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

Happy celiac

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

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

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

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

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

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

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


5 thoughts on “So it appears that Celiacs are not slowly dying after all…

  1. Anne Fitzgerald

    A couple yrs. ago I was tested for other food intolerances + discovered I couldn’t tol. soy, corn, dried beans +numerous other foods. After going on a diet eliminating these for 6 months I was able to try to introduce these. I still can’t eat soy in any form + only occ corn. I can’t have dairy, eggs or dried beans every day. I make this rwmark because you talked about some with unhraled villi + am wondering if other food intolerances could prevent their healing. A soley gluten-free diet doesn’t seem difficult, taking out soy + corn is trickier (though – wonder about fillers in my migraine meds. No that I have been switched to an MAOI for my migraines, I am also on a low tyramine diet too. Now THAT is like the last straw! ( I should tell you I am also lacto-ovo vegetarian. ) I am fortunate eniugh to get stomach pain when I eat “wrong”.Does wonders for compliance! I totally agree, the medical field has a lot of educational catching up to do? Oh BTW: when I was in nursing school 40 years ago. I remember studying about Celiac’s + thought to myself ” I’m so glad I don’t have it”! Didn’t show up completely til in my 50’s

    1. Jess Post author

      Hi Anne,
      Thank you so much for all of your insights and for sharing. I have often wondered about the food intolerances which so many of us develop. It seems like about 1/2 of adults with celiac disease do well and heal while GF and 1/2 of us end up with food intolerances (often multiple too). It very well may be that the persistent gut inflammation and lack of healing is from reactions to other foods. We are, unfortunately, stuck in the position of there being no research in this area. I have talked to as many “experts” as I’ve been able to, asking about a link between celiac and multiple food issues and there are no answers. All that I have come across in the medical literature is some evidence that there are some with patients with IBS and “wheat sensitivity” who have multiple food intolerances and lots of eosinophils in their intestines. This was just published in fall 2012. I am hoping to attend the big Celiac conference in Sept in Chicago and to be able to pick the brains of some of the others who are there.
      I began to get rather sick from soy protein about one year after going GF. At first I thought I was getting “glutened” but it became clear after a while that I was getting sick from soy. It is a definite autoimmune reaction (GI discomfort, then nausea, joint pains and feeling like my head is heavy). Then, 2 years into being GF, I developed a sulfite intolerance which came on rather quickly. So right now I am gluten free, soy free, and sulfite free. I’m also dairy and grain “light” by choice.
      I really feel for all of you who have issues with corn, because it seems it is everywhere. Once I started to read more about GMOs, I started to cut back on corn and realized how difficult it is to avoid it because it is in everything! Perhaps having an intolerance is a blessing in disguise, as you then avoid all GMOs.
      I agree that it is nice to get “signals” from our body when we are eating foods to which we have intolerances. It is the same with gluten for me. I have no desire to ever “cheat” and eat a little because of how sick I get and the after effects for days. I’ll admit that if I was a silent Celiac that it would be tempting to cheat without the bodily feedback.
      Also, I remember when I first learned about Celiac Disease too. I thought it sounded absolutely horrific and I was thankful for not having it. A huge reminder to me we never know what the future will bring for us!
      Thank you so much for reading and for your support as I have started up this blog.

    1. Jess Post author

      Hi Bonnie,
      Thank you for stopping by my page. Do you have any specific questions? On the right side of my page I have a list of “helpful links” to some excellent websites with information about celiac disease? The only update to the list is that the National Foundation for Celiac Awareness is now called Beyond Celiac—this reminds me that I need to update the info :)

  2. Skye metcalfe

    Hi! This has put my mind at ease a little bit… I have been researching quite a bit since finding out I’m celiac. I’m also lactose intolerant.. I’ve mostly had problems with soybean oil. What has me concerned was those articles ssaying gping gf isn’t really helping people with celiac and dying withing 2 years or things like that. I think because I’ve developed a bit of hypochondria (since it took 6 years to diagnose my celiac even though I knew there was something wrong with me, almost all symptoms of a celiac I have ha or have) I was so worried going gf wouldn’t make me better and I was going to die in the next year. Do you know of any new research about testing?

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