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Study Says Not All Patients with Potential Celiac Disease Need Gluten-free Diet


Image: CC--Jeff Turner

Celiac.com 06/10/2016 - Do all patients with potential celiac disease need a gluten-free diet? The transformation of potential celiac disease to full-blown celiac disease has been described in some western clinical studies, but there is no good data on cases in Asia.

Recently, a team of researchers set out to study the short-term histological course of potential celiac disease in Indian patients. The research team included R Kondala, AS Puri, AK Banka, S Sachdeva, and P Sakhuja. They are variously affiliated with the Department of Gastroenterology and the Department of Pathology at Govind Ballabh Pant Hospital, New Delhi, India.

For their study, the team identified prospective patients with potential celiac disease by screening relatives of celiac patients, patients with the diarrheal subtype of irritable bowel syndrome (IBS-D) and patients with iron deficiency anemia (IDA). They conducted endoscopy with duodenal biopsy on patients who tested positive for immunoglobulin A antibodies against tissue transglutaminase (IgA anti-tTG)

Patients a Marsh-0 to Marsh-II lesion on duodenal biopsy, along with positive IgA tTG serology met the definition of celiac disease. The team retested for serology and histology at 6-month and 12 months.

The team diagnosed 23 male and 34 female patients with potential celiac disease. Patients ranged from 4-73 years old, averaging 28.7 years. Of these 57 patients, 28 were identified by screening 192 first-degree relatives of 55 index cases of celiac disease, while the remaining 29 had either IBS-D or IDA. Duodenal biopsy showed Marsh-0, Marsh-I and Marsh-II changes in 28 celiac patients, 27 IBS-D patients, and 2 IDA patients.

After 6 months, 12 patients became seronegative, while the remaining 45 patients continued to be seropositive at the 12-month time point. Only four patients moved to Marsh III status, while progression from Marsh-0 to either Marsh-I or Marsh-II occurred in six patients and one patient, respectively.

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Meanwhile, 14 patients with Marsh-I did show regression to Marsh-0. Of the two patients who were initially Marsh-II, one remained so upon follow up and one showed favorable regression to Marsh-0 status.

This study shows that, even though almost 80% of the patients diagnosed have potential celiac disease continue to remain seropositive for tTG 12 months later, only 7% slipped to Marsh-III over the same time period.

According to this team, these observations do not justify starting a gluten-free diet in all patients with potential celiac disease, in India.

With all due respect to the research team, I wonder what would happen to these patients if they were followed over a greater time span? Would their conditions worsen? Clearly some longer term follow-up of such patients is warranted.

Also, how many such patients would see an even greater regression of their symptoms and Marsh status if they followed a gluten-free diet? This study doesn’t tell us much about the possible benefits of a gluten-free diet in cases of potential celiac disease, just that, absent a gluten-free diet, some patients worsen and some improve.

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I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue. I knew better and we have been gluten free for 2 years. Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got. Feed dust everywhere. Total mess. Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems. Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough. His suggestion was maintain vigilance gluten free. I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two). At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!) But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure. And doctors state side that are worth seeing? Who is looking at gluten ataxia in the US?

Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease. They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD. You should not have a goiter if your thyroid is functioning well and your TSH is "normal". Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today. Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free. It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac. I was diagnosed with Hashi's long before the Celiac diagnosis. I am not sure Vitamin D has anything to do with thyroid antibodies but who knows? Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South. I take 5,000 IU daily and that is a safe level to take, believe it or not. I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!

I don't know what you drank or where.... so here are a few thoughts. - sure, a dive bar might have dirty glasses and serve a cocktail in a beer glass? But a nice reminder place, with a dishwasher, should be fine. If it's a sketchy place, Stick to wine, then it's served in wine glasses that aren't used for beer or bottled ciders in the bottle. - ciders on tap might, just a slight chance, have an issue. Because of beer on tap, mixed up lines, etc. - you may have a problem with alcohol - you may have issues with The high sugar content of the drink. I know I have similar issues if I drink serveral ciders of extra sugary brands - are you positive it was a gluten-free drink? Not this " redds Apple" pretending to be a cider - it's beer with apple flavor. Or one of those " gluten removed " beers?

Hi Stephanie, I'm also from the UK, I've found this site more helpful than anything we have! As already mentioned above, in my experience it could depend on what and where you were drinking. Gluten free food and drink isn't always (not usually) 100% gluten free as you may know, maybe you have become more sensitive to even a trace of gluten that is probably in gluten free food/drink. Is it possible you have a problem with corn, particularly high fructose corn syrup that is in a lot of alcoholic drinks? This was a big problem for me and the only alcoholic drinks I can tolerate are William Chase vodka and gin. I contacted the company last year and all their drinks are 100% gluten and corn free, made the old fashioned way with no additives, so maybe try their products if you like the occasional drink and see how you get on. If you drink out, not many pubs sell their products but I know Wetherspoons do and smaller wine bars may too. l was never a spirit drinker but I must say their products are absolutely lovely! Very easy on a compromised gut too considering it's alcohol. I second the suggestion on seeing a natural health practitioner. I've recently started seeing a medical herbalist, as I've got nowhere with my now many food intolerances since going gluten free last year and I've noticed a difference in my health already.

Sorry for the very late reply and thanks for the replies, I didn't get a notification of any. In case anyone else comes across this and has been wondering the same as I was, I did try a vegetable broth and I did react to it in the same way as if I'd eaten the vegetables. As for the candida, I've been using coconut oil and am seeing a medical herbalist for this and leaky gut. It's only been a few weeks but I've noticed an improvement all round.