In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease, and since then it has become an invaluable resource to people worldwide who seek information about celiac disease and the gluten-free diet.
In 1998 I created The Gluten-Free Mall, Your Special Diet Superstore! which was also another Internet first—it was the first gluten-free food site to offer a shopping cart-style interface, and the ability for people to order gluten-free products manufactured by many different companies at a single Web site.
I am also co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.
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.
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.
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).
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.