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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 tallfran

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    • Birthday 05/11/1946

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    • Gender Female
    • Interests Backpacking and Hiking, Reading, Quilting, Travel
    • Location Georgia

    tallfran's Activity

    1. tallfran added a post in a topic Clueless Doctors   

      I agree that Agri-Business and modifying wheat to add more gluten has a lot to do with our troubles.

      But again, in defense of the doctor, he at least knew that celiac has something to do with gluten intolerance. It was not a clinical setting and we have no idea what kind of doctor he is.

      And he is right, if somewhat simplified! We can't eat gluten. When you see some of the truly horrible things out there (I work in the healthcare field), we are so lucky. We simply stick to a diet that excludes gluten, and sometims other things, and that's it. We don't have to take multiple medications, we don't have to have surgery, we don't need to give ourselves injections several times a day like my dad did for almost 60 years (Class 1 diabetes). We don't have cancer, like the 26 year old sister of one of my co-workers who was just diagnosed with Stage 3 ovarian cancer. We aren't paralyzed. We don't have a disease that continually progresses like Parkinson's or Alzeimers. We aren't limited in our mobility.

      We are just so lucky. I think for some the glass is always half empty...
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    2. tallfran added a post in a topic 3 Year Old Son, Family History Of celiac disease - Question....   

      That IgA is very low. According to the numbers on the blood work I had, normal is 68-378.

      That doesn't mean he has celiac. It also doesn't mean he doesn't. He apparently has what is know as Selective IgA Deficiency, seen in about 3 percent of celiacs, according to Dr. Green. You won't really know about the celiac until you get his IgG-TTA levels back.

      This is what Dr. Green says about Selective IgA Deficiency: "There is a genetically determined condition called selective IgA deficiency that occurs in about 0.2 percent of the population and in about 3 percent of patients with celiac cisease. These people do not make IgA antibodies, whether or not they have celiac disease. Since most of the highly specific and sensitive blood tests for celiac disease measure IgA, the tests are measuring a class of antibody that some people cannot ever make. Therefore, if a patients total IgA is 0 or extremely low, running an IgG tissue transglutaminase antibody is recommended in order to determine of IgG celiac antibodies are present. These tests are important if you are IgA deficient since you may not otherwise be diagnosed."

      Hopefullly these labs were also done when they drew the blood for the IgA. Nobody likes getting stuck, especially if you are only three years old...

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    3. tallfran added a post in a topic Where Do You Buy Xanthan Gum And What Is It?   

      I found it at my local Kroger's...

      They have a big section of gluten-free stuff.
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    4. tallfran added a post in a topic Newly Diagnosed & Frustrated With Conflicting Information   

      Good for you for trying, Krickett! Most folks think (and I agree) that the distillation process removes any gluten that might be present. I think that vodka is fine; I might use caution with some of the whiskeys. I'm mostly a wine drinker myself!
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    5. tallfran added a post in a topic My Horror Story   

      Really consider the pain meds. Even without gluten, most pain meds (narcotic) make me very sick.

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    6. tallfran added a post in a topic How Tall Are You?   

      I'm another tall one. I stand 5' 11 1/2 inches. I really like being tall, but finding slacks that fit and shoes. God help us, SHOES . I wear a 12 on a good day, and my hiking boots and running shoes are 13's. And my foot is so narrow I can't just switch to men's shoes. Forget about dress shoes...

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    7. tallfran added a post in a topic Gluten Free Sometimes Makes Me Feel Even Worse   

      You might be allergic to sesame. I was reading a book on food allergies the other day, and it was one of the more common allergies.

      Good luck.

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    8. tallfran added a post in a topic New Book At B & N   

      Sorry, it's "How Doctors Think" by Jerome Groopman, MD . I put it in as a subtitle, but maybe it didn't show up on your computer.

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    9. tallfran added a topic in Celiac Disease - Publications & Publicity   

      New Book At B & N
      I saw this book at B & N this evening, picked it up, and read as much as possible in the slightly less than 3 hours I was there.

      I know there is a lot of bitterness on this board about failures in diagnosis, being told "it's all in your head, etc.

      The introduction chapter features a woman with Celiac Disease, who was misdiagnosed for many years. There are many other examples in the chapters I managed to read while I was there (not of Celiac Disease, but of other misdiagnoses, and how they happen. It is an excellent and interesting read; I recommend it highly, though I don't plan on buying it. Maybe your local library will have a copy soon. I'll finish it the next time I'm at B&N (one of my favorite places!)

      • 5 replies
    10. tallfran added a post in a topic Frozen Food Suggestions   

      I eat frozen meals at work all the time. I like Amy's, and some of the South Beach diet ones are gluten-free too. They aren't frozen, but some of the packaged Hormel meals are also gluten-free, like the beef stew. It isn't too bad...

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    11. tallfran added a post in a topic Living Without   

    12. tallfran added a topic in Celiac Disease - Related Disorders & Research   

      Peripheral Neuropathy
      I have had peripheral neuropathy for about ten years now. I'm female, 61, not diabetic, not officially celiac yet; still waiting to see the GI doc, so am not gluten-free yet.

      My neuropathy is burning and tingling in my legs and feet, and tingling and loss of some sensation in my upper extremities. The docter put me on Cymbalta for the neuropathy, and at first it was wonderful. I could hardly walk because of the pain in my feet.

      However, I don't like the Cymbalta side-effects. Have you taken anything else that helped? I know there are several newer meds for PN out there now. My current GP just recently started me on Requip for Restless Leg Syndrome, and the lower doses help the restless leg stuff, but does nothing for the burning and tingling.

      I hope that it will improve when I go gluten-free, but from what I read, at my age and length of time of symptoms, any improvement will be very slow and minor.


      • 9 replies
    13. tallfran added a post in a topic Living Without   

      Thanks everyone for their replies. I will see if I can find a copy. (I looked at the website and there is not a distributor where I live).

      I agree that it is possible to have a full and satisfying life after being diagnosed with Celiac. It would just be so much better to have it entitled "Living Free" or some such. Without has dreadful connotations for me, without hope, without joy, without money, without time. The only possible without combination I can think of is without debt. That'll be the day!

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    14. tallfran added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Blood Test Results Back
      I got my results back this afternoon from my doc. They are:

      IGA: 242 (range 68-378)
      ttG IGA: 0.5 (negative <7)
      Iron: 100 (range 40-165)
      Ferritin: 43.2 (range 11-306.8)
      Vit B12: 712 (range 180-914)
      Folate: 5.7 (normal >5.2)

      Everything there is normal. I think the ferritin is a little low since I am close to the bottom of a very wide range, but otherwise... I will still be seeing the GI doc, but I don't know if he will want to do the endoscopy with normal blood results.

      Right now I don't really know what to do. Although I really don't necessarily want to be Celiac, it would be a lot better than not knowing what is wrong and feeling awful all the time.

      My symptoms tend to be more neurological than digestive: extreme exhaustion, peripheral neuropathy, dizziness, ataxia, bad brain fog.

      It is important to me to be officially diagnosed because otherwise my sister (my only surviving close relative) will just roll her eyes and poo-poo me like she had done the last 60 years, more or less

      Anybody with any ideas?


      • 2 replies
    15. tallfran added a topic in Celiac Disease - Publications & Publicity   

      Living Without
      I've read about this newsletter or magazine. Does anyone here subscribe, and if so, what do you think of it? I am having a very hard time getting past the incredibly negative title...

      • 9 replies

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