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Happy Gluten-Free Spring

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Reference:

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

16 thoughts on “Happy Gluten-Free Spring

  1. Diana Thompson

    That is huge to not have that fatigue hanging on one all of the time. I see you have been there. I left several symptoms behind: foggy mind, extreme fatigue, and aching feet. This has made a huge difference in my life and even the life of my family. The last 2 years (since diagnosis) may have been the most difficult years of my life, but I am so glad I am here. I no longer fall asleep between words on a spelling test, or teach homeschool from the couch. My family can see me smile instead of just speaking the bare minimum critical phrases.

    I am so glad to hear others discuss the ethical aspects of gluten challenges. I forego one knowing my body thought it wrong. I suggest instead assessing diet by seeing how well the small intestine is working. I believe this can be done by checking nutrient levels. Mine began low in spite of an incredible diet and supplements. They have now come up to nearly normal.

    Best wishes to all who are being diagnosed and hoping you will have a story that ends well.

    1. Jess Post author

      Hi Diana,
      It’s good to hear from you. I agree that mothering is a bit easier when one doesn’t feel like they have to sleep all of the time.
      Congratulations on the improvement in your nutrient levels too. What do you think has been the main key to the improvement?
      Your story is inspiring for others who are newly diagnosed.
      There are some new tests in development that will hopefully lead to the dreaded gluten challenge, hopefully they will be available sooner than later for mainstream use.
      Jess

  2. Dana

    Thanks for sharing all your great research in this post, and beyond! You do a wonderful service with your blog.

    I agree with much of what you wrote, especially about eating more healthily and avoiding fast food as an easy way out, but – all the food planning get exhausting and there are times I just wish I could leave my home without an arsenal of food (in my card my daughter has celiac, but we’re all gf). However, I’m grateful that diet alone keeps her healthy.

    Hope you have a wonderful spring!
    -Dana

    1. Jess Post author

      Hi Dana,
      Happy Spring to you too! We actually were out over the weekend snowshoeing (yes, sad but true that it’s still possible to do this at the end of March) and I forgot to bring snacks and drinks with us. So we had to stop at a gas station, and I started to get really anxious, but they luckily had bananas, apples, and single serving bags for the Food Should Taste Good sweet potato chips, so all was good. I am also thankful for the app Find Me Gluten Free when we are traveling. Do you have any other app recommendations?
      Hope you and the family are well too!
      Jess

  3. Vik

    Hi Jess, Happy Spring. Thank you for summarizing this article and for the positive post. Like you, I’m glad that I’m feeling better, and also for the people (like you) and events I have experienced, that I never would have known about, otherwise. I have appreciated the acts of kindness from friends and family. And it’s good to know about the celiac, so I finally know what’s going on and and continue to work on getting healthier.

    1. Jess Post author

      Hi Vik,
      I agree with you. I never in a million years would have imagined that I’d be blogging about all of this when I was diagnosed 4 years ago. Outside of my husband’s aunt I knew no one with celiac, and I thought that the whole thing sounded awful (was relieved to have an answer, but it all seemed so daunting). It’s definitely taken time, but I believe it’s all been worth it.
      I love the random acts of kindness and surprises too, and being able to meet people like you!
      Happy spring to you too!
      Jess

  4. Sara

    What are your thoughts on biopsy for children? Would you recommend a challenge instead? Our son’s blood work is good (he is 7), no inflammation markers, but he has intense, daily arthralgia in his knees, ankles, elbows and fingers. Sometimes during the day, but more often in the evening. This has been going on for over a year, though the pain began when he was three, but less often and less intense. When he was an infant he was breastfed, but digestion was an issue even then. Things got a little better when i went off wheat and dairy. He is chronically tired, and doesn’t develop strength or stamina at the same rate as his younger brother. He often seems slightly unwell though the rest of his family seems fine. He cannot keep up with his classmates, though he works so hard. He has fructose intolerance as assessed by breath test, arthritis was ruled out. He has been tested for lupus and celiac (canadian blood tests) repeatedly with clear results. I wonder if the pain might be from the fructose intolerance or celiac that doesn’t show on the bloodwork. Wondering if you might have some thoughts for this little guy!

    1. Jess Post author

      Hi Sara,
      I am sorry to learn what your son is going through.
      Has he been evaluated by a pediatric rheumatologist, or has all of this testing been through his pediatrician? Did they rule out juvenile idiopathic arthritis? I ask because my nephew has JIA and your son’s story reminds me of him.
      When he had the celiac blood tests was he eating gluten, or was he gluten free (or gluten light?) How old was he when they were done?
      Although I can’t give you true medical advice on here, if you were my friend I would recommend the biopsy so that you can be certain whether or not celiac is present. In older kids the celiac antibody blood tests are reliable, but in some kids the tests can be negative even if celiac is present (the kids will have small bowel damage on biopsy even with normal blood tests).
      As a mom I think that the most important thing is to trust for instincts about what is going on. The longer that I’ve been in practice, the more I’ve learned and seen that moms are usually almost always right when it comes to the health and well-being of their kids.
      I hope that you can find some answers.
      Jess

      1. Sara

        Thank you Jess! His blood was tested for celiac and lupus and other autoimmune markers at 5, 6 and having just turned 8. All clear. JIA has been ruled out by a ped. Rheumatologist. Just went to see a ped. GI Who had ordered the most recent tests. I appreciate the encouragement about instincts. I feel about to give up except for the fact that i don’t want be giving him pain meds all the time and want to see him enjoying a full life!

  5. Chrissy

    Hello! I just found your fantastic website, and I am excited to read more later (I am on my lunch break). I was wondering if I could get your expert opinion on something. We are having a rough time getting answers for my 6 yr old son’s digestive issues: small stature (1st percentile), nausea, vomiting occasionally, diarrhea occasionally, abdominal pain, bloody stools occasionally, trouble sleeping sometimes. There is strong autoimmune disease in my maternal family line (MS, thyroid, diabetes), and I have had an undiagnosed chronic itchy rash on my elbows and knees since I was a child. I was told I was allergic to grass without any tests run. Anyways, I asked my pediatrician to run a celiac profile because I highly suspect that or at least gluten sensitivity. Results were: ttg level 3.78 (ref 0-15), anti gliadin iga 9.78 (ref 0-15), anti gliadin igG 32. 14 (ref 0-15), total igA 174 (ref 33-220). We were referred to a GI specialist, but he wrote off the Possibility of celiac and sent us with an Rx for an antacid. I haven’t given it to my son, but I am trying him GF, and already we see improvement.

    I wanted to get myself and my son tested through Enterolab, however, since we live in NY we cannot pay a private lab for testing due to laws. I was thinking about going to Canada (we live close) for an at home celiac kit that tests for ttg in the blood, however, it is only 93% accurate. What is your opinion on these tests, and would you as a mom/MD just continue gluten free diet for him and stop trying to get a solid answer?

    Thank you !!!

    1. Jess Post author

      Hi Chrissy,
      Thanks for writing. I am glad you shared your story and would be more than happy to give my 2 cents, although anything I write cannot be taken as true medical advice :)
      Was your son GF when his celiac labs were tested? The results are much more meaningful if he was still eating gluten at the time of testing. If he was already GF, then the negative results do not mean much.
      If he was my child, I would proabably see if the lab would be able to add a deamidated gliadin peptide IgG on to the celiac panel that was already done (if he was not gluten free when the lab was drawn). It can have a higher sensitivity for picking up celiac and potential celiac in some kids. It’s abbreivation is DGP-IgG.
      Have you been tested for celiac disease? If you find out that you have celiac disease, then I’d put him at much greater odds of having celiac than not. So, if you do not want to pursue further testing for him, at least you could test yourself and see if your symptoms are celiac related or not.
      That being said, there’s increasing recognition that many people who do not have celiac disease can get sick from non celiac gluten sensitivity (NCGS). Even if your son does not have celiac disease he may be gluten sensitive. In most cases of NCGS the TTG is normal but there may be elevated antigliadin antibodies. I am unsure of the validity of Enterolab’s testing for NCGS. From what I’ve seen on some of the large celiac forums, almost all people test positive for gluten sensitivity, which makes me think that many must be false positives. I am also unsure of the accuracy of their TTG testing for celiac disease.
      No matter what you decide to do, it sounds like a 2nd opinion is warranted. Do you have medical access to a large children’s teaching hospital? Can you keep a food journal and track what happens if/when he is accidentally glutened?
      Jess

  6. Chrissy

    I probably should have clarified that I mean to get the kit to test my own ttg Iga, not my sons, as I already have his results. I figured if I showed up positive, then at least I would know that it is probable that this is what is causing my son’s symptoms, too. Do you know if your only symptom is the dermatitis herpetiformis rash, if you still produce ttg Iga? I am unsure if it would even be worth it for me to get the test, as my only symptom is the rash. My other concern is that I have two other children, so I obviously worry about them as well.

    Thank you so much for all the time you dedicate to keeping up with this site! I am so happy I found it!

    1. Jess Post author

      Hi Chrissy,
      I am just getting through moderating comments and there was a bunch of spam interspersed between your 2 comments, so I am know realizing that you meant that the TTG was going to be just for you.
      I am not sure if this helps or not but at the International Celiac Disease Symposium held in Chicago last September, Dr. Guandalini explicited stated that if a person has dermatitis herpetiformis that they have celiac disease (he also said that this is the only case in which he believed that one could omit the biopsy for diagnosis). I remember this really well because I attended the symposium with my mom and we both looked at each other as he said this because one of my brothers has had the DH rash for years. Also, we also learned at the symposium that the TTG antibodies seen in DH are Type 6 and are not tested for on the celiac panels in the U.S. (American panels only test for TTG type 2 which is related to inestinal wall damage). TTG type 6 testing is currently only available for research purposes.
      Based on this I would guess that you’ve probably had celiac all along…
      I hope this helps. I am sorry that my replies to you were so fragmented.
      Jess

  7. Ana Pimenta

    Dear Jess thank you for sharing this useful and optimistic thoughts with us! Couldn´t agree more!

    I was assintomatic until I got pregnat.

    I now deal with daily with tiredness and neurological symptoms related to gluten and needing intensive physiotherapy.

    In your on own words “this diagnosis has changed my life for the better”: I have formed an incredible network of people with celiac disease and non-celiac gluten sensitivity around the world. I’ve realized that I can live a full life, even with celiac disease .Although it’s not always a piece of cake, celiac disease is not a death sentence or a reason to hate the world. It has been empowering for me to triumph over celiac disease.”

    All the best. Ana

    1. Jess Post author

      Hi dear Ana,
      Thanks for commenting. It is good to hear from you and I am so happy we are connected on here! I hope we can continue to support each other from afar.
      Jess

  8. Ashton Lee

    As I have come to look at it “With Celiac Disease Life is a Picnic” (you take your own food wherever you go).

    But what other significant disease is cured the moment you know about it with a relatively simple dietary change. Scurvy maybe? But not many.

    There are about a zillion things I would rather not have than this.

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