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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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    • I already did. Thats how i found the place. Its amazing to actually go to a restraunt again.
    • This is EXACTLY what happens to me. It has twice now and both times was after both glutening episodes but once it was the day after and the other time it was a week and a half. So I'm still not sure if it's related or strange bug bites...

      Did they stop happening when she stopped being glutened? Did you decide they were definitely related? I'm really confused by this and would love to know whether to insecticide my house or....
    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
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