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Emmy208

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

Everything posted by Emmy208

  1. Emmy208
    Here is information about 4-6 samples being taken for the endoscopy: https://celiac.org/about-celiac-disease/screening-and-diagnosis/diagnosis/#:~:text=Samples of the lining of,to obtain an accurate diagnosis. Here is a link to the LabCorp celiac gene test which states that half DQ2 also predisposes to celiac: https://www.labcorp.com/tests...
  2. Emmy208
    Unfortunately, I do not have an answer but I wanted to reply, one to let you know you’re not alone, and two, because I want to be notified when someone else answers this because I am wondering the same thing lol. I have a rash that looks like pictures of DH on the internet and matches up with online descriptions of DH symptoms (symmetrical, burning/stinging f...
  3. Emmy208
    Ok, we will see what they say at the appt. 🤞
  4. Emmy208
    Ok, thank you! I hope it’s possible that I’d be able to do a modified gluten challenge for the endoscopy and DH biopsy. I get steatorrhea and the rash from just CC so it’s possible 1 week could be enough to show some significant damage. Honestly, though, I’d rather not risk a false negative so maybe I’ll do a 2 week gluten challenge to be safe. I might a...
  5. Emmy208
    Yeah, unfortunately I think you’re right. I met a girl who has celiac yesterday and she told me she’d been getting sick from eating from the “gluten free” food options at the buffet and only feels better when she gets food made by the dedicated allergy chefs (there are two of them and they are actually informed about preventing CC, but the rest of the sta...
  6. Emmy208
    Hey there, I’ve posted on this forum a few times before. For anyone who doesn’t know, I have not been diagnosed with celiac disease but have noticed that a GFD has resolved/shown improvement in a number of symptoms I’ve been experiencing (severe chronic fatigue, itchy blistering rash, migraines, muscle pain, C and D, steatorrhea/yellow stool, and white spots...
  7. Emmy208
    Hi there, just another clarifying question—you said that it showed you had “the DQ-2 gene, specifically HLA-DQ-A1*05.” Did you mean to say that you have DQ2.5 (HLA-DQA1*05 and HLA-DQB1*0201/2)? Or was only the HLA-DQA1*05 allele detected? If you have one copy of DQ2.5, that is a “moderate” HLA genetic risk for celiac disease. If you have only the DQA1*...
  8. Emmy208
    Hey there, it’s possible you are experiencing cross-reactivity, which is where your immune system mistakes a gluten-free food ingredient for gluten. Some examples of ingredients that can cause cross-reactivity are oats, casein, and soy. I highly doubt Schar’s products are contaminated with gluten as they are a company dedicated to making only gluten-free pro...
  9. Emmy208
    Some celiacs experience what is called cross-reactivity, which is where their immune system mistakes a gluten-free food for a gluten containing food. This often happens with oats since the oat protein, avenin, is similar in structure to gluten. It’s possible this is what you’re experiencing.
  10. Emmy208
    Thank you, yeah you are right. After I got my gene test, my mom didn’t think it was possible I had celiac and tried to talk me out of thinking I had it. It definitely also threw me off because quest told me I was entirely negative for celiac genes but then did provide a list of the HLA alleles detected, one of which was one of the DQ2 alleles (but for a w...
  11. Emmy208
    Hi there, I do not have a celiac diagnosis either but suspect I could have celiac due to my extreme sensitivity to gluten. I can’t answer all of your questions but I can definitely answer some. In terms of shortness of breath, you are correct in thinking that you might have anemia. Iron deficiency anemia often causes shortness of breath and extreme fatigue &...
  12. Emmy208
    Thank you so much for your help! I do have the original blood test results. I am pretty sure that on every blood test my levels were extremely low (close to zero, never more than 1). They did not do a total serum IgA yet thought celiac should just be ruled out since the blood test was negative. After my negative blood test for a while I thought I just had...
  13. Emmy208
    Hey there, I’ve posted on this forum twice before. If you haven’t read any of my posts, I’ve had severe chronic fatigue, GI issues, unexplained vitamin deficiencies, steatorrhea, fibromyalgia-like chronic muscle pain, and a rash that all improved on a GFD. I tested negative for celiac on all blood tests (TTG-IgA, EMA IgA, DGP-IgA/IgG). I am starting to su...
  14. Emmy208
    Thank you, yes this helps a lot! I agree, I don’t think I am going to completely rule out celiac yet. I haven’t gotten a DH biopsy because I’m currently at school and there is no dermatologist knowledgeable of DH near me. Plus my mother thinks I’m kind of crazy for believing I might still have celiac which is also a problem. Bc of that I don’t know if...
  15. Emmy208
    Hi there, I’ve posted once before on this forum. I’ve done some blood tests (ttg-IgA, DGP-IgA/IgG, EMA IgA) for celiac and they were all negative, but after the blood tests I went gluten free and felt much better. For those who don’t know, I’ve had severe chronic fatigue, bloating, mainly constipation but also sometimes diarrhea, chronic nausea, muscle pain, m...
  16. Emmy208
    I got the genetic test today. Waiting for the results now 🤞 Yeah that’s a good point about the nutrient deficiencies. It could just be that if I have celiac, the antibodies are in my small intestine and not my blood stream-I read some studies that said that can happen.
  17. Emmy208
    Hey, I just got the second blood test my doctor requested today. I had a CMP, second thyroid panel, and hemoglobin A1c to rule out diabetes. Thankfully, everything was normal! I was surprised that my T4 went back to normal (it was much higher, 1.05–for reference, my free t4 was 0.9 in May this year and then 0.5 in July but around 1.2 when it had been tested b...
  18. Emmy208
    Update: I had my appt with the doctor. She said that blood test was a food sensitivity test (IgG) and not IgE allergy, and mine was only slightly high so it shouldn’t bother me terribly if I have wheat sometimes. However this is def not the case for me — yesterday I thought it was ok to toast a gluten-free bagel in the family toaster since I washed the met...
  19. Emmy208
    I didn’t know that thank you!
  20. Emmy208
    Oh and that’s a good idea to get the rash checked by a dermatologist to see if it is DH! It has almost disappeared now but if I went on a gluten challenge I’m guessing it would come back. Worth a try when I’m on break. And I was eating gluten probably almost every day for a year. Some days I wouldn’t eat gluten but other days I’d eat gluten at multip...
  21. Emmy208
    I don’t have a copy of my blood test results-I saw them briefly at another doctor’s office but they haven’t been uploaded to my patient portal for some reason. I think I have iron deficiency without anemia since my hemoglobin was in the normal range. I did see on my test tho that I had high neutrophils and low lymphocytes, so I’m not sure if that would a...
  22. Emmy208
    I had tTG-IgA, deamidated gliadin peptide IgA and IgG, and EMA-IgA done, which were all negative. I also had H. Pylori IgM and IgG tested and was negative. That’s interesting that total serum IgA should also be tested I didn’t know that.
  23. Emmy208
    Hi there I’m new here. I’ve been having fatigue/digestive issues for years now, but ever since getting COVID a few months ago, they’ve been significantly worse. The fatigue has been so bed it’s hard to get out of bed. I’ve also struggled with nausea, bloating, constipation (and sometimes diarrhea), headaches, and body aches. Additionally, I’ve been showin...
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