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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.
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How Long Do Symtoms Last?
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4 posts in this topic

Hello :)

 

I'm new to the forum. I have a question about the duration of symptoms once you have been 'glutened'.

 

I have been gluten free for 11 years (I'm 27) and have recently had a bloodtest for celiac disease - I'm still awaiting the results.

 

About 3 weeks ago I ate a piece of bread in preparation for the test, in order to create the antibodies needed for diagnosis. I had immediate effects including sore joints, awful nausea, stiff legs, abdominal cramping - I began to experience these 45 minutes after consuming the bread (I timed it).

 

Over the last 3 weeks have had terrible depression (very out of character for me), crippling anxiety.. and although these have thankfully now subsided I still have abdominal pains each late afternoon/early evening and in the morning. With this pain comes fatigue. Furthermore I am still experiencing joint pain - including pains in my hip/pelvic region and my fingers.

 

I understand from wider reading that the symptoms of celiac disease are often quite unique to the individual; but I wondered if anyone else has had similar experiences to mine.

 

In particular, is it 'normal' to still have abdominal pains 3 weeks after eating gluten?

 

Jenny

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One piece of bread after 11 years of being gluten-free is nowhere near enough gluten to get an accurate test. They say you need to eat gluten every day for three months before you get tested.

 

I'm curious why you were tested after 11 years. You obviously knew gluten bothered you. (If you weren't sure before you are now!) Quite a few of us here never got a doctor's diagnosis, but we know we have it. In my case, even my doctor has agreed that based on family history (my mother had an official diagnosis), and the fact that my symptoms resolved on the gluten-free diet, that I do indeed have celiac.

 

As for the symptoms, it is true that it varies with everyone. Some folks feel better in a few days, some are sick for weeks and weeks. Even people who were "asymptomatic" before going gluten-free usually get sick upon gluten exposure after thay have been gluten-free for a while.

 

I hope you are feeling better soon. :)

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Hey Jennifer,

 

That's rough! I do get symptoms that last at least that long, I'm finding (I've been gluten free since getting diagnosed this past June, but unfortunately I've had a good number of mishaps since then to learn all about how my body reacts, ugh). The worst part for me is the emotional part like you described - just a horrible sense of anxiety/despair/hopelessness that's severe enough to nearly keep me in bed for 2-3 days, and then gradually continues to lift over about 2 weeks. The gastro stuff (pain, discomfort, and all kinds of grossness) tends to also be worst the first few days/week, but that hangs around for me even longer - I'm currently about 3 weeks post-glutening and though mentally I feel like a human being again, my system's definitely still out of whack. From past experience I'll probably be back at "healthy" in another week or two.

 

It sounds like you've had a really long time to get practiced at eating safely gluten free, though, so I hope once the symptoms from the bread pass - however long it takes - you'll be better than I am yet at keeping yourself healthy.  :)

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yes, one piece of bread after 11 years gluten-free is not going to give you a positive blood test, but it WILL (as you just found out) give you a doozy of a glutening. If you haven't had problems for a long time, then your gut just went from healthy and happy to "WTF did you just feed me!?" and it going to take a while to recover. I'd say at least a month before you're back up to snuff.

 

Though the testing was probably pointless, I think your reaction to that one piece of bread is plenty of evidence that you definitely have Celiac or at least NCGI and should never touch gluten again. Tell your doctor what happened, declare yourself officially gluten-free for life, and don't worry about having an official stamp of doctor tested approval.

This is the reason why I never went back for testing after going gluten-free, because after feeling better, eating gluten again would put me out of commission for weeks. My mom was brave (crazy?) enough to do it, and has had problems with DH ever since (Don't do it, she told me). My response to the diet is enough for me.

 

In any case, welcome to the Forum! Hopefully we can help get you back on your feet and continue your gluten-free life healthy and happy.

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