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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

I'm Not Convinced By My Test Results.
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5 posts in this topic

Okay, so I am a 17 year old girl who has had one blood test to see if I was celiac or had any deficiencies in my nutrient, vitamin and mineral levels. This was about 4 or 5 months ago now... All the tests came back NEGATIVE.

I have been severely lactose intolerant since I was a baby, and remember growing up with a constant stomach ache or upset stomach after eating virtually anything. From ice cream, to pasta, to cake, I was constantly in the washroom with terrible upset stomachs. When I was 11, I began getting severe ocular migraines (where your vision becomes swirly for about 30 mins, but rarely any pain), my eye doctor and family doctor told me that there's no way to determine the cause of these "migraines" but often times food can be associated with them. Around age 13, I was stricken with the most severe stomach aches I have ever gotten. They started out as just a regular stomach ache, I apologize if this is a little TMI, then the pain would increase and increase until my stomach would make this noise (similar to blowing bubbles through a straw into a little bit of water) and this would happen over and over again. It would send my body into a sort of opposite vomiting spell. My bowel movements were often times watery, fatty (kinda with white mucus looking stuff on it, sometimes with undigested food). One minute okay, the next having increasing pain, then severe diarrhoea. I was prescribed Zantax and was told I had IBS and to avoid acidic foods.

When I was 15, I began exercising and eating considerably less processed foods. I ended up dropping from my unhealthy weight of 153 down to my current weight of 130. My weight loss has happened very naturally, over the period of almost 2 years, with only healthy changes as the cause. This helped my stomach very, very much, but I still had many negative symptoms.

In February 2012, I made the decision to stop consuming dairy. I replaced nearly every dairy product in my diet with a soy alternative, resulting in what I considered a severe hormone imbalance. I missed my for the months of February and March, had severely oily hair and skin, and put on a fairly large amount of water weight. I then opted for a more soy-free version of my dairy-free diet - I know use almond milk, and just don't eat any kind of cheese or yogurt or anything like that.

I began training for a half marathon in the spring, began training with a trainer and she recommended I try cutting out gluten to see if that helped the remainder of my still frequent stomach troubles. I did as she said and began a mainly gluten-free diet in July 2012. I noticed it helped very much. My diet consists mainly of fruits, veggies and protein. Occasionally the odd piece of Udi's bread or a gluten-free, DF cookie.

However, I really just want conformation. I had a blood test taken as I said, that came back negative, but the severity that I get sick when I consume something containing gluten or dairy is unbelievable. Is it possible to have celiac disease and have your blood test come back negative? If I go back to my doctor, he will think I'm crazy, but I just am not convinced that something more serious isn't going on.

I am not currently following a 100% gluten-free diet, and haven't been having the most happy insides lately. I'm sorry this is so long, I just wanted to get my story clear in hopes that someone could help or relate or lend me a little bit of advice. I'll be starting university next fall, or travelling am nervous that without a clear diagnosis that I could be putting myself at risk.

The foods I have determined that I am extremely sensitive to are: Dairy (I'm for sure lactose intolerant), Gluten (suspected intolerance or maybe celiac disease?), Peanuts (severe stomach ache from them), Raw Carrots (severe stomach ache and gas), and I'm very sensitive to sugars (I try very hard to avoid any artificial sweeteners, but even natural sugars cause my insides to act up). *I also have suffered from severe eczema and often times break outs around the times I consume gluten.. I don't know if that could have an effect.

Thank you so much for reading this essay of a post,

Brittany

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My blood work was negative, but I responded so great to not eating it. I could tell after one meal--I didn't feel more sick after eating than before I ate. Luckily my endocrinologist agreed that even if the blood work was negative, but having a positive dietary response that going gluten free would not hurt me. She said it isn't like a diagnosis changes the treatment plan. Celiac, gluten sensitivity/intolerance or wheat allergy are all treated by not eating it.

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You may not have been eating enough gluten to have a positive celiac test. No worries--you know what you're reacting to....so simply eliminate ALL gluten for life. You'll be glad you made the decision.

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If you went gluten free in July, and got tested September (four months ago), that means you were gluten free prior to testing, so the tests can't give you a reliable answer to whether or not you have celiac. You have to be consuming gluten at the time of (and for a few weeks or months prior to) testing in order to be accurate.

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If you went gluten free in July, and got tested September (four months ago), that means you were gluten free prior to testing, so the tests can't give you a reliable answer to whether or not you have celiac. You have to be consuming gluten at the time of (and for a few weeks or months prior to) testing in order to be accurate.

That's definitely a point I hadn't put much consideration into. Thank you!

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