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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.

I'm Actually Really Scared... Help?
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3 posts in this topic

Okay so basically it was a year ago when I started thinking that I had IBS. However it was about two months ago when I found out that I had a blood test and I am vitamin D deficient and anemic. I do have restless leg syndrome, (which is a symptom for Celiac). I also found out that whenever I ate gluten and wheat, my IBS symptoms were worse.  :wacko:

 

So I went on a gluten free diet for a week and it was amazing. I didn't feel any cramps of bloating... My doctor suggested that I might have Celiac. I had a blood test and it came out negative but she said that they can't rely on just a blood test, so she suggested an endoscopy... At first I was willing to because if I do have Celiac then, I should get diagnosed. However, I am only 16 and I'm not really keen on the idea...  :o

 

I decided that I would have the endoscopy later on when I'm ready but if I do have Celiac and carry on eating gluten, then I could end up with type 1 diabetes and cancer... and that really scared me... I've been eating gluten for a year now since I found out that I might have 'IBS' and so if it is Celiac then... ahhhh I'm so scared. 

 

I've decided to go on a strict gluten-free diet but do you think I'm worrying too much or am I doing the right thing? Also... should I have started the diet earlier on? (I'm such a worry bag, I'm so sorry)

 

Thank you so much :(

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Okay so basically it was a year ago when I started thinking that I had IBS. However it was about two months ago when I found out that I had a blood test and I am vitamin D deficient and anemic. I do have restless leg syndrome, (which is a symptom for Celiac). I also found out that whenever I ate gluten and wheat, my IBS symptoms were worse.  :wacko:

 

So I went on a gluten free diet for a week and it was amazing. I didn't feel any cramps of bloating... My doctor suggested that I might have Celiac. I had a blood test and it came out negative but she said that they can't rely on just a blood test, so she suggested an endoscopy... At first I was willing to because if I do have Celiac then, I should get diagnosed. However, I am only 16 and I'm not really keen on the idea...  :o

 

I decided that I would have the endoscopy later on when I'm ready but if I do have Celiac and carry on eating gluten, then I could end up with type 1 diabetes and cancer... and that really scared me... I've been eating gluten for a year now since I found out that I might have 'IBS' and so if it is Celiac then... ahhhh I'm so scared. 

 

I've decided to go on a strict gluten-free diet but do you think I'm worrying too much or am I doing the right thing? Also... should I have started the diet earlier on? (I'm such a worry bag, I'm so sorry)

 

Thank you so much :(

There is no need to stress out so much :)

 

While a diagnosis is good, if you feel you would do better without it, then go for it. However, from my understanding, you are still on a gluten diet right? If so, i would redo the blood test (as being off of gluten for a week could cause it to have a false negative) and then do the endoscopy.

 

The reason behind this is if you go gluten free for quite some time and then decide you want to be tested, then you would have to do a gluten challenge for several weeks and you may feel even worse then.

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I second what shadowicewolf said. If you were gluten free prior to the blood test then you could have had a false negative. In order to get a positive diagnosis you need to be eating gluten prior to the blood test and the endoscopy.

 

It is a personal decision to get the official diagnosis. I went through the gluten challenge for my endoscopy in October. It was horrible - but I definitively know that I HAVE TO BE gluten free forever. It made it more real for me. But if you feel good being gluten free and can maintain it without a diagnosis then do that. But to wait and then get diagnosed later because of the fear of endoscopy -- not worth it. The endoscopy is simple and painless. You absolutely won't have any pain from the biopsies. You will be sedated and it's a quick process.

 

Hope that helped.

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