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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.

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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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    • Hey guys!  I have been suffering from NCGS for almost a year, and have recently been diagnosed with IBS.  Although I was finally getting used to the gluten free routine, this has been really hard to get used to.  I'm currently having a major flare, so I'm off pretty much all fodmaps (although mainly beans, dairy, nuts, and gluten). Additionally, my stomach can't handle more than a 1/2 cup portion per meal, and even then, I'll occasionally have pain after eating.  Does anybody have simple, fast meals that they could share? As if this isn't restrictive enough, I'm also allergic to eggs, so I'm pretty much living off smoothies, rice, and allergy free chicken sandwiches.  I know this is pretty restrictive, but I thought that if anybody could help, it would be you guys.  Thanks!  Claire 
    • Great advice everyone! So the envirokids gorillla munch by natures path is safe?. As for cinnamon Chex is that ok too? 
    • Alright, so I'm 3 months into being gluten free, And in terms of how I feel, the "best fit" line on the graph would be a very slow incline, which is good, but day to day, I would mark as all over the place. I don't understand. I pretty much do the same things every day, and eat the same things every day at around the same times, even in the same order. I cook all my own food and am super careful about CC. I even have my own pans, cutting boards, even my own sponge for washing my own aforementioned kitchen supplies. What I eat is very limited. I don't even do dairy, grains, or added sugar. (for now) Yesterday I actually felt okay. The brain fog was fairly thin, I felt more based in reality, rather than like I was in the matrix, on drugs, or in a dream. Today I'm back in the matrix again. I can't think, I have anxiety, I'm overly emotional, short fused, angry, and scared of my own shadow. This up and down for no apparent reason stuff seems to be the norm for me. Is this unheard of or somewhat common? It seems like how I feel is completely out of my control, and the disease just does whatever it wants. I know 3 months isn't that long in the usual recovery time frame, but I want to get off this ride. I just need to know if it's normal to be so up and down day to day during the recovery, or if I should give in to my assumed unfounded panic attacks and be worried. As a side note, I'd much rather have the typical gastro issues usually associated with celiac. Blowing chunks and crapping my pants constantly would be way easier for me to deal with than all the neurological problems mine manifested as. Ugh.
    • Ha, Ha!!!!!!  If I wouldn't get in trouble for practicing without a license, I would!     I get it because that is what they did to me for years.  I never had acid reflux but had enough other symptoms that all screamed Celiac but no.........they told me that my severe stomach pain might be acid reflux so take this script and go away. They never even tried to figure it out past the 10 minutes allowed for the appointment. I'll never forget one doctor that I pushed back on and told her I was not there for meds but to find out what was actually wrong and she got so mad she left the room and never came back. All they kept doing was trying to shove pills down my throat.   I am guessing that the procedure is the one where they tighten the sphincter muscle at the entrance to your stomach? I know so many people who had that done because it's become so common to push that if the meds aren't working well. Follow the money........ If acid reflux becomes that bad, then you have to start looking at food, period.
    • Here's a link that discusses Mast Cell Activation Syndrome (histamine intolerance) and recommended tests.  http://www.thepatientceliac.com/tag/mast-cell-activation-syndrome/ This article explains how POTS is related to MCAS. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3545645/#!po=35.0000 "In another clinical situation, Shibao et al. and colleagues studied a small cohort of patients who had evidence of mast cell activation as evidenced by elevated urine levels of N-methylhistamine after flushing episodes and who had orthostatic intolerance (69). Detailed studies revealed a profound hyperadrenergic response to standing characterized by tachycardia and hypertension consistent with postural orthostatic tachycardia syndrome, or POTS. This phenomenon is felt to be due the release of vasoactive mediators such as histamine that act locally on sympathetic nerves; autonomic function was assessed to be normal in these patients. The authors have used methyldopa, an alpha-adrenergic agonist, with some success in these patients along with standard medications to block mast cell mediators. They caution against the use of beta-blockers, which may exacerbate mast cell activation."   Vitamin and mineral deficiencies often occur with Celiac Disease.  Celiac Disease causes malabsorption which results in malnutrition.  It's important to correct nutritional deficiencies after a Celiac Crisis like you endured with your gluten challenge.   Vitamin D is so important!  Vitamin D tells the mast cells to turn off histamine production.   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4154631/ Vitamins C and E and B6 help, too. https://www.ncbi.nlm.nih.gov/pubmed/21244748 The eight B vitamins are water soluble and need to be replenished every day.  Not enough B vitamins can make one grouchy (or seemingly an alien).  Just watch "Naked and Afraid" on Discovery channel.  The contestants who don't get protein (chock full of B vitamins) get grouchy, depressed, and irritable.  Some contestants have to be removed because their personality changes to the point they become dangerous.  This is a drastic example of vitamin deficiencies that develop over a short period of time, three weeks.  Now imagine having a subclinical deficiency over a long period and a slower health disintegration.   I lost my faith in doctors when my deficiency diseases were not recognized and addressed.  So, I used my food journal and the low histamine diet guidelines to get my inflammation down and my vitamins and minerals up.  Hope this helps.      
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