Tag Archives: gluten free diet

The CeliAction Study

A significant percentage of patients with celiac disease continue to have gastrointestinal symptoms and/or small bowel inflammation while on the gluten-free diet. The Celiaction Study is recruiting subjects with celiac disease to test a medication that will help improve symptoms of celiac patients who are already on the gluten-free diet. Since this is a sponsored post, all questions will be answered by a CeliAction Study representative. Thank you!  -Jess

celiaction

Did you know there isn’t a single drug approved to treat celiac disease? Currently, attempting a gluten-free diet is the only option recommended by doctors, but a clinical research study called the CeliAction Study is researching if an investigational drug improves any symptoms of the disease.

You may qualify for the CeliAction Study if you:

  • Have been diagnosed with celiac disease by a healthcare professional
  • Are attempting to be on a gluten-free diet
  • Have experienced at least one moderate or severe symptom of celiac disease in the past month

If you participate in the CeliAction Study, you:

  • Will be able to maintain your current diet restrictions
  • Will be provided with study-related care at no cost
  • Do not need medical insurance to take part
  • May be compensated for time and travel
  • Will help advance medical research for celiac disease

To learn more about this research study and see if you qualify, visit www.CeliActionStudy.com
or call 1-855-3333-ACT.

“Gluten intolerance” can actually be subclinical celiac disease

glutenintolerant

I think most of us have met people who have symptoms of celiac disease, but when tested, are told that their celiac antibody blood tests and biopsy results are negative (normal). Some of these people are labeled “gluten intolerant” or “gluten sensitive” by their doctors, others are told they may have “early” celiac disease, or “pre” celiac disease, and the rest are told that they have nothing wrong and are often advised to continue to eat gluten.  Many continue to eat gluten and find themselves getting sicker and sicker, with an improvement or disappearance of symptoms when they go gluten-free.  Then, when they go gluten-free, since they are “gluten intolerant” as opposed to having celiac disease, it is unclear how closely they need to be followed for vitamin deficiencies, the development of additional autoimmune disorders, and other problems that are associated with long-standing celiac disease.

Whenever I hear that a person is “gluten intolerant” I wonder whether or not the diagnosis of celiac disease was actually missed.  Celiac blood antibody testing can be unreliable in infants and toddlers, people who have a condition called serum IgA deficiency (occurs in up to 3% of celiacs), and when patients are tested after they have already started on the gluten-free diet. Likewise, endoscopies and biopsies are often done incorrectly (see link) which can lead to celiac-induced intestinal damage being missed.

I recently read, with much interest, an article called, “Intestinal-mucosa anti-transglutaminase antibody assays to test for genetic gluten intolerance,” which was published this month by a group of celiac researchers in Italy. Although it’s a bit technical, I will do my best to summarize it for you.

In this study, the gluten-intolerant subjects consisted of 78 pediatric patients who had symptoms of celiac disease but normal celiac antibodies (anti-TTG, also called TTG IgA) and normal small bowel biopsies.  None of the subjects were IgA deficient. Of the 78 gluten intolerant subjects, 12 were found to have anti-TTG antibodies present in the tissue biopsies from their intestines–to clarify, anti-TTG antibodies were found in their intestines, but not in their blood. 3 of the 12 patients in this “gluten intolerant” group, with TTG antibodies localized to the intestine only, were started on a GFD diet and they all had improvement in symptoms and anemia after 24 months on the gluten-free diet. Of the 9 patients with anti-TTG antibodies in the intestines who were continued on a gluten-containing diet, 2 of the 12 had celiac disease at 24 month follow-up. The remaining 7 “gluten intolerant” subjects who remained on gluten-containing diets appeared to have an improvement in symptoms at the 24 month mark, but it is unclear if this reflected a period of remission v. a true resolution of the intestinal antibody response, as there has been no long term follow-up, and as far as I can tell, biopsies were not repeated.

Although this study has a very small sample size, it demonstrates that there are some “gluten intolerant” patients who actually have subclinical celiac disease. In these cases, the celiac immune response is contained to the intestines only and villous atrophy (the hallmark of celiac disease) has not yet occurred. It appears that these individuals benefit from treatment with the gluten free diet.

I am curious to see if the long-term follow-up of the remaining 7 gluten intolerant subjects will be published in the future, and if some of them will also go on the develop celiac disease. I am also curious to see if celiac antibody testing of intestinal biopsy specimens will eventually become part of the standard of care in the clinical investigation of celiac disease.

Reference:

Quaglia, S, De Leo, L, Ziberna, F, et al. Intestinal-mucosa anti-transglutaminase antibody assays to test for genetic gluten intolerance. Cellular and Molecular Immunology advance online publication, 28 April 2014; doi:10.1038/cmi.2014.32.

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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.

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Celiac Disease and Endometriosis

As I was doing my weekly glance through the PubMed database (www.pubmed.gov) I came across an interesting letter to the editor in the Archives of Gynecology and Obstetrics entitled, “Celiac Disease and Endometriosis: What is the Nexus?” Endometriosis is a common gynecologic disorder, which effects approximately 10% of women of childbearing age. It involves the development of endometrium, which is the tissue which lines the uterus, in areas of the body outside of the uterus. Symptoms of endometriosis include heavy menstrual periods, abdominal and pelvic pain, abnormal menstrual cycles, and infertility. Although the exact cause of endometriosis is unknown, theories include retrograde menstruation (endometrial cells from the uterus flow backward into the fallopian tubes instead of out of the body during menstruation), an abnormal placement of embryonic stem cells in the pelvic cavity which produce endometrial tissue, and/or an immune system disorder.

Endometriosis is associated with having the HLA-DQ2 and DQ8 genes (which are also present in approximately 96% of patients with Celiac Disease), as well as the DQ7 gene, which has been associated with Celiac Disease in some southern Italians, Sicilians, and Sardinians.

Two studies published within the last few years have shown associations between Celiac Disease and endometriosis. Researchers in Sweden (Stephansson, et al.) reviewed the medical records of over 11,000 women with Celiac Disease in 2011. Compared with controls, women with Celiac Disease were found to be at a much higher risk of having endometriosis, especially in the first year after diagnosis with celiac disease (overall hazard ratio of 1.39).  The authors postulate that there must be a shared inflammatory process in both disorders. Likewise, researchers in Brazil found that 2.5% of women diagnosed with endometriosis also had Celiac Disease (Aguiar, et al, 2009). Please see the references section for links to these two studies.

The gluten free diet has recently been recommended as a strategy to manage the pain of endometriosis. In a pilot study in Italy, 75% of women with endometriosis had a decrease in pain symptoms after 12 months on the gluten free diet (see link in reference section). This strongly suggests that gluten sensitivity and/or Celiac Disease plays a role in endometriosis.

Although I do not have endometriosis, I have interacted with many women through social networking who do have both gluten intolerance and endometriosis. I can say that my periods have become significantly lighter and less painful since going gluten free after my Celiac diagnosis in 2010. I can also say, without a doubt, that my sensitivity to gluten seems to ebb and flow with my menstrual cycle. I seem to be the most sensitive to gluten cross contamination in the 7-10 day stretch before my period, when my estrogen levels are their highest.

With time, I hope that more research is done examining the link between celiac disease and gynecologic disorders. After reading up on endometriosis I did a PubMed search on “Celiac Disease and Polycystic Ovarian Syndrome (PCOS)” and came up with one article from 2002 that was published in Turkey and did not find an association between the two conditions. I have a feeling that if the study was reproduced in the U.S., on a large scale, that an association between Celiac Disease and PCOS would be shown.

For more information on endometriosis, please check out the Mayo Clinic’s website. Rebecca, from “Pretty Little Celiac,” also wrote about endometriosis on her page in January 2013 (see link.)

References:

1. Mormile, R. and Vittori, G. Celiac disease and endometriosis: what is the nexus? Archives of Gynecology and Obstetrics; June 2013 (e-pub, ahead of print).

2. Stephansson, O., Falconer, H., Ludvigsson, J. Risk of endometriosis in 11,000 women with celiac disease. Human Reproduction. 2011; 26 (10): 2896-2901.

3. Aguiar., F., et al. Serological testing for celiac disease in women with endometriosis. A pilot study. Clin Exp Obstet Gynecol. 2009; 36(1): 23-25.

4. Marziali, M. et al. Gluten-free diet: a new strategy for management of painful endometriosis related symptoms? Minerva Chir. 2012 Dec; 67(6): 499-504.

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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.

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“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.

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“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!

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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.

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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).

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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!

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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!

 

 

 

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.

 

Carrageenan and Celiac Disease

red seaweed

Carrageenan is a food additive that is extracted from red seaweed.  It is used as a thickener and emulsifier and is found in dairy products, processed meat, soymilk, toothpaste, and ready to feed infant formulas. I first came across it on an ingredient list early in on my gluten free (and food label reading) life. Once I learned that it is gluten free and “natural,” I assumed it was safe for me to eat as a celiac. However, a few months ago I began developing GI upset every time I ingested it, and I cut it totally out of my diet. Based on what I have now learned, I am glad that carrageenan is out of my life and kitchen.

First of all, the definitive answer to the question, “Is carrageenan safe for celiacs?” is never going to be known in our lifetimes.  No one is going to pay for a randomized controlled trial in which one group of celiacs are fed carrageenan and one group are fed a placebo, and outcomes of the two groups are measured. It’s just not going to happen.

Carrageenan has antiviral properties and stimulates the immune system.  On a quick search through the Pubmed.gov database, carrageenan aids in killing viruses and is being researched as an additive in treatments for HIV, enterovirus, and human papilloma virus.

When rats are given carageenan, they develop inflammation and arthritis-type symptoms.  Many studies of anti-inflammatory medications involve giving the test medications to Carrageenan exposed, and hence, inflamed rats and monitoring for improvement and side effects.

Research has shown that animals given carrageenan in high doses develop polyps, ulcers, tumors, and inflammation of the intestine. Most of the published research on the effects of carrageenan on human cells and tissues is by Dr. J. Tobacman from the University of Illinois, Chicago.  In the past year she has shown that carrageenan leads to enzyme changes and an inflammatory response in human intestinal and mammary cells as well. See link for more information.

There are two types of carrageenan. The first is degraded, or low molecular weight, and is the type which has been shown to cause inflammation in animals and human cells. It is not used in food products and products for human consumption.  The second type is undegraded, or high molecular weight, and is the type which is added to foods and beauty products.  There is an widespread belief that undegraded carrageenan is safe, and according to the Stonyfield farms website:

The scientific literature overwhelmingly concludes that undegraded carrageenan is safe to eat.  Based on this independent review of the literature, along with the Board’s recommendation to continue to allow it in organic production, we feel that carrageenan continues to be a safe ingredient to use.

What we don’t have any information about is whether or not our bodies convert some of the undegraded (“safe”) form to degraded (“unsafe”) form after we have eaten it. There are a few small studies from the 1970s which show that this chemical change occurs in the intestinal tract of rats and guinea pigs.

The European Union has banned the use of carrageenan in infant formulas due to concerns about safety in this population.  I just checked the website of the major U.S. formula makers and it is still present in most ready-to-feed formulas commercially available in the U.S.

Dr. Weil, M.D., one of the nation’s leaders in integrative health, spoke out against carrageenan in October 2012 (see link), stating, “I recommend avoiding regular consumption of foods containing carrageenan. This is especially important advice for persons with inflammatory bowel disease.”

As a Celiac I’ve made my decision and there’s no turning back now….

Can “Gluten-Free” Make you Skinny?

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This caption caught my attention as I was skimming through a recent issue of Redbook Magazine. I was skeptical to read the article at first, as the two other health features on the same page are titled “Another Reason to Have a Drink” and “Yes, Your Undies Can Be Bad for You.” However, I kept reading and am glad that I did.

I was happy to see this article in a mainstream women’s publication for the following reasons:

  • Gluten is defined, in plain English, as a protein found in wheat, barley, and rye. This is a good thing, as I wrote last month about the general public’s lack of understanding of what gluten actually is.
  • It alludes to the fact that gluten is often hidden in “non-obvious” foods, such as soups, salad dressings, and sausages.
  • The two medical reasons to be on a gluten-free diet, celiac disease and non-celiac gluten sensitivity, are discussed.
  • Although the gluten-free diet is referred to as “the world’s biggest diet trend,” there is not a laundry list of celebs who are gluten free. This is good, because if one more person mentions to me that they’ve heard that Lady Gaga is on a gluten-free diet, I think I am going to rip all of the hairs out of my head!

My criticisms of the article are as follows:

  • As usual, celiac disease is described as an autoimmune disease affecting only the gut, despite the fact that it is associated with so many other problems, including infertility, anemia, osteoporosis, thyroid disease, and fatigue.
  • There is no mention of the huge number of those with gluten sensitivity (up to 8% of the U.S. population).
  • The concept of the importance of cutting out both gluten-containing and gluten-free processed foods is totally ignored. This is a huge pet peeve of mine, as for many, being “gluten-free” means to continue to follow the carbohydrate-heavy, overly processed, standard American diet, i.e. substituting GF bagels for regular bagels and GF frozen dinners for regular frozen dinners.

It is very important for overall health and bodily healing that those of us who have Celiac Disease start on a predominantly whole foods diet. We need to focus on buying, preparing, and eating fresh vegetables, fruits, fish, nuts, lean meats, etc. (instead of GF cookies, muffins, waffles, etc.) While I am grateful that so many GF products exist, and I do indulge occasionally, I am thankful that my diagnosis has forced me to change the entire nutritional landscape of my family. I can assure you that I have not missed being able to eat Cheezits, Lucky Charms, Doritos, or Weight Watchers frozen entrees for a moment.

In summary, while this is not the best article out there about the gluten-free diet, it is an easy and quick read. And it does increase awareness that eating gluten-free is not a magic bullet for weight loss.

Next up, I need to keep reading to find out if my underwear is bad for me!