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- PixieDixie replied to PixieDixie's topic in Dermatitis Herpetiformis3New Here…
Yeah, hard for me to not eat salmon though it does cause varying degrees of irritation to the rash. Alright, guess I’m gonna have to be careful with iodine. Thanks for the article. -
- Parkrunner replied to Cathijean90's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease10I’m terrified it’s too late for me😭
I probably had celiac for 40 years, late 20s to late 60s, before being diagnosed. I was a runner and had mild intestinal symptoms most of the time. There was a couple of months in my late 40s where I had significant diarrhea every day for 6 weeks. Saw two PCPs about it and celiac wasn't on their radar. In my 30s, 40s, 50s, and 60s I had insomnia, hot... -
- Kathleen Mostek replied to Pat B's topic in Gluten-Free Foods, Products, Shopping & Medications4FDA says that most drugs are gluten-free???
Scott, I used the AI app Perplexity. I did use your recommendation for research as well, however one med was not the color or shape, after being outsourced to India. I called Blue Cross, spoke to a pharmacist, he also did not have the correct description of the drug from India! 37 additives! -
- Scott Adams replied to Katya773's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease1Previous Biopsy Results
Your situation is incredibly frustrating and emotionally draining, especially with the conflicting biopsy results, unclear diagnosis, and the added stress of personal losses. Given your DQ2.5 homozygous status, family history of celiac, and past biopsy findings (damaged villi, ulcers, lymphangiectasia), the evidence strongly suggests celiac disease—despite t... -
- Scott Adams replied to FayeBr's topic in Related Issues & Disorders2
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By PixieDixie · Posted
Yeah, hard for me to not eat salmon though it does cause varying degrees of irritation to the rash. Alright, guess I’m gonna have to be careful with iodine. Thanks for the article. -
By Parkrunner · Posted
I probably had celiac for 40 years, late 20s to late 60s, before being diagnosed. I was a runner and had mild intestinal symptoms most of the time. There was a couple of months in my late 40s where I had significant diarrhea every day for 6 weeks. Saw two PCPs about it and celiac wasn't on their radar. In my 30s, 40s, 50s, and 60s I had insomnia, hot flashes, night sweats, muscle cramps, muscle twitching, and cardiac arrhythmia. It took osteoporosis and fractured vertebrae before I got diagnosed. Long term undiagnosed celiac will lead to osteoporosis. Once you go gluten-free, symptoms should away eventually. But you may have other food intolerances. I happen to be lactose intolerant also. I'm in my 70s now. In good health. Running again. Take no medications/drugs. Sleep much better. I digest more food than I used to, so I have to reduce my caloric intake. I seem to be hungry all the time. My cholesterol has gone up, as has my iron levels. I don't eat much junk or ultra processed food. My bone density in improving. Life is good!! -
By Kathleen Mostek · Posted
Scott, I used the AI app Perplexity. I did use your recommendation for research as well, however one med was not the color or shape, after being outsourced to India. I called Blue Cross, spoke to a pharmacist, he also did not have the correct description of the drug from India! 37 additives! -
By Scott Adams · Posted
Your situation is incredibly frustrating and emotionally draining, especially with the conflicting biopsy results, unclear diagnosis, and the added stress of personal losses. Given your DQ2.5 homozygous status, family history of celiac, and past biopsy findings (damaged villi, ulcers, lymphangiectasia), the evidence strongly suggests celiac disease—despite the initial doctor’s dismissal. The nurse practitioner’s call likely reflected the biopsy’s concerning details, even if not formally labeled "celiac." Your severe reactions to gluten, including weight loss, nausea, and bloating, further support this. The gluten challenge is notoriously difficult, especially for sensitive individuals, and your physical and emotional strain makes it even harder. Since accidental gluten already triggers symptoms, a formal challenge may not be necessary for clinical certainty—your genetic risk, family history, and prior biopsy abnormalities might suffice. If your new GI insists, consider whether a supervised, modified challenge (or even genetic + antibody testing without reintroduction) could provide answers without extreme suffering. Most importantly, prioritize your mental health—grief and stress exacerbate physical symptoms. A dietitian specializing in celiac or a therapist could help navigate the emotional toll. Trust your body’s signals; if gluten makes you ill, staying gluten-free is valid regardless of diagnostic ambiguity. -
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