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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Month-Long Reaction?
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8 posts in this topic

Good morning,

I'm often on this site as a guest, but rarely post (I can't remember if I've every actualy posted...). Anyway, I've really appreciated all of the information that I've obtained here. Thank you to everyone who contributes!

Here's my question... I'm 29 years old and was diagnosed with Celiac disease 2 years ago after a lifetime of one auto-immune disorder after another. Since going gluten free, I've had several accidental gluten exposures due to cross-contamination. I've learned over time what I need to be more careful about and am pretty good about it now. However, I was "glutened" at restaurant about a month ago and am *still* experiencing symptoms (sharp stomach pains, swollen/painful joints - including in my chest [my least favorite], brain fog is slowly getting better, etc.). Is this normal??? I feel like my reactions get longer and more severe the longer I'm away from gluten. I'm wondering if this is normal or if I should be trying to find another source of exposure/other way to solve my problems.

Thank you so much for your help!

Jennifer

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I'm not sure if this is "normal" but it is what happens to me. My reactions last 6 weeks or longer until I start to be a functioning human again. That is the simple wait until the pain is bearable and the fog is lifted enough to be able to think my way out of my sheets in the morning. I get a boatload of other symptoms, the stomach pain, GI, lack of energy, some I am sure I'm not thinking of right now, but most of those resolve in closer to a month or less. It is only the fog and all over pain that remain longer. Of course, it can't hurt to take a second look at everything around just to make sure you aren't getting hit by anything around you.

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Hi Jennifer,

My reactions are very similar to Adalaide's. They last at least 4 weeks, usually 6, which is why I am so super careful. I don't eat out at all. I wish I could, sometimes, but I don't even like going into restaurants anymore. Makes me nervous. And it's definitely gotten worse over time - I've been gluten free for 5 years, and the reactions were not this bad in the beginning.

Can't hurt to re-check all your stuff to rule out continued exposure, but I just wanted to chime in and say that reactions can absolutely last that long. Hope you feel better soon!

-- Christina

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Thank you both! It's good to know I'm not the only one! My husband gets worried (and I have my moments as well) when the chest pain hangs around for a long time. Eating out is so nerve-wracking these days!!!

Thank you again!

- Jennifer

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I have had reactions that last that long too, but that doesn't mean that it isn't something else, or even something in your diet currently. It wouldn't hurt to look over your diet carefully and eliminate anything new for now. You could add those things back again when you are better. It also wouldn't hurt to pay your doctor a visit. I would hope that you would at least be noticing some improvement without further gluten ingestion. I hope that you feel better soon.

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I've had reactions last a long time. I took a vitamin with gluten in it for a month. Had no idea there was gluten in it until I went to throw the bottle away. The ingredients had changed. So now I make sure it says gluten free. It's been a month since I was glutened and the symptoms are just now diminishing. It seems like the longer you stay away from it the longer it stays in your system or the worse your reaction is.

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I can't think of anything new that's been added to my diet and I honestly hate going to the doctor... I hate "hunting" for new problems. I'm hoping symptoms diminish soon! Thanks for all the help!

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I honestly hate going to the doctor...

I know what you mean. I hope that you notice an improvement soon so it won't be necessary.

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