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When Celiac Disease is Diagnosed in Adulthood, Intestines Don't Always Heal Completely

By June 17, 2009

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In people who have celiac disease, eating gluten causes damage to the lining of the small intestine. We generally hear that once a person with celiac disease stops eating gluten, the intestine gradually heals, although the time required for healing can vary. Studies have shown that up to 95% of children with celiac disease may have complete healing of their intestinal lining within two years after starting a gluten-free diet.

Earlier this month, however, at the Digestive Disease Week medical conferences in Chicago, two research teams presented results of studies showing that people with celiac disease who start the gluten-free diet as adults don’t always have complete healing of the lining of their small intestine, even after they’ve been gluten-free for a long time.

In one presentation, Dr. Alberto Rubio-Tapia and colleagues from the Mayo Clinic in Rochester, Minnesota described their study of patients whose celiac disease had been diagnosed (and confirmed with a biopsy) during adulthood and who later had additional biopsies to determine whether or not their intestines had healed.
-- Of 141 adults who had been gluten-free for less than 2 years, only 79 (56%) had healed intestines.
-- Of 65 adults who’d been gluten free for 2 to 5 years, only 37 (57%) had healed intestines.
-- Of 27 adults whose intestines were examined more than 5 years after they became gluten-free, only 14 (52%) had intestinal healing.

Lack of healing was slightly more common in patients in older age groups and much more common in those who were not diagnosed until the villi that line the small intestine had completely flattened out (a condition known as “total villous atrophy”).

In a separate presentation, Dr. Mohammad Azam from Connolly Hospital Dublin & Wexford General Hospital in Ireland also reported on rates of intestinal healing in people with celiac disease diagnosed in adulthood. As in the study from the Mayo Clinic, the Irish patients had follow-up biopsies to check the healing status of their small intestines. At 2 to 3 years after starting the gluten-free diet, only 66 of 124 patients (53%) had healed intestines. In this study, however, Dr. Azam found that almost two thirds of the patients whose intestines hadn’t healed “had poor or very poor dietary compliance.” In his adult patients, he said, lack of long-term compliance to a strict gluten-free diet was the main reason for poorly controlled disease.

Dr. Rubio-Tapia, who headed the Mayo Clinic study, told me, “In contrast with the study from Ireland, most of our patients had good adherence to the gluten-free diet.” But as his study showed, adherence “does not guarantee mucosal recovery" in all adults with celiac disease. (The lining of the small intestine is often referred to as “the mucosa,” and another term for “healing of the intestinal lining” is “mucosal recovery.”)

“I am not sure if [these patients] will never completely recover or if mucosal recovery may be obtainable but requires longer time,” Dr. Rubio-Tapia said. “In general, our patients are doing a good job with adherence to the gluten-free diet but it is possible that [hidden] gluten sources (difficult to identify without standard labeling for gluten-free foods) play a significant role.” A lack of public awareness and education about celiac disease, as well as a long time of gluten exposure in patients not diagnosed until adulthood may be factors too, he added, along with other yet unknown factors, perhaps related to genetics or patient age.

Dr. Rubio-Tapia points out that the adults in his study who did not have mucosal recovery had an increased risk of celiac disease complications. Therefore, he says, in people who were diagnosed with celiac disease in adulthood, it might be important to confirm mucosal recovery with a biopsy after the individual has been on the gluten-free diet for awhile. Just having your symptoms go away and having normal blood tests does not necessarily mean your intestine has completely healed.

Read about other recent advances in celiac disease research.

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Celiac Disease Forum

June 24, 2009 at 9:48 pm
(1) Janet says:

I am wondering what the researchers are prescribing for these patients who have limited mucosa recovery. Would this be considered refractory sprue at this point?

July 6, 2009 at 2:14 pm
(2) Sarah Cain says:

Well, celiac is on the rise, and the medical establishment are becoming no more efficient at curing it. Unfortunately, I can’t say that I am surprised. After all, it is an industry which is designed to perpetually treat ailments, instead of cure them. That way, people can stay reliant on the medical establishment forever, whilst providing more and more money. Shocker – 60% of bankruptcies are due to medical bills.

If you actually want to cure celiac disease, as was done in the late 1940s by Dr. Sidney Valentine Haas, then see this link:

Doing The Impossible Again: Naturally Curing Celiac Disease Using Holistic Naturopathic Techniques

Break free from the establishment.

October 24, 2009 at 12:11 pm
(3) Lori says:

I’m wondering if Xanthan Gum might be attributed to non-healing cases or if any research has gone into this. Personally, I have gut wrenching cramps everytime I have tried a product containing xanthan gum, or tried to cook with it, all the while on a strict gluten free diet. It was the only ingredient that differed from my regular boring diet. Symptoms happened twice without knowing beforehand xanthan was part of the ingredients, first in gluten free store bought bread, and later when used in baking my own gluten free foods.

February 28, 2010 at 7:52 am
(4) Rollo says:

from the Wikipedia:
“Xanthan gum is a “highly efficient laxative”, according to a study that fed 15g/day for 10 days to 18 normal volunteers. Some people react to much smaller amounts of xanthan gum, with symptoms of intestinal gripes and diarrhea; there are no studies yet investigating whether this is allergy or not.

Evaluation of workers exposed to xanthan gum dust found evidence that respiratory symptoms were associated with exposure to xanthan gum dust.

Since xanthan gum is sometimes produced by a bacterium that is fed corn to grow, some people allergic to corn may also react to it[citation needed]. Yellow Phrygian Husk is a common source of the bacterium from which xanthan gum is created. However, some xanthan gum is not corn-derived.

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