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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Gluten Free 2 Years Still Having Issues
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Jen G    0

I was diagnosed 2 years ago this July and after looking back on everything I probably had symptoms for at least 5 years before I was diagnosed. I have been on a strict gluten-free diet with no cross contamination. I don't go to restaurants and I prepare my own food at home. I am very careful about checking lables on everything right down to hand lotion. 2 years ago I had almost every symptom on the list except for seizures or thyroid problems. Since I've been on a gluten-free diet my symptoms seemed to have gotten better, everything seemed to have healed so I don't have digestive issues anymore and I've been fairly healthy. But over the last few weeks it seems that some symptoms have returned. I am very tired all the time again. My muscles are cramping, twitching and aching. My blood pressure has gone up again. My skin hurts. I am bloated and retaining water. And my hair is falling out and very dry/brittle no matter what I do to it. I do take extra vitamins (Multi, B Complex and D), but I just had bloodwork done yesterday to test levels. Is it possible that even after 2 years I could have issues again or still with absorption? If not what are other possible issues? Has anyone else gone through this? Thank you in advance for your help.

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kareng    1,992

Possible it has nothing to do with Celiac?  Check your thyroid? 

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Definitely have a work up to see if it is unrelated.  If celiac, did you make any changes to your diet recently?  You say you prepare your food at home.  It is produce and unprocessed meats?  If eating products, could processing have changed in any of them to add cc chances?  Do you eat gluten-free grains?  There have been studies showing that they can have cc issues.  You can try eliminating suspect items one at a time to see if anything helps.  Some of us get sensitive to lower levels of cc as time goes on.   I hope that you feel better soon.

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    • https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/ ^Newbie 101 section PS you are diagnosed celiac right? Sorry but a standard question as you should get the diagnosis out of the way before going gluten-free.
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    • Hi to any & all who read my post, and an advanced thank you to those who reply,        My post may be kind of robust & lengthily, but please read until the end if you are able. To give a sort of "back story" here, I'll explain my situation in a nutshell. In November of 2014 I was diagnosed with a gluten intolerance by my allergist after recurrent, severe mouth ulcers and a bodily rash. I had a blood allergy panel, but NOT a Celiac specific panel, which ruled out other food allergies completely - corn, pea, chickpea, chicken, tomato, egg, milk, etc. My allergist suggested a gluten-free diet, which I adopted & have been adhering to since then. Recently, I've been acutely sick since August of 2016, so we're talking a year plus now. My symptoms began with a burning abdominal sensation, pain after eating, premature and uncomfortable full feeling, bloating, etc. My internist referred me to my current GI doctor where I was diagnosed with GERD (chronic acid reflux) , and prescribed Omeprazole, which I still take daily. My next appointment in February had me still feeling awful & my GI doctor decided to perform an upper endoscopy, which I did in March. He was looking for ulcers, evidence of bleeding or infectious disease, and Celiac. Mind you, I had informed him that I've been eating strictly gluten free for almost three years now. He claimed this really didn't matter? This has left me wondering. Anyway, the results came up empty, but I was found to have evidence of gastritis. Then came the rest of my symptoms - frequent diarrhea, bloody diarrhea, extremely greasy stools, stools that float, mucus in stools, unable to "wait" to use the bathroom (I.e. Urgency), alternations of diarrhea and constipation, weight loss, low grade fever, EXTREME fatigue, poor concentration, memory loss, cognitive decline, and my mouth sores have reared their ugly head once again. After I first went gluten-free, the ulcers probably cleared up for a good year at least, which was heaven on earth for me. Now, they're back with a ruthless vengeance. As we speak, I've barely recovered from one for a day or so, and I'm down with two more. You can't even make this stuff up. After I addressed these new symptoms with my GI, he was concerned I may have had Crohn's Disease or Colitis, so he performed a colonoscopy, which ruled out both conditions through gross observation & biopsy samples. Since colonoscopies can only read so much of your colon & terminal small intestine, I then had a  PillCam to see the rest. The only results he could suggest was that I have a "slow bowel transit," so I was diagnosed with Irritable Bowel Syndrome. The umbrella term for all intestinal and abdominal suffering with no definitive cause.        Summary of my bible here is that I'm still suffering greatly. The intestinal issues are really giving me poor quality of life, and these pervasive mouth ulcers are more than I can bare anymore with the pain, inability to eat, weight loss, etc. it's all a sick and harrowing cycle that I am caught in the middle of. In saying this, I'm almost curious that I could have Celiac disease that was horribly missed. If I had already been gluten free & a biopsy was taken it would appear as though I'm a healthy individual, no? I was informed you had to be eating a strict gluten FILLED diet prior to ANY testing. ALL of my testing was performed after I already went gluten free, which could have altered results horribly.   I'm almost crazy enough to think that if this is the case, I'm going to eat gluten just so I can be re-tested because I can't go on like this anymore.    Can anyone please clarify and/or suggest something?
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    • Yikes!   Yes!  I will correct.  Thank you. I am so used to being GLUTEN FREE!
    • Maybe you should consider a bone marrow biopsy.   Your hematologist might be on to something.  At least it would rule out several things.  Based on this link, it could be related to SIBO or another AI issue.   http://www.medicinenet.com/neutropenia/article.htm Another possibility is Mast Cell Activation Syndrome or Mastocytosis.  That could explain the WBC, low BP, fatigue, etc.   A bone marrow biopsy is used to diagnose mastocytosis.    https://www.celiac.com/gluten-free/blogs/entry/1931-mast-cell-activation-syndrome-madness/ https://tmsforacure.org/overview/
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