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Neshema1

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Everything posted by Neshema1

  1. Neshema1
    Went to the nutritionist. Took forever to get there, cuz the storm here had all traffic lights down. Arrived and they were closed due to no power. UGH! I am thinking of going to someone in my network at the hospital down the street, but then again, I thought maybe best to at least consult with the one who works with the doc who did my dna tests. So, I gotta...
  2. Neshema1
    I have sjogrens. I've had inflammatory arthritis since age 9. Mydoc was convinced I had sjogrens even tho my Ana wasnormal until recently & it came definite for ss. Definitely bad. So, I'd say in all my years with rheumatic disease & seeing countless ppl told they have fibrio only to find out later they have RA,lupus. Ss, etc ,I'd say get a good rheumatologist...
  3. Neshema1
    Check out your creatinine levels to see if they are low. As would be the case with muscle wasting. You might want to be checked for mitochondrial myopathy as it can be associated with celiac & muscle wasting, but then agAin so can malnutrition & low protein. Good luck.
  4. Neshema1
    Yes! I was dxd with small distal fiber neuropathy at mayo using QSART sweat tank method. Emgs, I was told, are better for large fiber. I also have dysautonomia. I suggest you check out dinet.org for more info. Think u will see much of your symptoms there & many of the pots dysautonomia patients have gluten intolerance. Good luck!
  5. Neshema1
    Prof. thanks. I was head of a top ranked doc program at a major university, and made full prof at a young age. I supported countless doc students through school. The doctorate was easy for me. My life as a simple person now is very hard. My degree means nothing compared to who I am as a person. Getting really sick taught me a lot more than I ever knew when...
  6. Neshema1
    Sky- I am not seeing where heterzygous 2.2 without one of the other celiac types (2.5, 8, etc) has a risk. do I need the rest of the article? If so, I can get it through the university. Maybe 2.2 heterozygous with 5.1 means I am not at risk, unless I missed something. Thanks for your patience! Thanks for looking up the pancreatic stuff too. Really appreciate...
  7. Neshema1
    Ok, I went back to the Wikipedia pages, and from what I get (please tell me if I understand), dqa1 01 has 6 possible alleles (right word?) 0101-0106, and u r saying quest didnt tell me which. But, whatever it was, it is not found with my dqbs. and then the dqa 02 only has 1 possibility and that is equal then to 0201. The dqb2 of 0202 is of concern cuz it...
  8. Neshema1
    sky-Thanks. Okay, just a bit more clarification and I think i will get it finally. THanks for your patience! I am so grateful. The Dqa1*01: is that equal to DQa1*0101, and the Dqa1*02 is equal to 0201? Somewhere else, I saw someone posted their DQa1 as 02 and 01 (reverse order of mine) and they were told that meant 0201, but are you saying we are both 02...
  9. Neshema1
    Ok to answer how I was dxd then, it was early 1960s. I have records earliest from age 4. The docs told my mom I have celiac. I don't know if they had tests for it then. I think it was based on my symptoms (typical of celiac) & analysis of my diapers. The docs put me on the celiac diet & i stopped losing weight & my symptoms improved. Later, at...
  10. Neshema1
    Cont'd ok Nurse left. I'm back-skylark & others who replied already. Thank you! Sky- do u mean they didn't test dqa2? Should I have that done to confirm or do we have enough info? How do we know I'm not dqa1*0102 not 0201? If I'm 0102 doesn't that mean I'm negative? U say 2.2 and 2.5. Doc just said 2.2 but it was kind of rushed at end of appt. He's had...
  11. Neshema1
    Omg, are u sure not dqa 0102? Are u sure the doc is right? Can u tell me like a children's story version of how u interpreted my data? I can teach really hard statistical proofs but I feel so dumb abt this... Probably cuz I'm in shock. If u all knew my story & how celiac may have contributed to SEVERE health problems gtg more in a bit. Home IV nurse...
  12. Neshema1
    I was always the smallest in my grade at school. I hope someone can help me with my test results. Ill have to look up ur son's dx.
  13. Neshema1
    Hi, I'm new here, but was dxd w/celiac at age 14 months (a long time ago & who knows how back then) when i had all the usual symptoms and began losing weight. My mom says I did better the many years as a child on the celiac diet. A few years later, I was told I had a trypsin (pancreatic enzyme) deficiency. I've had all kinds of health problems throughout...
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