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Most Cases of Non-Responsive Celiac Disease Due to Ongoing Gluten Consumption

Celiac.com 06/04/2012 - Non-responsive celiac disease is very much what it sounds like: celiac disease where symptoms seem to resist treatment and continue even in the face of a gluten-free diet.

Photo: CC--return the sunA team of researchers recently set out to look for the most likely causes of persistent symptoms in celiac disease patients on a gluten-free diet.

The research team included David H. Dewar, Suzanne C. Donnelly, Simon D. McLaughlin, Matthew W. Johnson, H. Julia Ellis, and Paul J. Ciclitira. They are variously affiliated with King's College London, Division of Diabetes and Nutritional Sciences, Department of Gastroenterology, and The Rayne Institute at St. Thomas' Hospital in London.

Their goal for the study was to investigate all patients referred to our center with non-responsive celiac disease (NRCD), to establish a cause for their continued symptoms.

For their study, the research team assessed all non-responsive celiac disease who were referred to their gastroenterology center over an 18-mo period.

They then established the etiology of ongoing symptoms for these patients. For all patients, the team established a thorough case history and conducted a complete examination with routine blood work including tissue transglutaminase antibody measurement.

Additionally, each patient was examined by a specialist gastroenterology dietician to try to spot any gaps in their diets, or any hidden sources of gluten consumption.

When possible, the team conducted a follow-up small intestinal biopsy, and compared the results against the biopsies from the referring hospital.

Patients with persistent symptoms received colonoscopy, lactulose hydrogen breath testing, pancreolauryl testing and a computed tomography scan of the abdomen.

The team monitored patient progress over a minimum of two year period. Overall, the team looked at 112 patients with non-responsive celiac disease. They determined that twelve of those did not actually have celiac disease. Of the remaining 100 patients, nearly half, 45%, were not adequately following a strict gluten-free diet. Of these, 24 (53%) were found to be accidentally consuming gluten, while 21 (47%) admitted to not faithfully following a gluten-free diet.

Microscopic colitis was found in 12% and small bowel bacterial overgrowth in 9%. Refractory celiac disease was found in 9%. Three of these were diagnosed with intestinal lymphoma. After 2 years, 78 patients remained well, eight had continuing symptoms, and four had died.

In most cases of non-responsive celiac disease, the team found a reversible cause can be found in 90%. In the vast number of those cases, continued consumption of gluten was the main cause.

The team is proposing the use of an algorithm for further investigation of the matter.

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7 Responses:

 
T.H.
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said this on
08 Jun 2012 2:31:33 PM PST
Nice to see that researchers are trying to examine the problems with unresolved celiac issues more.

I was curious what conditions had been misdiagnosed as celiac disease. Many of the misdiagnosis made sense, but it was disappointing to see researchers also using what, to my understanding, is faulty testing methodology. These suspected non-celiacs were given a short 2 week gluten trial and then a biopsy to see if there was any damage. No damage was considered a negative test for celiac.

Every celiac research center I've seen who discusses how long to do a gluten trial recommends a significantly longer period of time, to avoid a false negative. It makes me wonder why the study picked the length of time they did. I know they used other variables as well, but it was still odd.

 
Gloria Brown
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said this on
11 Jun 2012 8:04:01 AM PST
The drawing of gluten entering the intestinal system from the mouth needs to be modified to illustrate airborne gluten entering the oral cavity after being breathed in through the nose, and then descending into the intestine. Once it is documented that NRCD occurs due to this additional source of entry, those whose symptoms continue may improve after avoiding environments with ambient gluten and those who might otherwise die might live.

 
Carol
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said this on
17 Sep 2012 6:30:36 PM PST
Amen! Amen! Amen! but who will believe this unless they experience it or live with someone who is this sensitive?

 
Christine
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said this on
25 Sep 2012 9:23:42 AM PST
Thank you very much for this comment. I wondered about breathing in gluten because the smell of baking wheat bread initially makes my nose sting. My husband will have to make his own wheat bread somewhere other than the kitchen from now on.

 
Joanne kent
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said this on
11 Jun 2012 3:02:32 PM PST
I found that with a prolonged misdiagnosis of digestive issues and not being diagnosed with celiac until 37 years old, I developed a lot of food intolerances, especially high-protein foods: peanuts, dairy, beef, eggs etc. After eliminating those foods, as well as gluten, my symptoms decreased 80%.

 
vivien spencer
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said this on
11 Jun 2012 8:34:25 PM PST
I was recently diagnosed with celiac disease and have found my self changing my diet tremendously. I have been relying on other cultures and their foods to get me through. I have even completed additional research, and now I am practicing gluten-free and vegetarian diet. I feel better, but I still have my not-so-good days. It is really good that there has been more attention devoted to celiac disease and I hope there will be a cure soon.

 
David
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said this on
12 Jun 2012 2:02:57 PM PST
There is a theory out there that there is no such thing as refractory celiac disease, just higher sensitivity levels. My sensitivity level has increased enormously over the past 5 years. I now have to eat only non-processed foods. I react to foods tested at 20ppm and probably lower. It really makes me wish the threshold for gluten-free products was more stringent than what is proposed by the FDA. There is also a disclaimer on this site's Super Sensitives section of the forum that is particularly offensive to those wrestling with this problem. The authors of that disclaimer may have to eat their words one day soon.




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