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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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greenchick22

Negative Blood Test 10 Years Ago...could I Still Have Celiacs?

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Hello!  I'm in my thirties and had a Celiac blood panel about 10 years ago due to a lot of gastrointestinal issues at the time.  Blood test came up negative, endoscopy showed inflammation but that's all they told me and then diagnosed me with IBS.  I didn't know to ask more, I was so young, but I wish I had pushed for more info.!  Following that I took Levsin for my stomach, which helped, and on my own went off of dairy and basically diagnosed myself lactose intolerant.  Also started probiotics.  Stomach was much better, but it still flared up sometimes.  Fast forward a few years and I started experiencing fatigue that got worse and worse.  I feel like I could sleep for 15 hours or more if I didn't have to work.  I feel lazy, but I'm just too tired to do anything!  I used to be motivated to exercise but not anymore.

 

Other symptoms that have appeared or worsened over the past few years:  loose stools (sometimes), gassy, burping, eczema, itchy skin, anxiety, depression, irritable/moody suddenly for no reason, terrible pms, "fuzzy" thinking, memory problems, can't concentrate, easy bruising, hip and leg soreness,  weakness in muscles of hands and arms and sometimes face, congestion/frequent sinusitis, dry eyes and mouth, costochondritis, asthma,  more cavities (never used to have them)

 

Last year my liver was enlarged and I had low potassium and had to take a supplement - it improved and nothing was ever found out about why the liver was inflamed.  

 

I had a blood workup a few months ago and turned up deficient in Vitamins B and D.  Iron wasn't deficient, but also wasn't very high.  The range is 10-291 and mine was 32.   Red blood cell count was a little high, and alkaline phosphatase was a little low - both of which they said not to worrry about.  They put me on high doses of vitamins to handle the B and D and I thought surely my depression and fatigue would improve with those, but no such luck.  

 

I feel awful most of the time and miss the energy and zest for life I used to have!  I just had another Celiac panel, in the hopes that maybe something will turn up this time.  Is it possible to test positive years later, after testing negative? Does anyone have suggestions on what to do if the test comes up negative again?  I'm almost certain I have some sort of gluten problem...not thrilled about a diet change but if I feel better, it will be totally worth it.

 

Thanks!

 

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Yes, it is possible to test positive even if you had a negative test years earlier.  If you do have negative test results again do a gluten free diet trial and see if it helps.  Testing for Celiac is three fold 1 - Blood panel, 2 - Biopsy, 3 - Patient's response to a gltuen free diet. If 3 helps even if 1 & 2 are negative you may be nonCeliac gluten intoleratant. The treatment is the same however - a life long gluten free diet.

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I hope your test will be definitive for you.  The diet is difficult, but a piece of cake compared to living with mental fog and fatigue.  I hope you will be getting better soon.

 

D

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Thank you both!  As crazy as it sounds, I'm almost hoping that I can get a positive diagnosis.  At least then I'll have some knowledge about changes to make and hope of feeling better.

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Hi I am totally new at this diagnosis thing but this may help you. I would get retested if i were you because of this. I was tested for the celiac panel last september by my GP and the result was negative. Now fast forward to this year to March and i retested. The test itself had changed but it was the same celiac panel that was ordered and this time the result was positive. They tested this time for endoantimysial antibodies i may not have spelled that right. So now i am waiting to do a biopsy. Note though that if you want to do a biopsy i don't think you should stop eating gluten because then you will heal and they won't find the intestine damage if you are celiac. So that is just six months of time and the test changed. Retest for sure and i will you well!!! :)

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I forgot to mention that i have the same deficiencies B12 and D like you and iron as well for me. I'm in my late 30's too. So those alone I would say Test! 

 

:)

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