Coeliac_path

Nonresponsive Celiac Disease

Nonresponders are the 5% of Celiac patients who have either persistent symptoms and/or abnormally high Celiac antibodies after two years on the gluten free diet.

According the most recent medical review in the “Up to Date” database, there are 5 main categories of nonresponders to the gluten free diet:

  1. Patient is continuing to eat gluten. This is the most common cause of persistent symptoms. This can be on purpose (i.e. taking a little bite of a gluten containing food every once in a while) or accidental (i.e. not realizing that a child is nibbling her wheat containing Playdough at school).
  2. Patient doesn’t actually have Celiac Disease.  For example, elevated serum antigliadin IgA antibodies may be a false positive. Small intestinal villous blunting may be caused by any of the following: hypogammaglobulinemia, acute infectious gastroenteritis, lymphoma, Crohn’s Disease, and/or a milk protein intolerance.
  3. There is a second disease present, in addition to Celiac, which is causing symptoms. Lactose intolerance, irritable bowel syndrome, small bowel bacterial overgrowth, pancreatic insufficiency, and microscopic colitis can all lead to digestive symptoms in patients with Celiac Disease. I recently wrote about having the dual diagnosis of Celiac Disease and Irritable Bowel Syndrome (see link).
  4. Refractory sprue is Celiac Disease which has never improved, or recurs after a period of “remission.”  It usually needs to be treated with steroids or other drugs that suppress the immune system, as it can lead to #5.
  5. Ulcerative jejunitis and/or intestinal lymphoma. Patients with ulcerative jejunitis have symptoms of malabsorption, fatigue, loss of appetite, weight loss, abdominal pain, diarrhea, and fever despite being on a gluten-free diet. Small bowel obstructions may occur.  Lymphomas have similar symptoms to ulcerative jejunitis, but may also be associated with fevers and abdominal masses.

The bottom line is that If you do not feel significantly better after two years on the gluten free diet, you need to work with your doctor to figure out the reason why. Untreated refractory sprue, ulcerative jejunitis, and lymphoma can lead to death. This is yet another reason to recommend screening to our family members…and if any of my 4 siblings are reading this, yes, you need to get tested or I will continue to badger you about this for this rest of your lives!

References:

1. Cleveland Clinic Center for Continuing Education.  “Celiac Disease and Malabsorptive Disorders.” By J. Wakim-Fleming.

2. “Management of Celiac Disease in Adults.” By Ciclitira, P.J.  UpToDate, April 10, 2013. www.uptodate.com.

14 thoughts on “Nonresponsive Celiac Disease

  1. Hana Feeney

    There is another form of non-responsive celiac in addition to what you have nicely laid out. There is a sub-group of celiac disease patients that are adhering to the GFD, but symptoms persist. These patients may be reacting to gluten contamination below the 20 ppm threshold considered safe for the majority of patients with celiac. For these patients, a gluten contamination elimination diet is indicated and will reduce the need for immunpsuppressing meds.

    Here’s the article. http://www.biomedcentral.com/1471-230X/13/40

    Thanks for your post!

    1. Jess Post author

      Hi Hana,
      Thanks for reading and bringing up Dr. Fasano’s study regarding the subset of Celiacs who do not improve until going onto a gluten contamination elimination diet. I agree that I should have included this. I did write about the article this past spring, right after it was published, you can find my post in this link: http://www.thepatientceliac.com/2013/03/04/the-gluten-contamination-elimination-diet/.
      My hope is that, with time, the standard of care for Celiac Disease will be to start everyone on a similar diet in the first few months to promote optimal gut healing. I guess we’ll see what happens!
      Jess

  2. Molly (Sprue Story)

    Do you think the majority of doctors read “Up to Date” or another database like it? That’s really interesting to hear about (especially because I’ve encountered several doctors now who don’t seem to be keeping up to date in the slightest!).

    Also: Two years is a lonnnnng time! /whine

    1. Jess Post author

      Hi Molly,
      I think that the bulk of “Up to Date” readers have probably finished their training in the last 2 decades, so are somewhere in their thirties to fifties. The problem is that “Up to Date” gets updated so often, that a bit of the content can change in a matter of months, so then you are not as up to date as you’d like to be. There have been quite a few great reviews of Celiac Disease in some of the major medical journals (which every MD should be reading) over the last few years too. There really is a lot of great info which is readily available to all of us who are practicing and have a computer!
      Jess
      P.S. By the time you are old like me, 2 years will seem to go by in the blink of an eye!

      1. Molly (Sprue Story)

        I’ve often heard it said that the reason celiac disease info lags behind is that the medical community often gets continuing education from drug company sales reps. Is this at all true in your experience? I think I also heard that there have been clamp-downs on what sales reps are allowed to do (although I haven’t wrapped my head around the details), so maybe that’s less true now?

          1. Jess Post author

            Hi Molly,
            I am not sure about other fields, but none of the CME which I do online or conferences which I go to for CME are sponsored by drug companies (I am a Neonatologist). This is a rumor, however, which I have seen propagated throughout the Internet. A lot of hospitals, including mine, have really cracked down on drug reps, and I am not allowed to receive anything from a drug rep which has a value of greater than $5. I think the biggest problem with Celiac Disease is that it was under diagnosed for decades because the teaching was that it was a rare, childhood disease. I do think that in about 12-15 years, when there is a pill to treat Celiac Disease, and the associated marketing campaign, that diagnosis rates will increase leaps and bounds due to widespread awareness throughout the general population. I guess we’ll see…..
            Jess

  3. alternativeangie

    I love that you badger your family, Jess. I bring it up to mine constantly. So far, no luck, but I’m going to keep trying. I love them & never want any of them to get as sick as I was.

    1. Jess Post author

      Hi Angie,
      I have taken a bit of a break from blogging so I am just seeing this now. How have you been? We are in the midst of a much needed family vacation….
      I’ve seen the bulk of my family members this past month, and again have tried to encourage them to get tested Celiac Disease, but they are a stubborn lot! I’ll let you know if I have any success with any of them. I am especially worried about one of my nieces whose symptoms are eerily similar to mine back when I was a teenager. I don’t think that they feel that I am trying to, like you, help them out of love!
      Jess

  4. Peter Olins, PhD

    An important topic.
    The problem may be a lot greater, based on a large clinical study done by Joe Murray’s group in 2010. Only 1/3 recovered after 2 years, and only 2/3 recovered after 2 years on a “GFD”.
    Another fascinating observation was that lack of symptoms was a very poor predictor of whether the gut had healed. I suspect that most celiacs focus on “how do I feel”, but this may not be enough.

    Likewise, how many physicians focus primarily on symptomatic relief versus the underlying disease? I have heard one physician say “as long as you feel better, you have nothing to worry about”. He also refused to do a blood test, but simply said “just cut out the gluten if it doesn’t agree with you”.

    Mucosal Recovery and Mortality in Adults with Celiac Disease after Treatment with a Gluten-Free Diet

    1. Jess Post author

      Hi Peter,
      Thanks for visiting my page. I have visited your page, Ultimate Gluten Free, many times and I really respect all of the work that you and Gillian have put into it.
      I agree with you that in many aspects that our emphasis is often on symptomatic control rather than the examination of the root causes of our health problems. I was guilty of this myself, up until I discovered that I have Celiac Disease. I ate a normal American diet and it rarely crossed my mind that my nutrition was having any real effect on my overall health.
      I appreciate that you provided the link to the 2010 study in the American Journal of Gastroenterology, as the authors did a beautiful job of demonstrating how prevalent a lack of mucosal healing is in Celiac Disease. I think that the bulk of the problem must be due to chronic low-level cross contamination from GF processed foods and grains which are contaminated. What are your thoughts? And what are your thoughts on Dr. Green’s study in which he writes that the lack of mucosal recovery is not associated with an increase in mortality? I do not have the reference available at the moment, but I will find and post it later.
      Jess

  5. Peter Olins, PhD

    Hi Jess,

    The jury is not yet in regarding why so many people heal so slowly. There have been a few studies which support your idea that low level contamination is important for some, but poor compliance with a GF diet seems to be a big issue.

    Another possibility is that many doctors seem to like to put people into simple disease categories: my hunch is that there will turn out to be different “flavors” of CD, each with slightly different causes and triggers. Since we now know that a host of different genes contribute to the risk of CD, this seems quite plausible.

    Finally, based on the very limited clinical trials that have been done, I am personally not convinced that the commonly-used “20 ppm gluten” is necessarily strict enough for some people.

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