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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 ( if this doesn't work try groups) recommends a probiotic from a company called Lame Advertisement called Provex. His email is 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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    • It really can be anywhere or any random source, Few tips, as mentioned eat whole foods only nothing processed, Use Freezer paper on your prep surfaces to fix your foods, perhaps gloves in case your touching something else (door to fridge, pantry, computer keyboard, etc) that might have trace gluten residue. Have dedicated gluten-free cooking utensils, pots, and pans. Check your soaps, shampoos, make up and other hygiene products, these might also contain gluten that could be cross contaminating.  I personally had this exact issue and broke down sold everything I had and started new in a new apartment, new appliances, new everything since I was getting sick at least twice a week and could not hold a job. I will link you to the list of gluten ingredients to look out for. Hopefully you can find the cause and not have to go as radical as I did to get relief. It might be something as simple as a spice, or a random product in you house.
    • Thanks for your replies...!  Thanks for all the tips, I am indeed on a caveman diet and trying to figure out what works best. I had rice on Friday and unfortunately did get a reaction (bloating/nervousness), which for now makes carbs a thing of the past. I do indeed do very well on protein and am becoming picky about the ingredients in foods as well. For example I had asparagus the other day but they were packed in citric acid. Little did I know citric acid had sugar. Suffered a severe reaction. All-natural indeed is the only way to go when it comes to curing this thing..  Well, it's a valuable lesson. I never drank enough during my childhood but I'm trying to drink at least a bottle nowadays. It probably contributed to my gut issues.  I'll do my best and see how it goes.  Thanks again, Ken
    • I was in Zambia, Zimbabwe, Botswana & South Africa this summer, with very few problems.  I brought a ton of Kind bars, Justin's peanut butter packets and Costco beef jerky just in case!  I get the Kind Bars and Justin's on Amazon Prime.  Africans eat a lot of meat (try the Kudu, it's awesome!) and veggies.  Stay away from sauces.  I don't recommend eating the Mopane tree worms, even though they are gluten-free.  I tried to get out of it, but my tour leader said they were gluten-free and I had to try it as part of the experience....ewwwww!  lol  gluten-free is quite popular in South Africa...they call in the Banting diet.  Maybe they know it up north as well?  I would definitely stay away from chips because you have no idea what else has been in the same fryer oil.  One chicken nugget and you're toast.  I've never had a problem with rice.  Have a great trip...Africa is amazing!  
    • Hi Jan, Have you had any allergy testing? Could be you are allergic to something else. My daughter is Celiac and was still getting ill & feeling awful after going gluten-free. Found out through several blood tests that she is allergic to shrimp, wheat, yeast & sesame seeds. Many GlutenFree foods contain the things she is allergic too so her food choices just had to change. But she was recently diagnosed with EoE from her lastest endoscopy after being  sick with horrible acid.  Go have more testing with a GI doctor that is current with celiac disease and it's many different symptoms. Knowledge is a powerful weapon and you need to try and stay positive. You have many people who you can turn to and a big Celiac family that is always ready to listen & help where they can! Welcome to the forum 👍🏻
    • Hi Janst, It might help to simplify your diet.  Eliminate possibilities of gluten sneaking into your diet.  It's pretty easy to make mistakes with your diet when transitioning to gluten-free eating.  I suggest eating only whole foods for a 6 month period until you get used to things.  Cross contamination is another thing to look out for.  Shared peanut butter, butter, or other condiments can spread gluten in small amounts and make us sick.  Sometimes medicines or vitamins can have gluten, even teas and spices are possibilities.  Kissing a person who has eaten gluten recently can cause problems too. Keep trying because every time you make a mistake you learn something. You might want to try stopping all dairy for a while to see if that helps also. And welcome to the forum
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