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CEL-PRO on Oats

CEL-PRO on Oats

The following is an edited version of some of the opinions of the CEL-PRO, which is a group of doctors who regularly discuss issues concerning celiac disease. Disclaimer - this is NOT medical advise, it is a general discussion of the oats issue. See your own doctor for application to your particular situation.

Doctor #1:

I will start off the oats discussion by commenting that this is probably the single most comprehensive study of the effects of a grain on celiacs. The earlier evidence for oats as a deleterious agent in celiac disease was based on a very small number of patients or case studies. Reading the report in the NEJM this week would suggest that oats are safe for most uncomplicated celiacs. There are however some reservations about the study. Severe celiac disease was an exclusion, there were some drop outs in both the oats and the control groups and patients with complications were excluded. If the findings are general to the whole population of celiacs then it would certainly make life a lot easier.

I have a concern about whether oat flour is reliably free of contamination with barley/ wheat. Also what would happen if we challenged a celiac with high doses of oat flour, greater than the 50g used in this study. Also would oat flour protein produce any of the subtle changes seen in the rectum with enema challenge.

Doctor #2:

Here in Finland [where the NEJM study was done] there are mixed feelings about oats. Our colleagues from Kuopio have done a very good study, and in fact the study is on-going. Five year follow-up results will tell us more, the authors are this autumn re-biopsing the coeliacs eating oats. Within our Celiac Disease Study Group we have discussed this, and we are going to discuss the item within the expert team of the Finnish Coeliac Society. At this point I want to say some words regarding children.

Today we are not going to allow coeliac children to eat oats. We are first going to perform a study, our ethical committee has accepted our protocol. We are also going to look at minor jejunal changes in the normal mucosa revealed by immunohistochemistry. Again, the oats producer will provide us the oats for the study (same deep-frozen tested batch through the whole study). If no harm is seen, oats will be accepted also for children and this is important in our country, we by tradition consume oats. Then another story is whether all oat flour products at our market are clean. This is a real practical problem and we will study this. As you probably know, in Ireland the oats was contaminated, Dr. Conleth Feighery and colleagues used in their study oats from a German producer, tested not to be wheat contaminated (from the fields and mills). The Irish study pointed at the same direction as the Finnish one (9 adult coeliacs challenged with 50 g of oats for 3 months), oats was tolerated. The authors also looked for immunological activation in the mucosa, no changes were seen (paper presented at the 8th International Congress of Mucosal Immunology, San Diego, July 1995, abstract Srinivasan et al. Oats cereal is not immunogenic in coeliac disease. Clin Immunol Immunopathol 1995;76 (part 2):S72).

Doctor #3:

The results of Kuopio group published in NEJM are probably changing our dietary recommendations. [The author of #1] has recently discussed the situation in children. The study has been carried out in adults, and in adults the demand to change dietary recommendations is strong, as we have noticed during the last days.

I think adult celiac patients can switch to oats containing diet under strict follow-up. The amount of oats tolerated, the long-term effect of oats, and the importance of gliadin contamination has to be investigated, however.

I recommend to my celiac disease patients that they should undergo gastroscopic examination 1-2 years after starting oats-containing diet. Some antecedent information of the mucosal architecture should be available as well. If not, a duodenal biopsy should be taken even before starting of oats. By this way we also can observe possible minor inflammatory changes such as an increase in IEL or alpha-beta T-cell receptor bearing lymphocytes.

If this arrangement sounds too laborious, at least a strict follow-up by physicians and dietitians are essential. The follow-up comprises general well-being, signs of malabsorption and EmA or AGA analysis.

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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.