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Rhobhan

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by Rhobhan

  1. Rhobhan
    I am in the eighth week of an extended reaction to gluten exposure—extreme weight loss due to diarrhea, drop in blood pressure causing dizziness. The gastroenterologist ordered an endoscopy which showed, naturally, active celiac disease but also evidence of gastritis. He has put me on a daily dose of Pantroprazole to treat what he says was excess stomach a...
  2. Rhobhan
    I live in the Midwest where there seems to be a dearth of knowledge about celiac disease. Perhaps you live in a large city where medical staff are more educated about celiac. i have been glutened countless times over the years by restaurants who claimed to have taken steps that proper cooking procedures were taken. In the bowels of a large hospital kitchen...
  3. Rhobhan
    I am facing a potential surgery which may require several days recovery in the hospital. I am more terrified of being glutened by hospital food than of the surgery itself! I know I should ask to consult with the chief hospital dietitian, but I see cross contamination as the major problem. Has anyone else had any experience in the hospital, and what...
  4. Rhobhan
    I’m in my sixth week of an accidental glutening, with no let up in sight. I’ve lost about a 1/2 pound per day due to the chronic diarrhea, and in addition, I have no appetite and nearly all foods are unappealing and unappetizing. Bone broth is soothing, I have found, however. The gastroenterologist has me on an anti-nausea drug which helps a b...
  5. Rhobhan
    My wife confessed that I have a smell after being glutened. I am batting six weeks’ worth of bad fallout after being glutened: diarrhea, nausea, weight loss etc. i shower daily and practice good hygiene, but she says I have this smell—a “bathroom odor.” I’m humiliated to say the least and don’t know what to do. Anyone else have this proble...
  6. Rhobhan
    Although I have been to three different gastroenterologists within a 100 mile area in my 13 year struggle with celiac disease, I have found none of them to be what I would consider an expert in the disease, but rather following the same playbook: ordering the same rounds of debilitating tests, referrals to dieticians etc. No one seems to offer much...
  7. Rhobhan
    I have taken Floragen 3 (now called Floragen Digestion) for 5 years with no problems. It is refrigerated, available as a capsule, and only availabel at pharmacies.
  8. Rhobhan
    Thanks to the above who responded to my post.
  9. Rhobhan
    I was diagnosed with celiac in 2007. For eight years I did well, gaining back weight and feeling decent. I spent from spring of 2015 until December of that year suffering from perhaps a multiple gluten in that had occurred while traveling. I experienced chronic diarrhea, fatigue and my weight dropped to a point lower than when I was first diagnosed...
  10. Rhobhan
    I am not getting any gluten, as I am obsessive about checking EVERYTHING that goes into my mouth and on my skin. gluten-free oats are not a problem. On the occasion I have them they cause no problem. And my wife doesn't kiss me when she's eating! All meds and supplements are checked out as well. My dog eats a food that does not contain wheat. Thanks for your...
  11. Rhobhan
    I do not recall what the actual level was, other than his remark that it was extremely low. I take the 220mg dose with food and haven't noticed any additional stomach upset. After four doses, my diarrhea is slowly decreasing and I have actually had a couple of good days. Have you tried taking it with a full meal. I'm sure it may decrease the absorption, but...
  12. Rhobhan
    Yes, a celiac antibodies test was run, and the results were negative. That means I have not been exposed to gluten recently. Recall that I was diagnosed 8 years ago with the antibodies test, colonoscopy and EGT.
  13. Rhobhan
    I have had a resurgence of symptoms since being diagnosed 8 years ago. I am losing weight, and I have daily diarrhea, fatigue, and slight nausea at times. A gastroenterologist I saw last year at this time did a CT enterography, an enduoscopy and pill camera, and was satisfied I had no signs of lymphoma. His prescription was a daily dose of prednisone and...
  14. Rhobhan
    While there may be "no test that can say 0," the fact and question remains: there is and why is there gluten in foods and supplements that are supposed to be gluten free? How is it getting there? Cross-contamination from processing facilities that also run wheat products in their facility? Carelessness? The attitude that 10-20ppm is good enough? I too...
  15. Rhobhan
    I am dumping ALL my supplements, including the probiotic. I had been using Country Life supplements due to the fact they claim to be not only gluten free, but "certified gluten free" on some of their supplements. I called them today, and asked about the gluten free claims. After proclaiming they were a "completely gluten free facility," she read me...
  16. Rhobhan
    Perhaps not. A month ago I started experiencing the worst gluten reaction I have had since being diagnosed in 2007. A visit to the gastroenterologist revealed a "high" reaction on the celiac blood panel. I had been glutened, and the possible suspect was a frozen pre-basted turkey my family had eaten, and I had had several helpings of leftovers. After...
  17. Rhobhan
    I think the biggest mine field is when we travel and have to eat in restaurants. Even though I rigorously question waitstaff, use gluten-free dining cards, and FindMe Gluten Free app on my phone, I think the danger is high of being glutened by ignorant chefs, waitstaff and cross-contamination in the kitchen. My EGT last month was the first since my initial...
  18. Rhobhan
    Thank you all for taking time to post your thoughtful comments. I take Caltrate (company website and other literature says it is gluten free), fish oil and glucosamine sulfate made by Spring Valley (labelled gluten free), magnesium, Cholestoff, and a B12 complex by Nature Made, also labelled gluten free. I am not experiencing any symptoms, but I sure...
  19. Rhobhan
    I will try to be brief. I was diagnosed with celiac disease 7 years ago, and have followed a strict gluten-free diet since then, except when I was accidentally glutened—but that has happened less than five times. Last spring I slowly started losing weight, and I am a lightweight guy, and I seemed to have upset stomach and bouts of diarrhea. I made an a...
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