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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.

Negative Tests- Good News, But Sooo Frustrating!
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3 posts in this topic

Hi,

 

So, my testing is not going well (or going well, depending how you look at it lol).  I've had a colonoscpy, endoscopy and celiac blood work (although the GI doc only ran one blood test): ....all negative.  I am staying on a gluten diet, despite my symptoms, as my Rheumatologist may want to send me to another GI for a second opinion.

 

Continuing Symptoms:

- insomnia- most night I can't get to sleep until 1-4 am

- morning fatigue, even on night where I can fall asleep around midnight and get 7 hours sleep, I'm a zombie until 2-3 pm, then I wake up and feel more normal

- BM's- not regular, foul smelling, sticky, sometimes yellow.  Yesterday was almost grey like and looks like clay! ewww

- swollen eyelids in the morning, sometimes with hives

- headaches, occasional migraine with flashing lights when I close my eyes

- gas, bloating, cramping- although this doesn't always happen

 

Before I started my testing, I was gluten free for a long time, with the occasional cheat meal.  Then I got really sick....constant diarrhea for like 8 weeks, going to the bathroom 12-15 times a day.  I was totally drained, lost about 20 lbs.  During that 8 weeks, prior to testing, I was only able to eat rice and oatmeal.  I did a three week gluten challenge before my endoscopy.  But when the blood test was done, I was more or less Gluten free.  I am starting to think that wasn't enough of a gluten challenge?

 

Hopefully my RA doc will have a good plan, I am not sure how long I can continue eating gluten, but I really do want answers :(

 

 

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I'm sorry that you don't have a clear answer! Could you stay on gluten long enough to get the rest of the blood work run? It's best to run all of the blood tests, if only one is run, it may miss celiac.

 

If the doctor refused to order it, you can order it through a private lab and self pay. 

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Thanks Ruth, yes I am staying on gluten until I can see who the RA doc's will be sending me to for a second look.  I will request the full blood work at that time, I just hope its not months from now that I can get an appt :(

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