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Cd Doc In Kc, Mo


clanning

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clanning Rookie

I'm new to this forum. I have a GI doctor that I've fired several times. MY celiac disease is so out of control. My biopsy's were terrible (complete/total Villa atrophy), my lab's were all critical IGG (?#) IGA >150, Iron levels, sever anemia, WBC 3, low every thing.

I 2 wks ago I had to have my gallbladder remove due to severe chronic cholycystitis. Not helling well from it. Can not absorb the CO2 from the surgery. Dr's all say it's from my celiac disease being out of control.

I've since tried staying gluten-free but it's very hard. Getting recipe's now etc..

My GI doc tells me that I'm not going to be around in 3 yrs. if I do not straighten up. Does anyone know if that is true?

It has taken over my intestines. I'm ALWAYS constipated taking laxitives like candy (prescripted & OTC). I take several meds Nexium, Zelnorm, Lactulose, Mirlax and I'm still severly constipated.

I have weak spells & have recently passed out at work. (Thank God I work at a hospital) Migrains and a lot of the time the crabbiest person on earth.

I would like to find a DR. would listens to me!! Yes, I know I have to stay on the diet first.

I've read that a lot of people on this take other things, why is that and how does it help?

Charlotte


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    • julie falco
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    • Jmartes71
      Current careteam is still up in the air about my celiac thanks to me googling "celiac specialist" what popped  up was once known as a good name hospital back in the days. I went in for answers for my declining health, it was the autoimmune part that did me in, being a former bus driver.I read that in my medical records so easily downplayed, i refused the gluten challenge! Why the hell would I eat Gluten when im Celiac coming to them for answers when my body is falling apart? Glutenfree since 1994. They did unnecessary colonoscopy KNOWING im glutenfree. A celiac specialist would know that would be pointless to do if not eating gluten and it was done!Im so angery with that hospital for not explaining celiac disease and withholding information, Downplaying my ailments , mental distress,  causing more health issues, ect. All this could have been avoided If medical records were sent, when asked, explained and done properly. Im so angery.I do have the celiac dietitian on here in June and linked her up to my current health care yesterday, fingers crossed hopefully with that, the understanding of celiac is explained it's not just a food allergy will be understood. 
    • Scott Adams
    • Scott Adams
      Thank you for sharing your experience, Florence. It’s important to clarify, though, that proteins like zein in corn, panicin in millet, and kafirin in sorghum are not considered gluten and have not been shown to trigger the same autoimmune intestinal damage seen in celiac disease. Some people with celiac disease do report symptoms with certain gluten-free grains, oats, or other foods, but that reflects individual intolerance or sensitivity—not a proven “gluten-mimic” effect that damages the small intestine. Certified gluten-free oats are considered safe for most people with celiac disease, though a small subset may react to avenin. If specific foods consistently cause symptoms for you, it makes sense to avoid them personally, but it’s helpful for readers to know that these foods are still medically classified as gluten-free and generally safe for the broader celiac community.
    • Scott Adams
      It’s true that awareness of celiac disease can vary among physicians, particularly outside of gastroenterology, and many patients end up educating their own providers. Reaching out to someone you trusted for 25 years makes sense if you felt heard and supported. That said, celiac disease management often benefits from a team approach, including a knowledgeable primary care provider and, when needed, a gastroenterologist or dietitian familiar with gluten-related disorders. Advocating for yourself is not unreasonable—it’s part of managing a chronic condition. If your current provider relationship isn’t working, it’s appropriate to seek care where you feel respected and properly supported.
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