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Glutenings Worse After Going gluten-free?


foodiegurl

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foodiegurl Collaborator

I am newly diagnosed, and have not yet gone fully gluten-free. Pretty much, and then after my daughter's bday next week, I will do it fully. I don't question the need to do it, I know it has to be done. But my question is this....after reading so much on here, one huge fear I have is, that I will feel worse after I go gluten-free when I come in contact with gluten.

Right now, I don't really have any symptoms...some gas and constipation, which I have always had, but I assume it is from celiac now. So, when I am completely gluten-free, and I accidentally come in contact or have CC, am I going to have a massive reaction, even though I have never had one before? Is it going to actually make me feel worse? Am I setting myself up to have a huge immune reaction?

My sister discovered she was allergic to wheat a year ago. Before that she had no symptoms. Now, when she does come in contact with it, on accident, she feels horrible for hours.

This really scares me. Especially since now, I am don't feel like that :(


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MELINE Enthusiast
I am newly diagnosed, and have not yet gone fully gluten-free. Pretty much, and then after my daughter's bday next week, I will do it fully. I don't question the need to do it, I know it has to be done. But my question is this....after reading so much on here, one huge fear I have is, that I will feel worse after I go gluten-free when I come in contact with gluten.

Right now, I don't really have any symptoms...some gas and constipation, which I have always had, but I assume it is from celiac now. So, when I am completely gluten-free, and I accidentally come in contact or have CC, am I going to have a massive reaction, even though I have never had one before? Is it going to actually make me feel worse? Am I setting myself up to have a huge immune reaction?

My sister discovered she was allergic to wheat a year ago. Before that she had no symptoms. Now, when she does come in contact with it, on accident, she feels horrible for hours.

This really scares me. Especially since now, I am don't feel like that :(

Hello and welcome!

Good for you that you realize the need to go gluten free! You'll see that things get easier as time goes by.

It is a fact that when you go gluten free then you become very sensitive to gluten. But take it as a good thing. You will always be sure that you are / or aren't glutened. Otherwise, you would still get gluten from hidden sources - and you would still damage yourself without knowing it. Especially in the beginning it is very common to get cross contamination or get hidden gluten.

So take it as a wise way that your body has in order to warn you!

Meline

sbj Rookie
after reading so much on here, one huge fear I have is, that I will feel worse after I go gluten-free when I come in contact with gluten . . . when I am completely gluten-free, and I accidentally come in contact or have CC, am I going to have a massive reaction, even though I have never had one before? . . . This really scares me. Especially since now, I am don't feel like that :(

I think someone once posted a study here that showed that for some people your reactions to gluten do become more violent after you go gluten free. Several others here have said the same thing. However, I can relate my personal experience which is different. I never had any symptoms before diagnosis, and I still have no symptoms after going gluten free for several months (I made a boo-boo and had some chili cheese Fritos but suffered no ill effects). BTW, after my diagnosis my gastro demanded that I go gluten free immediately and would not permit me to wait for even one day.

luvs2eat Collaborator

About a year after going gluten-free, I scarfed down a huge hunk of homemade bread I'd made and missed so terribly. NOTHING HAPPENED. I had these awesome dreams of "planning" a cheat... maybe once a month... and was making a list of all the foods I might have! I didn't do the once a month cheat... and now I wouldn't knowingly put gluten in my mouth for all the $$ in the world. THAT'S how sensitve I became.

Jestgar Rising Star

My reactions are immediate, but quite mild. Not everyone's reactions get worse.

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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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      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. 
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      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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