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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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I was diagnosed with Celiac sprue in May and was relieved for the past 14 + years this was not all in my head. I went on a all protien diet at first not knowing what I should eat?? I live in a very rural area and gluten free just was not a issue in fact the hospital dietian only had one other patient that was a celiac at that time. So I have had to learn on my own the hardway and now I am very sensitive to gluten but I have several other things happening that I am not sure is related to being a celiac so I need to ask all of you ..

1) I sometimes break out in the itchies from top to bottom... I had seen a dermotologist and they biospied me but did not find what they are looking for.. At the time I had three hershey bars (one a day) then later found out candy is often dusted with flour and do not list it as a ingredient... I am taking allergy medicine every other day to prevent a scratch attack .. Has anyone else had this problem ?

I did break out last week with little bumps mostly unvisible in the back of my knees down to my ankle... called the dermotoligist and she said nothing to worry about.... Weird...

2) I began having some pain in my tail bone then pain in my wrist joints. The doctor gave me a athritis test and x-rayed my tail bone and said I was fine. Last night the pain was horrible in my shoulder bones, arm joints, wrist and all the bones in my fingers.. Has anyone experienced such pains ?

3) I am very active and exercise vigorously 7 days a week usually and had lost a lot of weight prior to this whole celiac bizz on my own... but when I finally found a bread that I can finally choke down I gained 10 pounds and I am afraid to gain anymore... any suggestions ? Most celiacs I have read about are worried about being so thin, wish I had that problem.

I know I should be able to get this information from my doctor but this last visit he though the only food I was to avoid was wheat... Boy that really worried me. Please give me some advise I could use........

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I too have had all kinds of changes/wierd things happening since going gluten-free. My skin has totally changed, I am often itchy and get rough dry skin off and on, mostly on. My skin was never dry before, I wasn't itchy before. I get very wierd joint pain and other pain and then it goes away but I also feel stronger everyday. My theory is that things are working themselves out now that it is getting some nutrition.

Maybe working out so heavily isn't such a good idea right now, your body may need time and energy to catch up internally before devoting so much to muscle output? My belief is that it is good to keep moving, your lymph system cannot function to move waste unless there is some movement, but if there is too much waste to move to quickly along with other biological functions that need to start running properly and organs/glands that need to get the nutrition your hopefully now absorbing...that is a lot to ask of your system. Just a possibility.

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I was diagnosed with Celiac sprue in May and was relieved for the past 14 + years this was not all in my head.  I went on a all protien diet at first not knowing what I should eat?? I live in a very rural area and gluten free just was not a issue in fact the hospital dietian only had one other patient that was a celiac at that time.  So I have had to learn on my own the hardway and now I am very sensitive to gluten but I have several other things happening that I am not sure is related to being a celiac so I need to ask all of you ..

1) I sometimes break out in the itchies from top to bottom... I had seen a dermotologist and they biospied me but did not find what they are looking for.. At the time I had three hershey bars (one a day) then later found out candy is often dusted with flour and do not list it as a ingredient... I am taking allergy medicine every other day to prevent a scratch attack .. Has anyone else had this problem ?

I did break out last week with little bumps mostly unvisible in the back of my  knees down to my ankle... called the dermotoligist and she said nothing to worry about....  Weird...

2) I began having some pain in my tail bone then pain in my wrist joints.  The doctor gave me a athritis test and x-rayed my tail bone and said I was fine.  Last night the pain was horrible in my shoulder bones, arm joints, wrist and all the bones in my fingers.. Has anyone experienced such pains ?

3) I am very active and exercise vigorously 7 days a week usually and had lost a lot of weight prior to this whole celiac bizz on my own...  but when I finally found a bread that I can finally choke down I gained 10 pounds and I am afraid to gain anymore... any suggestions ?  Most celiacs I have read about are worried about being so thin, wish I had that problem.

I know I should be able to get this information from my doctor but this last visit he though the only food I was to avoid was wheat... Boy that really worried me.  Please give me some advise I could use........

It is possible you may have Dermatitis Herpetiformis

Dermatitis Herpetiformis is a rare condition with a very itchy rash.

DH associated with Coeliac Disease.

It is, however, difficult to diagnose and not many skin specialists understand about it.

You can see examples & descriptions of DH & ask for advice on this website.

http://www.dermatitisherpetiformis.org.uk/

Bone pain can indicate low bone density which is a risk for coeliacs.

Have you had a DEXA scan? This can show the state of your bones.

Please see :

http://coeliac.info/suppboard/viewtopic.ph...&highlight=dexa

I used to be underweight before diagnosis. Then I could eat any food & it would rush through me as my body tried to get rid of the gluten.

When you are diagnosed with celiac disease your body can recover on the gluten-free diet & it absorbs more, including the calories!

However, being overweight could indicate a thyroid problem which is sometimes found in coeliacs, so you might want to have your thyroid checked - but I think you may find you are just absorbing more food now your guts are healing.

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Careful with low calcium intake: celiacs tend to improperly absorb calcium and also eliminate milk products from their meals. Just be sure you get enough calcium (1g per day is needed, I believe, check other sources too).

And yes, I, too, suffer from different forms of skin problems (incl dandruff), that get worse when my digestive problems get more severe, and I'm pretty sure they are related. However, you indicate even worse symptoms than I ever had, so you should have a trip to a city with better doctors to check your condition.

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    • Hello and welcome I don't have celiac. I do have several symptoms in common with you and I do have a problem with gluten, so NCGS for want of a better term.  A celiac response to gluten involves the immune system so there certainly can be a delay between ingestion and the body producing the antibodies. That would correlate with your tongue aching progressively through the week. Some of the weirder symptoms of celiac occur because those antibodies that have identified gluten proteins as a problem then attack different parts of the body, maybe that's the more delayed reaction in your case. Last time I was glutened definitely I noticed some reaction in a few hours but it was a couple of days before I was certain. After effects can last for weeks or months even.  Wheat allergy is the one with the instant response, it's IGE mediated and so you can have an immediate surge in histamines and in extreme cases anaphylaptic reaction. NCGS is less well understood, some dispute it's existince or question if gluten is the cause. The symptoms however are similar to celiac as far as I know and that includes response time.  You've been through a miserable time but your still young and you need to decide whether you want to pursue a diagnosis or not. If you do, then it will require a gluten challenge of probably 6-12 weeks. See the links below for more details.  If you don't I suggest you go strictly gluten free, keep a food diary and see if the improvements you noted before continue. I think you've probably found your answer. Best of luck!   Further reading https://www.celiac.com/gluten-free/announcement/3-frequently-asked-questions-about-celiac-disease/
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    • I and many others here have been there and sympathise! Keep on keepin' on, it won't be long now before you can start feeling better. In the meantime, if there's a cheesecake, pastry etc that you want to say goodbye to, now's the time...
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