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Has Anyone's Reaction To Gluten Changed Over Time?


2ofus2kids2dogs

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2ofus2kids2dogs Apprentice

Hi everyone. I have been gluten-free for 2-1/2 years. Since being off gluten, I have had very distinctive reactions when I have accidentally ingested gluten. At first, it would happen almost exactly 12 hours from ingestion. I would have severe stomach pain for 6 hours, with severe nausea and some vomiting. At the end of the 6 hours, it was over and done. I would feel a little strange for a few days afterwards. Then, about 6 months ago, it changed to 24 hours after ingestion of gluten accidentally. (Every time I have gotten gluttened has been from eating out or eating at someone elses house). But, the symptoms were still the same.

Over the last 3-4 weeks, I have been havign some stomach issues. Off and on mild stomach pain and frequent bowel movements, but not diarrhea and poor appetite. It dawned on me today that I have eaten out 4 times in the past month or so, eaten at church once and eaten at a friend's house once, and have not been gluttened. Then, I started wondering if these "different" digestive symptoms were actually gluten reactions.

Has this happened to anyone else? Have you had certain symptoms for a period of time and then had your reaction change to something else?

Thanks for your input.


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oceangirl Collaborator

Melissa,

I am almost three years in as well and I think this is happening to me, too, although I'm not certain and I'm too terrified of gluten to deliberately ingest it and test my theory. Others will post but I think I've read others remarking on the same thing.

lisa

ang1e0251 Contributor

It makes sense to me that as your intestine heals it's reaction will also be some different. When you started to react back before you were sick enough to be dx'd, maybe it was like this.

2ofus2kids2dogs Apprentice
It makes sense to me that as your intestine heals it's reaction will also be some different. When you started to react back before you were sick enough to be dx'd, maybe it was like this.

Thanks to you both for posting. I know what you mean about being too scared to ingest it on purpose. You know, these recent symptoms do remind me of what I was feeling before diagnosis. Although, it was all the time, because I was eating gluten all the time.

I appreciate your responses. I really do think that is what is going on. I ate out late Sunday afternoon and my symptoms started about 12 hours later. Yesterday, I just felt off all day and my stomach was a mess. Today, though, I feel pretty much back to normal. This has happened 3-4 times over the past month, but always just for a short period of time and no one else in my family has had any stomach symptoms. I think I'm going to try to start recording when it happens and see if I can find a pattern.

Thanks for your help.

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      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
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      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
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      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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