There is a lot of new stuff to cover here today – COVID-19 and celiac and results from the Columbia University Celiac Symposium new research information.

Yesterday, my mind was set at ease a bit about COVID-19 and celiac disease. The information from BeyondCeliac confirms what I already thought I knew and my risk levels. I’m glad I read their summary and watched their Facebook Live event. I felt like COVID-19 and celiac disease was beyond something I could comment on responsibly and hope everyone was able to get information they could use.

The bottom line on COVID-19 and celiac is that we are not in the high risk category for the virus by having celiac alone. If someone has a more complicated history, they need to consult their doctor for more information on their particular risk level.

Columbia University Celiac Symposium happened over the weekend with a ton of new information.

Gluten challenge over?

Dr. Daniel Leffler suggested that the gluten challenge is a barrier to celiac diagnosis for many already on a gluten free diet. After the results from the Nexvaxx study confirmed that those with celiac disease have a spike in the blood marker Interleuiken-1 (IL-2) after gluten consumption. The potential protocol would be to perform baseline blood tests and genetic testing to ensure the celiac genetic markers are present. After confirmation of HLA markers, a 1-day to 3-day gluten challenge is implemented in order to test IL-2 markers for diagnosis. Then after one year a repeat gluten challenge takes place where the patient eats their favorite gluten containing food, they suggest a croissant or two, in order to again test the IL-2 markers to confirm diagnosis.

Dr. Leffler said that the traditional method of diagnosis – positive blood tests and positive endoscopic biopsy will not go away as valid diagnostic methods. This may just be another testing method given to practitioners to expand diagnostic methods.

I don’t want to pat myself on the back, but I will. I talked about this here a while ago.

DOGGIE Bag Study

There was some discussion of the DOGGIE bag study. I haven’t delved much into this study because I feel like it is redundant. As people that live with celiac, we know that food from restaurants is often contaminated. This isn’t new. But the interesting part of this is that scientists are starting to realize that first, the gluten free diet is insufficient for management of celiac disease. Duh.

Second, that a 100% gluten free diet may not be attainable and maybe shouldn’t even be required. Since often there is background gluten in most people’s diets and people still get better on a gluten free diet, 100% gluten free might be overkill. They just don’t know where the line is for everyone and aren’t ready to make a recommendation.

Here is the problem with this theory of setting a maximum amount of gluten acceptable in our diets. We are getting low levels of gluten all the time even when we try really, really hard not to get any. Attempting to get to 0ppm of gluten should be the goal however, as patients we need to understand that isn’t possible. This leads into the question of – what are the symptoms of gluten ingestion and when is that reaction triggered.

I get frustrated when scientists do studies that make me say duh, but I will look more at this study because it might be useful.

More Nexvax

While the Nexvax study ended early, a lot of really good science came out of the study. Here is the tough part to write, according to Dr. Robert Anderson, former Chief Science Officer at ImmusanT said that biopsies “rarely” show healing of patients. Ninety percent of patients with negative blood tests and on a gluten free diet for more than two years still showed damage in their intestines. NINETY. That is 90% of people on a gluten free diet attempting to get to 100% gluten free still showed damage in their biopsies. NINETY.

Also, from their work in Nevax, your doctor may start asking about nausea and vomiting as symptoms of gluten exposure rather than the typical diarrhea and bloating. Nausea and vomiting strongly correlated with the activation of the immune system’s IL-2 and a spike 2-4 hours after gluten consumption. When I posted about this study, I got a lot of negative feedback and people said they know their symptoms.

There is more, but I have to go meet my husband’s business partner’s new baby.