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New Drug For Celiac Disease? Would You Take It?

LFitts

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LFitts Apprentice
LFitts
Posted

When we were at the GI for a follow-up visit this week, there were signs up asking for adult volunteers for Phase III clinical trials for a new drug that will soon be on the market for patients with celiac disease. The drug will supposedly break down gluten and protect patients from damage. I have a pretty good understanding of the drug trial processes and steps, and it will be a very long time (10+ years) before a pediatric version becomes available, assuming the adult form proves to be safe.

I'm interested in knowing if you would take such a drug? Are any of you entering the phase III clinical trials? I would like to hear updates as people begin taking the drug!

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Takala Enthusiast
Takala
Posted

No. These are for formally diagnosed celiacs. They don't acknowledge gluten intolerance. Secondly, it's insane to ask people who don't have problems with willingly complying with a gluten free diet, to further risk their health and continue to create severe auto-immune damage, because a trial would mean that some testers would be getting a placebo, not the drug, and secondly, there is no guarantee the drug would work. I also think that the drug is going to encourage bad behaviors, because of human nature, there are going to be a lot of people who are deliberately then eating gluten anyway, and expecting this drug to "protect" them, just as there are people who just eat way too much junk and fast food in any other category, then expect various statins and diet weight loss pills and hypertensive meds and diabetes meds to "protect" them from the consequences.

Trying to use drugs to make up for the lack of diagnostics and contaminated food supply is doing it backwards, in my opinion.

Christine0125 Contributor
Christine0125
Posted

I would consider it as a safety net when dining out or at social gatherings. I would not knowingly ingest gluten even with a drug.

LFitts Apprentice
LFitts
Posted
  • Author

After reading through these blogs for the last week, it seems to me that many people have ongoing issues that the gluten-free diet is not fully addressing. If the pill reduced zonulin production or otherwise aided in healing the leaky gut, I would be quite tempted to sign myself up as a guinea pig. Of course, it's not my choice since I'm not the one who is sick, but I will definitely be watching for research and developments.

KristenS Rookie
KristenS
Posted

I would absolutely try a drug. I would love to be able to eat whatever I wanted again. I am a foodie, and this restrictive life long diet sucks. As I understand it, the IL-15 drug trials were fast tracked due to the sheer volume of people affected by celiac. I am hopefull they pass clinical trials, and is fast tracked to fda approval. If so, I will be travelling to the US to get some! I would give anything for a croissant... ;)

vbecton Explorer
vbecton
Posted

I would! Only because of my lifestyle. When I'm home in my own country eating gluten isn't necessary. When I'm overseas, it's sometimes unavoidable. And only because I have other medical conditions that further restrict my diet to a paleo type diet (but no fruit for me). When I'm in a 3rd world country and all that's available in a village are some pastries filled with meat...that pill would help. Otherwise I eat from my "prohibitive" meat sources I've smuggled over the border. Sometimes my stash gets confiscated, but I always risk it because I've been caught too many times in small villages and no food source. So, bring it on!!

cavernio Enthusiast
cavernio
Posted

I might try it if trials turned out alright for occasional eating out for celebrations (eg: christmas dinner CC...had to avoid it this year) or going on a trip. But I'm pretty skeptical about many drugs not just for efficacy but side-effects too. Particularly with a drug like this I'd be concerned it'd be geared to break down gliadin only or something and so wouldn't work for barley or oats. And I'm also off dairy and and many others have issues with corn and soy and then there's some foods that are supposed to be gluten free but people still react to as if they had gluten. I can't imagine this drug being anywhere near good enough for me to feel safe while on it.

If there's drugs out there that are designed to stop the immune reaction that would also have it's own issues, like the fact that my peripheral neuropathy isn't apparently caused by the same type of T cells that damaged my intestines and of course if a drug were more general in reducing an immune reaction there's always the worry about other infections.

I don't want to be in trials.

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rehh05 Apprentice
rehh05
Posted

I would take a proven drug in a heart beat... but I would not participate in a drug test.

Zibby Rookie
Zibby
Posted

I agree with Cavernio. Drugs have side-effects and some are not identified until they've been on the market for a while. That and I am so sensitive to medications, I think being on a gluten-free diet would be a healthier, more natural approach until the medication is proven safe long-term. It's great though that companies are working on a solution though and I really hope it turns out well!

anngf4life Rookie
anngf4life
Posted

I agree with the safety net option for nights out or on vacation but not for everyday, not too big on taking pills.

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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