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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.

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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    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
    • Silent Celiac or Non-digestive symptoms
      Oh, you might learn how to tell if you had been glutened.  I just had anemia as my main symptom.  I did not have any tummy issues at all.  I was in shock when my doctor even suggested testing me for celiac disease!   Glutenings can vary as we are all different.  For some it is just a few days, others a few weeks and others months (that would be me).  My last official glutening as supported by follow-up antibody testing lasted for three months.  Guess what?  I had vomiting, abdominal pain, the works!  Funny how celiac disease can change and evolve over time.   Welcome to the forum!  Have some patience and learn all that you can.  The good news is that you can feel better and no medications are required!  
    • Confused
      Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.
    • Could this possibly be related to celiac or a gluten intolerance?
      If you did actually have celiac disease, it can take weeks, months and years to recover from some of your symptoms, especially neurological ones.   Best to get screened for celiac disease.  It's a simple blood test.  Any medical doctor can do it.  But a GI doctor is needed for a diagnosis, since an endoscopy is part of the diagnostic procedure.  BUT you have to be consuming gluten to get accurate results! http://www.cureceliacdisease.org/screening/ http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/ Keep on researching.  I wish you well!    
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