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      • Frequently Asked Questions About Celiac Disease   09/30/2015

        This 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 email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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    About pain*in*my*gut

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    • Birthday 04/11/1973

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    • Gender Female
    • Location Chicago suburbs

    pain*in*my*gut's Activity

    1. pain*in*my*gut added a post in a topic Hypo/and Hyper Thyroid Symptoms   

      I get that fullness in my throat when my Hashi's is flaring. It aches, too. My doc said it's because my thyroid is enlarged and pushing on my trachea. You need t3 and t4 testing. I would be willing to bet you have Hashi's and need supplementation. I had every one of your symptoms before I went on thyroid meds.
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    2. pain*in*my*gut added a post in a topic Blood Test Received -- Endoscopy Or Not?   

      The positive EMA is virtually 100% specific for Celiac. You also have a positive DGP, which is also very specific for Celiac. I would not bother with a biopsy if I were you (but that is just me). Because your mom is Celiac, I would consider yourself diagnosed.

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    3. pain*in*my*gut added a post in a topic Confusing Diagnosis   

      Have you had a recent Celiac blood panel done? Just because you were negative years ago does not mean that you stay negative. Those biopsy results sound suspicious to me. "Sandy"? Some docs won't dx Celiac unless the villi are totally flat, this is a common cause of falsely negative biopsies.
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    4. pain*in*my*gut added a post in a topic Biopsy Results   

      The ONLY tests that was positive for me was the DGP. It was very high. I cannot eat gluten or I get very ill, with symptoms exactly like yours. I wonder why your doc is not using the DGP, as it has replaced the anti-gliadin abs because it it much more specific for Celiac. Also, getting tested for the genes could help add some pieces of the puzzle.
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    5. pain*in*my*gut added a post in a topic Off Gluten For 1.5 Years, But Having An Endoscopy For Nausea Next Month. Dr Wants Me To Eat Gluten To Get An Actual Diagnosis, Should I?   

      Daily nausea could be a sign of gastroparesis. I have it. It's caused by your stomach emptying too slowly. An upper barium swallow study would give you more info on this condition than an endoscopy! I think you need a new doc!
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    6. pain*in*my*gut added a post in a topic Should I Have My Children Tested?   

      ^^^^This. Why wait for symptoms? By that time the damage has been done. Not to mention that kids sometimes have different manifestations of Celiac (cognitive issues, neurological, etc.) It's just a blood test. Get the genetic test first, because if they are negative, then you don't have to worry about it. If they have the genes, get them tested for Celiac.
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    7. pain*in*my*gut added a post in a topic Freaking Out   

      Just my 2 cents.....if your biopsy is negative, please consider going gluten free anyway. Biopsies are very unreliable, and false negative results are very common. With your positive symptoms and bloodwork, you should not be consuming gluten. GI docs put WAY too much emphasis on that biopsy. You should also request genetic testing to see if you have the genes. If you do, your kids need to be tested as well.

      Good luck!
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    8. pain*in*my*gut added a post in a topic Diagnosed 6 Months Ago Still Having Problems   

      Hmmmm....are you sure you are strictly gluten free? I just found out the hard way that hydrolyzed Brewer's yeast has gluten when used as a flavoring in foods. Could you be getting cross contaminated in some way?

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    9. pain*in*my*gut added a post in a topic Still Have Chronic Fatigue - Please Help   

      I see you are a male.....have they tested your testosterone levels? If that is low, it can cause fatigue. Just a thought!
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    10. pain*in*my*gut added a post in a topic Diagnosed 6 Months Ago Still Having Problems   

      Yikes! It sounds like your intestines were severely damaged, and that is going to take longer to heal. Six months is too soon to expect a full recovery. Are things any better, or is it still as bad as before you went gluten-free? And I also agree, you could have another issue going on besides the Celiac. What does your doc think?
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    11. pain*in*my*gut added a post in a topic If You React To Oats What's It Like?   

      I am one of the unlucky few who cannot tolerate even gluten-free oats. They make me sick the same way gluten does. Bummer!
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    12. pain*in*my*gut added a post in a topic Please Help! Positive Blood Test After Over A Year Of Gluten Free!   

      Yeah, I know you are right. That is the plan for at least several months. I was definitely getting very complacent about making extra super sure my food was gluten-free. I even had nachos with queso dip at the movies a few weeks ago without even asking if it was gluten-free! Odds are it was NOT, as I was really sick that night. Duh. Live and learn! Thanks for your reply!
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    13. pain*in*my*gut added a post in a topic Please Help! Positive Blood Test After Over A Year Of Gluten Free!   

      My GI doc actually said that if my Celiac panel came back positive, then we would "obviously" do another biopsy to try to get that positive biopsy. I told him I didn't need a positive biopsy to convince me that I have Celiac, and that the +DGP was enough for me (and my rheumatologist). He disagreed, and said there were other things that could cause positive bloodwork. When I asked him what "other things" he started talking about the ttG test. Right, but what about the DGP, which is more specific than ttG for Celiac? He wasn't even familiar with what I was talking about! I had to explain what DGP stood for and how it indicated an immune response to gluten. He got all defensive and said I still needed further testing. What an idiot!

      I am pretty sure that a have been glutened at least 5 times over the last few months. We have been eating out more, and I have been lax about making sure stuff like salad dressings are gluten-free. There is a new Chineese restaurant that we have eaten at several times that has a gluten free menu, but I am worried that they might not have known that soy sauce has gluten or there is CC going on in their kitchen. I am going to talk to the manager before I eat there again to make sure!

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    14. pain*in*my*gut added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)   

      Please Help! Positive Blood Test After Over A Year Of Gluten Free!
      Hi all! I have been gluten-free since September 2011, and my tummy has been good. Up until 6 weeks ago! I started having bouts of diarrhea, bloating, gas and reflux. Then the dreaded left sided abdominal pain came back (this was what lead me to my Celiac dx in the first place). My current GI, who is clueless about Celiac, wants me to have an upper GI barium study done. Before I agreed to that, I asked him to recheck my Celiac panel, because my symptoms were like I had been glutened. Lo and behold, my DGP antibodies are still elevated! They came down from 59 to 29 (anything over 19 is positive). I have been out to eat several times over the past few weeks that I could have been glutened, but would that make my antibody go up? I thought it took more of an ongoing CC issue to keep antibodies elevated. I have been less OCD about cross contamination lately, so I guess it's possible I'm getting gluten from somewhere.

      I am NOT getting the barium GI study done! What a waste! It's obvious there is gluten getting in me somewhere, somehow. My GI isn't convinced that I even have Celiac because my biopsy was negative, even though I have 4 out of the 5 diagnostic criteria (+ blood work, + genes, symptoms consistent with Celiac and a positive response to the gluten-free diet). Not to mention 4 other auto-immune diseases, including Hashimoto's thyroiditis! But because my biopsy was neg, he refuses to treat me as Celiac. Whatever...I'm not going back to him!

      So I guess my question is would a few instances of glutening cause my DGP to still be elevated, or do I need to assume that even a crumb of gluten here and there from CC is causing my issues? Thanks!
      • 4 replies

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