Category Archives: My Story

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Going Running…and I Need Your Help!

I am excited to announce that I will be running this year’s New York City Marathon as a member of the Celiac Disease Foundation’s “Team Gluten-Free.”  Training has been going well and now that I have hit double-digit mileage for my long runs I feel comfortable sharing this with all of you. I vowed to never run another marathon after getting injured in 2013, but I could not pass up the opportunity to run and raise funds for celiac disease. My five teammates and I have each committed to raise $3500 for celiac disease education, research, and advocacy while training for the marathon on November 2nd.

I was able to resume running after a long hiatus following my celiac diagnosis in 2010 and I credit running with helping me to cope with having celiac disease and other autoimmune issues.  Just last month I added a new tab called “Running” to the top of my blog in hopes to be able to connect with other GF runners and to be able to share information. Please check it out if you are a runner and/or are interested in starting to run.

As of this morning I was $1675 away from meeting my fundraising goal.  I am asking for your help in helping me to get to $3500. Over the last few weeks I have reached out to family and friends (a huge thanks to all who have already donated) and I am now reaching out to our celiac community.  The link to my fundraising site can be found here.

Thanks so much in advance for your help and support. I look forward to representing all of us who need to be gluten-free and you will all be in my heart on marathon day. Also, please let me know if you are also planning on running or watching the NYC marathon…I would love to be able to connect in person! I plan to be in NYC from Friday through Monday of the marathon weekend.

I’ll leave you with a few of my favorite running quotes:

“Long distance runner, what you standing there for? Get up, get off, get out the door.” -Grateful Dead, Fire on the Mountain

“I don’t run because I love the feeling of running. I run because it makes me love the feeling of living.” -Bonnie Pfiester

“That’s the greatest thing about running; your greatest runs are rarely measured by racing success. They are moments in time when running allows you to see how wonderful your life is.” -Kara Goucher

 

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The Scope is Clear (At Least for Now)

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Claire is the youngest of our four children and was the first born after my diagnosis with celiac disease. She was a very healthy baby and I can’t recall her having any health issues during her infancy other than one or two mild colds and a touch of constipation.  Then, when she was about a 13 months old she began to have very high fevers, up to 104.5-105 F, that would come out of the blue and last between 2 and 5 days.  During these fevers she would have no other signs or symptoms of infection (i.e. rashes, vomiting, cough), she looked good, and, for the most part, her blood and other lab tests were normal. She had 9 or 10 total episodes of fever without a source during her 2nd year of life. Celiac disease was always in the back of my mind but I could not link her fevers with eating gluten. Although our home is 100% gluten-free, my kids do eat gluten outside of the home, in part so that I can keep tabs on whether or not they develop symptoms after eating it.

Claire’s fevers stopped in December, only to be replaced by episodes of diarrhea. Her poop was tested for bacteria, parasites, white blood cells, and all kinds of other good stuff.  I opted out of blood screening labs for celiac disease at this point as 1.) The celiac antibody panels are not often reliable in her age group, especially in kids who are “gluten-light” at baseline like Claire was, 2.) I couldn’t bear the thought of making her go through any more blood draws after all the times she’d had to be poked for her fevers, and 3.) I did not want her to have to go through a gluten challenge to get a reliable small bowel biopsy via endoscopy (since she was eating such small amounts of gluten at baseline). Our gut instinct was that her system was reacting to something in her diet. So, we put her on a gluten-free and milk-free diet in January, started her on a high-potency probiotic, and, her poops become normal and the fevers did not return.

Our oldest daughter had a milk protein allergy during infancy, so I prayed that Claire’s symptoms were from a milk protein intolerance of some sort, as most kids outgrow this. However,  when we re-introduced milk, none of Claire’s symptoms returned. But when she accidentally ate gluten the diarrhea and abdominal bloating returned on 2 separate occasions.  And then, when we let her eat a non-GF chicken nugget in April on purpose, both the diarrhea and fever returned with a vengeance.

Although I wanted to be able to keep Claire gluten-free forever, I knew that it was time for her to be formally evaluated for celiac disease.  As a doctor, I feel very uncomfortable trying to diagnose my own kids with anything. It seemed that she was sensitive to gluten, but in order to diagnose a child with non-celiac gluten sensitivity, I knew that celiac disease needs to be ruled out.

We met with a pediatric gastroenterologist named Dr. N who is affiliated with a very well-respected tertiary children’s hospital. Dr. N was phenomenal and very knowledgeable about celiac disease. He assured me that he would take enough duodenal biopsy samples (at least 5) and that he would include the duodenal bulb (in some cases, this is the only part of the small intestine where the damage from celiac can be found). He agreed that even if Claire’s small bowel biopsy showed only Marsh 1 damage (mildest findings seen in celiac disease) that he would give her a celiac diagnosis based on her symptoms and family history. We began to give Claire foods with gluten to eat, and for weeks she enjoyed non-GF pizza, Oreos, ice cream with cereal bits on top, and all kinds of other treats that she does not normally eat. Interestingly enough, she did not develop diarrhea but instead became mega-constipated. She did not develop a fever. I almost cancelled the biopsy at this point but decided to go through with it as Dr. N. said that he’d seen this happen with previous gluten challenges in kids who ended up having celiac disease.

Claire could only have clear liquids on the morning of the scope, so all four of our kiddos drank white grape juice and ate yellow jello and popsicles for breakfast. I let her watch Frozen during the 2 hour drive to the hospital. Claire was in great hands with the nurses, anesthesiologist, and other staff who we met at the children’s hospital on the morning of her endoscopy. She was given a medication called Versed which made her sleepy and 20 minutes later they wheeled her away to the O.R. The entire procedure took 15 to 20 minutes and we were reunited about half an hour later when she woke up.  She was a bit cranky at this point, much like she would have been if we woke her from a deep sleep at home, but soon after she was drinking juice and eating peanut butter out of little individual cups with a spoon.  She then ate a huge bowl of GF mac and cheese followed by about 8 cookies. Two hours later she was running around outside in the sunshine, sharing a GF pizza from California Pizza Kitchen with me, and as happy as could be, and since then she seems to have total amnesia for the entire experience. Thankfully.

We received results 4 days later that her duodenal biopsies were normal and did not show celiac disease.  Since the biopsy results came back she has eaten gluten several times without getting ill or having digestive symptoms. I am glad that we went through with the testing. I’m not sure that this will last forever (just because she doesn’t have celiac disease now doesn’t mean that she won’t develop it in the future) and I have no idea why she was having the diarrhea or fevers, but for now I am grateful.

Out of curiosity, has anyone else had a toddler who seemed to have reactions to gluten that disappeared?

 

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My Kids are Bakery-Deprived

We just returned from a spending a week in Florida to celebrate Easter with my grandparents. As we were flying back I asked my 3 oldest kids what their favorite part of the trip was, expecting that the one thing they’d agree on would be “playing at the beach,” “exploring the park with four playgrounds,” or “going to the Easter egg scramble.”  Instead, they all agreed that their favorite experience was actually going to a bakery. On our very first day in Florida we went to a gluten-free restaurant and bakery in Melbourne Beach called The Bald Strawberry. Since it was just a few days before Easter, the glass display cases at The Bald Strawberry were filled with cupcakes, and cookies, tortes, and macaroons, and we let each of the kids pick out a treat to take home.

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We somehow ended up with an extra chick cupcake, which I gladly ate, but since I’m not used to eating sugar anymore, found to be very sweet.

Although I had spent my entire childhood going to bakeries with my mom, for my kids the Bald Strawberry was a novel experience. I realized that since my celiac diagnosis 4 years ago, all of my GF bakery experiences (Sweet Marie’s, Pip’s Place, Happy Bellies Bakeshop) have been when traveling without kids. As far as I know, my kids had not even stepped foot in a bakery since our entire family went gluten-free in 2012.

So, I am asking for your help. This summer we plan to travel to Boston, NYC, Cleveland, Madison, WI, and Chicago. Do any of you have dedicated GF bakery recommendations for any of these cities? I appreciate your help in advance, as do my 4 little ones, as you will help them to overcome their bakery deprivation.

Also, as a total aside, my grandparents are celebrating their 67th wedding anniversary this summer! Congratulations G&G!

 

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Mast Cell Activation Syndrome Madness

At this time last year I had never heard of mast cell activation syndrome (MCAS) and the first time that I heard the name I thought that it was a “made up” disease. Since then I have come to realize that it is a real diagnosis and I have learned a ton about it, including the following:

  • MCAS is a newly recognized disease of the innate immune system (our bodies’ first line of defense against bacteria, viruses, parasites, and other invaders).
  • Women make up the majority of patients with MCAS.
  • Symptoms are caused by having too much histamine in one’s system and can affect almost any part of the body (see comprehensive list below).
  • MCAS is very common (there is pilot data showing that 17% of Germans are affected to some degree).
  • It is acquired during life; no one is born with MCAS and it is not yet known why it develops in certain people.

I am one of the unlucky people to have acquired MCAS during my journey through life. Although I really wish that I didn’t have it, I am sharing my story in hopes that I can help others.

Mast cells are innate immune cells that play a role in defending the body against bacteria, viruses, and parasites, but are best known for their participation in the allergic response. When mast cells degranulate, or burst open, histamine and other chemicals are released, leading to symptoms which we associate with allergies, including having a runny nose, wheezing, hives, etc. Most of us are familiar with the antihistamine drugs that are used to treat allergic symptoms, such as Claritin, Allergra, and Zrytec. Although these medications do not prevent mast cells from releasing histamine, they prevent symptoms by blocking histamine receptors.

In mast cell activation syndrome (also known as mast cell activation disorder, or MCAD), mast cells have excessive degranulation, release too much histamine, and adverse symptoms develop. Symptoms can vary from person to person and will often become worse in the same person with time. Some patients will experience only one or two symptoms from having too much histamine floating around, and other patients will experience many, many symptoms. Although urticaria (hives) is the classic symptom associated with mast cell degranulation, in many cases patients with MCAS do not have urticaria or any skin findings. I have never had hives and the only skin symptom that I get from MCAS is facial flushing from time to time.

According to the Mastocytosis Society Canada’s website, the most common symptoms of MCAS include the following:

  • Gastrointestinal symptoms, including nausea, vomiting, diarrhea, abdominal pain, bloating, and malabsorption* (sounds a lot like celiac and/or irritable bowel syndrome doesn’t it?)
  • Low blood pressure*
  • Fatigue*
  • Wheezing*
  • Itching, flushing*, hives
  • Episodes of fainting or dizziness
  • Bone pain*
  • Cognitive impairment (brain fog)*
  • Anxiety
  • Rapid weight gain or loss
  • Anaphylaxis
  • Chest pain and/or a racing heart*
  • Sensitivity to sunlight

* = symptoms that I have personally experienced as a result of MCAS. I saw several different subspecialists before we were able to piece all of these symptoms together.

Common triggers for mast cell degranulation in those of us with MCAS include the following:

  • insect stings
  • pain medications such as NSAIDs and narcotics
  • foods and drinks that are high in histamine or are known to trigger histamine release
  • extreme temperatures, both hot and cold
  • exercise
  • strong scents including perfumes and chemicals
  • friction, pressure, or vibration on the skin
  • emotional and physical stress

At this point, my only known triggers for MCAS are high histamine foods and foods that are histamine-releasing, including fermented foods and foods/drinks that have added sulfites. Please see my previous post “Celiac Disease and Multiple Food Intolerances” from July 2013 for more details on food triggers and high histamine foods. Since beginning treatment for MCAS late last summer, the other food intolerances that I had attributed to my celiac disease have markedly improved. My sulfite allergy/intolerance also appears to have been as result of untreated MCAS (see link).

The first case reports of MCAS were just published in the medical journals in 2007 or 2008, so in most cases, the only doctors who have learned about MCAS during medical school are the really young ones. Systemic mastocytosis (SM) is a well-known, very serious mast cell disease in which there are too many mast cells in the body that invade into other parts of the body, including the bone marrow. In MCAS patients the numbers of mast cells are normal (this is what differentiates it from SM) but the mast cells that are present are overly active and degranulate much more often than they should. SM and MCAS share a lot of the same symptoms but MCAS is on a milder scale.

According to Dr. Larry Afrin, MD, a professor at the University of South Carolina who is one of the world’s experts on MCAS, testing should consist of the following:

  1. Complete blood cell count with manual differential, comprehensive metabolic panel, and a serum magnesium level (these are usually part of a doctor’s evaluation for a patient presenting with any type of chronic illness). Coagulation studies and serum immunoglobulin levels may need to be done depending on presenting symptoms.
  2. Blood tests consisting of serum tryptase and plasma histamine levels. If the tryptase is greater than 20 ng/mL, then a patient must be evaluated for systemic mastocytosis. In MCAS the tryptase, although often elevated, is almost always less than 20 mg/dL.
  3. Plasma prostaglandin D2 (PGD2) and heparin levels.
  4. Chilled 24 hour urine sample for PGD2 and methylhistamine.

In many cases of MCAS the baseline tryptase and histamine levels can be normal, so it is important for a patient to have these labs done two times (both at baseline and when symptomatic). Both blood and urine levels of histamine and tryptase should rise after mast cells are triggered. Therefore, MCAS cannot be ruled out based on one set of normal labs. This differs from many other diseases that can be ruled out if an initial set of lab tests are normal. In my case I had abnormally high urine prostaglandin levels on two separate occasions and my tryptase and histamine levels rose when I was symptomatic (both were totally normal at baseline when I did not have any symptoms going on).

Treatment options for MCAS include H1 antihistamines (such as Claritin, Allegra, and Zrytec and their generic forms), H2 antihistamines (such as Pepcid and Zantac), and mast cell stabilizers such as ketotifen and cromolyn sodium. I initially had a difficult time finding an H1-blocking antihistamine that worked for me, as most contain cornstarch and other sulfited ingredients which are triggers for my mast cells to degranulate. But I have recently done very well taking a compounded sulfite-free form of generic Claritin twice a day. I have also done my best to follow a low-histamine diet, and I believe that this has made the biggest difference in my symptoms improving. Yasmina, the Low Histamine Chef, who also has MCAS, has been a wonderful resource for learning about the low-histamine diet and recipes. If I keep my overall histamine intake low, I find that I can indulge in an occasional glass of wine or enjoy a small serving of aged cheese without starting to wheeze like I used to in the past.

Interestingly enough, since starting on this MCAS journey I have met about a dozen or so other women who have both celiac disease and MCAS.  Many of us have found that our MCAS/histamine symptoms seem to spiral out of control after getting accidentally “glutened.” DAO, the enzyme in our bodies that breaks down histamine, is produced in our digestive systems, so it does make sense that the gut damage we experience from gluten may lead to a decrease in DAO (and hence, our bodies getting overwhelmed with histamine that cannot be broken down). My gut instinct (no pun intended) is that many of us with celiac disease and non celiac gluten sensitivity have MCAS going on to some degree. I guess that time will tell…In the meantime, if you are experiencing symptoms that seem puzzling, involve multiple systems of your body, and popped up out of the blue, I encourage you to look into MCAS as a possibility and discuss your symptoms with your doctor.

There are some great references on the internet for learning about mast cell activation syndrome and histamine intolerance, including the following:

1. Mastocytosis and Mast Cell Disorders from the Mastocytosis Society Canada’s website (www.mastocytosis.ca). Accessed Jan. 3, 2014.

2. Presentation, Diagnosis, and Management of Mast Cell Activation Syndrome by Lawrence Afrin, MD, chapter 6 in the book Mast Cells edited by David B. Murray, 2013.

3. Histamine Intolerance on Allergy UK website (www.allergyuk.org). Accessed Jan. 3, 2014.

4. Mast cell activation syndrome: a newly recognized disorder with systemic clinical manifestations.  Hamilton, M., Hornick, J., Akin, C., et al.  J Allergy Clin Immunol. 2011. 128 (1): 147-152.

5. Mast Cell Activation Syndrome: A Review.  Frieri, M., Patel, R., Celestin, J.  Curr Allergy Asthma Rep. 2013. 13: 27-32.

6. Histamine Intolerance by Dr. Janice Joneja on webpage www.foodsmatter.com. Accessed Jan. 3, 2014.

7. Expanding spectrum of mast cell activation disorders: monoclonal and idiopathic mast cell activation syndromes. Picard, M., Giavina-Bianchi, P., Mezzano, V., et al.  Clinical Therapeutics. 2013. 35(5): 548-562.

Dr. Afrin’s chapter on MCAS for physicians (#2 above) is the most comprehensive document that I have come across regarding all that is known about MCAS.

Lastly, I would like to thank my friend Harriet for all of her advice and help on this journey. If it was not for her assistance, I would probably still be wheezing and flushing with chronic brain fog and irritable bowel syndrome despite being strictly gluten free.

Happy New Year and thank you for reading!

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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.

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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.

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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!

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Good Reads (Mostly Gluten-Free)

I have always been passionate about reading. Between my book club and blogging world, I have been introduced to some great books since the beginning of this year. I will share a list of some of my favorites with you. Please keep in mind that I am not a professional book reviewer and that the last time I took an English/writing class was during my freshman year of college!

1. The Gluten-Free Edge by Peter Bronski and Melissa McLean Jory.

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If you are an athlete with either Celiac or non-celiac gluten sensitivity, this is the book for you. It is full of practical advice and I made the mistake of reading it after training for my first marathon last spring, instead of before. Peter and Melissa are bloggers and truly understand what it is like to live with gluten-intolerance/Celiac Disease.  There are great, easy recipes at the end of the book too.

2. Wild by Cheryl Strayed

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This autobiography tells the story of a woman who hiked the Pacific Coastal Trail by herself in the 1990s. Her story makes having Celiac Disease seem not so bad! It’s a quick read but inspirational.

3. Mind over Medicine by Lissa Rankin, M.D.

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This is a non-fiction piece by a former OB-GYN who has immersed herself in the spiritual side of medicine. She does a wonderful job of describing the placebo and nocebo effects, and the power of our minds in our bodies’ abilities to deal with and, in some cases, heal from chronic illnesses.

4. Beautiful Ruins by Jess Walters

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I bought this at an airport kiosk during an unanticipated flight delay.  The novel is based in a small Italian town near the Cinque Terre on the Mediterranean, spans several generations, and is extremely well-written.  It reminded me a bit of some of Jonathan Franzen’s novels that I have read in past years.

5. Half the Sky by Nicholas Kristof and Sheryl WuDunn

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This beautifully-written book blew me away and opened my eyes to the modern-day oppression of women throughout the world. The authors tell the stories of women who have devoted their lives to helping other women escape sexual slavery and other oppressive environments, including Somaly Mam of Cambodia who has devoted her life to rescuing young girls from brothels.  There is also a 2 part documentary about the book that is aired on PBS from time to time. Please read this book and share it with others to get the word out!

6. The Alchemist by Paolo Coelho

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This simple fable tells the story of one boy’s quest to find his “personal legend” and in doing so, reminds us of the importance of living in the moment. I am thankful to have been introduced to this author and look forward to reading more of his novels.

7. Her Best Kept Secret by Gabrielle Glaser

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Ms. Glaser gives a historical overview of alcoholism and women in the U.S. and explains why AA (and rehab programs based on the 12 steps) may not be the best fit for some women alcoholics. It was eye-opening and helped me to relate to some close friends who are struggling with similar issues.

8. Pet Goats and Pap Smears by Pamela Wible, M.D.

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This book consists of a series of short stories by Dr. Wible, a family practice physician in Oregon who has created the first “patient designed” medical practice in the U.S. Dr. Wible reminded me that it is okay to cry with, hug, and show emotion to my patients and their families. It reminded me why I entered medicine in the first place (to be able to care for others and help people heal).

9. The Impossible Lives of Greta Wells by Andrew Sean Greer

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Greta, the main character in this book, is able to travel between 3 time periods and live parallel lives. If you liked “The Time Traveler’s Wife” you will like this book too. I think I finished it in only 2 or 3 nights, which is pretty good for me these days.

10. The Sense of an Ending by Julian Barnes

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This short novel shares the reflections of a man who lost his best friend to suicide during early adulthood.  If I try to describe it, I am not going to do it justice, so I suggest instead, that you read it and reflect, and then read it again.

Have you read any good books lately? If so, feel free to suggest away….some of the best suggestions I have gotten for books to read have been from total strangers!

 

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My, Oh My, Peripheral Neuropathy

I spent a good chunk of last Christmas Eve in an MRI scanner, getting my spine analyzed for the white matter lesions of multiple sclerosis (MS). Mike, the MRI technician, piped George Winston’s “December” CD through my MRI headphones, but the music did little to drown out the loud hammering sounds of the MRI and the thoughts that were racing in my head. I prayed and bargained while I was in the scanner, with thoughts such as, “If I do have MS, please let it be relapsing-remitting and not primary progressive,” and, “If I am going to become disabled from MS, please let it happen after my 4 babies have been raised and are out of the house.”

I developed a peripheral neuropathy (nerve damage) last fall, about 2 and a half years after going gluten free for my Celiac Disease diagnosis. In September 2012 I felt better than I had in quite a while and was training for my first half marathon after having Claire in March. Then, the first week of October, I had a pretty bad “glutening” episode (thanks to Trader Joe’s) which took me quite a while to bounce back from. Two weeks later, while visiting family in Boston, I developed persistent numbness and tingling in my hands, feet, tongue, and right upper lip, followed by extreme fatigue and difficulty concentrating/lapses in my short term memory. I went to see a neurologist after my symptoms had persisted for about a week and a half. My full neurologic exam at this point was unremarkable. My brain MRI was normal. I was evaluated for Lyme Disease, lupus, diabetes, sarcoidosis, and several other autoimmune and vascular diseases. My Vitamin B12 and copper levels were normal. My thyroid function was assessed (I have Hashimoto’s Disease and take daily levothyroxine) and everything thyroid-wise was normal as well. My neurologist told me that based on recent research, as well as in his experience, Celiac Disease is the third most common cause of the development of a peripheral neuropathy, behind diabetes and alcoholism. He told me that if my neuropathy was indeed Celiac-related, that it should resolve in 3-6 weeks. And it did. I was out running one day and I finally felt like my feet were back to normal after weeks of running with numb feet (which, looking back, probably wasn’t the smartest thing to do!)

We took all gluten out of our home at this point to avoid exposing me to any inadvertent gluten cross-contamination. I stopped eating GF processed foods entirely. But then Thanksgiving came, and I know that I got a hit of gluten somewhere, and about one week later my neuropathy returned to me. I was in the middle of watching my daughter perform in a Christmas ballet routine with Martina McBride and I had a sudden onset of numbness in my hands, feet, tongue, and upper right lip. Again, the symptoms lasted for days which turned into weeks. I returned to my neurologist and he ordered the rest of the testing for multiple sclerosis: a retinal exam to look for optic nerve thinning, visual evoked potentials, and the Christmas Eve spinal MRI, all of which were normal. The numbness and tingling slowly resolved and were gone by New Year’s. I was grateful to not have MS.

Since December, I have had the neuropathy symptoms return only twice, once in January and once in July. They have both occurred after traveling, the only time that I am really ever taken out of my gluten free home (aka safe haven) and been exposed to cross-contamination. Fortunately,  for reasons that are still unclear to me, my neuropathy symptoms lasted just days, instead of weeks, these last two times.

I started this blog last fall as a way of coping with my new neurologic symptoms from Celiac Disease. I had truly under-appreciated the effects that small amounts of  gluten cross-contamination could have on my body until I developed the peripheral neuropathy. Although I did write about the neurologic effects of gluten last fall (see link), I was not prepared to share my personal experience until now.

In conclusion, many patients with Celiac Disease will go on to develop peripheral neuropathies, even while on a gluten free diet. If you have Celiac Disease or non celiac gluten sensitivity and develop symptoms of a possible peripheral neuropathy, please be evaluated by a neurologist to make sure that something treatable, such as a vitamin deficiency or Lyme Disease, is not going on.

For more information on Celiac Disease and peripheral neuropathy, please check out the following links:

1. Peripheral Neuropathy. National Foundation for Celiac Awareness. Accessed 9/10/2013.

2. Celiac Neuropathy.  The University of Chicago Celiac Disease Newsletter. Spring 2010. Accessed 9/10/2013.

3. Chin, R. and Latov, N. Peripheral Neuropathy and Celiac Disease. Current Treatment Opinions in Neurology. 2005; 7: 43-48.

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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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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

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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!

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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!

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Celiac Disease (Out of the Mouths of My Babes)

I am not going to be able to write a new post for a while due to time constraints, but I’d like to share the answers to some questions about Celiac Disease which I recently asked my 7, 5, and 3 year old children. I promised them that I would post the answers from their “interviews.” I did not interview the 1 year old for obvious reasons!

  1. What is Celiac Disease?

3 y.o.: “It’s dumb.”

5 y.o.: “It makes you not eat gluten foods.”

7  y.o.: “If you eat gluten, even by mistake or accident, you get really sick.”

  1. What is gluten?

3 y.o.: “A butt ”(followed by a lot of giggling!)

5 y.o.: “A type of thing that Celiacs cannot eat.”

7 y.o.: “Stuff made out of wheat. Foods with crumbs usually have it.” I am pretty sure that this answer is better than what you would get from the general public if asked the same question.

  1. What foods have gluten?

Collaborative effort:  bread, bagels, vanilla wafers, donuts, frosting and cake, ice cream, pizza, milk, French fries, hamburgers, hot dogs, sausages. Not sure where the milk came from, but they had recently experienced my disappointment on Mother’s Day when we found out that the ice cream at our local (favorite) ice cream shop now contains gluten.  My husband was the recipient of my free Mother’s Day dish.

  1. What foods do you miss?

Collaborative effort: Daddy’s oatmeal (Quaker Instant), Cheezits, pizza bagels, Goldfish crackers, vanilla wafers, ice cream sandwiches. I am truly not sad that they cannot eat these foods anymore.

  1. If you found out you had Celiac Disease, how would you feel?

3 y.o.: “Happy, because I can’t eat gluten anymore.”

5 y.o.: “Sad, because I would miss the gluten.”

7 y.o.: “Kind of happy and kind of sad.”  This is most similar to how I felt after diagnosis….

  1. What are your favorite gluten free foods?

Again, a collaborative effort:  Salmon, Annie’s Bunnies, lentils, hamburgers, chocolate, raisins, yogurt, Fruity Pebbles, popcorn, tortilla chips, Cinnamon Chex. I realized that I have not been as good about removing processed foods from our house as I thought I had been!

As life settles down a bit I hope to write about dermatitis herpetiformis, the relationship between Celiac Disease and other autoimmune diseases, non celiac gluten sensitivity, yoga, DNA testing, and much more. Please let me know if you have any topics/areas which you’d like me to try to tackle, and thanks for all of your support.

 

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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?

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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.

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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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My First Trip to a Gastroenterologist

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I have been wanting to get this story off of my chest for a while! Alternative titles ideas for this post included, “Why I did not become a Gastroenterologist,” and, for my M.D. friends, “Some females with chronic abdominal pain may actually be suffering from gluten intolerance.”

I saw a gastroenterologist for the first time approximately 16 years ago. It was the summer between my freshman and sophomore year of college. It is etched in my memory because it was such a horrible experience.

I suffered from a mysterious mono-like illness when I was 18 that started shortly after an episode of food poisoning. Soon after, I began to have episodes of sharp, stabbing, diffuse abdominal pains accompanied by bloating and diarrhea. My symptoms seemed to always get worse in the evenings, shortly after dinnertime. I wondered why I would go from looking “not pregnant” to about 8 months pregnant within minutes. I slept with a heating pad on my abdomen most nights. I also had recurrent pharyngitis, fatigue, oral ulcers, and anemia. I also could eat anything I wanted without gaining any weight (which I admit, I thought was pretty cool at the time).

I was treated over and over again for stomach and duodenal ulcers, but despite treatment, my symptoms continued to worsen. During my freshman year I had an upper GI performed (barium swallow) which was normal. My adolescent medicine doctor referred me to a Gastroenterologist and I met him that following summer. It was a memorable experience…but not in a good way! The GI doctor came into the room and didn’t introduce himself. He never sat down. He did not look me in the eye. He reviewed the results of my upper GI study and told me it was normal. He told me that I had Irritable Bowel Syndrome (IBS). He asked me if I had ever been sexually abused. After telling him that I had not, he told me that I must have been abused and was repressing it, because, in his experience, most of his female patients with Irritable Bowel Syndrome had abdominal symptoms as a result of abusive memories. He recommended that I get psychological counseling and to eat a lot of whole grains. He walked out the room.

I remember this interaction vividly because I was planning on going to medical school and it was one of my first experiences as an adult patient. Although I cannot remember the name of the Gastroenterologist, I know that, if I really wanted to, I could find him, as at the time he was working at a large university hospital in a large mid-western city. I hope to God that he actually evaluates his IBS patients for Celiac Disease now, in lieu of recommending psychological evaluations and whole grains. Actually, I hope for the sake of all that he is no longer practicing medicine!

Perhaps I have shared too much with you, but I know that there are tons of Celiacs who have had similar experiences to mine. The lesson that I learned was that I should have gotten a second opinion (or third, or fourth if needed). And, if you or your loved ones are having symptoms that seem to be dismissed, that you need to seek alternate opinions as necessary.

Also, despite there being bad doctors out here, most of us truly care about our patients and want them to heal! We continually learn from our patients as well. Please ask questions and provide us with information that you think is important and relevant to your care and the care of your family. I have learned a ton from the parents of children with chronic illnesses through the years.

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My “Unlucky” Seven

Since going gluten free 3 years ago I have made my share of mistakes leading to “glutenings.” Most of them were in my first 6 months post-diagnosis. I am sharing my list in hopes that I may prevent others from getting sick like I did. I am also sharing so that friends and family members of Celiacs may understand why their Celiac loved one may seem to be “paranoid” from time to time.

1. Shampoo: I had a bad case of brassy highlights and bought a “blueing” shampoo to use a few times a week to neutralize the brassiness. Lo and behold, I began to feel ill, and one morning, as I read the ingredients while in the shower, I realized that my shampoo contained hydrolyzed wheat protein. There is a lot of controversy about whether or not gluten can be absorbed through the skin, but in this case, I believe that a little bit of shampoo was probably getting into my mouth while I was rinsing my hair. I stopped using the shampoo and my symptoms went away. Problem solved. My lesson learned was to always read the ingredients in hair products before buying and using them.

2. Playdough: Yes, this seems obvious, but I honestly thought that if I washed my hands carefully after playing with it, that I would be safe. I had figured that as long as I didn’t actually eat the Playdough that I would be fine. I was totally wrong. If you’re a Celiac with kids, you cannot touch Playdough with a ten foot pole! Trust me.

3. Eating gluten free pizza at a pizza parlor that makes regular pizza: Looking back, it seems obvious that this was a bad idea, but I had confirmed with the kitchen staff ahead of time that there were no gluten ingredients, that the gluten free pizza would be made on a separate surface, that the flour used to roll out my pizza was gluten free, etc. I learned a lesson in cross-contamination.

4. Hand sanitizer: I was traveling for a work conference, through lots of dirty airports, subways, etc. in the middle of winter, so I used a lot of hand sanitizer. Unfortunately, I soon discovered that it had wheat amino acids in it. Like the shampoo incident, I don’t believe that I absorbed the wheat protein through my skin, but I used the sanitizer many times before eating, and thus, probably ingested trace amounts that built up in my system and made me ill.

5. Soup at an airport café: As most celiacs know, soups are usually unsafe. I was at an Au Bon Pain at a major airport (yes, a very poor choice of café for a Celiac) and was pregnant and starving. The soup was labeled as a gluten free white bean soup and there were ingredients listed, which were all “safe.” But it wasn’t actually safe at all. I am pretty sure that the ladle must have been contaminated by being dipped in some of the other soups, and then put back into the gluten free one. That was the last bowl of soup that I ever ate….

6. Making Christmas cookies: This happened shortly after the Playdough incident, but I was still in denial that I could get sick just from touching/handling wheat flour. My kids and I made dozens and dozens of cut-out Christmas cookies using regular flour. I washed my hands numerous times, picked dough out from underneath my fingernails, and obviously didn’t eat any of the cookies, but still got majorly glutened. Hence, the gluten free cut-out cookie recipe that I shared with you last week!

7. Trusting a “no gluten ingredients” label: This was my most recent glutening. We do not live near a Trader Joe’s but will often stop at one when traveling. I have always avoided any of their products that have the disclaimer that they are made on “shared equipment” with wheat because I know I am sensitive and react to traces of gluten. We bought and prepared a basic spaghetti sauce that was marked as “no gluten ingredients” and did not have the shared equipment warning on it. We ate it with rice pasta for dinner and I got sick (no one else in my family did). I contacted Trader Joe’s via email and they did write back that the sauce was made on shared equipment. I have learned to never make any assumptions about processed foods.

As time has passed I have learned how careful I really need to be to prevent getting sick. I wish that I knew at diagnosis what I know now, that being “gluten free” is not as simple as it sounds and to not take risks with the diet. For those of us with Celiac Disease, eating gluten free is not trendy or a “fad,” it is the difference between sickness and health. As the actress Jennifer Esposito, a Celiac, recently stated, “This disease is no joke.” I wholeheartedly agree.

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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…..

 

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My First Introduction to Celiac Disease

For my first 24 years of life I was oblivious to the existence of gluten, and unaware that I was consuming gobs of it on a regular basis. My diet in the year 2000 consisted of pizza, pasta, chicken parm, cookies, brownies, bread, waffles, etc. One of my first medical school lectures in Genetics that year was about Celiac Disease. A tall, red-headed woman with Celiac Disease, who was probably in her early forties at the time, shared her experiences of being a Celiac and living gluten free. She told us the following:

  • When she went to McDonald’s, she had to eat her burger without the bun
  • It was difficult for her to find a gluten free toothpaste, as all the major brands contained gluten
  • It cost $8-$10 for one box of brownie mix
  • Gluten free bread tasted very bad
  • It took her years to get a proper diagnosis of Celiac since she was not underweight
  • She would get extremely ill if she accidentally took one bite of a gluten-containing food

I remember thinking was that I her life was horrible and secretly feeling smug that I did not have to worry about gluten. Every time I hear someone say, “I would rather die than have to give up gluten,” I think back to this lecture and remember feeling the same way. Only now I freely choose to avoid gluten because if I continue to eat it I will die.

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