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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.

Overwhelmed by This Possibility
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Even when glutened, I have YET to have a positive TTG (IgA or IgG).  Before you give up on a celiac diagnosis, get the GI to order the rest of the panel.  Make sure it is firmly ruled out.    This happened to my 20 year old niece.  celiac disease was completely ruled out (blood and endo), and colonoscopy clear.  Finally, a pill camera found Crohn's at the end of her small intestine out of reach of both scopes.  Note that she could still develop celiac disease one day.  Not saying you have Crohn's, but be persistent and continue to advocate for your health!  

 

 

Keep eating gluten!  

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Hi Galaxy,

This does not mean that you don't have celiac.  You need a full panel done.  I only test positive on the DGP IgA test.  You still need tTG IgG, DGP IgA, DGP IgG and EMA.  Ask your Dr to order the rest?  Do keep eating gluten until all testing is complete and definitely keep advocating for yourself!  You deserve to feel good!! ((((((Hugs))))))

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39 minutes ago, icelandgirl said:

Do keep eating gluten until all testing is complete

and once that's happened if results are negative please do properly trial the gluten free diet regardless. So much of what you've posted suggests you're on the right track with this, results notwithstanding.

Good luck!

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Thank you all very much. I actually cried when I got the answer. I wanted an explanation that I could "fix." Now I'm back to thinking I'm just weak and possibly crazy. :( I know I'm not crazy, but you know. :P

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1 hour ago, GalaxyDuster said:

Thank you all very much. I actually cried when I got the answer. I wanted an explanation that I could "fix." Now I'm back to thinking I'm just weak and possibly crazy. :( I know I'm not crazy, but you know. :P

That makes sense...I cried with relief when I got my diagnosis just because there was finally an answer.  

Please know that you are not weak or crazy.  Keep pushing for testing.  It could still be celiac, it could be Crohns.  Push your Dr's to figure this out. 

Best wishes.

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12 hours ago, GalaxyDuster said:

Well guys, my blood test came back negative for celiac disease. Total IGA =161 (normal), IGA-TTG was < 1. I'm really quite surprised. My GI appointment was bumped up to 5/10 at least, so I won't wait til June to see them. My quest to find out where my lost 40 lbs went continues. Thank you all for your kidness and expertise while I waited for my answer. I can come back and let you know what they found out, in either case. Thank you very much again. All of you stay well!

It is too bad that so often a full panel isn't done. Glad your appointment got moved up and hopefully you will get a clearer answer from the GI. Do keep eating gluten until the celiac testing is done.  Once the testing is done do give the diet a good strict try. Hang in there.

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7 hours ago, GalaxyDuster said:

Thank you all very much. I actually cried when I got the answer. I wanted an explanation that I could "fix." Now I'm back to thinking I'm just weak and possibly crazy. :( I know I'm not crazy, but you know. :P

Wish I could give you a hug. Unfortunately I know how that feels with Neurologists, Internists, Endocrinologists, Rheumatologists, GIs..... I got so tired of crying my drive home after refusing yet another script for Prozac.  I do hope your GI can give you some answers even if it is just to rule out other possible issues. Keep on the gluten and we are here for you.

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