent symptoms and/or elevated antibodies and/or abnormal small bowel biopsies after 2 years on the GF diet.  I plan to discuss this topic in further detail in an upcoming post.

The authors recommend monitoring for specific nutritional deficiencies which are associated with Celiac Disease, including the following: iron, folic acid, calcium, vitamin D, thiamine, vitamin B6, vitamin B12, magnesium, zinc, copper, and selenium, especially at the time of diagnosis. This is pretty much in line with the recommendations from the University of Chicago Celiac Disease Center.

Patients should be evaluated for bone loss using a DEXA scan at time of diagnosis and at one year intervals. As an aside, I was unable to get my own insurance to cover this for me, and my out of pocket quotes ranged from $650 to $800. I am going to have to start to pick this battle again soon.

Family members should be screened.  The authors quote that 5-11% of first degree relatives (parents, siblings, children) will also have Celiac Disease. This is quite a bit higher than some of the other estimates which I have seen.

A few things in this article which I had never heard before:

-  It is normal for women to experience breast tenderness in the 1st 3 months after going gluten free….

- Gluten challenges in children with Celiac Disease may increase the risk of the development of additional autoimmune disorders, such as type 1 diabetes…

- Improvement in dermatitis herpetiformis may not occur for 6 to 12 months after going gluten free…

I just tried to remember what the CELIAC mnemonic stands for, and failed miserably, so I am going to go to sleep instead.  Thanks for reading and good night!

Reference:

“Management of Celiac Disease in Adults.” By Ciclitira, P.J.  UpToDate, April 10, 2013. www.uptodate.com.

CFS

Chronic Fatigue Syndrome and Celiac Disease

I recently did an online continuing medical education activity on Chronic Fatigue Syndrome (CFS).  This is a diagnosis which I never see in my patient population, so I found it interesting to learn about.

According to the presentation, CFS is severe fatigue that persists for at least six months and results in a significant decrease in activity. The fatigue occurs in combination with at least 4 of the following symptoms on a regular basis: joint pain, impaired memory and/or concentration, enlarged lymph nodes in the neck, unrefreshing sleep, sore throat, muscle pains, and headaches.  CFS is a diagnosis of exclusion, which means that other causes of symptoms need to be ruled out, such as an underactive thyroid gland, before a diagnosis can be made.

As soon as I read this info, the first thought that went through my mind was how similar the CFS symptoms seemed to how I would feel if I had to go back to eating gluten again.  Joint pains, “brain fog,” fatigue, and enlarged lymph nodes were all chronic problems which I experienced in the months before my Celiac diagnosis.

The educational activity included 3 case reports of real patients with chronic fatigue syndrome. The third report described a 52 year old woman with Chronic Fatigue Syndrome. She was previously healthy, but developed fatigue and chronic pain following a trip to Asia.  She did have a past medical history of depression, high blood pressure, and environmental allergies.  Her physical exam was normal outside of having some fibromyalgia trigger points (these are areas of the body which are tender when palpated).  The patient had low Vitamin D levels, but her thyroid function, iron levels, and autoimmune screening tests were normal. She was started on Vitamin D supplements and began psychological therapy, with minimal improvement in her chronic fatigue symptoms.  Since her Vitamin D levels remained low, despite supplementation, she was tested for Celiac Disease.  She did have Celiac Disease, and she had an almost total resolution of her symptoms of CFS within 6 weeks of going gluten free.

The bottom line is that you or a loved one have been diagnosed with chronic fatigue syndrome, please make sure that Celiac Disease has been excluded.  I tried to search the medical literature for information linking CFS with non-celiac gluten sensitivity, but in usual fashion, there has been no research looking for a link between the two problems.

References

“A Case Based Approach to Chronic Fatigue Syndrome.” Power Point presentation moderated by Anthony Komaroff, MD, Professor of Medicine, Harvard Medical School. Released April 19, 2013 on http://www.medscape.org/viewarticle/782106?src=wnl_cme_revw.

Centers for Disease Control. Chronic Fatigue Syndrome (CFS). Accessed 5/12/2013. http://www.cdc.gov/cfs/index.html.

Chronic fatigue syndrome: oxidative stress and dietary modifications. Logan ACWong C. Altern Med Rev. 2001 Oct;6 (5):450-9.

ID-10013871

So you just found out that you have Celiac Disease….now what?

This post is in honor of all of us whose only advice was to “eat gluten free” after diagnosis!

1. Cry. Be angry. Complain. Mourn the loss of gluten from your life. You will never be able to eat pasta, pizza, chocolate chip cookies, or drink beer again. Feel sorry for yourself. Cry and yell some more. Get it all out, emotionally, at the beginning. FYI, I was so angry and in denial at first that I ate a whole sleeve of Thin Mint Girl Scout cookies and then cheesy pizza bread sticks within a 24 hour period right after my testing was complete…the effects on my body were so horrible, that I was able to then go gluten free and never look back (I just wish that I been smarter about choosing my last gluten-containing foods).

2. Learn about which foods contain gluten. There is a great list on the Living Without Magazine website (see link). Remember that you can never eat any of the following again: wheat (einkorn, durum, faro, graham, kamut, semolina, or spelt), rye, barley, triticale, malt, malt flavoring, and malt vinegar. Get used to reading ingredient labels and calling companies to inquire about gluten in foods and products. Two of my favorite lists come from the page www.withstyleandgraceblog.com:

Common sources of gluten

gf safe list

3. Purge your kitchen, bathroom, and medicine cabinet of gluten. You will give away/throw away more than you could ever imagine.  Gluten Free Makeup Gal’s website can help with cosmetics and www.glutenfreedrugs.com can help you to find out if gluten is lurking in your medications.

4. Get copies of your Celiac tests (antibodies, genes, pathology results). Read through them, learn from them, and share them with your family members who may need to be tested.

5. Find reliable sources about Celiac Disease and sign up for internet newsletters, Facebook pages, etc. My two favorites are the National Foundaton for Celiac Disease Awareness (www.celiaccentral.org) and the University of Chicago Celiac Disease Center (www.cureceliacdisease.org).

6. Do not give in to the urge to replace all of the foods you threw away (pastas, breads, salad dressings, etc.) with gluten free versions. Try one or two gluten free products out a week, as many of these foods are very expensive, may not taste good, and contain a lot of sugar and empty calories. Focus on eating a lot of whole foods (fruits, veggies, lean meats, fish, potatoes, etc) in the first few months if you can.

7. Explore shopping for GF foods online, as you may be able to save quite a bit of money. I’ve been able to order flours and mixes, i.e. Bob’s Red Mill, for almost 50% off what I would have paid at my local grocer.

8. Find a few “go-to” meals and snacks for when you are time pressed but need to be able to safely eat, i.e. Larabars and KIND bars.

9. Find a support group, whether it be it a local group or online. I just joined a fabulous one that was started by Chrissy from “Glam Without Gluten” (see link).

10. Discuss whether or not you need supplements with your doctor or practioner. A lot of us are anemic and/or Vitamin B12 deficient in the beginning. It is important for us to have our Vitamin D levels and our thyroid function monitored. There is emerging information on the role of altered gut flora (bacteria) in inflammation of the digestive system, so you may want to consider a probiotic as well (see my post on probiotics for more details).

11. Encourage your family members to get tested. First degree family members (parents, siblings, and children) have a 1 in 22 risk of also having Celiac Disease. Second degree family members (aunts, uncle, grandparents) have a 1 in 39 risk.

12. Expect a change in how you socialize. Gone are the days when you can freely eat and drink whatever you’d like at every party, potluck, wedding, etc. Some people will go out of their way to accommodate you, and others won’t. Some will care about your diagnosis, and others won’t (and it will be difficult to predict who will care and who won’t). You will feel “left out” at least some of the time. Get used to bringing your own food and snacks wherever you go. I always bring a GF item to every social gathering I attend, so that I am assured that there will be one food that is safe for me to eat.

13. Take care of your body. Run, walk, do yoga, meditate. Use your diagnosis as an opportunity to take charge not only of your diet, but your overall well-being. Once I was gluten free, I was able to run again after years of not having the endurance to run more than 2 miles.

14. Cry. Be angry. Complain. There will be good and bad days at first, but with time, the good days will outnumber the bad. It will get easier, I promise!

One of my favorite reminders to take care of myself:

246568_539409512748465_898225145_n

ID-10012120

Celiac Disease and the Thyroid Gland

If you have Celiac Disease, it is important that you know a bit about your thyroid gland, as you are at a high risk of autoimmune thyroid disease. Experts estimate that between 8 and 12% of people with Celiac Disease have, or will eventually develop, problems with their thyroid gland. Conversely, between 3 and 5% of people with autoimmune thyroid disease will develop Celiac Disease. I was diagnosed with Hashimoto’s Disease (hypothyroidism) in 2003, seven years before my Celiac diagnosis.

The thyroid gland is a butterfly-shaped gland that is present in the neck region, just under the region of the “Adam’s apple,” which is made up of two lobes (see diagram).

Illu_thyroid_parathyroid

Our thyroid glands secrete hormones that regulate metabolism, play a role in the growth and development of our bones and muscles, and impact brain and heart function. Thyroid gland dysfunction can lead to a rapid decline in health. Prior to my diagnosis with Hashimoto’s Disease, I had a 4 to 6 month history of overwhelming fatigue, dry skin, puffiness around my eyes, hair thinning, mental sluggishness, and feeling cold all of the time. I was about to scan and put in a photo of myself in the weeks leading up to my diagnosis, but I look so atrocious that I did not want to scare any of you. It is available upon request!

In Hashimoto’s Disease, the body makes auto-antibodies which lead to thyroid inflammation and destruction, which in turn causes the the thyroid to be under-active (also called hypothyroidism). Hashimoto’s is the most common autoimmune thyroid disease that is associated with Celiac Disease. Common symptoms associated with hypothyroidism include lethargy, depression, muscle cramps, constipation, dry skin, cold intolerance, and/or weight gain. The treatment for hypothyroidism is to take synthetic thyroid hormone, which is called levothyroxine. The brand name for levothyroxine is Synthyroid.

If you are started on levothyroxine, it is important to have your thyroid hormone levels checked frequently, so that your dose can be adjusted as needed. Pregnancy, the postpartum period, lactation, menopause, and other events associated with hormonal changes can also effect the thyroid gland, so it is important to have your thyroid hormone levels monitored closely during these times.

Once I went gluten free, my levothyroxine dose decreased from 150 mcg/day to 125 mcg/day. From the reading that I have done, this is not unusual, and many Celiacs experience a need for less thyroid hormone once off of gluten. However, it is very unusual for hypothyroidism to ever totally resolve. This means that if you are diagnosed with Hashimoto’s Disease, you should anticipate being on thyroid hormone replacement therapy for the rest of your life.

A few other things which I have learned about levothyroxine: 1. Make sure to take it on an empty stomach (I take mine first thing in the morning, about 30 to 45 minutes before breakfast), 2. To take separately from vitamin and mineral supplements, as some can interfere with its absorption, and 3. Make sure that the levothyroxine which you are taking is gluten free.  I have been taking generic levothyroxine manufactured by Lannett since October 2012 without any issues. www.glutenfreedrugs.com is a great resource to check out the GF status of drugs and supplements.

Grave’s Disease is the most common cause of hyperthyroidism, or overactive thyroid. In this disease, auto-antibodies stimulate the thyroid gland to produce an excess of hormones. Hyperthyroid symptoms are the opposite of those seen in Hashimoto’s Disease and include weight loss, elevated body temperature, irritability, tremors, heart palpitations, and insomnia. Treatment options for Grave’s Disease include antithyroid medications, radioactive iodine, and surgery. For more on Grave’s Disease, please see the following link (taken from the womenshealth.gov website).

The main test used to screen for thyroid problems and monitor thyroid function is called a TSH (short for thyroid stimulating hormone). In hypothyroidism, the TSH is too high, and in hyperthyroidism, the TSH is too low. In most cases test results should be available within 24 hours of having blood drawn. T4 and T3 levels are also monitored closely during diagnosis and treatment.

My hypothyroid symptoms improved dramatically within one week of starting on Synthroid after my diagnosis with Hashimoto’s Disease. I urge you to have your TSH checked if you or a loved one are experiencing any unusual symptoms which may be due to thyroid dysfunction.

The bottom line is that if you have Celiac Disease, you need to have your thyroid function monitored, and if you have autoimmune thyroid disease, you should strongly consider being screened for Celiac Disease, especially if any concerning symptoms develop.

For more information, please check out the following links:

1. Celiac Disease and Autoimmune Thyroid Disease. Ch’ng, C., et al. Clin Med Res. 2007; 5(3): 184-192.

2. “Celiac Disease, Thyroid Disease Often Found Together. Two Autoimmune Disorders Could Share Common Trigger.” By Jane Anderson, About.com Guide; updated January 19, 2012.

3. “Celiac and the Thyroid.” NFCA website: www.celiaccentral.org. Accessed 04/23/2013.

4. Prevalence of thyroid disorders in untreated adult celiac disease patients and effect of gluten withdrawal: an Italian multicenter study. Sategna-Guidetti C, Volta U, Ciacci C, Usai P, Carlino A, De Franceschi L, Camera A, Pelli A, Brossa C. Am J Gastroenterol. 2001 Mar;96(3):751-7. See link.

ID-10044135

Update on Celiac Disease Screening in Infants and Toddlers

There are multiple reasons why a young child may need to be evaluated for Celiac Disease. The most obvious reason is if he or she has symptoms, such as chronic diarrhea, poor growth, and/or anemia. Other reasons include having a first degree relative (parent or sibling) who has Celiac Disease or having another autoimmune disorder, such as Type 1 diabetes.

The main blood tests to screen for Celiac Disease are tissue transglutaminase IgA (TTG IgA) antibodies and endomysial IgA (EMA IgA) antibodies. These tests are highly sensitive, which means that if the tests are negative, Celiac Disease can be ruled out most of the time. The problem with using these tests in infants and toddlers is that the sensitivity of these tests is much lower for children under the age of 2 than it is for older children and adults. Some believe that this is because young children with Celiac Disease have not had enough time to develop TTG and EMA IgA antibodies which can be measured. Needless to say, there are probably many toddlers with Celiac Disease who are walking around undiagnosed because they did not have elevated TTG and/or EMA IgA antibodies when they were tested.

Deamidated gliadin peptides (DGPs) are a new test for antibodies against gliadin and are being used with increased frequency for screening for Celiac Disease in the U.S. and Europe. A group of Italian researchers recently studied the utility of using DGP IgG antibodies to screen for Celiac Disease in children under the age of 2. They found that 100% of children under the age of 2 with biopsy-proven Celiac Disease had abnormally high DGP IgG antibodies on blood testing. They also found that DGP antibodies were abnormally high in 4 toddlers who had malabsorption (diarrhea) but who did not have a biopsy consistent with Celiac Disease. One of the 4 children with an abnormal DGP did have mild villous blunting and eventually developed Celiac Disease. The other 3 children with diarrhea and elevated DGPs all had the genes that predispose to Celiac Disease. They plan to follow these 3 children closely for the development of Celiac Disease. The researchers also found that DGP levels correlate very well with the extent of damage on the duodenal biopsies of the children with Celiac Disease and postulate that in the future, children with markedly elevated DGP antibodies may not need to be biopsied for diagnosis with Celiac Disease.

Out of curiosity, I went to the internet sites of some of the major labs that perform Celiac Disease blood screening tests. Labs which DO include DGP IgG antibodies on their celiac panels include Prometheus, Labcorp, ARUP, and Mayo Medical Labs. Labs which DO NOT include DGP IgG antibodies on their celiac panels include Kimball Genetics and Quest Diagnostics (as of 4/17/2013).

If you suspect that your young child may have Celiac Disease, but he or she did not have positive antibodies, it may be helpful to find out which lab their blood was sent to so that you can learn whether or not DGP IgG antibodies were part of the testing.  I recommend that you discuss any concerns with your child’s physician.

References:

1. Antibodies to deamidated gliadin peptides: an accurate predictor of celiac disease in infancy. Amarri, S., et al. J Clin Immunol. Published online 4/5/2013.

2. ARUP Consult. A Physician’s Guide to Laboratory Test Selection and Test Interpretation. Celiac Disease. www.arupconsult.com/assets/print/CeliacDisease.pdf.

3. Screening for celiac disease in average-risk and high-risk populations. Aggarwal, S., Lebwohl, B, and Green, P. Therap Adv Gastroenterol. Jan 2012; 5 (1): 37-47.

Courtesy of www.wholeliving.com

Socializing and Socca Bread

I was recently reminded of how socially isolating Celiac Disease can be.  I attended a day long volunteering orientation during which a complimentary lunch of sub sandwiches and cookies was provided for attendees. I was not surprised by this, and, as usual, packed and brought a lunch from home. I am so far into this whole Celiac thing that I was not bothered by this at all.  The two women sitting closest to me at the orientation were curious as to why I brought own lunch when we knew ahead of time that a free lunch was going to be provided. I went through the whole, “I have Celiac Disease, so I get very sick if I eat gluten,” explanation for the umpteenth time. Again, not a big deal, and I am always happy to educate others about gluten-related illnesses.

When I finished my lunch I grabbed my phone to check my emails. The first 3 emails I read were the following:

1. An invitation to a spaghetti and garlic bread benefit dinner for a local homeless shelter.

2. A reminder that my upcoming book club is at a cheesecake restaurant (I have been there many times and there is nothing on the menu I can eat and no “carry ins” allowed).

3. A local running club invitation to an upcoming ”flatbread and beer” 5K fun run.

This string of emails was a quick wake-up call that those of us with Celiac Disease (1% of the population) are a small minority, that we truly live in a food-based culture, and a reminder that I used to take similar social events totally for granted back when I could attend them.

I fortunately, just this week, came across a recipe for socca bread, a French, chickpea flour-based flatbread which is similar to Italian farinata.  It is gluten free, dairy free, cheap, easy to make, and tastes great. I found the recipe on the website www.thekitchn.com. I used the oven method to make it, as I am ashamed to admit that I do not own a cast iron skllet, and I used Bob’s Red Mill Garbanzo Bean Flour. I am not ashamed to admit that I ate the entire flatbread in less than a day!

Ingredients

1 cup (4 1/2 ounces) chickpea flour
1 cup (8 ounces) water
1 1/2 tablespoons extra-virgin olive oil, plus more for the pan
1/2 teaspoon salt
Optional seasonings: 1 tablespoon chopped fresh herbs (rosemary, thyme, oregano), 1-2 cloves minced garlic, 1/8-1/2 teaspoon spice (chili powder, cumin, smoked paprika, za’atar)

Equipment

10-inch cast-iron skillet, pie tin, or other metal baking dish
Spatula
Knife

Instructions

Makes 1 thick 10″ pancake or 2 thin 10″ pancakes (recipe can be multiplied)

1. Prepare the Chickpea Batter – Whisk together the chickpea flour, water, olive oil, and salt in a small bowl. Let rest for 1/2 hour to 2 hours to give the flour time to absorb the water.

2. Heat the Broiler and the Pan – Set an oven rack six inches below your oven’s broiler and turn on the broiler. Set a cast iron skillet or other baking dish on the rack to warm for five minutes.

3. Pour the Batter – Remove the skillet from the oven using oven mitts. Add a teaspoon or so of olive oil and swirl to coat the bottom of the pan. Whisk the chickpea batter quickly and then pour half into the hot skillet (or all if making a thicker pancake). Tilt the pan so the batter coats the entire surface of the pan.

4. Broil the Socca – Broil for 3 to 5 minutes, until you see the top of the socca begin to blister and brown. If you find the top browning before the batter is fully set, move the skillet to a lower oven rack until done. The socca should be fairly flexible in the middle but crispy on the edges.

5. Slice and Serve – Use a spatula to work your way under the socca and ease it from the pan. Slice it into wedges or squares, sprinkle with salt and pepper, and drizzle with a little good olive oil. Repeat with any remaining batter.

Socca is best if eaten immediately after baking while still warm, but can be refrigerated and re-toasted for up to a week.

Additional Notes:

To Bake in the Oven: Heat the oven to 450°F and pre-heat the baking dish for 5 minutes. Bake the socca for 8-10 minutes, until it’s cooked through, then run it under the broiler to blister the top.

To Bake on the Stove Top: Film a pan with oil and set over medium-high heat. Pour in the socca batter. After about 3 minutes when the edges are firm, gently lift the pancake and flip it. Cook on the other side for another 2 to 3 minutes, until both surfaces are dry and beginning to brown.

I plan on making socca often, and sharing it with many. I may even have my own socca bread party so that I can actually socialize and eat at the same time. I hope you enjoy it as much as I did.

Disclaimer: The socca bread which I made looked nowhere near as pretty as the socca bread photo which I found on www.wholeliving.com. Their website also has a few different recipes and suggestions for socca bread preparation.

Sun-dogs-in-South-Dakota-photo-by-Joe-Unterbrunner

Sun Dogs, Celiac, and Gratitude

The sun was setting as I was driving to meet a friend for dinner last night, and I noticed that there was what looked like a multi-colored beam of light going almost all the way around the sun. I was so enthralled with staring at it that I missed my exit twice! When I got home I searched the internet and found that the phenomenon, called a parhelion (plural is parhelia), is due to atmospheric ice crystals which act like giant prisms. When the beams are not totally connected, they are called “sun dogs.”

My friend and I shared a fabulous meal and as I drove home I reflected on how grateful I am for my family, friends, faith, health, and the foods and beverages that I can (and do) eat and drink.

Here is my list of foods I am thankful I can eat (in no particular order):

fruits (apples, berries, clementines, grapes, peaches, melons) • vegetables (kale, spinach, sweet peas, tomatoes, eggplant, zucchini) • chocolateeggs (and bacon) • fish, shrimp, and non-processed seafood • fresh squeezed lemonade • aged cheese • meats such as chicken, pork, lamb, and lean beef • sweet potatoes, squash, and yams • Jelly Bellies • homemade chocolate, cranberry scones (adapted from this fabulous recipe) • popcorn and kettle corn • Against the Grain baguettes • green, leafy salads • all types of nuts (as long as ordered from nuts.com) • GF oats and oatmeal • gelato • corn tortillas and many Mexican foods • organic wine • chickpeas, rice, and other beansfresh herbs like basil, cilantro, and rosemary • GF Thin Mint cookies from Happy Bellies Bake Shop

I will leave you with the Shin Buddhist Food Prayer (in Japanese and English):

Before meals recite: Ita Da Ki Masu. I take this nourishment in gratitude (to all beings).

After meals recite: Go Chi So Sama. Thank you in deepest gratitude (to sustain my life).

Thank you for reading! What foods are you thankful to be able to eat?

ID-10087293

“Potential” Celiac Disease

I celebrated the 3-year anniversary of my Celiac diagnosis by attending a Celiac support group meeting in a nearby city. I was a bit hesitant to attend, as my initial experience at a Celiac support group meeting in 2010 was nothing short of a disaster (probably worthy of a blog post in itself, but in short, involved the woman sitting next to me eating a gluten-rich Subway sandwich and chocolate chip cookies throughout the meeting and getting her crumbs on me when she coughed.)

Despite my reluctance, I am grateful that I gave this other support group a chance. The guest speaker was a Gastroenterologist who is also board-certified in Integrative Medicine, so he seemed to have a true understanding of the effect of nutrition on our bodies’ healing.  He presented top notch information on Celiac Diease, and as he spoke I scribbled notes on a manila folder. Upon reviewing my chicken scratching, the phrase “Potential Celiac Disease” jumped out at me because it is a term that I have heard of but did not know much about.

Potential Celiac Disease (PCD) is diagnosed when a patient has abnormally elevated TTG IgA and Endomysial (EMA) antibodies on blood screening tests (the 2 main celiac antibodies) but normal bowel mucosa on biopsy. There is no evidence of the villous blunting seen in Celiac Diease (CD).  PCD often pops up when people who are at high risk for celiac disease are screened, such as first degree relatives of Celiacs, Type 1 diabetics, and/or patients with other autoimmune diseases. Many patients with PCD have no symptoms and do not feel ill from eating gluten. It is essential for the Celiac screening to be done while a patient is still on a gluten-containing diet. If a person is already gluten free when tested it is difficult to tell if the positive celiac antibodies and normal biopsies are from PCD v. full blown CD which is already being treated.

There is a lot of controversy over what to do if a patient is diagnosed with PCD. Some experts believe that if Celiac antibodies are elevated, that one should go gluten free, even in the absence of symptoms. Others believe that asymptomatic potential Celiacs should continue on a gluten containing diet, with close monitoring and follow-up of with small bowel biopsies at regular intervals. The rational behind this 2nd line of thought is that a lot of patients with PCD may never actually go on to develop full CD.

Unfortunately, Potential Celiac Disease has been so under-researched that we really don’t have good information on what percentage of “Potential” Celiacs become actual Celiacs.

A group of researchers in Italy recently studied 47 patients who were diagnosed with PCD. They found that those with PCD did not differ from those with CD in terms of age of diagnosis, digestive symptoms, anemia, or other associated problems. They broke the 47 PCD patients into 2 groups for analysis:

Group 1: 23 patients who immediately went gluten free after being diagnosed with PCD, most due to digestive and other autoimmune complaints. Follow-up biopsies to screen for CD could not be performed since all of these patients were GF.

Group 2: 24 patients who stayed on a gluten-containing diet after being diagnosed with PCD. 14 had repeat biopsies at 1 year. Of these 14, 5 had villous blunting (full celiac disease) and 9 did not. Of the 9 who had normal biopsies at 1 year follow-up, 4 went GF due to symptom development and 5 remained without symptoms and had normal biopsies 3 years later.  The 10 patients with potential celiac disease who remained on a gluten-containing diet and refused follow-up biopsies are described as being in “good clinical condition,” however 5/10 had anemia, 3/10 had thyroid disease, 3/10 had diarrhea, 1/10 had alopecia, and 1/10 had rheumatoid arthritis on follow-up. While these problems might be perceived as being better than having full blown Celiac Disease, I wonder if so many symptoms would be present in this group of potential Celiacs had they gone GF.

The concept of non celiac gluten sensitivity was largely ignored in this paper. There is also no comment on how many intestinal biopsies were taken. The speaker that I listened to last night reiterated that at least 4-6 biopsies need to be taken from the duodenum in order to confirm a diagnosis of CD. If less than 4-6 biopsies are taken, CD can be missed.

In summary, we are in a gray zone as to how to advise others with “potential” celiac disease in terms of the gluten free diet. If one has PCD and feels lousy after eating gluten, then the decision to go gluten free is an easy one. For those who have PCD but do not have any ill effects from eating gluten (at least outward symptoms), I can see how the decision may be quite a bit more difficult.

After living so long with undiagnosed Celiac Disease, I would be hard pressed to not recommend the gluten free diet for those with Potential Celiac Disease. We currently have no idea how high the real risk of Celiac Disease is for this group. I personally know that it is a risk that I would not want my own family members to take….whether or not they would take my advice is an entirely different question!

Reference:

Prevalence and natural history of potential celiac disease in adult patients. Federico Biagi, Lucia Trotta, Claudia Alfano, Davide Balduzzi, et al. Scandanavian Journal of Gastroenterology. Posted online on March 19, 2013. (doi:10.3109/00365521.2013.777470)

*Also, a quick reminder that this is a blog. I am summarizing medical literature, but also adding in my own thoughts and opinions on what I have read. I am not trying to tell anyone what they should do for their own health, nor am I giving medical advice through this page. Thank you!

ID-10069612

Let’s Talk about Celiac Disease and Infertility

One of my favorite Celiac Disease-related pages on Facebook is that of the University of Chicago’s Celiac Disease Center. One of the first “tidbits” that I read on this page, after discovering it last fall, was the following statement: “Women who have experienced persistent miscarriages or infertility without a known medical cause should be tested for celiac disease.” I had no idea that there was such a strong association between Celiac Disease and infertility until I read this sentence.

I have encountered tons of women, both professionally and personally, who have struggled to get pregnant and/or carry a pregnancy to term. Recent estimates have shown that up to 10.9% of women of childbearing age (15-44) in the U.S. seek treatment for infertility in any given year. I wrote a post about the effects of Celiac Disease on pregnancy in January 2013, and since then have read quite a bit more about topic. Here are some things which I have learned about Celiac Disease and infertility:

-Studies published within the last two years have shown that between 6 and 10% of women with unexplained infertility have (undiagnosed) Celiac Disease. Previously, it was believed that the numbers were much lower, around 2-4%.

-Many women with Celiac-related infertility do have a prior history of irritable bowel syndrome or other GI complaints, but they do not necessarily have these symptoms while undergoing treatment for infertility.  It is well known that signs and symptoms of Celiac Disease can appear and then disappear for years (and even decades) before diagnosis.

-It is believed that Celiac impacts fertility due to a combination of malnutrition (nutrient deficiencies interfere with sex hormone function) and the formation of small placental blood clots (thromboses) due to Vitamin B12 deficiency. It has also been shown that anti-TTG antibodies do bind to placental tissues and can interfere with placental formation and function.

-If a woman has infertility due to Celiac Disease, fertility should resume between 3 to 9 months after going gluten free.

-Many researchers conclude that all women with unexplained infertility should be screened for Celiac Disease. Based on discussions with several people, this does not seem to be happening in all parts of the U.S.

The average cost for one cycle of IVF is $12,400. Many women go through multiple rounds of IVF before conceiving. Surrogacy can cost up to $100,000. If the research studies are correct, many women who are paying for these expensive treatments may actually have undiagnosed Celiac Disease. We need to continue to inform and discuss this with our families, friends, and neighbors as so many are potentially impacted.

General infertility statistics are found on the CDC site: http://www.cdc.gov/nchs/fastats/fertile.htm.

Other references which may be of interest:

1. Undiagnosed celiac disease in women with infertility. Machado AP, Silva LR, Zausner B, Oliveira Jde A, Diniz DR, de Oliveira J. J Reprod Med. 2013 Jan-Feb; 58(1-2):61-6

2. Increased prevalence of celiac disease in patients with unexplained infertility in the United States. Choi JM, Lebwohl B, Wang J, Lee SK, Murray JA, Sauer MV, Green PH. J Reprod Med. 2011 May-Jun; 56(5-6):199-203.

3. Immediate effect on fertility of a gluten-free diet in women with untreated coeliac disease. Raffaella Nenna, Maurizio Mennini, Laura Petrarca, Margherita Bonamico. Gut 2011;60:1023-1024.

4. Anti-tissue transglutaminase antibodies from celiac patients are responsible for trophoblast damage via apoptosis in vitro. Di Simone N, Silano M, Castellani R, Di Nicuolo F, D’Alessio MC, Franceschi F, Tritarelli A, Leone AM, Tersigni C, Gasbarrini G, Silveri NG, Caruso A, Gasbarrini A. Am J Gastroenterol. 2010 Oct; 105(10):2254-61.

5. Infertility Treatment in a Population-Based Sample: 2004–2005. Sara E. Simonsen, Laurie Baksh, Joseph B. Stanford. Maternal and Child Health Journal. May 2012, Volume 16, Issue 4, pp 877-886.

grade 1_2_2_2_5_2_2

Delay in Diagnosis of Celiac Disease

This is my first grade photo. This was taken right before I began to show signs and symptoms of Celiac Disease. Although it takes, on average, 10 to 13 years after the initial onset of symptoms for a patient with Celiac Disease to be diagnosed, in my case it took almost 30 years.

Undiagnosed, and hence, untreated, Celiac Disease is associated with anemia, osteoporosis, arthritis, infertility, central nervous system damage, and the development of other autoimmune diseases. Celiacs with longstanding exposure to gluten are also at an increased risk of cancer of the digestive system. Although some of these problems, such as anemia and infertility, are reversible once gluten free, others are not. My autoimmune thyroid disease (Hashimoto’s thyroiditis), which I suspect is due to decades of gluten exposure, will never go away.  Through the internet I have interacted with tons of other people with Celiac Disease with long delays in diagnosis (some not until their 50s or 60s). Anecdotally, it seems like a lot of us have multiple autoimmune issues, such as lupus, multiple sclerosis, fibromyalgia, and/or irritable bowel syndrome, as well as multiple food intolerances. It is unclear whether or not we would have developed these additional autoimmune problems had we removed gluten from our diets decades earlier, when we first started to show signs and symptoms of Celiac Disease. My gut tells me that we would have…

There was an interesting study published in Wales in 2007 in which the medical records of patients with Celiac Disease were reviewed. Celiac patients had a significant increase in number of subspecialist consultations in the years before diagnosis, seeing on average 5 different consultants. People with Celiac Disease also had symptoms of depression, anxiety, anemia, and diarrhea in much higher numbers than patients without Celiac Disease prior to diagnosis; 41% had a history of depression and/or anxiety. Swedish researchers examined the quality of life of 1500+ patients with Celiac Disease, both pre- and post-diagnosis, and found, not surprisingly, an improved quality of life for Celiac patients once diagnosed and treated (see link).

Last of all, a case report of a women diagnosed with Celiac Disease in her mid-forties (named Mrs. J) was published in a large medical journal called JAMA in 2011. Mrs. J’s main symptoms of Celiac Disease were recurrent miscarriages and chronic anemia. While I highly recommend that all of you read the article if you can, I am going to cut and paste a few of Mrs. J’s questions after diagnosis and the experts’ answers to her:

Could my miscarriages have been related to celiac disease? Currently the typical newly diagnosed patient with celiac disease is a woman around the age of 40 years who has had symptoms of celiac disease for over a decade. Given that active celiac disease has nutritional and direct inflammatory consequences on fertility, the reproductive life of many patients is irreversibly affected. In particular, the risk of miscarriage appears higher in women with untreated celiac disease compared to the general population. For these reasons, clinicians should maintain a very low threshold for celiac disease testing in this population.

Has my body sustained any irreversible damage from celiac disease over the years? The small intestinal mucosa has enormous regenerative capacity in both health and disease. Even individuals with longstanding, severe celiac enteropathy can expect to achieve complete or near complete intestinal healing with gluten avoidance and nutritional support, although the length of time to healing varies from less than one year to more than five years and healing is associated with younger age at diagnosis and improved GFD adherence. Outside of the intestine, however, healing is not always assured. A number of extraintestinal manifestations of celiac disease such as dermatitis herpetiformis, anemia, and joint pain, typically improve significantly or resolve within the first year of treatment, as was seen in Ms. J. One of the most common associations with celiac disease is reduced bone mineral density (BMD) which is seen in at more than 50% of patients at diagnosis. Although there is often a significant improvement in BMD over the first year of treatment with a GFD, up to 21% of patients will have persistent osteoporosis. There are multiple neurologic manifestations of celiac disease, some of including peripheral neuropathy and headaches which resolve, while case studies suggest that other manifestations including ataxia, may stabilize but rarely improve. Finally, there is a potential increased risk of secondary autoimmune disorders related to longstanding untreated celiac disease, and once triggered, these will not respond to gluten withdrawal.

My hope is that no child with current symptoms of Celiac Disease will have to wait 20+ years for diagnosis, like so many of us did. We need to prevent Celiac-associated problems, such as infertility, neurologic complications, and other autoimmune diseases, from developing in the first place, so that children with Celiac Disease can have an improved quality of life as adults!

References:

1. A case-control study of presentations in general practice before diagnosis of coeliac disease. Cannings-John R, Butler CC, Prout H, Owen D, Williams D, Hood K, Crimmins R, Swift G. Br J Gen Pract. 2007 Aug; 57(541):636-42.

2. Delay to celiac disease diagnosis and its implications for health-related quality of life. Norström F, Lindholm L, Sandström O, Nordyke K, Ivarsson A. BMC Gastroenterol. 2011 Nov 7;11:118.

3. Celiac disease diagnosis and management: a 46-year-old woman with anemia. Leffler D. Source Department of Gastroenterology, Beth Israel Deaconess Medical Center, and Department of Medicine, Harvard Medical School, Boston, Massachusetts 02215, USA. dleffler@caregroup.harvard.edu. JAMA. 2011 Oct 12;306(14):1582-92.

ID-10087749

The Gluten Contamination Elimination Diet

As many of us already know, there are some celiacs who are “refractory” and continue to have ongoing symptoms after going gluten free. In addition, there are a bunch of us who are “super sensitive” in terms of reactions to gluten cross-contamination. I am one of the super sensitives. Not too long ago I had a reaction from eating one bite of a Trader Joe’s “no gluten ingredients” brownie which I had prepared in my own gluten free kitchen for a potluck.

Just last week, Dr. Fasano and colleagues published a research paper on the effects of 3-6 months of a diet of exclusively whole, unprocessed foods on the symptoms of celiac patients who had no improvement while eating strictly gluten free. In this study patients were considered to have non-responsive celiac disease (NRCD) if they failed to respond to the gluten free diet or had a recurrence/relapse of symptoms despite being gluten free. Steroids are currently the standard of care for treating NRCD, which as we know can have serious side effects.

The researchers coined their diet the “Gluten Contamination Elimination Diet.” Here is the breakdown of foods with are allowed and prohibited on this diet:

Allowed: brown and white rice; all fresh fruits and vegetables; fresh meats; fish; eggs; dried beans; unseasoned nuts in the shell; butter; plain yogurt; plain milk, and aged cheeses; oils; vinegar (except flavored or malt); honey; salt. Beverages allowed include 100% juices, water, and Gatorade.

Not allowed: millet, sorghum, buckwheat or any other grains, seeds, or flours; frozen, canned, or dried fruits and vegetables; lunch meats; ham; bacon; seasoned or flavored dairy products; processed cheeses; flavored and malt vinegars.

Basically, all processed foods are eliminated. Of note, dairy is not reintroduced until week 4 of the diet.

17 patients with NRCD, all female, were placed on this diet for an average of 3-6 months. 14 of the 17 (82%) significantly improved on the Gluten Contamination Elimination Diet. Of those who did have biopsies performed after the diet, all but one had resolution of their villous atrophy. This is important information as there have been a lot of recent studies showing that persistent villous atrophy is common in celiac disease. Most of the patients in this study were able to eventually resume a “traditional” gluten free diet.

It has taken me over 3 years, and a lot of trial and error, to figure out the foods which my body loves and hates. Interestingly enough, my body’s food preferences are almost identical to the foods on the “allowed” list in this diet. Had I known about this diet, and adhered to it when I was first diagnosed, it would have saved me a ton of pain and anguish. I am optimistic that this diet (or a similar version) will become the standard of care for those newly diagnosed with Celiac Disease, and I hope that this happens sooner than later. If we work together, we can get the word out!

Reference: “Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients.” BMC Gastroenterology. 2013. 13:40 (e-pub).

ID-10096024

A Glimmer of Hope (for Increased Awareness of Gluten-Related Problems)

I recently came across a discussion concerning celiac disease on a physician-only internet forum.  Here are some of the (anonymous) comments which were posted:

“Ugh. Is there any disease more boring and worthy of turfing to the GI guys than Celiac Sprue?”

“Celiac disease – so little known, so much to know, so important to know”

“Celiac disease is easy to diagnose ONCE SUSPECTED! We can easily suspect in a child with diarrhea and an adult with the same in chronic state, but in the face of generalized inanition, neuropathy, or other intestinal disorders, or teen age diabetes onset, it doesn’t readily pop up in one’s conciousness. Yet recent studies have suggested that as many as 1 in 5 with celiac disease will have a variety of neurologic and other symptoms. I know in my practice I can look back and see a number of patients whose symptoms might nowadays suggest a strong need for screening. It is with regret that I look back on their years of suffering without a chance for their improvement with a gluten free diet or study of the nutritional factors disturbed by gluten deposition.”

“Most physicians are missing the Celiac Disease because they diagnose it as IBS.”

“Its very hard for patients to stick to a gluten free diet, unless the entire family goes gluten free, which most don’t. I am seeing many more gluten free products in the stores, though, especially baking mixes and crackers/cookies – makes it easier. But I have tasted some gluten free cookies. I decided that gluten is good.”

“Hey, did y’all know that most American soy sauce is mostly fermented wheat?”

And then I came across this comment, a true treasure, which made me feel like the time I had spent reading through the other comments was actually worthwhile. I wish that I could meet this physician in person and give him or her a huge hug!

I diagnose and successfully treat many children with gluten intolerance who do not meet the typical diagnosis of celiac. I screen all kids with neuropsychiatric and immune dysfunction for the HLA DQ2 and DQ8 genetic markers. If the patient is positive, I inform them they do not necessarily meet celiac diagnostic criteria, but the gold standard is a trial off gluten. IF the child is way better ( which they often are), the family is sold on the diet, even if it takes a lot of work. 

As for the kids who get worse gluten free, (many are autistic), they are usually soy or corn sensitive, and as they remove gluten they increase their soy and corn consumption and get worse. There are many families that seem more sensitive to soy and corn than even gluten, (GMO?), any trial off gluten, a family must be warned of this potential adverse effect so they are not surprised. Also, patients dont feel better for up to 2-3 weeks, in the beginning they have gluten withdrawal and get worse.

For all of you that believe the gluten free life is hard, it is far harder to have a severe autistic, anxious, depressed or ill child. Most families are more than willing to endure the trouble when they see their kids thrive. Don’t assume they will do poor.

As for those who say that they will have nutritional deficiencies, GIVE ME A BREAK, many cultures all over the world are free of gluten, it is not needed for human life. It just takes education, plus they eat less processed foods, which all Americans could benefit from.

Looking for this in my patients has changed my whole practice, and the lives of my families. We dont have IBS in our office, no functional abdominal pain, no chronic fatigue. Gluten intolerance is not all that we do for those conditions, but it is a good place to start. Children are suffering for reasons that are treatable, not “stress”.

This last post gave me hope that awareness of gluten-related disorders is finally increasing within the medical community, especially in pediatrics. It’s about time!

 

HPIM0564.JPG

Easy Gluten Free “Muffin Tin” Recipes for Families

When I started this blog, I had no intention of posting recipes, as there are a ton of awesome websites and blogs with gluten free recipes already in existence.  However, as a working mom who prepares gluten free meals regularly for a family of 6, I have adopted a ton of super easy, family friendly foods over the past few years. One common theme is that all of these recipes involve making foods in a muffin tin.  For some reason, my kids seem to really like this!  All six recipes are gluten free and soy free, and some are Paleo and/or dairy free (or can be modified to be so).  If you’d like, you can skip the cooking spray and use olive oil to grease the tins instead. Okay, here are your recipes…

1. Zucchini Bites (recipe adapted from The Naptime Chef)

Ingredients: 1 cup grated zucchini, 1 egg, 1/4 yellow onion (diced), 1/4 cup cheese (we usually use parmesan), 1/4 cup GF bread crumbs, salt and pepper

Directions:  1. Preheat oven to 400F.  Spray a standard muffin tin or mini muffin tin with cooking spray and set aside.  2. Squeeze out grated zucchini between paper towels so it is dry.  3. Mix egg, onion, cheese, bread crumbs, zucchini, and salt and pepper (use as much as you’d like) in a bowl.   4.  Using a spoon or cookie scoop, fill the muffin cups to the top.   5. Bake for 15-18 minutes, or until the tops are browned and set.

**Makes 12 mini muffins or 6 regular sized muffins.  We have doubled and even tripled the recipe many times without a problem!

 

2. Pizza Frittatas (I have had this recipe for so long that I cannot recollect its origin):

Ingredients: 1 cup chopped mushrooms, 1 chopped bell pepper, pepperoni slices, 10 large eggs, 1 cup shredded mozzarella cheese, 1 tsp salt

Directions:  1. Preheat oven to 350F.   2. Saute the mushrooms and bell pepper.   3. Spray muffin tin with cooking spray and divide sauteed veggies evenly into each cup.    4.  Line inside of each cup with 4-5 slices of pepperoni.  5.  Whisk eggs and salt together.  Pour eggs evenly into each muffin cup.   6. Top each with mozzarella cheese.     7. Bake for 15 minutes, or until eggs are set and puffy.

**You can tightly wrap the individual frittatas and freeze.  Microwave in 15 sec increments until heated through.  You can prepare as a Paleo dish if mozzarella cheese is omitted.

 

3. Easy Cheesy Bread (modified from a recipe on www.simplyrecipes.com):

Ingredients: 1 egg, 1/3 cup olive oil, 2/3 cup milk, 1-1/2 cups tapioca flour, 1/2 cup grated cheese of your choice, 1 tsp salt

Directions: 1. Preheat oven to 400F.   2. Put all ingredients into a blender and pulse until smooth.  You may need to use a spatula to scrape down the sides of the blender halfway through.  3. Pour into a greased muffin tin.    4. Bake for 15-20 minutes until puffy and just lightly browned.

 

4. Meatloaf Delight (modified from a new recipe called “Meatloaf in a Muffin Tin” on Dana’s website, www.celiackiddo.wordpress.com):

Ingredients: 1-1/2 lbs lean ground sirloin, 2 garlic cloves (minced), 1tsp salt, 1/2 tsp pepper, 1 cup GF bread crumbs, 1 egg

Directions: 1. Preheat oven to 450F.     2. Grease a standard sized muffin tin.     3. Combine sirloin, egg, garlic, salt, pepper, and bread crumbs in a large bowl with your hands.     4. Divide equally into muffin cups, either using an ice cream scoop or rolling into balls and pressing into cups.    5. Bake for 20 minutes, making sure to cut into one to make sure it is cooked through before serving.

**if you check out Dana’s website (see above) she has a recipe for a ketchup glaze to put on the top before cooking.  We opted to give our kids ketchup on the side.  We just made this recipe for the first time last week. My oldest gave it a score of an 11 on a scale of 1 to 10, and my 2nd coined it “Meatloaf Delight” because he loved it so much.

 

5. Salmon Cakes (adapted from a recipe on www.runnersworld.com):

Ingredients: Two 6 oz cans of salmon, 2 eggs, 1/2 cup GF bread crumbs, 1/3 cup milk (can use non-dairy milk), 1 shredded zucchini, 2 tsp curry powder (okay to omit curry if you don’t have it)

Directions: 1 Preheat oven to 350F.    2. Combine all ingredients in a large bowl.    3. Stuff into 8 to 12 standard sized muffin cups (we have had enough for 12).    4. Bake for 25 minutes.

**can be served with an avocado sauce as well (combine 1 avocado, 1/2 cup plain yogurt, juice of 1 lime, and 1/4 tsp salt in a food processor).

 

6. Banana Chocolate Chip Muffins (also via www.celiackiddo.wordpress.com):

Ingredients: 3 ripe bananas, 1/2 cup coconut milk, 2 tbsp apple cider vinegar, 1 tsp GF vanilla extract, 1-1/2 cups GF all purpose flour (I am pretty sure you can substitute almond flour but we have not tried this yet), 1/2 cup light brown sugar, 1 tsp baking soda, 1-1/2 tsp cinnamon, 1/2 tsp salt, 1/2 cup mini chocolate chips (we use the Enjoy Life brand)

Directions: 1. Preheat oven to 350F.  Grease a standard, 12 cup muffin tin, or 2 mini muffin tins.   2. Place bananas, coconut milk, apple cider vinegar, and vanilla extract into a blender or food processor and pulse until smooth.  Scrape down sides with a spatula and blend again.    3. In a large bowl, whisk together all dry ingredients except for chocolate chips.     4. Add wet mixture to the dry mixture and mix well.     5. Fold in the chocolate chips.   6. Spoon batter into muffin tins.     7. Bake mini muffins for 10 minutes, standard sized muffins may need closer to 20 minutes (you will know they are done when a knife or toothpick inserted into the center comes out clean).

Enjoy!

ID-10068290

Why I Love Being Gluten Free

As a Celiac, going gluten free was nothing less than a rebirth for me.  I did not realize the toll that Celiac Disease had taken on my body and mind until after my diagnosis and treatment with the gluten free diet began. For the first time in my life since childhood I began to feel “normal” and like I was lifted out of a fog. The overall improvement in my life has been incredible. In addition to a total resolution of my chronic GI distress and arthritis, I experienced several other unexpected benefits of being off of gluten.

One of the first things that occurred after removing gluten from my diet was that I had a rapid increase in my energy level.  Although I ran track in high school, and continued to run while in college for fitness, I had struggled to run more than 2 miles at a time in the years leading up to diagnosis.  Like most aspects of my life, I chalked my exercise intolerance up to stress. Looking back, my real problem had been untreated Celiac Disease. Within 8 weeks of being on the gluten free diet I was able to run a 10K and within 16 weeks I completed my first half marathon.

The second thing that was noticeable within weeks of starting my gluten free journey was a marked improvement in the integrity of my hair, skin, and nails.  All of the “gross” stuff that I had experienced for ages, like adult acne, dandruff, breaking nails, alopecia (hair loss), and easy bruising, disappeared.  My hair grew back in and I actually had to get it cut regularly. I started to have to trim my fingernails on a weekly basis again (prior to going gluten free I cut them maybe once a month).  As I write and reflect on this now, I realize how malnourished by body actually was.

My depression has dissipated and I feel a joy about life that I did not feel when I sick with diarrhea, abdominal cramping, and joint pains on a regular basis. There have been several studies showing that there is a higher incidence of depression in patients with Celiac Disease, and I believe them. In my case I think that the improvement in my mood is multifactorial. Once I removed gluten I began to physically feel better and eat in a more nutritious manner, which led me to get be able to run and exercise, which in turn led to a decrease in my stress level and an improvement in my overall well-being.  Although there have been stressful experiences in my life the last few years (deaths, a miscarriage, familial stress, a multiple sclerosis scare, etc.) I have not had my depression recur like it used to prior to my diagnosis.

Miscellaneous other things which improved or disappeared when I removed gluten include the following (some seem utterly bizarre and I still cannot figure out if or why they are connected with gluten and Celiac Disease):

  • gray hairs on my head
  • ringing in my ears
  • TMJ (temporomandibular joint) pain and clicking
  • difficulty seeing at night
  • mouth sores and ulcers
  • hay fever and seasonal allergy symptoms
  • bad menstrual cramps
  • sensitivity to sounds and loud noises
  • styes
  • having to pee all of the time (although my husband may debate this one!)
  • low white blood cell count

I hope that with increased awareness and diagnosis of Celiac Disease and gluten sensitivity that others will begin to experience the fabulous gluten free life. I can attest that it is much better than the alternative!

Celiac Disease and the Innate Immune System

256px-Innate_Immune_cells

I know that this title sounds very boring (so much so that I doubt that many will read any further than this).  But, if you can bear with me, there is some fascinating research involving the role of the innate immune system in reactions to wheat. Trust me!

The role of the immune system is to fight infection.  There are two main types of immunity: innate and adaptive. The adaptive immune system is highly evolved and involves antibody formation. The ability of our bodies to “remember” previous infections and respond to vaccines depends on adaptive immunity.

The innate immune system, on the other hand, is our first line of defense against bacteria and viruses. It is primitive, exists in all plants and animals, and does not involve antibody formation. The innate immune system is made up of different types of white blood cells, including neutrophils, monocytes, basophils, and mast cells (see picture above).  When confronted with an “invader,” these cells release chemicals, called cytokines, which cause widespread inflammation.

The traditional teaching is that autoimmune diseases involve the adaptive immune system, as antibodies are created against one’s own tissues and organs, called “autoantibodies.”  For example, in Celiac Disease antigliadin antibodies and tissue transglutaminase antibodies (TTG) are created. However, recent research has shown that the innate immune system may also be involved in the “gluten reaction” experienced in Celiac Disease.

Alpha-amylase/trypsin inhibitors (ATIs) are “pest-resistant” molecules found in wheat and other cereals and grains, such as corn and soy. A team of researchers from Boston and Germany have recently discovered that wheat ATIs trigger an innate immune response, with a release of pro-inflammatory cytokines from monocytes, macrophages, and dendritic cells, when they come into contact with human intestinal cells.  They were surprised to find that inflammation occurred when wheat ATIs came into contact with cells from all of the subjects (both with and without Celiac Disease). I find this to be both fascinating and scary.

I am curious to see if those of us with Celiac Disease who seem to be “super sensitives” may actually have a stronger innate immune reaction to wheat than other Celiacs. I am also wondering if the innate immune system plays a role in why so many of us with Celiac Disease develop additional food sensitivities with time and/or feel like we get “glutened” from gluten free foods from time to time. The fact that other grains contain ATIs, and hence, can likely trigger an innate reaction, may explain why so many of us feel our best when we are on a Paleo, or at least “grain-light,” diet.  Finally, I hope that this information will stimulate research into the mechanism of non celiac gluten sensitivity, which so many suffer from.

For more information on this subject I suggest the following:

1. Gliadin Triggers Innate Immune Reaction in Celiac and Non-Celiac Individuals.  Celiac.com webpage. 12/31/2012.

2. J Exp Med. 2012 Dec 17;209(13):2395-408. doi: 10.1084/jem.20102660. Epub 2012 Dec. Wheat amylase trypsin inhibitors drive intestinal inflammation via activation of toll-like receptor. Junker Y, Zeissig S, Kim SJ, Barisani D, Wieser H, Leffler DA, Zevallos V, Libermann TA, Dillon S, Freitag TL, Kelly CP, Schuppan D. Division of Gastroenterology, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA 02215, USA.

3. Researchers believe pest resistance molecules in wheat play role in triggering innate immune responses.  National Foundation for Celiac Awareness website. 12/31/2012.

4. Natural “Pesticides” in Wheat: Is There a Role in Gluten Sensitivity and Celiac Disease? By Peter Olins, PhD. December 19, 2012.

IMG_3051

Yes, it is “Safe” to Raise Non Celiac Kids Gluten Free

I’ve realized that I have not written for almost a week and I think I am okay with this. When I started this blog two months ago, I anticipated being able to post about once a week, so I think I am on track. Between working full-time, running, and trying to squeeze in some sleep, the main reason  that I have not had time is that I have four small children. I am trying my best to cherish this phase of our family life, as I know that someday I will have four teenagers at once!

None of my kids have Celiac Disease, but I consider them all to be at high risk for its development. Although I was diagnosed when I was 33, I have probably had Celiac Disease since early childhood. My mother also has it, and interestingly enough, was diagnosed after I was. Through conversations with aunts and uncles, it seems there is some “gluten sensitivity” in my deceased dad’s family. Although my husband, Tom, does not have Celiac, we do know that he is HLA-DQ2 positive, as he was tested by his GI doctor.  He has both an aunt and cousin with Celiac Disease as well. If none of my children go on to develop Celiac Disease, I will be truly amazed!

We started off my Celiac journey with a shared kitchen. I read up on this as much as I could after diagnosis, and I had my own “gluten free” cabinet, pasta strainer and pasta pot, cooking utensils, baking dish, etc. I also kept separate GF butter, peanut butter, and other condiments to avoid cross contamination.  I always put my items on a piece of aluminum foil when toasting because I was never able to find the “toaster bags” which people would discuss on the Internet forums. I thought that I was doing everything right and although our GF/non GF set-up did work for a while, I kept on getting sick. In 2012 I developed a peripheral neuropathy, which is persistent numbness and tingling from nerve inflammation, and was evaluated for multiple sclerosis. My neuropathy ended up being Celiac Disease related, as a result of continued exposure to traces of gluten. We made our whole home gluten free in 2012 and I have had minimal problems since then.  My exposure to tiny hands and mouths with gluten crumbs was much more damaging than I could ever have imagined when I was diagnosed in 2010.

Through starting this blog I have been able to interact with a lot of moms with Celiac Disease and/or raising kids with Celiac Disease. Many of us have decided to raise all of our kids gluten free, however, this seems to be controversial.  I have learned that many people are being advised by their doctors that it is not “safe” to raise their non Celiac children gluten free, because they are being told that by doing so that they are depriving their kids of essential vitamins and nutrients.  I have researched this and have not found any evidence that this is the case, as long as gluten free kids are given a wide variety of non-processed, nutrient-rich foods.

Our youngest is now 10 months old and, freakishly enough, has 7 teeth, so she is eating table foods at dinner. We eat a lot of vegetables, fruits, meats, eggs, beans, and fish. Our “starches” consist of potatoes, rice and risotto, squash, and sweet potatoes.  Once a week or so we will make a GF pizza of some sort. Lately we have been making a cauliflower pizza crust which I adapted from a recipe I found on Pinterest (I will post it on the “Recipes” page of this blog soon). We occasionally make tacos, enchiladas and other Mexican foods, pasta or lasagna, and Indian dishes, usually a chicken curry of some sort.  For snacks our kids eat fresh fruit, applesauce, popcorn, dried fruits and nuts, yogurt, string cheese, GF crackers and rice cakes.  We always have a few “treats” in our home, usually Annie’s GF Bunny crackers, ice cream, and a tortilla chip of some sort.  I bake a lot of treats for the kids as well. We’ve made delicious chocolate chunk cookies using almond flour 2 or 3 times in the past week (see link). We’ve said goodbye to a lot of convenience foods like chicken nuggets and frozen macaroni and cheese.

I do not see any evidence that my children are nutritionally deprived. They are growing and thriving, are not anemic, and interestingly enough, my two oldest have grown quite a bit since going off of gluten last year.  I give all of them a calcium and vitamin D supplement once a day, but I have done this for years. We live in the midwest, where vitamin D deficiency is rampant in both kids and adults, and a deficiency is associated with the development of autoimmune diseases.  I have not given them any other vitamins or supplements. I am pretty certain that they are getting enough protein, fat, vitamins, minerals and calories for proper growth and development through their diets.

I am not trying to say that what I am doing for my family is right or best for all families. I am sharing my story in hopes that it may help others to make the decision whether or not to make their entire household gluten free. Looking back, I wish that I would have made the transition much earlier in my journey, as it would likely have prevented me from developing neurologic complications from Celiac Disease. Thank you for reading!

 *Also, a quick reminder that this is a blog. I am summarizing medical literature, but also adding in my own thoughts and opinions on what I have read. I am not trying to tell anyone what they should do for their own health, nor am I giving medical advice through this page. Thank you!

 

 

 

What your doctor may possibly be reading about Celiac Disease

medicine_and_Stethoscope

I was at a work function recently and I met a new physician. She noticed that I was not eating any of the food from the dinner buffet and she asked me why. I told her that I have Celiac Disease and she asked me, “What is Celiac Disease?” It took me a minute to respond because I was so taken aback by the question. When I responded that I cannot eat gluten, she asked me, “What foods is gluten found in?”  I went back to the basics in my explanation.

This encounter came about a month or two after I had another doctor ask me questions about my “gluten allergy” and whether or not I ever “cheat” on my diet. He told me that one of his relatives has Celiac Disease, but cheats all of the time.

That encounter came about 6 months after I was told by another M.D. that all Celiacs cheat on the gluten free diet because it is too difficult to follow. He shared with me that he has never met a patient who has been successful at eating gluten-free.

So, although I have not picked up a copy of “Harrison’s Principles of Internal Medicine” since medical school, as I am in a very different field, I marched into the library and began to read the 17th edition. Two of the 2500+ pages were devoted to “Celiac Sprue” (that is what it is called in this book). This is probably the last big, clunky edition of Harrison’s that many MDs have sitting in their offices for reference, as since then it has been widely available online.

Here are some of the things which I read (and what other doctors and practitioners may also be reading):

-Celiac disease is a common cause of malabsorption (true)

-it occurs in up to 1 in 113 people (true)

-although the cause is unknown, it is likely due to a combination of genetic, environmental, and immune factors (true)

-the hallmark findings are an abnormal small-intestinal biopsy showing villous blunting (photos of biopsies are shown) and response to a gluten-free diet (true)

-it may develop at any time during life (true)

-symptoms can come and go for years and years before diagnosis (true)

-symptoms include diarrhea, fatty stools, weight loss, nutrient deficiencies, anemia, bone disease, and/or iron deficiency anemia (true-but no discussion of all of the other symptoms and problems
which we now know celiac disease is associated with, like infertility, thyroid disease, joint pains, rashes, nerve inflammation, oral ulcers, ataxia, osteoporosis, etc.)

-it is associated with ingestion of gliadin, a protein component of gluten in wheat, rye, and barley (true-but no mention of oats often being a culprit as well due to heavy contamination with gluten)

-patients often have abnormally high levels of certain antibodies, such as IgA antigliadin, IgA endomysial, and IgA anti-TTG (true)

-10% of family members of celiacs may also be affected (true)

-Almost all patients are HLA-DQ2 positive. Absence of HLA-DQ2 excludes Celiac Disease (not true-we now know that about 8% of celiacs are HLA-DQ8 positive, and that a small number may actually not have either of the 2 main celiac genes).

-A small intestinal biopsy is required for diagnosis (this is not always the case anymore, a lot of people are diagnosed based on lab results, family history, and response to the GF diet; diagnostic
criteria are being revised)

-the most common cause of continued symptoms and lack of intestinal healing is continued ingestion of gluten (true, but the role other food intolerances, such as lactose intolerance, are not discussed)

-associated diseases include dermatitis herpetiformis, type 1 diabetes, and IgA deficiency (true-but no mention of all of the other problems which I discussed earlier)

-the most important complication is the development of cancers, like lymphoma (true)

Things which I am surprised were not mentioned in this textbook:
-that Celiac Disease is an autoimmune disorder
-that Celiac Disease can present without any gastrointestinal symptoms or anemia; the concept of “atypical” Celiac Disease
-that patients with Celiac Disease require follow-up testing, nutritional counseling, testing for bone density, vitamin levels, etc.
-that HLA-DQ8 is associated with the disease

This edition in my library was written in 2008. There was a more recent, 18th edition of the textbook, published in 2012, which I was able to access online. I was optimistic that it would
be much more up-to-date, which it was to a degree. There was a discussion of DQ8 as a genetic
marker. It also included the following very important statement:

“A much larger number of individuals have manifestations that are not obviously related to intestinal malabsorption, e.g., anemia, osteopenia, infertility, neurologic symptoms (“atypical celiac disease”); while an even larger group are essentially asymptomatic though with abnormal small intestinal histopathology and serologies and are referred to as “silent’ celiac disease.”

The problem is that this is very new publication, and if MDs are using the 2008 (or older) edition of the textbook, they are not going to be seeing this. A lot of younger physicians are using an online resource called “Up to Date,” which is continually updated and has all of the newer information on Celiac which seemed to be lacking in the textbook.  There is also a wonderful section on Celiac Disease in “Up to Date” for patients and their families, which I hope to share soon.

Reviewing the internal medicine textbook, in conjunction with my recent interactions with other medical providers, reminded me that we all need to work together to continue to educate our families, friends, doctors, nurses, teachers, neighbors, etc. about Celiac Disease. I am trying to do my part. Will you help me?

So it appears that Celiacs are not slowly dying after all…

Happy celiac

I recently came across the question, “Are Celiacs really slowly dying?” on one of the Celiac Disease forums. My first thought was, “Aren’t we all slowly dying?” Then, as I read, I realized that the person who posted it was concerned about research showing that many adult Celiacs do not have complete healing of their intestinal mucosa (tissue) despite being on the gluten free diet. This is called “persistent villous atrophy” in the medical world.

One of the major studies of persistent villous atrophy was published in 2009 (see link). Italian researchers studied a large group (n=465) of Celiacs who were on the gluten free diet. The average follow-up biopsy was performed 16 months after biopsy-confirmed diagnosis of Celiac Disease. At the time of follow-up biopsy, 75% of the patients reported that their symptoms had disappeared and 87% of the subjects experienced normalization of their celiac antibody tests on the gluten free diet. Of the 465 Celiacs on the GF diet, they found the following on repeat biopsy: 8% had completely normal duodenal (small intestinal) tissue, 65% were in remission (intestines looked better than at diagnosis, but there were still an increased number of white blood cells in the intestinal tissues), 26% had no change from diagnosis, and 1% were actually worse than prior to going gluten free.

At the end of the paper, the researchers hypothesize that the lack of intestinal healing and increased white blood cells may be due to the continual activation of the innate immune system by small amounts of gluten in “gluten free” foods. I plan to discuss this soon in another post. The Italian researchers’ findings and discussion at the end of their paper have, unfortunately, led many to believe that the gluten free diet is harmful and/or killing all of us with Celiac Disease.

In February 2013 Dr. Green and colleagues at both the Celiac Disease Center at Columbia University and in Sweden will be publishing a paper entitled “Mucosal healing and mortality in celiac disease.” Their teams set out to see if a lack of mucosal healing (persistent villous atrophy) is associated with an increased risk of death for patients with Celiac Disease. Similar to the Italian researchers, > 40% of Celiacs were shown to have persistent villous atrophy on follow-up biopsies. However, the researchers found no association between persistent villous atrophy and an increased risk of death for Celiacs. This is definitely a good thing!

After reading both of these papers, I am left with many questions: Why does it take so long for adult Celiacs’ guts to heal after going gluten free? Should we expect the same for children with Celiac Disease? Is the persistence of white blood cells in the intestines contributing to and/or a “marker” of the “leaky gut” that so many of us seem to be experiencing, or is it a normal part of the slow healing process? How is the innate immune system involved? Are follow-up biopsies for Celiacs going to be necessary in the future now that so many patients are diagnosed on the basis of genetics, symptoms, and abnormal antibody testing alone? Isn’t the fact that symptoms resolve and antibodies normalize much more important than what actually shows up on repeat biopsies?

I’ll definitely be hitting the books and reviewing the innate immune system in upcoming weeks with plans to share what I find with you…

**Also, a quick reminder that this is a blog. I am summarizing medical literature, but also adding in my own thoughts and opinions on what I have read. I am not trying to tell anyone what they should do for their own health, nor am I giving medical advice through this page.

 

The Prevent Celiac Disease Study

prevent_cd_logo

I recently wrote about the best available recommendations for when to introduce gluten to babies who may be at risk of developing Celiac Disease. Although most babies are exposed to small amounts of gluten in breast milk, for my 4th baby (first born after my diagnosis), my breast milk was gluten free. Based on the best available evidence in the medical literature, small amounts of gluten should be given between 4 to 6 months of age, as it seems this is a critical window for the development of the immune system. If gluten is introduced later than this, the consensus is that it is important for breastfeeding to still be taking place during gluten introduction (see references in my previous post for more info).

I understand that this is a controversial area, as many parents feel that they should never introduce gluten to the at-risk child. I believe that, despite our best efforts to shield our children from gluten, they are eventually going to be exposed one way or another.

I did recently discover that the question of the timing of gluten introduction is being explored in Europe right now through the PreventCD study (www.preventCD.com).

This study has been sponsored by the European Union and involves 11 countries. More than 1000 infants were enrolled in the study from 2007 through 2011, and they are now being followed for the development of Celiac Disease from infancy until age 3. Based on the latest newsletter on the study website, the last participant will turn 3 in 2013, and the results will be “unblinded” at this point.

The 1000 infants in the study were all considered to be “at risk” for CD by having a first-degree relative (parent and/sibling) with Celiac Disease and being HLA-DQ2 and/or DQ8 positive. The study “intervention” started at 4 months of age and went for 8 weeks. Half of the babies were given a gluten-containing baby food on a daily basis and half were given a placebo. Breastfeeding was encouraged for both groups during the 8 week period.

The endpoint of the study is to see if there is any difference in frequency of Celiac Disease between the two groups at age 3. As a mom, Celiac, and pediatrician, I am eagerly awaiting these results. I am also intereseted to see if they will have the funding and resources to be able to follow the children into later childhood and adolescence. Either way, the results which they share will be valuable for all of us!

Although the study results will not be published for a while, the researchers have published an interesting review paper on infant feeding and Celiac Disease:

Systematic review: early infant feeding and the prevention of coeliac disease. Szajewska H, Chmielewska A, Pieścik-Lech M, Ivarsson A, Kolacek S, Koletzko S, Mearin ML, Shamir R, Auricchio R, Troncone R; PREVENTCD Study Group.Aliment Pharmacol Ther. 2012 Oct;36(7):607-18.

The full details of their study are described in this paper:

The PreventCD Study design: towards new strategies for the prevention of coeliac disease. Hogen Esch CE, Rosén A, Auricchio R, Romanos J, Chmielewska A, Putter H, Ivarsson A, Szajewska H, Koning F, Wijmenga C, Troncone R, Mearin ML; PreventCD Study Group.Eur J Gastroenterol Hepatol. 2010 Dec;22(12):1424-30.

Celiac Disease and Pregnancy

baby-18998_640

Although I am pretty sure that I had Celiac Disease for more than two decades before my diagnosis, I was not diagnosed until after my 3rd child was born. Looking back, my diet during my first 3 pregnancies was a gluten-filled nightmare. I am actually glad that I have no idea how sky-high my celiac antibodies probably were while I was pregnant with my oldest kids.

There has not been a ton of research on celiac disease and pregnancy, but based on the work that has been done, I have learned that celiac disease has effects on fertility, miscarriage rates, fetal growth, and the ability to carry a pregnancy to term.

Celiac disease is associated with early menopause, endometriosis, irregular menstrual cycles, and amenorrhea (missed periods), similar to what is seen in many other autoimmune diseases.

Between 4 to 8% of unexplained infertility is due to undiagnosed celiac disease. Many celiacs with infertility as their main problem do not have the “classic” digestive symptoms that would normally lead to diagnosis.

Once pregnant, women with undiagnosed celiac disease have between a 2-4x higher risk of miscarriage than women who do not.

During pregnancy, women with untreated celiac disease are at a higher risk of anemia, preterm labor, stillbirth, and having infants with low birth weights (growth restriction). These problems are related to a combination of maternal nutrient deficiencies during pregnancy, as well as effects from the attack of the placenta by maternal auto antibodies (TTG).

As a part of taking care of premature babies, it is important for me to review the medical and obstetric histories of my patients’ mothers. I have come across women more times than I can keep track of who, upon review of their medical records, may have celiac disease (some combination of irritable bowel syndrome, anemia, thyroid disease, depression, infertility, diabetes, and/or asthma). I have a friend who did a small research study during her fellowship in which she evaluated the mothers of low birth weight babies for celiac disease. Through her study, one mother was diagnosed with celiac disease. Similar research has recently been conducted in Italy, with results mirroring my friend’s.

Based on the information on the University of Chicago Celiac Disease Center website, once a woman is diagnosed with celiac disease and on a strict gluten free diet, fertility should return. Experts have recommended waiting between 6 months to 2 years once being gluten free before trying to conceive, in order to give the body time to heal. It is essential for celiacs to be on appropriate vitamin and mineral supplementation while pregnant.

It is assumed that pregnancy outcomes for women with treated celiac disease are similar to those of women without it. The only exception is that celiacs are still at a higher risk of miscarriage, even when we are gluten free during pregnancy. I have personally experienced this; back in 2011 I miscarried within days of bad “glutening” episode.

In summary, women with unexplained infertility should be screened for celiac disease. Once diagnosed, it is important to remain strictly gluten free and take a good gluten free prenatal vitamin while pregnant. One of the best resources to check the gluten status of a medication is at www.glutenfreedrugs.com. Last of all, try not to worry about the effects of celiac disease on your baby! Treated maternal celiac disease has no association with birth defects, heart problems, cerebral palsy, etc. However, if you are like me, you will worry about your baby throughout your entire pregnancy…this is a totally normal part of being a mom!

For additional reading on celiac disease and pregnancy, I recommend the following links:

1. The National Foundation for Celiac Awareness’ 2009 article “Pregnancy and Celiac Disease.”

2. “Celiac Disease: An underappreciated issue in women’s health” by Shah, S (2010).

Thank you for continuing to read and providing inspiration for posts!

Update September 2013: A group of Italian researchers has discovered that the type 2 tissue transglutaminase (TTG) antibodies seen in Celiac Disease interfere with the development of placental blood vessels. Reference is Simone, et al. Potential New Mechanisms of Placental Damage in Celiac Disease: Anti-Transglutaminase Antibodies Impair Human Endometrial Angiogenesis. Biol Reprod. Sept. 5, 2013. E-pub, ahead of print.

 

 

Introducing Gluten to the Baby At-Risk for Celiac Disease

IMG_3038 copy

This is Claire. She is my fourth baby, my “last” baby, and one of the greatest gifts of my life. She is the first baby I’ve had since being diagnosed with Celiac Disease and going gluten free. Because of this, I spent a lot of time during the postpartum period obsessing/fretting/freaking out about if/when I should expose my dear baby to gluten. I felt that I needed to do everything that I could to protect her from developing celiac disease. As usual, my husband was much more laid back and calm about the whole situation!

I researched my question and discovered the following:

1. Based on the best available information, gluten should be introduced to the “at risk” baby between 4 and 6 months of age. This runs counter to the current notion that infants should be exclusively breastfed for 6+ months and not have solids introduced until after 6 months.

2. Babies should be breastfed when gluten is first introduced and should continue to receive breast milk for at least 2-3 months after the first introduction to gluten.

Here is some of the science behind what I discovered:

-Anti-gliadin antibodies (antibodies against the major gluten protein) are present in breast milk of all women. The highest antibody titers are in colostrum, or early breastmilk, and levels decrease with time. It is hypothesized that these antibodies, which are passed from mother to baby, provide immunity to babies when gluten is introduced. Please refer to my post from November 2012 for additional information.

-Norris, et al. followed a large cohort of infants (>1500) in the U.S. who were at risk of developing celiac disease between the years 1994 and 2004. Feeding practices were analyzed and their research showed a much higher risk of celiac disease if gluten was introduced between 1 and 3 months of age or after 6 months of age.

- The rates of celiac disease skyrocketed in Sweden between 1984 and 1996; 3% of children born during this time developed celiac disease. This epidemic coincided with a nationwide change in feeding practice recommendations from starting solids between 4-6 months until after 6 months of age. This led to many infants having gluten introduced after being weaned from breastfeeding. See link for more information.

- The European Society for Pediatric Gastroenterology, Hepatology, and Nutrition (ESPGHAN) recommends avoiding both early (<4 months) and late (>7 months) introduction of gluten and to introduce gluten while the infant is still being breastfed. This mirrors the advice given by the University of Chicago Celiac Center (see website). The American Academy of Pediatrics emphasizes the importance of introducing gluten while breastfeeding in their 2012 “Breastfeeding and the Use of Human Milk” policy statement.

Overall, there seems to be a current consensus for an optimal “window” for introducing gluten to the “at-risk” baby between 4 and 7 months.

Back to sweet, little Claire. We started her on wheat-contaminated baby oatmeal at 4.5 months one time/day for about 4 weeks. She received exclusive breast milk for the next 2.5 months and is now a gluten-free baby. We’ll see what develops with time, but at if she develops Celiac Disease, at least I will know that I tried my best to prevent it!

Happy New Year and thank you for reading!

*Also, a quick reminder that this is a blog. I am summarizing medical literature, but also adding in my own thoughts and opinions on what I have read. I am not trying to tell anyone what they should do for their own health, nor am I giving medical advice through this page. Thank you!

Celiac Disease in the December 20, 2012 New England Journal of Medicine

Nejm_logo2011

I am grateful to one of my partners for leaving the December 20th issue of the New England Journal of Medicine in my mailbox with a yellow sticky note stating, “Jess, Thought this might interest you.” She was right, it did interest me, because it includes a review article written by my favorite celiac researcher, Dr. Fasano, from the Center for Celiac Research in Baltimore, MD (which, if you’re interested, will be moving to Boston, MA in 2013).

I love this article as, from the start, it highlights the fact that celiac disease can present in patients in “atypical” ways.

The article begins by describing a 22 year old female who fractures her wrist while playing volleyball. Outside of having fatigue and oral ulcers, she is otherwise healthy. An X-ray of her wrist shows that she has osteopenia (low bone density). Her blood tests show anemia, low iron, and low Vitamin D levels. She had no gastrointestinal symptoms but celiac disease is suspected.

I absolutely love this case presentation, as when I was in medical school (which wasn’t really that long ago) I learned that celiac disease was to be considered in patients with classic gastrointestinal symptoms, such as chronic abdominal pain, diarrhea, and weight loss. During my pediatrics residency (which was even more recently), I learned to suspect celiac disease in toddlers with signs of malnutrition, chronic diarrhea, and failure to thrive. Definitely not in young adults with a wrist fracture and low Vitamin D levels…..

I am so excited that hundreds and thousands of physicians, nurse practitioners, and physician assistants will read this article and learn and/or be reminded that patients with celiac disease can have symptoms NOT related to the GI tract. As Dr. Fasano eloquently states in the article, “The clinical features of celiac disease are protean and reflect its systemic nature.” How beautiful is that?

Dr. Fasano also reminds us of the consequences of untreated celiac disease, which include osteoporosis, spleen dysfunction, infertility and recurrent miscarriages, intestinal ulcers, and cancer. This is important for all doctors and patients to know.

He mentions that for many celiacs, despite adhering to a strict gluten free diet, minimal intestinal damage persists. I think that it is important for more to know this, as it highlights the need for additional research into celiac disease and the “leaky gut” phenomenon which it seems more and more of us are experiencing.

The last segment of the article is called “Areas of Uncertainty” and includes a discussion regarding the appropriate timing of introducing gluten to infants. He reports a 50% lower risk of celiac disease in infants who are receiving breast milk when gluten is introduced. I hope to write more about this in the upcoming months.

In conclusion, this article reaffirmed my admiration and gratefulness for Dr. Fasano, and I sincerely hope that its publication leads to increased diagnosis and treatment for the 97% of celiac patients in the U.S. who are walking around undiagnosed.

Celiac: Is There a Trigger?

I’ve questioned this so many times. More than 40% of Americans have at least one of the celiac genes, HLA-DQ2 and/or HLA-DQ8, yet only 1% go on develop the full-blown disease. I recently read an article in the magazine Living Without called, “Celiac Disease, By Accident,” in which possible environmental triggers are discussed (see link). Many people report that they have developed celiac disease after major life stressors, including accidents, surgeries, and infections. I am pretty sure that my trigger was pregnancy.

Although my symptoms waxed and waned for 20+ years, it was shortly after I had my 3rd child that I got very sick. At first I thought that my symptoms of fatigue and continual diarrhea were due to being postpartum, stressed, and drinking too much coffee to stay awake. Then I began to feel like I was getting food poisoning all of the time, and I actually blamed my husband for a while because he was doing most of the cooking at this point (sorry, Tom!). I blamed my hair loss on the pregnancy but thought it was strange when it didn’t grow back in. When I was about 8 months postpartum I developed additional symptoms….arthritis in my hands, knees, and ankles, diffuse oral ulcers, daily low grade fevers, low back pain, and huge bruises all over my body. At this point in time I remember feeling like I was continually “hungover” and that my brain was in a fog, even though my baby was sleeping through the night and I was no longer working the crazy night shifts that I had during my medical training. I suspected that I had an autoimmune illness and actually thought that it was probably rheumatoid arthritis.

It was around this time that I had the most memorable gastrointestinal virus of my life! I subsisted on Gatorade for about 2.5 days and all of my autoimmune symptoms went away. The fatigue, joint pains, and mouth ulcers miraculously disappeared, and I felt better than I had in ages, despite having a nasty GI bug. Then, once I did start eating again, mostly toast, saltines, and chicken noodle soup, all of the symptoms came back with a vengeance, including the GI symptoms. I was diagnosed a few weeks later. Now, every time I get “glutened,” I experience immediate GI symptoms (abdominal pains, bloating, food poisoning symptoms) followed by about 5-7 days of arthritis, lethargy, oral ulcers, brain fog, headache, and overall feeling really crummy. This is why I am so cautious with what I eat. As the breadwinner for my family I cannot afford to be sick on a regular basis. If my reaction was just a little GI discomfort, or just lasted a day, I’d probably consider cheating on the diet from time to time…..

 

Why are 97% of American Celiacs Undiagnosed?

Based on prevalence studies, it is estimated that 3 million Americans have Celiac Disease. Of these 3 million people, 2.9+ million have no idea that they have a serious autoimmune disease. This is a huge problem….

A few explanations for the atrocious rates of diagnosis:

-Only 1/3 of Celiacs have “classic” symptoms, such as abdominal pain and chronic diarrhea. Many of the symptoms of celiac disease, such as reflux, fatigue, anemia, oral ulcers, joint pains, hair loss, osteoporosis, seizures, migraines, infertility, etc. can be seen in other conditions and lead to errors and delays in diagnosis. There are probably many people with diagnoses such as chronic fatigue syndrome or fibromyalgia who actually have celiac disease as their underlying problem.

-Doctors used to teach that children with celiac disease would “outgrow” the condition, so there are many adult celiacs who believe that they outgrew their problems with wheat.

-The screening blood tests for celiac disease can be inaccurate.

  • Although there is evidence that patients need to have tests for several celiac antibodies, many labs are not performing all of these.
  • The labs that must be performed are 1. IgA endomysial antibodies, 2. IgA and IgG tissue transglutaminase antibodies, 3. total IgA antibodies, and 4. deamidated gliadin peptides.
  • 3% of celiacs have selective IgA deficiency, so if total IgA antibodies are not tested, the rest of the test results will be meaningless (meaning that celiac antibody tests will be negative even if celiac disease is present).


-Genetic testing is not perfect either. Most labs will test for two genes, HLA-DQ2 and HLA-DQ8, which are found in 95% of people with celiac diease. If a patient doesn’t have these genes, even if they get horribly sick from eating gluten, they are often told that they do not have Celiac Disease and may not be offered further testing. However, in 3-5% of cases, patients with Celiac Disease on biopsy are negative for DQ2 or DQ8. So it is possible to be a Celiac, even if you don’t have the 2 most common genes.

-Many biopsies are done incorrectly. According to most experts, the “gold standard” of diagnosis is an endoscopy with biopsy. Celiac disease destruction of the small intestine can be very patchy, and if the wrong areas are biopsied, and/or not enough tissue samples are taken, it can be missed. It is essential that at least 4 samples are taken. It is essential that the duodenal bulb be biopsied in all cases. Despite the guidelines, only 35% of biopsies are done correctly. Many patients have classic symptoms of celiac disease, positive antibodies and/or gene tests, but have negative biopsies due to the wrong area being biopsied. They are labeled as being gluten intolerant and some are sadly told and advised to continue to eat gluten!

-Right now there is no cure. Celiac disease is treated with the gluten free diet, but there is not a pharmaceutical “magic bullet.” I think that when there is finally a pill to treat this disease, and the associated marketing campaign, that people will finally get diagnosed in large numbers.

The bottom line is that if you or a loved one has any symptoms of celiac, it is worth researching the idea of celiac disease and discussing with your doctor. A lot of people who I have met have been diagnosed after asking their doctors to test them. Also, the book “Celiac Disease: A Hidden Epidemic” by Peter Green, is definitely worth checking out if you have any suspicions or conerns that gluten is causing you harm.

Help, My Gut is Leaking! Celiac Disease and the “Leaky Gut”

Intestine_-_sized

I have heard and read tidbits about the concept of the “leaky gut” for a while, especially in regards to autism, so it was with great interest that I read Dr. Alessio Fasano’s article, “The Leaky Gut and Autoimmune Diseases,” which was published in 2012. Dr. Fasano is one of the leading U.S. researchers of Celiac Disease and is the head of the Center for Celiac Disease Research at the University of Maryland. He was the first to report that 1 in 133 Americans are Celiacs (the majority of which have no idea). He will likely be one of the first to find a cure for us. And, as I recently learned by watching a recent televised interview, he is also very easy on the eyes…

Our digestive tracts are one of the largest immune organs in our body. The tissues of our small and large intestines act as a barrier to keep out proteins and other molecules which may be perceived by our bodies as being “foreign.” According to Dr. Fasano, increased intestinal permeability (or loss of the barrier function of our intestines) may play a role in the development of autoimmune diseases. In autoimmune diseases, our immune systems produce antibodies against our own tissues, called “autoantibodies.” For example, in Hashimoto’s Disease, the first autoimmune disease which I was diagnosed with, autoantibodies have attacked and destroyed my thyroid gland. In Celiac Disease, when our bodies are confronted with “foreign” proteins in gluten, such as gliadin, autoantibodies are formed which lead to an attack that may cause injury to many organs, including the intestines.

We all have “tight junctions” between the cells in the lining of our intestines. These tight junctions prevent the movement of “foreign” proteins to the layer of the intestines where the immune response occurs. Dr. Fasano has found that individuals with autoimmune diseases have increased levels of a molecule called zonulin in their intestines. Zonulin plays a role in making the intestinal tight junctions looser, and thus, “leakier.” Leaks between the tight junctions allow “foreign” proteins, i.e. gliadin, to sneak into the deeper layers of the intestine and for autoantibodies to be created. Dr. Fasano provides evidence that zonulin levels are increased in Celiac Disease as well as other autoimmune diseases, such as Type I Diabetes, Asthma, Multiple Sclerosis, and Inflammatory Bowel Disease.

Trials of a zonulin blocker, called Larazotide acetate, are currently underway. Thus far, patients with Celiac Disease who take this medication have much “tighter” junctions when ingesting gluten. While this would not be a cure for celiac disease, it would be a great way to prevent people on the GF diet from getting accidentally “glutened.” And if you are a Celiac or have a loved one who is a Celiac, you can understand how truly horrendous it is to get “glutened.” I am curious to see if research will show that increased zonulin levels lead to other food intolerances and sensitivities in those of us with Celiac disease. Since going gluten free I have also developed autoimmune/inflammatory symptoms after consuming foods with soy proteins as well as sulfites. I guess that time will tell. Until then I am patiently waiting….

Save the Date (September 22-25, 2013, Chicago, IL)

I am thrilled to learn that the 15th International Celiac Disease Symposium will be taking place in Chicago from September 22-25, 2013. The last symposium was held in Oslo, Norway in 2011. This meeting will bring together celiac researchers, physicians, nurses, dietitians, patients, etc. from around the world. The latest research on celiac disease and non-celiac gluten sensitivity will be presented. There will be 2 separate forums, one for physicians and scientists, and a clinical forum for patients, clinicians, dieticians, etc.

I plan on attending for sure, as I live within driving distance to Chicago, it’s a lovely time of year to visit the city, and I am eager to learn from this conference. I will likely sign up for the “clinical” track, although there is a part of me which would love to participate in the scientific forum as well (each person can only register for the scientific or the clinical forum).  Luckily, I have plenty of time to make a decision.

Please check out the Symposium’s website for full details and registration. I hope to see you/meet you there and/or share information with you after I attend.