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- Dora77 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease0Permanent Floating & Undigested Stools for a Year
For some context: I have type 1 diabetes (T1D) (since 11 years) and celiac disease(since 4 years) For about a year now, I’ve been experiencing permanent floating and undigested stools. I’ve had a pancreas elastase test done. The first result was extremely low at 44, but a second test came back at 236. My doctor said that since one result is normal, it... -
- TerryinCO posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms0Status Update...
The Docs' and NP haven't committed to Celiac determination yet but say go gluten-free diet because... And I have with improved physical results - feeling better; overall functions better, and more energy. Still 10 pounds down in weight but I still have BMI of ~23. It's been just over a month now gluten-free diet. I'm fortunate I get along with diary/milk... -
- cristiana replied to Tyoung's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease7Increasing symptoms after going gluten free
I did suffer with gastric symptoms before diagnosis, but got all sorts of weird and wacky symptoms after going gluten free. Things got much better once my antibodies fell to normal levels, but it took years (please don't panic, many people's go to normal levels relatively quickly when following a gluten-free diet). Causes of the symptoms you mention... -
- Jy11 replied to Jy11's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms14Conflicting results
Well the conflicting results continue as the biopsy has come back negative. 😵💫 Waiting to discuss further but I really don’t know what to think now? Eight biopsy’s were taken from duodenum which surely should be sufficient if it was coeliac? -
- Pasballard replied to Tyoung's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease7Increasing symptoms after going gluten free
I have Celiacs and want you to be aware of the amount of weight you can potentially put on if you rely on gluten free snacks, bread etc.,they are high in carbs. I put on 25 lbs in a short amount of time. Whole Foods are the best way to go but I struggle with this. The cost of gluten free is also a problem. I love black licorice but most have gluten....
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For some context: I have type 1 diabetes (T1D) (since 11 years) and celiac disease(since 4 years) For about a year now, I’ve been experiencing permanent floating and undigested stools. I’ve had a pancreas elastase test done. The first result was extremely low at 44, but a second test came back at 236. My doctor said that since one result is normal, it rules out pancreatic insufficiency because, according to them, elastase levels would always stay low if that were the issue. However, could the 236 have been a false result? My doctor also thinks I don’t have pancreatic insufficiency because I’m able to gain weight. I also get hgh injections as my bone age is younger than my real age, this also contributes to weight gain, so I dont know if weight gain can rule out malabsorption. But maybe if I had real malabsorption I wouldnt gain any weight even with hgh? For celiac, I’m on a gluten-free diet, but there might b small cross-contamination from things like pepper labeled as “may contain gluten.” or sausages which dont have gluten ingredient but say may contain. My doctor said that small amounts like this wouldn’t harm me and even mentioned that an occasional small exposure to gluten may not do much damage (which seems questionable since I thought even tiny amounts could be harmful). She also said that when Im older (Im m17) I could try eating small amounts of gluten and do antibody blood tests to see if I can tolerate small amounts or not. For reference, I’m asymptomatic when it comes to celiac, so I have no idea if I’ve been “glutened” or not. My first concerning celiac blood test was semi high IgA, then 3 months later we did a check up and my IgA was high so it was confirmed celiac. Since than I’ve had celiac antibody tests done yearly to see how my diet is going, and they’ve been negative, but I’ve heard those aren’t always reliable. I’ve never had a follow-up endoscopy to confirm healing. I also always kept eating „may contain gluten“ food. (I live in Germany so I dont know if „may contain gluten“ is as risky as in the usa but I suppose both are as risky) These stool issues started around the same time I was doing excessive heavy lifting at the gym. Could stress or lifting have triggered this, or is that less likely since the symptoms persist even after I stopped lifting? Occasionally, I’ll feel very mild stomach discomfort, but it’s rare and not severe. My doctor (also a dietist) said floating, undigested stools could still be “normal,” but that doesn’t seem realistic to me. Could this be impacting my vitamin or protein absorption? I also did a fructose intolerance breath test and had a high baseline of 20 ppm, but it never increased—only decreased over time. I fasted for 12 hours and didn’t eat fructose beforehand, but my stomach didn’t feel completely empty during the test. Could this mean the test was inaccurate? For lactose intolerance, I did the breath test but only fasted 10 hours and had eaten lactose prior because I wasn’t aware of the proper diet restrictions. My results were: 14, 12, 15, 25, 35, 40, 40 ppm—which would be considered positive. But given that I didn’t fast long enough or follow the right diet, could this result be unreliable? Has anyone else dealt with similar symptoms? What ended up being the cause for you? And sorry for the long text! -
The Docs' and NP haven't committed to Celiac determination yet but say go gluten-free diet because... And I have with improved physical results - feeling better; overall functions better, and more energy. Still 10 pounds down in weight but I still have BMI of ~23. It's been just over a month now gluten-free diet. I'm fortunate I get along with diary/milk well and most other foods. I wanted ask about this site's sponsor, gliadin X. If this is legit, seems like a good product to keep on hand. Though it says it's only a safety for incidental gluten contact - not a substitue for gluten-free diet. What's your input on this? This may be sensitive subject since they're a sponsor. I've used resources here and other sites for information, gluten-free food/product lists. So thank you for all that support. That's it for now - Stay warm... -2F this morning in Colorado!
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I did suffer with gastric symptoms before diagnosis, but got all sorts of weird and wacky symptoms after going gluten free. Things got much better once my antibodies fell to normal levels, but it took years (please don't panic, many people's go to normal levels relatively quickly when following a gluten-free diet). Causes of the symptoms you mention that I also experienced were iron supplements, a temporary dairy intolerance (this is common in coeliacs and should pass when your gut heals properly), and eating oats, as mentioned above. Other symptoms I got were musculoskeletal pain after diagnosis, but again, once my coeliac blood tests were normal, I had no more pain. I did notice patterns emerging in foods that I reacted to and learned to steer clear of them, then gradually reintroduced them when my gut healed, such as soya, pure oats and dairy products. You might like to keep a food diary. Cristiana
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Well the conflicting results continue as the biopsy has come back negative. 😵💫 Waiting to discuss further but I really don’t know what to think now? Eight biopsy’s were taken from duodenum which surely should be sufficient if it was coeliac?
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By Pasballard · Posted
I have Celiacs and want you to be aware of the amount of weight you can potentially put on if you rely on gluten free snacks, bread etc.,they are high in carbs. I put on 25 lbs in a short amount of time. Whole Foods are the best way to go but I struggle with this. The cost of gluten free is also a problem. I love black licorice but most have gluten. My favorite chili seasoning as well. The list is endless. I take Advil liquid gels and had no idea until I read this. I hope you do better than I have done. I feel I am destined to suffer daily no matter what. My aunt didn’t take care of herself and died from complications. I hope you can get on a good routine.
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