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- mariamccl posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease0Help with results
Hi, 25f who recently had a endoscopy procedure to diagnose celiac disease. Mum and uncle are both diagnosed celiacs. I've had symptoms over the past year - headaches that have become debilitating and frequent, feeling faint and nauseous with high heart rate, diarrhea and constipation, anemia, and recently my periods have become almost non existent. My doctor... -
- herminia commented on Scott Adams's article in Chinese & Asian1Gluten-Free Ramen: A Comforting Bowl of Japanese Tradition
I enjoyed common plain ramen before I was diagnosed. It had not occurred that perhaps I could use the small flavoring packet with gluten-free noodles. Comments? -
- trents replied to Kj44's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms2Testing
Did your symptoms improve after going on a gluten-free diet? -
- Scott Adams replied to Kj44's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms2Testing
Thank you for sharing your genetic test results and background. Your results indicate you carry one half of the DQ2 heterodimer (DQA1*05), which is associated with a very low celiac disease risk (0.05%). While most celiac patients have either DQ2 or DQ8, these genes are also present in people without celiac disease, so the test alone doesn’t confirm a diagnosis. ... -
- Scott Adams replied to KRipple's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms8
Celiac or Addison's complications? Can someone share their experience?
@cvz Thank you for sharing your daughter’s story. It sounds like she is managing multiple complex conditions with great care and diligence. It’s encouraging to hear that she is compliant with her gluten-free diet and that her Addison’s disease symptoms are under control. The addition of electrolytes seems like a thoughtful suggestion, especially given her f...
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Hi, 25f who recently had a endoscopy procedure to diagnose celiac disease. Mum and uncle are both diagnosed celiacs. I've had symptoms over the past year - headaches that have become debilitating and frequent, feeling faint and nauseous with high heart rate, diarrhea and constipation, anemia, and recently my periods have become almost non existent. My doctor sent me a letter yesterday saying this " biopsies from the duodenum show some very mild features that could be in keeping with celiac disease but also could be due to other causes". I am waiting on an appointment to see him in the clinic to discuss this but in the meantime I wanted to check if anyone else has experienced this? I was eating plenty of gluten before my camera test and for the past 2 weeks have completely cut it out of my diet and I'm seeing changes in my bowel movements for the first time in my life! Headaches, dizziness etc are still there but maybe it takes longer for them to go away? Any help would be so appreciated - I feel so lost in this whole process!! -
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By Scott Adams · Posted
Thank you for sharing your genetic test results and background. Your results indicate you carry one half of the DQ2 heterodimer (DQA1*05), which is associated with a very low celiac disease risk (0.05%). While most celiac patients have either DQ2 or DQ8, these genes are also present in people without celiac disease, so the test alone doesn’t confirm a diagnosis. Since you’ve been gluten-free for 10 years, traditional diagnostic methods (like endoscopy or blood tests) would not be reliable now. If an official diagnosis is important to you, consider discussing a gluten challenge with your doctor, where you reintroduce gluten for a period before testing. Alternatively, you could focus on symptom management and dietary adherence, as your gluten-free diet seems to be helping. Consulting a gastroenterologist or celiac specialist could provide further clarity. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day: -
By Scott Adams · Posted
@cvz Thank you for sharing your daughter’s story. It sounds like she is managing multiple complex conditions with great care and diligence. It’s encouraging to hear that she is compliant with her gluten-free diet and that her Addison’s disease symptoms are under control. The addition of electrolytes seems like a thoughtful suggestion, especially given her fluid intake. It’s also reassuring that she hasn’t shown noticeable symptoms from accidental gluten exposure, though it’s understandable how challenging it can be to monitor for such incidents. The unexplained high lipase levels are intriguing—perhaps further investigation or consultation with a specialist could provide more clarity. Wishing you both continued strength and success in managing her health. Please keep us updated on her progress! -
Hello I received this in a genetic lab test I requested from my provider. The patient is positive for DQA1*05, one half of the DQ2 heterodimer. The celiac disease risk from the HLA DQA/DQB genotype is approximately 1:1842 (0.05%). This is less than the 1% risk in the general population. Allele interpretation for all loci based on IMGT/HLA database version 3.55 HLA Lab CLIA ID Number 34D0954530 Greater than 95% of celiac patients are positive for either DQ2 or DQ8 (Sollid and Thorsby, (1993) Gastroenterology 105:910-922). However these antigens may also be present in patients who do not have Celiac disease. Some background, I have been eating gluten free for about 10 years now. I have never had an official celiac diagnosis due to endoscopy and labs tested after I had already been eating gluten free for over 1 year. I was constantly sick and told you slowly remove foods and see what effects my symptoms. I have also come to realize that I have other symptoms of celiacs and recently requested the genetic testing shown above. I am looking to see if anyone has other recommendations for testing or just to clarify the results for me as I feel the official diagnosis could be helpful but I am not positive that it is even true for me.
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