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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.

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Sorry to bring the subject up again about beta blockers but I do want to make a definite point. Everyone, especially us celiacs, should take a HUGE role, as much as humanly possible, in our health care. Many of you have learned, as I have, that we can not completely trust our doctors (they are only human, afterall) and that we SHOULD question their advice and do our own research and at times, yes, even refuse to take the medication they have prescribed (or just given to us for free as samples to try). I know now that I will NEVER take beta blockers because, as I stated earlier, I had already heard negative things about them years ago, and now from Barbara and you, Kevin. Just to ease your mind, Kevin, I will explain that I am already taking medication to lower my blood pressure (the reason I was given the beta blockers) but am experiencing a negative side affect so when I called my doctor she said she had some samples of a beta blocker if I wanted to try them. I did go by and pick them up but had that nagging negative feeling about trying them. Reading those posts did help in making my decision but WAS NOT the sole reason! We celiacs are a pretty experienced and savvy group just because of our variety of medical problems. I would NEVER jeopardize my health by suddenly stopping a medication based on info I read in a post, even by someone who sounds as intelligent as you, Kevin. A lot of good info is coming out of this thread and I hope it continues.

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red345:I have just read an interesting book from the library that may have some bearing on the research you are doing. It is called "Sugars That Heal, The New

healing Science of Glyconutrients" by Emil I. Mondoa, M.D. and Mindy Kitei. It is published in paperback by Ballantine Books. Copyright is 2001. The book listes 8 essential saccharides and the role of each in maintaining health. Chapter 9 is "Addressing Chronic Fatigue Syndrome, Fibromyalgia, and Gulf War Syndrome." There is a comprehensive list of the sources he consulted for each chapter. Also there is a list of resources for the glyconutrients listed in the book. Phone numbers, addresses, and email addresses are included. The essential saccharides according to this book are: Mannose, Fucose, Galactose, Glucose, N-acetylglucosamine, N-acetylgalactosamine, N-acetylneuraminic Acid, Xylose. Food sources of each are listed. Part II: Strengthen Your Immune System, Intro., Common Cold and other Viruses; Treating Bacterial , Fungal, and Parasitic Infections; Alleviating Allergies, Asthma, and Other Pulmonary Diseases, Skin disorders; Arthritis, Diabetes, Other Chronic Illnesses, Inhibiting Cancer, Hepatitis, HIV and Opportunistic Infections, The last part deals with age-related subjects. The author does not put this information forward as a cure-all, but just as a possible approach to these problems. Perhaps you are already aware of this book. If so, ignore. Cheers, Ruth

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1) I am not really sure when I became gluten sensitive. But, I have had stomach problems for as long as I can remember. I was once diagnosed with depression. Although, that was in my early teenage years. I have Tourette's Syndrome. I have had persistent respiratory problems though. I got pneumonia at the age of 9. I had strep throat last year REALLY bad. I had bronchitis earlier this year (See #15).

2) I have dabbled in several vitamins, but suspected they made me sick (they are gluten-free though). I take Zyrtec every day. In the past I have taken Paxil, Luvox, Celexa, Ovcon, and Ortho Tricyclen Lo. Those were the only medications I ever took for a good amount of time. I have always used Ibuprofen to relieve menstrual cramps, but have recently suspected it may make me sick. I have taken several antibiotic series though. And.. anti-inflammatory steroids? Is that what they are? I took something when I had strep throat.. which didn't work and had to go in and get the shot in my bum. :) I was actually prescribed painkillers for this case of strep throat. I had prescriptions too when I had my wisdom teeth cut out 3 or 4 years ago.

3) I had a flu shot maybe a year ago. I know it was the first one I'd had in awhile. I also had both series of immunizations for Hepatitis A and B.

4) Well, I first went to my GI in August of last year. But, decided to hold off on his suggestions. I went back in April. During that period was my first year in college.

5) No

6) I usually find I have more severe symptoms during my period. In fact, I went to the gynecologist first to make sure everything was alright before I pursued anything with the GI.

7) No

8) Liver is A-Okay.

9) No

10) No. The test results really speak for themselves.

11) Probably so. I live in Oklahoma. There's wheat all over the place.

12) I've self-diagnosed myself as casein intolerant.

13) No

14) No

15) I'm pretty sure I was exposed to ammonia earlier this year. I was working with some old ammonia-coated drawings for my mom's work. I developed severe respiratory problems. I pretty much had bronchitis for several months. Needless to say, I quit working there. I used an inhaler from January through April. I was diagnosed in June.

16) No

17) No, but my mom has developed sudden autoimmune diseases. She developed a severe anaphalactic (sp?) reaction to NSAI and it almost killed her. It started with a reaction to Valium and ended up getting to the point where she couldn't take even Aleve. She also had antibodies attack her hair follicles. These things have all occurred within the last 4-5 years.

18) No

19) My gums do bleed sometimes when I brush my teeth.

20) No

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Red345: Have run into some more interesting information involving fibromyalgia patients. A Mark Sprague on www.ibsgroup.org ( if this doesn't work try groups) recommends a probiotic from a company called Lame Advertisement called Provex. His email is msprague200@yahoo.ca. He used this for high cholesterol , but it cured his ibs as well and in his letter he talks about fibromyalgia, also. Cheers! Ruth S.

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    • Gaerty,  thank you for sharing this with me! You want to know something crazy? The night before you sent this I was googling "vitamin deficiencies linked to splinter hemorrhages" and an article came up about vitamin C deficiency. I can't remember the last time I took vitamin C or drank orange juice or consumed anything that has vitamin C on a regular basis. It's crazy that you responded to this post when you did. My splinter hemorrhage is razor thin and looks like it could be shrinking but it's hard to tell. Also it's not growing out of the nail bed. It stated more in the middle of my right thumb nail. I don't take a multivitamin mainly because I can't find one that doesn't trigger my anxiety. Trying to find a good one that doesn't have energy boosters in it like green tea and extra B vitamins (all my B vitamin levels are great). I haven't been tested for low C vitamin levels but I might have to now. I was tested for some of the base ones that most celiacs have issues with, folate, magnesium, B's, E's, and a couple others and all of them came back good with the exception of my vitamin D3 which in November 2016 was 16 and we tested it again in February, it moved up to 26. Still low but moving up. My liver numbers in October 2016 were bad but by February 2017 they were perfect. I had skin rashes, most of those have cleared up over the past 5 to 6 months, by about 85%, since I was diagnosed. This splinter hemorrhage came up about 7 to 8 weeks ago. Like I said it appears to be growing out but I'm still going to get it looked at.  Let me know what your doc says about the vitamin C levels. Also what multivitamin do you take?  Ps: I bought some clementines yesterday.  Thanks for responding!  Spencer 
    • Maybe try a rice based milk, I find the coconut flavoured ones really good with cereal.  
    • I guess they've never felt the political pressure the mainstream cereal producers were under in the age of rickets and pellagra? Plus there's not such a competitive market and its a cost manufacturers would sooner do without if they can, although if Udi's or Genius did start perhaps they'd get more business. I think I'll start eating flax seed again, that was good for fibre I think. I take a vitamin supplement also of course. 
    • Good for you! One suggestion, if you run into another reaction like your Endo, try and ask a question which puts the burden of proof on them, ie: 'Given the positive blood test, on what clinical basis are you excluding celiac?' At least it forces them to be more precise and perhaps exposes any flaws in their reasoning. Although if you reach that stage with a doctor it's probably worth looking for another... If I were a cynic I'd say your Endo had already metaphorically left the building when they were analysing your tests.Your primary seems more on the ball though Best of luck! If and when you go gluten free come back here and there will be plenty of support for you.
    • Great Image JMG.   Thanks for the feedback. I think I feel that the decision to push for further tests, and not shrug it off is the direction I want to go. And I think I may try the diet post-endoscopy, and see if I respond (particularly if my thyroid responds to the diet).  Thank you All!
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