lack of celiac symptoms after exposure

[chopstickmafia]

I was diagnosed with celiac in mid August, 2022, after biopsies indicated moderate damage to my intestines and bloodwork indicated TTG IGA levels that were so high they couldn't be quantified on the test (the report said ">250 U/ml").  The only symptom I had prior to diagnosis was mild bloating, and that didn't show up till late June, 2022.  I suspect that celiac damage has been occurring for far longer than the 6-8 weeks I had symptoms.  I live in an area with capable but unsophisticated medical care, and the only guidance I got from my gastroenterologist was "Don't eat gluten ever again."  I've consulted with a dietician but the guidance she provided was pretty general and there doesn't appear to be a dietician in my region who specializes in celiac.  I am on board with the dietary changes that are required for this diagnosis and my family and I are taking it seriously.

Two detailed questions that I hope this community can answer (because I haven't gotten answers anywhere else):

1) I've been told repeatedly that I need to figure out what amount of gluten exposure my body can tolerate- i.e. can I eat potato salad that was made with mayo from a jar that had been touched by a knife that touched glutenous bread, or eat a bunless burger that was prepared in the same area where all the rest of the burgers were prepared.  How do I figure this out if I wasn't demonstrating symptoms while my immune system was quietly killing my intestinal villi?

2) I work in the food industry.  I understand that the mechanism of injury for celiac is consuming gluten, but at what point is gluten considered "consumed"?  Does it have to make it to my stomach, or can it be absorbed through the tissues in my mouth?  How about inhaling flour after it gets flung in the air by a mixer?  Can I safely taste and spit food like a sommelier tastes wine or is getting gluten in my mouth enough to be an exposure?  

Thanks for any guidance you can offer.

[trents]

On 9/8/2022 at 9:10 AM, chopstickmafia said:

Welcome to the forum, chopstickmafia! You asked two questions:

1) I've been told repeatedly that I need to figure out what amount of gluten exposure my body can tolerate- i.e. can I eat potato salad that was made with mayo from a jar that had been touched by a knife that touched glutenous bread, or eat a bunless burger that was prepared in the same area where all the rest of the burgers were prepared.  How do I figure this out if I wasn't demonstrating symptoms while my immune system was quietly killing my intestinal villi?

You were given a bum steer here. True, exposure to small or even trace amounts of gluten may not produce a discernable reaction but that does not necessarily mean that no inflammation is being produced in the SB villi. Having said that, there are situations we all find ourselves in in the real world where we have no choice (other than not to eat at all) but to consume something that may have been cross contaminated with gluten and symptoms are all we have to go by. Now, if your are a very sensitive celiac who will react violently to trace amounts of gluten as commonly happens in CC situations, you would need, without question, to just abstain from eating. But if you are not a sensitive celiac then you have a little more latitude perhaps. Please don't construe what I am saying to throw caution to the wind. I'm just trying to be practical here. Having said all that, realize that the longer we withdraw gluten from our diet the less tolerant we tend to become. We lose some of whatever tolerance we may have had when we were consuming it regularly. So, it can change over time.

 

On 9/8/2022 at 9:10 AM, chopstickmafia said:

2) I work in the food industry.  I understand that the mechanism of injury for celiac is consuming gluten, but at what point is gluten considered "consumed"?  Does it have to make it to my stomach, or can it be absorbed through the tissues in my mouth?  How about inhaling flour after it gets flung in the air by a mixer?  Can I safely taste and spit food like a sommelier tastes wine or is getting gluten in my mouth enough to be an exposure?

Thanks for any guidance you can offer.

Definitely, air born gluten will get trapped in the mucous of your nasal passages and find it's way into your gut. Similarly, getting gluten in your mouth from secondary sources such as glasses or even kissing can be hazardous. It goes back to 1) above and the question of individual sensitivity. But I would only say that if this were an occasional risk scenario. If it is a day in and day out exposure, I would look for another job.