How Common is Gluten Exposure in Patients with Celiac Disease on Gluten-Free Diets?

After my Celiac diagnosis more than a decade ago I've had a perfect track record of not just thinking' What the heck!' and wolfing down food I know contains gluten, and I've educated myself on the sources people normally wouldn't expect.
It would be a good thing to know the average unintended exposure a person might get and the threshold before auto-immune damage begins to occur.
The idea of an enzyme pill taken before a trip to a restaurant is one I've seen here before, something like that would go a long way towards allowing Celiac patients a better quality of life.

I was diagnosed in 2005.  I have only twice in 15 years knowingly ingested gluten and yet I know that I am regularly exposed.  I am extremely careful at home and when I dine out.  I read every label and all research.  I have annual colonoscopies(many polyps), and endoscopes every 2-3 years due to my difficulty with weight loss.  It is very frustrating.

On 4/9/2020 at 4:20 PM, Guest Hank said:

After my Celiac diagnosis more than a decade ago I've had a perfect track record of not just thinking' What the heck!' and wolfing down food I know contains gluten, and I've educated myself on the sources people normally wouldn't expect.
It would be a good thing to know the average unintended exposure a person might get and the threshold before auto-immune damage begins to occur.
The idea of an enzyme pill taken before a trip to a restaurant is one I've seen here before, something like that would go a long way towards allowing Celiac patients a better quality of life.

Yes, this is exactly the reason for AN-PEP / GliadinX.

It appears that the threshold is not the same for all people. For some it is 200ppm and for some as low as 5ppm but unfortunately it is hard to figure it out. 

I have celiac disease and have been on a GFD for 15 years since being diagnosed. I am often exposed to gluten even when I purchase so-called gluten-free foods. 

I have been super strict gluten free since diagnosed 10.5 years ago but my husband still has gluten foods in the house. I’ve had two episodes of gluten exposure at restaurants that made me horribly sick and sent me to the emergency room. After going gluten-free, I still experienced gut problems and eventually found a dietitian nutritionist who helped me identify a bunch of other foods to avoid, including lactose. Now, I have one dish at one restaurant that I can eat. So, I go out to eat rarely and I can’t travel except to camp and make my own food. All of that said, I still notice that I am being exposed to gluten, probably small amounts. This could be from my husband’s food, cooking utensils, or drugs. We do keep separate toaster ovens and towels. It’s a constant battle of hyper vigilance.

As with others here, I have been on GFD for 12 years.  Extensive mineral deficiencies led to diagnosis, though I had no severe acute reactions to gluten until 1-2 years after going strictly gluten free.  I travel for work about 40%-60% of the year, riding on 80-110 airplanes a year.  This translates into a similar percentage of my meals being eaten in restaurants. (I lost the enjoyment of eating out years ago due to the stress experienced evry time I go into an eating eatablishment.) 

When I have a gross exposure, 1 to 3 times per year, it is always due to restaurant food mis-identified as gluten-free, or ignorant staff making false assertions about items being gluten free.  Extreme nuasea, sweating, and vomiting occurs within about an hour of ingestion.  Several years ago, I started carrying Zofran in my computer bag, which follows me like a loyal puppy on the road.  When I am made aware of the gluten poisoning after the fact, I take one and it will keep me from throwing up.  Even if I am not made aware, it can still stave off the vomiting if I can dissolve in my mouth early enough at the onset.  In both cases, I still feel effects for a couple days after, though it is not debilitating.  

What concerns me with this article, is the obvious implication that I am repeatedly exposed at levels less than my personal acute symptomatic threshold. The only "plus side" to this is not getting violently ill.  I have to assume that there is some level of underlying damage being done when I am exposed at levels under this threshold. 

Are there any studies out there that have examined the potential damage that can be done in these periodic acute exposures, in addition to the assumed high level of non-symptomatic background exposures?   

I have been in the hospital 7 times in the last year and a half for issues of falling and creaming my head; no diet problems there, and they have the best tasting gluten-free bread.  After each hospitalization, I had to go to a nursing home for rehabilitation; that's where the problems were. I was in 5 different places; each time I told them I needed to be on a gluten free diet. It never happened. There were some places that were better than others, but all gave me problems.  Now I'm in an assisted living facility--still having the same problems.  Sometimes, I can take most of the breading off of the meat, and other times I can't. Often both menu items contain pasta. I can order a big salad or a cheeseburger (no bun) or chicken salad (with my own crackers), but those three items get boring after a while.  I can get a few frozen entries to  fix in my room, but I can only afford to do that once or twice a month. 

I just read the Easter Candy article, and found out that one of the candies I considered safe, isn't.  Just one more thing I can't eat. :-(  That's why I was breaking out a few weeks ago.

On 4/13/2020 at 2:36 PM, docaz said:

Yes, this is exactly the reason for AN-PEP / GliadinX.

It appears that the threshold is not the same for all people. For some it is 200ppm and for some as low as 5ppm but unfortunately it is hard to figure it out. 

Does you or anyone else have experience with using this?? I’ve thought about ordering it but didn’t know if it was a complete joke. I only eat out every few months at places I’m certain are 90% safe...hard to say as sometimes I think I had a reaction that was less intense but then I wonder if it’s in my head!! ?it would still be nice to have if it works. 

GliadinX is definitely not a joke and a lot of research has been published about AN-PEP and how it can break down small amounts of gluten in the stomach, before it reaches the intestines.

I have used it on and off for a few years when trying something not labeled, new, or from a shared facility. ...no major signs of exposure. I recently had to make it a daily regiment as I am having to turn to local brands for some foods that are made on shared facilities I do not trust and I found I tend to also digest some other foods better with it that are gluten free anyway....thinking of just staying on it.

I have no symptoms if I eat foods with gluten. I am careful, but never know if inflammation is present. Endoscopies can only be done about every few years. Maybe a test I could do myself would give me peace of mind.

Interestingly since the quarantine my gut has been much improved 

No eating out