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Nolev

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

Everything posted by Nolev

  1. Nolev
    Yes me. That's because I'm IgA deficient - have next to none. I had super high TTG-IgG. Also my endoscopy showed no villi damage but did show high IELs. My gi said positive blood test plus high IELs meant definitely celiac. He would have concluded celiac just from the blood work I think. 2 years later, strictly gluten-free the TTG-IgG slowly coming down...
  2. Nolev
    You could ask for the celiac panel again and see if being gluten-free has reduced the AGA levels. That would seem to indicate that being gluten-free helped. Some other people have said doctors have at least noted suspected celiac of one of the numbers came down after being gluten-free. Also you should ask to see your endoscopy results and see if elevated...
  3. Nolev
    Agree. I was also diagnosed with one very high positive. You should ask what your IgA levels are - you may have IgA deficiency which I have as well which is why my IgA tests are always negative. This is just good info to know. I also have DH (the skin manifestation of celiac) and all my skin biopsies are negative because they are IgA based. Also good to know...
  4. Nolev
    Oh and let me clarify - based on the tests you say you had you only know you are IgA deficient. You have no information on your celiac diagnosis until you take the IgG versions. Then you will know if you likely have celiac or not. Next step would be endoscopy. If you have celiac, you need to be gluten-free for life. You don't develop celiac by eating gluten...
  5. Nolev
    Totally agree with cyclinglady. I am IgA deficient as well. Scores a healthy zero on the IgA based tests - false negative as it turns out. Finally got the TTG-IgG version and voila I broke the test - really. >15 was positive for celiac and I had >250!! IgA deficiency is genetic. You need to follow this chart and you can see clearly what tests you need...
  6. Nolev
    Open Original Shared Link this is my favourite document showing how to test and diagnose celiac
  7. Nolev
    Yes definitely safe - I trust this brand and product
  8. Nolev
    Open Original Shared Link I only was positive for one of the blood tests in the panel (in my case anti-TTG IgG) and I definitely have celiac. My understanding is that the whole point of the celiac profile is that it tests in different ways and captures different positives and this is why it is better than just a single blood test. My doctor would definitely...
  9. Nolev
    I have DH. I am overweight. I have celiac and zero gastro issues or pain. In fact my (4) skin biopsies all came up negative for DH and most celiac tests too. I'm also IgA deficient and this impacts the skin biopsy and IgA related celiac blood tests. I finally scored positive on a TTG-IgG celiac blood test and then had an endoscopy which showed no villous...
  10. Nolev
    re: prednisone, I have DH and psoriasis - after coming off prednisone, everything came back so much stronger...and this got worse every time (took prednisone 4 times - will never take it again!). The reound effect was awful. Re: this picture: I agree DH is BRUTALLY itchy. Psoriasis and eczema are both itchy but more of a bothersome itch, rather than a...
  11. Nolev
    I actually have all my blood tests - my IgA levels are 0.07 g/L (=7mg/dL I believe). This qualifies as Selective (not partial) IgA Deficiency. Also btw the Deamidated Gliadin Antibody IgG test was borderline for me (10 U/mL with >15 being positive). The Tissue Transglutaminase IgG result was ">250 U/mL" (with same ref range >15 being abnormal...
  12. Nolev
    Open Original Shared Link This seems like the definitive article about my condition....they want to charge me $31.50USD to read it....hmmmm - well the abstract confirms that there were at least 2 people with partial iga deficiency and DH. Doesn't mention the skin biopsy - maybe in the article itself.... if anyone has it, would love to read it.....
  13. Nolev
    How would I get in touch with them and give them my info? Wouldn't they want me to book a consultation? I'm in Canada and I have no experience with US healthcare. I went to the links you sent but I only see phone #s to book a consult. Also re: Dr. Zone, I found him in my research and tweeted to him hoping he might notice or reply. He didn't....(but he...
  14. Nolev
    thanks again - yes 3.5 months. It is a mental battle - some days I think maybe docs got it all wrong - othr days I'm more rational and know this is the correct diagnosis, it just takes time. Instead of ice packs, my sister taught me to put rice in a fuzzy sock in the freezer - it is the perfect kind of cold and soothing to the skin! And for baths, I use...
  15. Nolev
    thanks for the links and thoughts - I truly apprreciate it. It is odd to be "part of a club" and yet no one seems to be like me at all!! IgA deficient with DH.....still searching.... I have read most of what you suggested. A, being careful as possible abou contamination but I travel for work a lot and eating out of a suitcase is just not healthy. I am...
  16. Nolev
    If it makes you feel any better I am 3.5 months gluten free (super strict) and erupting all the time and still super itchy including covered scalp. It too feels like I'm getting worse rather than better (but I think it is actually bad but not worse - in other words I have spent the last 9 months suffering, so it is all starting to be a blur). Re: meds:...
  17. Nolev
    Hi - I'm pretty new here and am wondering if anyone has had a similar experience. I'm 42, female. Got a rash ("dots" as I call them) in June 2014. Spread on my legs, bum, back, arms - SUPER CRAZY itchy and extremely symmetrical. First dermatologist did a skin biopsy which indicated drug reaction. As I wasn't on any new meds recently, he decided it was insect...
  18. Nolev

    ARCHIVED Dh Please Help

    Nolev replied to RCV's topic in Dermatitis Herpetiformis

    Jim What was the result of your biopsy? Mine was positive for celiac. I am on day 40GF and I'm not better at all yet. Super frustrating. I think I'm in denial..... Hard to be so strict gluten-free (which I am being) when there is absolutely no relief so far. And when you red it could take 1-2 years!! I had a bad reaction to dapsone and no other meds...
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