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Full Gut Recovery Rare in Adult Celiac Disease Despite Gluten-free Diet

Celiac.com 06/18/2009 - According to the results of a recent study, complete recovery of intestinal mucosa occurs very rarely in patients with celiac disease, despite adherence to a gluten-free diet.

Generally, when people with celiac disease go on a gluten-free diet, they can expect to enjoy some healing of small intestinal mucosa. However, new data casts doubt over how much of this benefit is experienced in adult celiac patients.

In order to analyze the factors that influence histological outcome of a gluten-free diet in a large cohort of adult celiac patients, a team of researchers reviewed data on 465 consecutive celiac patients studied before and during the gluten-free diet.

The team was made up of A. Lanzini, F. Lanzarotto, V. Villanacci, A. Mora, S. Bertolazzi, D. Turini, G. Carella, A. Malagoli, G. Ferrante, B.M. Cesana, and C. Ricci. The researchers made duodenal biopsies of subjects at diagnosis, and classified results. They found 11 cases of Marsh I, 25 cases of Marsh II, and 429 cases of Marsh III.

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After an average of 16 months on a gluten-free diet, 38 patients (8%) showed histological ‘normalization’, 300 patients (65%) showed  ‘remission’ with persistent intraepithelial lymphocytosis, 121 patients (26%) remained unchanged, while 6 patients (1%) showed ‘deterioration’.* Celiac disease-related blood tests were negative in 83% of patients with Marsh III lesion during the gluten-free diet.

Researchers independently associated male gender and adherence to a gluten-free diet with histological ‘normalization’ and ‘remission’. There seemed to be no association between persistence of intraepithelial lymphocytosis and human lymphocyte antigen gene dose, or with Helicobacter pylori infection.

From these results, the research team concluded that complete normalization of duodenal lesions is exceptionally rare in cases of adult celiac disease despite adherence to a gluten-free diet,  disappearance of symptoms, and  negative blood tests for celiac disease.

Aliment Pharmacol Ther 29, 1299–1308

*Author's note: Could such deterioration be due to undetected exposure to gluten over time?

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10 Responses:

 
Gerta Farber
Rating: ratingfullratingfullratingemptyratingemptyratingempty Unrated
said this on
22 Jun 2009 11:44:27 AM PDT
Certainly a valid report on this research, BUT it is highly unfair and even dangerous. We know that many FIRST recognized effects of gluten can be in other bodily areas, such as brain diseases! This report may cause assumptions by many that a gluten-free diet will not correct ANY symptoms caused by gluten! A very harmful omission and should be rectified by Jefferson Adams in some way!

 
Ann in Pittsburgh
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said this on
30 Jun 2009 11:41:12 AM PDT
I wonder if some of the remaining damage is due to ongoing ingestion of other food items that can cause a similar but lesser reaction: eggs, dairy, soy, yeast, and others.

 
John B. Symes, DVM (aka Dogtorj)
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said this on
30 Jun 2009 2:02:55 PM PDT
As much as we don't want to hear this kind of thing, I certainly believe it. Gluten is only one of the foods that damage intestinal villi, with casein (dairy), soy, corn and fluoride being other major contributors. And those with celiac disease are more likely to have problems with sensitivity to the others, thanks in part to Zonulin - that barrier-opening hormone released by the intestinal tract once enough villous damage is sustained.

I'd like to see a study done on the rapidly rising number of people who are going GFCFSFCF. Then we would get a much better idea of just how much harm a trace amount of gluten is causing.

 
Ignacio Abel
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said this on
30 Jun 2009 2:41:39 PM PDT
We just have to ask if gluten free is enough. Maybe it's not.

 
Sandra Barwick
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said this on
01 Jul 2009 4:25:32 AM PDT
Don't shoot the messenger. This is a good report of interesting research. It says specifically that symptoms disappear. If symptoms have gone the body is healing somewhere.
What it seems to show is that the gut is very slow to heal. They tested after 16 months and I think many of us know it can take several years - and that the hardest bit of the diet is the early bit, where you keep forgetting or don't realize it's in baking powder or chips or whatever.
I wonder if they plan to test again in five years.

 
Gloria Brown
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said this on
04 Jul 2009 8:57:49 AM PDT
Without description of what the patients consumed, this study is questionable. What did this group of people eat to qualify as truly gluten-free? Packaged foods overwhelmingly contain trace amounts of gluten, even those with gluten-free labeling. Therein could be the reason a "Gluten-free" diet for most Celiacs remains ineffective. Had this study been with a group of people who consumed only fresh foods and nothing packaged (including spices, teas, medications, meats, etc.) the findings could be useful.

 
Stephanie
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said this on
12 Jul 2009 9:06:22 AM PDT
Interesting that the overwhelming majority of newly diagnosed celiacs in this study were at stage III damage - just goes to show how utterly the medical system is failing at diagnosing celiac disease before the patients are half-dead. Really a pity.

 
katie
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said this on
17 Jul 2009 6:46:14 AM PDT
I have one word that explains why people don't heal: CROSS-CONTAMINATION! This is a HUGE issue still being ignored. As more people go gluten free, and instead of changing eating habits they just replace all those gluten carb foods with gluten-free---this will continue to be a problem. Until all the companies and food manufacturers are aware of the seriousness of Cross-Contamination from growing to shipping to storing to grinding----lack of healing will continue. The original 'healing' diet for Celiac was NO grains whatsoever. This is what lack of funding for study of a disease not cured by a pill does for us--------leaves people still sick and in the dark! Very sad.

 
Brian
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said this on
03 Aug 2009 8:00:47 PM PDT
Data are data. Over-extrapolation by doctors of what they know to fill in their lack of knowledge about celiac patients like us, has caused many of us harm and decades of issues.

The study looked at nothing by villi damage. While I have seen no supporting data, I suspect that the autoimmune diseases are the result of an overreaction to gluten in the gut or after leaking into the blood. So while villi damage likely means high levels of vitamins and minerals for me the rest of my life to avoid the clear expression of deficiencies I had before, I am OK with this. It works. It is like surviving a heart attack and managing afterward. It is not repairing itself to any great extent.

The fact that my hypertension, arthritis, cluster headaches, fuzziness, anxiety, and depression all flare up with abdominal distress to trace amounts of gluten I finally track down in my food diary, says to me that avoiding gluten is paramount regardless if the villi are ever restored.

Would have been nice if a normal gut was a possible outcome, but if it isn't it isn't.

 
Leslie E Stevens
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said this on
02 Sep 2009 7:03:55 AM PDT
The canary in the cave: my daughter has "dh" (dermatitis herpetiformis) and we were shocked to discover that most foods/vitamins/supplements labeled "Gluten Free" ARE NOT.
She develops excema within 20 minutes of eating contaminated food. It is almost IMPOSSIBLE to eat out without getting contaminated with gluten, even at restaurants with gluten-free menus. We have learned to only buy food/supplements that are labled "CGF" = Certified Gluten Free.
The best that we can do is eat in our gluten free home, then we are all happy (the downside of contamination is also the dark psychological aspects that visits us... for those who don't
have dh look for dilated pupils, and/or rapid heart beat/ depression/irritability, return of sleep apnea, dark eye circles....




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So, here goes...my visit with the GI specialist is on Monday. I had tested positive for the IGG antibody and all other bloodwork was negative. I had numerous trips to emerg with stomach pain, lower back pain, tingly tummy, and diarrhea with alternating "c" (I had the word constipation). One diagnosis of diverticulitis, another of IBS, and symptoms continued to get worse....Low B12 for 7 years and abnormal liver (something like hepatocellular disease with cirrhosis). I only have a glass of wine on the weekends...I had been diagnosed in my early 30s with IBS and imodium helped. I also had a rash on my elbows and back and that is when my new GP said maybe it is celiac and she sent me for bloodwork and 3 months later finally get to see the GI specialist. I went gluten free and at first it was hard. It is much easier now...I think at time I give myself contamination because I get some bouts of pain on occasion and I take buscopan and immodium and then I am fine....I am 100% convinced I have celiac but I guess I really do not understand how the rest of the panel would be negative... The rash, the GI symptoms, the B12, and the liver issue all paint a compelling picture...I never thought I would say this but I hope it is truly diagnosed because then I can move forward with a plan. I am down 22 pounds and back at the gym very hard and feeling almost normal for the first time in many years....I also find is so strange that my "gluten" attack usuallys starts with a pins and needs tingly sensation in my back and tummy...I have written a full history and have copies of all my test results so the GI specialist takes me seriously...I read his reviews and they are not good....I understand I will have to do gluten before the endoscopy but that fine...just looking forward to this being partly over...Have a great day!

http://www.cureceliacdisease.org/faqs/ You can also find lots of information on celiac at the University of Chicago celiac site. One test they suggest is the anti EMA antibodies. I don't see that one listed in her results. Probably because it is more expensive to do. So they may have skipped it. The other test they usually do is the total serum IGA levels, which is used to prove that the person's immune system actually makes IgA antibodies. Some people don't make IgA antibodies, so the IgA tests are useless in them. It looks to me like she makes IgA though, if this is the serum IgA result. IgA 133 mg/dl Reference range 33-200 There are also gene tests they can do. The genes indicate the possibility of developing celiac disease, not the automatic presence of celiac disease. About 30% of people in the USA have one of the genes for celiac disease, but only about 1% develop celiac disease. Some of the celiac genes are associated with other autoimmune conditions besides celiac disease. So there are lists of AI associated conditions with celiac disease. Sometimes called related conditions. http://www.drschaer-institute.com/us/celiac-disease/associated-conditions-1051.html

Blood was drawn this afternoon... they said I could get results tomorrow or even the next day! I also have a GI appt scheduled for June 9th. I am so glad I will have at least some kind of answer pretty soon. I'll let you all know. Thanks again for being so helpful!

Thank you so much for those links, I will check into it. Her pediatrician told me this afternoon she is wanting to repeat the bloodwork since that one test was elevated. I'm relieved that her pediatrician didn't dismiss it like the other dr in the practice did.

http://www.houstonceliacs.org/ https://www.csaceliacs.org/csa_chapter_25.jsp You can check with these groups to see if they recommend any doctors in Houston.