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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.

Newbie Diagnosis
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4 posts in this topic

I was just diagnosed two weeks ago and it's still an adjustment for me never two eat the foods that I love but i'm so glad to have a diagnosis.I would love to hear your stories on how you were diagnosed with celiac disease.I have gone through so many tests and procedures without knowing what was wrong with me and i now have an answer so grateful.

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My story is in the blog section.  "Back from Nowhere."  Is it okay that I say that?

 

I had 30+ years of fog and fatigue.

I became infertile, but have several children

I nearly died 6 years back. My most dangerous symptom was my blood pressure falling when moving to a standing position and high blood pressure.

 Supplements saved me bringing my blood pressure to athletic rate and the blood pressure curve to normal.  These supplements were tested for and recommended by a chiropractor.

I discovered I had Celiac 10 months ago.

 

Sometimes now, my fog clears and I have energy.  I had alot of healing to do, though, and the road is bumpy and long.  I am still dealing with food intolerances, my body working hard on healing, and being super-sensitive.  However, I am alive and have much hope for better things in my future.

 

I hope you have hope and will soon have some recovery also.

 

Diana

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I was doing research on my son's Aspergers (the Gluten-free Casein-free diet) and found references to celiac disease and gluten sensitivity. I realized that i had felt better in the past(after a few months) when I followed the "Eat Clean Diet", which is pretty low carb. I also read Wheat Belly and continued to reduce my family's wheat consumption. After another year, it was becoming more obvious that cutting down on wheat wasn't enough but I tend to avoid doctors so I wasn't getting tested (they always just say that stomach or joint pain, or cold temps were normal for me so I stopped going to them except when kids needed antibiotics). I'd had celiac symptoms since childhood and doctors had done nothing for me.  A good friend knew I avoided doctors and told me about a store with Biocard (ttg IgA) home tests for sale. I bought one, upped my gluten intake for a month and had a very weak positive test. I took it to my doctor and asked for tests, and it was confirmed with a couple of strongly positive blood tests. I chose to skip the biopsy. I also found my hashimoto's when I got my lab result because I requested another TSH test because I knew the two are often found together; I'm pretty sure I was hypothyroid for almost 15 years.

 

My symptoms were pretty classic: stomach pain, bloating, swelling, migraines, joint pain, hair loss, fatigue, bad skin and nails, hypoglycemic, low pulse and bp (fainting), thinking a bit muddled, bad back. Most of this has improved over the months.

 

My kids have since tested negative but they appeared to have some gluten issues so my household is now gluten-free. Two of my three kids are doing much better gluten-free. They might have had a false negative, or it's too early in the disease to test properly or they are non-celiac gluten intolerant.... it doesn't really matter when it comes to treatmenat. They are gluten-free and feeling better and that's what I care about.

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    • Weird Reaction
      Thanks all for your replies. I know by my last couple of blood tests it has shown signs of anemia so this may have escalated. I did tick a few of the boxes. The loss of appetite is very unusual for me and the anxiety is (I'm hoping) the main cause of this it just seems funny that it all started from the Vitargo a bit over a week ago.
    • Daughter with celiac- need test result help
      You are not crazy!  She needs to learn to wash her hands before eating every single time and no fingers in her mouth!   Do you have a 504 plan in place at school? http://www.beyondceliac.org/SiteData/docs/504%20Roadmap/e4630d030351770a8cc47e9280fb19bd/504%20Roadmap.pdf Other parents have had this issue, so you can search the kids section of the forum.    
    • Testing After Celiac Disease if IgA deficient
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    • celiac disease is psychosomatic
      I was diagnosed a couple years ago and started gluten-free diet then. Test also showed damage to my small intestine. I explained to this doctor how I was barely able to get out of bed when I ate gluten in the pastand my intestines are still recovering from the damage. I only discussed this briefly. I consulted with this doctor concerning my dizziness explaining that I get dizzy/migraines when I eat gluten due to my celiac disease. I further explained that my dizziness has been cut in half since I went on a gluten-free diet so I am better able to get out of bed. The consult was about taking tests to figure out if something in my brain was causing my dizziness or this doctor specialized in testing the brain for impairments. In her summary, she stated that my memory impairments were probably due to being precoccupied with thinking about my psychosomatic symptoms. However, I only though about the test when I took it. And I only think about whatever task I am trying to remember when I try to remember it! I feel my symptoms rather than think about them all day long.
    • celiac disease is psychosomatic
      If you don't get the diagnosis you are happy with go to another doc.  Try to find a Celiac Friendly doc.  OR you can do what i did and give up and just go gluten free.  I didn't need a doctor to confirm that if my gas, bloating, migraines, depression, joint pain, rash, dry skin and brittle nails went away when i went gluten free that i must have celiac.  AND 6 months after i went gluten free on my own i had some blood tests repeated that i had done when they were trying to figure out what was causing my severe rash, all the things that were "wrong" with me or abnormal in the the first blood tests, went to normal on the second test.  INCLUDING MY THYROID LEVELS! Oh, i didn't mention that during this time they diagnosed me with early hashimotos.. 6 months later i was miraculously cured from this progressive thyroid disorder according to the blood test results.  I didn't have hashimotos to put it bluntly.   I am almost 10 years gluten free with no positive Celiac diagnosis.  But let me tell you this,  My daughter's neurologist did a DNA test on her 1 year after she too went gluten free and it came back positive for Celiac.  so.  js.     That's my story..  in short.
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