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red345

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red345 Apprentice

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enigma Newbie

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.

strack2004 Rookie

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

cynicaltomorrow Contributor

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

red345 Apprentice

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strack2004 Rookie

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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    • SamAlvi
      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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