How Close Are New Celiac Disease Treatments?

It would be fabulous if attending a party would not be a total flop because of fear of intake of gluten.

With every action there is a reaction. So it remains to be seen what the after effects of the drugs are and whether they are worth taking or just continuing to avoid gluten continues to be the best MO. We can always remain hopeful. It is a shame however, that one never knows until many years later the devastating effects of some drugs on the body.

I'm happy enough to give up bread, pasta, cake etc. entirely. (I'm middle-aged, so can't really eat starches anyway.) Just to be able to eat out with friends without having to go into long explanations and negotiations with servers about the history and provenance of every 20 parts per million would be great!

Nexvax2 would allow normal consumption of gluten, as the whole point of the treatment is to retroactively correct the body's immune response. In fact, one of the stated objectives on their website is to help people with celiac disease enjoy normal diets again.

You are correct that the rest of them are not intended to allow large amounts of gluten consumption, though. Instead, they would be useful in eliminating the need to worry about cross-contamination - and that's a pretty exciting prospect on its own!

I would be very cautious about taking any of these until it was proven absolutely to have no side effects. There always are some and history has shown some to be deadly.

Do you have any info where I can sign up to be in studies for celiac DX in the OKC OK area? I have biopsy proven Celiac and greatly dislike the restrictions on my lifestyle due to it. I would be interested in participating in some studies.

These treatments would be wonderful for my daughter. We have had such a hard time getting her blood levels to normal, despite having a gluten-free household and carefully reading all labels. So this would give me some peace of mind in that regard. Also, with these drugs, we could eat out and order something that's "supposed to be" gluten-free and not have to worry that there might be some cross contamination. It would really make life so much easier!

Thanks so much for the update. I attempted to participate in the ALV003 enzyme study but my endoscopy showed my small intestine was too healthy for the study.

Why on Earth would I want to go back to eating gluten, I feel so much better since giving it up I have also given up most other cereals, and I certainly don't want to be dosing myself up on drugs to be able to eat bagels and cakes again.

I live in UK & was diagnosed with coeliac disease 22 years ago. Initially the Coeliac Society just produced a black ink A5 sheet as a seasonal newsletter - now Coeliac UK produces an impressive full colour 70 page quarterly magazine full of articles, recipes, and advertisements. Ever since I can remember, there was talk of a cure being on the horizon but I fear it's now unlikely to happen. I think the science is there, but a cure will probably be blocked.

While I am grateful for more awareness & product choice than I could have imagined, there are now so many people with a vested interest in selling us expensive gluten-free alternatives that they are likely to protect their livelihood.

I also think that while the NHS can fob us off with a diet that largely manages the condition, why would they waste their cash strapped resources paying out for expensive drugs or vaccines when there are so many more pressing needs for their money?

Thanks so much for the update. I attempted to participate in the ALV003 enzyme study but my endoscopy showed my small intestine was too healthy for the study.

You can add me to that same list, even though I was actively sick during the stages of the testing I was I was part of. Go figure?

Hopefully these drugs will not cause other problems, because I'd sure like to get back to my job and not have to worry about eating out and someone in the kitchen not using proper precautions with my meal!

Once being on a gluten-free diet it's not worth going for the drugs just to be able to eat gluten again. I was also diagnosed with microscopic colotitis which means no seeds or nuts. I'm healthy now and almost in my mid 60's so staying on my gluten-free diet. No sense in changing now. there are plenty of good cookbooks that have just as good of recipes in them for the cakes and cookies that I use toake for my family. My children are grown and gone. My husband has gotten use to eating gluten-free. I do make him regular cakes with wheat flour. here is gluten-free cake mixes I can buy. There is starting to be more and more gluten-free products in the grocery stores.