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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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Symptoms And Self Diagnosis

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When I eat anything containing gluten my stomach feels like there are thousands of tiny needles in my stomach within a minute. Within 5 minutes my whole body starts shaking like I'm incredibly nervous and I cannot control it. I begin to feel nauseous and feel so weak that even lifting my arm is difficult. My heart rate increases and i have a hard time breathing.The shaking and weakness last for hours after I consume the food.  

 

I've had abdominal ultrasounds, blood tests, and stomach biopsy's with my GI and had no luck. Unfortunately, I do not know what the doctor was testing me for when I underwent these tests. I only know that the day before my stomach biopsy I went gluten-free on the advice of my mother (who suggested that I do it because my dad is allergic to gluten,soy, and dairy).

 

It's been almost 2 months since I became gluten free. The only time I've experienced the symptoms described above was the day I ate bread, in an effort to test my "self-diagnosis."  I've also noticed that I am more sensitive to gluten now than I was 2 months ago, the smallest amount of cross contamination will make me experience my symptoms. 

 

I'm debating how to proceed, I apparently was highly allergic to gluten for almost a year and lost a lot of weight (currently 99 lbs) and muscle due to the constant weakness and lack of nutrients being absorbed in my intestines. Do I go to a primary care doctor to make sure that gluten is the only thing I'm allergic to?  Should I make sure than the extra stress on my body didn't cause some long term issue? I have thousands of dollars in medical bills from the constant doctors visits and tests over the last year so I don't want to waste any more money or time if it is not necessary.

 

Any comments help :)

 

 Anne- 24 years old 

Michigan resident

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Welcome to the board. :)

Celiac disease is not an allergy; it is actually an autoimmune disease with many symptoms, some of which you have, that attacks the small intestinal villi when gluten is eaten (as I understand it). To get a celiac disease diagnosis from the medical establishment, you need positive blood tests and/or a positive endoscopic biopsy after consuming 1-4 servings of gluten (ei. bread slices) per day for 4-12 weeks - the amount and time period varies depending on the source.

The most common blood tests are:

tTG IgA and tTG IgG (anti-tissue transglutiminase)

DGP IgA and DGP IgG (deaminated gliadin peptide)

Total serum IgA - a control test

EMA IgA

If you are not consuming gluten in the weeks prior to testing, there is a strong possibility that your test results could be inaccurate and a false negative.

Celiacs are often low in some nutrients like calcium,iron, ferritin, potassium, D, and B's. Thyroid problems are common too are should be checked if you have hypothyroid symptoms.

Other food intolerances are possible too. Lactose intolerance is very common but sometimes resolves with healing. Soy and corn are problems for some too.

If the test results are negative, you could have non-celiac gluten intoleranc(NCGI) which has all the same horrible symptoms except for the villi damage.

I hope that helped a bit. Good luck! I hope you find some answers soon.

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Hi Ann,

 

I had my first blood test yesterday after a week off gluten (and all grains). My doctor said that it takes six months for the antibodies involved in celiac to clear out. I suggest you go ahead and get tested asap, and also ask to be tested for the genetic marker.

 

Even if you don't have celiac disease you may be seriously gluten intolerant. But if you do have celiac, it needs to be part of your medical record.

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