Risk Factors for Celiac Disease

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

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

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

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

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

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

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

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

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

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

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


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

13 thoughts on “Risk Factors for Celiac Disease

  1. Gill

    Thank you again Jess. As busy as your life is, you take time to share your findings.

    For those so us that have struggled for decades with this disease (Dr Fasano in his presentation at the Gluten Summit calls it a condition if it is controlled with diet, not a disease : ), the knowledge that is now being shared authenticates our search/struggle for relief and healing. I’m sure I’m not the only one who felt like a hypochondriac with my myriad of symptoms that I used to downplay to the best of my ability!

    There is much to learn but knowing what one is dealing with makes the journey far easier! Thank you and please know how grateful I am.

    1. Jess Post author

      Thank you dear Gill. It is so nice to hear from you. Yes, I plan to do the Gluten Summit, I will just have to buy it and watch the videos later because this week’s been a challenging one for me. Anyway, I am glad you wrote and, yes, I had fears of being construed as a hypochondriac several times before I was diagnosed since my symptoms did not fit all neatly in a box!
      Thank you for your words of encouragement and support as I have gotten this page established. Knowing that people like you are reading is what has kept me going!

  2. Cherish

    The antibiotics and PPI thing is interesting to me as the studies are correlative but don’t seem to give much more insight than that. It seems like the antibiotic thing could be causative (or at least exacerbate an already present condition) as it seriously disrupts the gut flora, but is it used more in people who already have the problem and therefore have issues with antibiotic overgrowth and/or related health problems? (And I’ve wondered about this one, too, as I was on antibiotic therapy for acne almost all of high school and some of college…until my GI symptoms got so bad I couldn’t take them any more.) On the other hand, I wonder if PPI use is more a reaction to having the GI issues that may already be present in someone with celiacs. I was started on PPIs more than a decade before my diagnosis, and though it helped with the pain I was having initially, it still continued to get worse. I’m pretty sure I’ve had this problem well before the PPI was prescribed. I went off of them after being GF, but then I got glutened and found that I felt a lot better after I started taking them again, along with lots of probiotics. I would like to stay off them, but I wonder if they’re going to be a ‘first aid kit’ for my GI tract for a while.

    Anyway, just thinking out loud. Thanks for such an interesting post!

    1. Jess Post author

      Hi Cherish,
      I am a big fan of thinking (and writing) out loud so no worries. Yes, most of the studies are retrospective, and hence, at this point correlative, but they are unfortunately the best we have right now. I can’t recall the exact reference, but there was a recent study that linked antibiotic courses during infancy with childhood onset of celiac disease, so I do believe that it celiac disease is related to a change in gut microflora. As for the PPI use, I am with you, and I am not sure they will really be able to tease out the answer without a good prospective longitudinal study (like to currently ongoing Prevent CD study in Europe) or a very good animal model showing that PPI use causes Celiac, or both!
      Like you, in my case, I am pretty sure that Celiac preceded my treatment for ulcers and anti-reflux meds for at least 10 years and that my digestive complaints were from Celiac because the PPIs and other esophagitis/ulcer treatments made no difference in my digestive symptoms (whereas they all rapidly disappeared once I went GF). But, perhaps I was in a pre-Celiac state of gluten sensitivity and the PPI finally tipped me into full fledged Celiac? It makes my mind boggle to try to piece all of it out, and I suppose at this point it does’t really matter for me. Either way, I will be much less likely to ever have any of my “at risk” for Celiac kiddos take a PPI now that I’ve read the research.
      As for probiotics, I really am starting to think that everyone should be on one, Celiac or not, because there is so much emerging about the role of the microbiome in overall health…

  3. Robyn Bradley

    Try to make it to the Gluten Summit. Incredible information. You can buy all of the lectures. I’ve only heard 4 of them and think $67 is well worth the whole series.

    1. Jess Post author

      Hi Robyn,
      I am planning on purchasing all of the videos so that I can slowly make my way through all of them over the holidays. It sounds like it will be $ well spent. Which have been your favorite talks so far?

  4. Molly (Sprue Story)

    Oh my gosh, I laughed out loud at that comment from your daughter. From your avatar you certainly don’t look anything close to 100 years old! Kids really do say the darnedest things, I guess.

    Thanks for sharing the review paper. I really appreciate how they help sort through the mess of conflicting conclusions that can be drawn from all of the research being done in different places and with different people. (Guess that’s the point!) I recommend The Wild Life of Our Bodies for anyone interested in the hygiene hypothesis. A lot of it is speculation, but it’s very interesting speculation. I wrote a review of it a few months ago and still think of it often.

    1. Jess Post author

      Hi Molly,
      Yes, luckily I am quite a ways off from turning 100, although I do look and feel old the mornings after being up all night at work! Gabby, my daughter, is brutally honest in her comments, but full of love too.
      Thanks a bunch for the book recommendation. I will definitely check it out (and hopefully be able to write a bit about it too). We live in constant fear of infections at the hospital, so at home I have been a bit of a germ phone but have loosened up with time…
      I hope you’re doing well and I look forward to catching up of your blog soon. I hope you and your family have a wonderful Thanksgiving! Jess

      1. Vik

        Hi Jess, you will enjoy being able to leisurely go through the Summit talks. I watched 1 or 2 a day. Tom O’ Bryan did a great job of moderating the talks. On Day 8, he did a wrap-up segment where he was on camera and spoke very movingly of how his family medical history prompted him to be involved in his field. I would suggest watching that segment, first, so you can “meet” him. For the rest of the talks–as the viewers, we basically listened to a phone conversation between Tom and the speaker, plus slides that simultaneously reviewed whatever topic they discussed, which was very helpful. I had never heard Dr. Fasano before, and like everyone says he is very listenable (is that a word?) as he discusses the “hows and whys” of celiac. Because I am relatively new to all this, plus tend to get overwhelmed with medical details (with a side order of hypochondria) I mostly chose to listen to more nutrition and lifestyle-based talks, than the more detailed medical topics. My favorites were Melinda Dennis and Jacqui Carr, who talked about ways to not only cope with the GF lifestyle, and gave advice about medical care, but also reminded us that we are still US, and that we can still thrive and enjoy our lives. PLUS Jaqui was one of the few people, who even mentioned vegetarianism in light of it being part of a healthy GF lifestyle. JJ Virgin also had a link from her summit page, where you could sign up for info, and the veg diet was one of them. She doesn’t think it’s optimal but wanted to provide some guidance. As a vegan, I was rather repulsed by the various the meat-egg-butter based concoctions that some of these Paleo people mentioned. Even my husband, who mostly eats vegan because I do but will eat meat sometimes when we go out, said “yuck” a couple of times when he overheard. Several other viewers mentioned in the comments that they wished some pro-vegetarian speakers had been in the speaker lineup.
        As is true anywhere when you hear opinions about food or anything, else many of the speakers had contradictory things to say about food choices. One says fruit is good. Another, no, fruit isn’t. Legumes and nightshade foods are ok, no they aren’t. That kind of thing. My husband said well “what food DO they all agree on?” and I replied, “well, I think that if a wild grass-fed bison ran by and you killed it and ate it with a side of greens, that would probably be ok. But wait! Not the same greens all the time or you’ll get food sensitivities!” :-). Another helpful speaker was Suzy Cohen, about taking GF care at pharmacies/medicines and with OTC meds.
        It was really amazing of the Summit team to put all this up online and offer it for free for a period. It took them a ton of work and a ton of time. I feel like I have been at a seminar, and got a lot of helpful info. We’ll have to compare notes when you have watched. AND, I really appreciate all the medical insight that you provide us, Dr. Jess, and that with your job and the 4 kids, you find time to post all your good info.

        1. Jess Post author

          Hi Vik,
          Thanks for your input of the Summit. Yes, we should definitely compare notes although I am also going to stick with the more traditional talks because I am a but freaked out by some of the information that I’ve he’s about some of the more alternative therapies, such as bovine colostrum.
          As for eating, it seems that with time that more and more of us are figuring out the specific diets that work best for us. Over the last year I’ve realized that dairy and me do not mix very well. Now, if I eat ice cream, I break out in pimples all around my mouth. If I avoid ice cream, no pimples.
          As for foods we can all eat…kale, sweet potatoes? I’ve actually been tossing around the idea of eventually opening an allergen free eatery, but right now I don’t have the $ or the time!
          I hope you and your family have a Happy GF Thanksgiving Vik!

          1. Vik

            Hi Jess, I hear over and over about dairy being a problem for many people, especially people with celiac. We used to enjoy some of the soy creams at Trader Joe’s, until I found out that they are made on shared equipment, so forget that. These days, we eat banana “ice cream”. Have you heard of that recipe, basically frozen banana and other frozen fruit (my fave is cherries) if you want, thawed slightly and put in a blender? You get a good soft-serve, sugarless but sweet dessert, that costs pennies. It doesn’t taste too banana-y, especially if you mix other fruit in. We make it all the time.

  5. IrishHeart

    “…”I cringe when I think of how many antibiotics and anti-reflux medications I was on ”

    Me too, kiddo. :(
    tons of meds that did nothing except wreck my entire GI tract.
    (yet, I take no medications at all right now) :)

    Excellent article, once again!

    I think Dr. Fasano is spot-on with his idea that “your gut is a microbiome” and I know that a healthy gut makes for a healthy body (and mind)
    I also know that my use of probiotics to right the ship has been extremely helpful.

    PS…as for ice cream…can you get some So Delicious Coconut Ice Cream (GF/DF/SF) at your market? It’s very good stuff. 😉

    PPS…. if she thinks beautiful, young YOU looks 100, she would likely find me ANCIENT…LOL

    1. Jess Post author

      Hi IH,
      You are very sweet. Thank you! Gabby, my daughter, does think that my very, very young mom, her “Nana,” is ancient, and although approaching 60 she looks like she’s in her forties!
      I love the So Delicious Ice Cream, and although I initially hesitated to buy it because of the price, I now enjoy indulging in the chocolate from time to time. Come to think of it, I will add it to the “products I like” part of this page!
      I have tried to spread the word about probiotics in our community too as I really attribute them to helped me to heal from both celiac and MCAS, and since starting on them last year we are hardly ever sick. I hope that research will continue to support their use for patients with celiac disease, as it would be nice to see such a simple treatment with so many potential benefits be adopted as a treatment for celiac. I guess we’ll see….

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