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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
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Could It Be Celiac?



I've suspected for a few years that I could be celiac. I wasn't having crippling pains or running to the toilet but I often get a stomach ache about 20 minutes after I ate, I always take extra fibre or things don't move, and a few days a week I get painful bloating in the evenings. It's been like that since I was a child. About 30 years ago, I remember my mother taking me to the doctor who said,"she's one of those people who gets a stomach ache after she eats." Even as a child I remember thinking, 'Um, yah...really?'

I also wondered about it because I have a cousin who is celiac. I also have another autoimmune disorder (ITP) and from what I've heard, it's not uncommon to have more than one autoimmune disorder. And then I started reading this forum and found stories of people who controlled their ITP through diet! That annoyed me... I might have done steroids and had my spleen taken out for nothing if it was celiac related?? And then there is my creaky and painful joints, my shoulder became weak (actually since I upped my gluten... hmm) a couple of weeks ago and I have a hard time lifting my arm above my head. I've even had a rash, that looks suspiciuosly like dh for about 4-6 weeks on my stomach, although is is extremely small and has stopped itching...

I partially put off testing because Of my family and what a hassle going gluten-free (gluten free) would be. My husband is great but he's a true meat, potatoes and bread kind of guy, and my three young boys are picky.... I criticized a family member's handling of her very picky eater before having kids (don't we all know more about raising children before we have them) and then I was blessed with picky eaters. One child survives on the "Beige Diet": bread, chicken nuggets, toast, fries, buns, bananas, muffins, appleasauce... you get the idea.

Anyway, I dislike going to the doctor, and a friend of mine who knew this recommended the Biocard Celiac test which you can do at home. It was on sale so I bought it.

Before doing the test, it recommends eating the equivalent to 1-4 slices of bread a day. I don't eat that much bread as a general rule except maybe on the weekend when hubby makes french toast so I upped my gluten. After two weeks I was getting curious so I tried the test.

I'm not sure how accurate my test was... there is a pin prick where you need to collect a good sized drop of blood and I didn't seem to want to bleed that day. No matter how I squeezed or pushed, I couldn't get the full blood amount the test wanted. I think I had about 75% the correct amount of blood.

Anyway, I mixed it up and dropped 3 drops onto the tester, I felt like I was doing a pregnancy test again... I watched the control line come up and after 3 minutes... still nothing else. I figured that I was fine and that I wasn't celiac, but I'd check again at the 10 minute mark as directed.

By fluke, I stopped reading at the 10 minute mark and checked again, and there was a second line! It was faint but it was there... my stomach just dropped. I thought I was fine but according to this test, I'm a celiac with by over 90% certainty..

I've now got blood tests booked for Tuesday to do a celiac screen and I'm nervous. The home test checks for tTg IgA and if I could get a positive test on that, without a full blood sample, I imagine that the screen (which I think is tTg Iga and EMA) will also be positive.

I'm almost more nervous to get a negative... I think going gluten-free would be easier if I was sure I had celiac but if I start getting conflicting tests... then what? I'm actually hoping for a positive so it is more definitive (in my mind) and I can get on with being gluten-free. I'm not doing the endoscopy since it doesn't benefit me in any way.


Recommended Comments

The blood test is just a screening and is not a definite answer. There are many false negatives. The endoscopy biopsies are the only true way to tell, according to my daughter's gastro specialist. Her blood test was negative, but the biopsies were positive. Being the only gluten-free eater in the house is not a big deal, really. There are many gluten-free meals that taste wonderful; my family likes many of them better than the traditional version. Also, you can make gluten-free pasta for yourself and serve regular to your family, etc. It really just sounds worse than it actually is. If you are celiac or just gluten sensitive, the extra effort will be totally worth it! Good luck.

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