Jump to content

nora-n

Advanced Members
 View Profile  See their activity

  • Posts

    1,490

  • Joined

  • Last visited

  • Days Won

    2

 Content Type 

Profiles

Forums

Events

Blogs

Latest Celiac Disease News & Research:

Everything posted by nora-n

  1. nora-n
    My daughter got an official diagnosis in spite of both negative blood tests and biopsies. She got so much better off gluten, and even her graves antibodies disappeared. Before, she had this pain everyday and had to run to the bathroom all day , and many of the other possible symptoms. nora
  2. nora-n
    The endomysial antibodies are considered the most specific blood tests...meaning they probably first will be positive after all the villi are gone.... (someone posted here that her daughter was positive but had only slight damage) Ypu still need the others, the Ttg tests, and the antigliandin tests. Preferrably both the IgA and IgG variants. Some...
  3. nora-n
    If you go to Dr. Ford's webpages, he explains about the antigliadin IgG test. You might want to ask for that one. The other tests probably will not get positive until the villi have disappeared....the antigliadin IgG probably rises much faster and may show celiac or gluten-intolerance a long time before the villi are gone. Open Original Shared Link...
  4. nora-n
    Maybe this link works better Open Original Shared Link about half-way down a small chapter. It means that if one hads been gluten-free, then after three days they can detect some fresh-activated somethingIdon'tknow... Here is the abstract from one article in gut: " Gut 2005;54:1217-1223; doi:10.1136/gut.2004.059998
  5. nora-n
    Your ferritn (a transport protein made by the liver) could be thrown off for some different reasons. nora
  6. nora-n
    According to my math, you need at least 7-10 slices a day, depending on the gluten content of each slice. Another commnet: i am trying to enroll in a clinical study (if theyaccept me, I am not DQ2 or8) for a new 3-day test for celiac they are working on. You eat gluten for three days and then they test you. It is not routine yet, they are jsut studying...
  7. nora-n
    I can see it fine, I have acrobat7. You might want to download focit pdf viewer (is not so picky and can open encrypted pdf's and is small insize, opens faster) (there is a plugin with which yu can make pdf's. both are free) nora
  8. nora-n
    My daughter refused the gene test, and got a diagnosis because of the dictinct symptoms and the drastic improvement off gluten. even her graves antibodies just disappeared after going gluten-free. (but the TPO antibodies did not). I did test negative for DQ2 or 8, so might she...she might not have gotten a diagnosis if she would have accepted the gene...
  9. nora-n
    About the research: I am in the country of the reseachers Lundin and Sollid (they were at the New York Conference last fall). I was gene tested at their lab. They reused to tell me which DQ type I had, only answered DQ2 and DQ8 negative. I phoned the lab and a lasy answerd that they maybe could tell if I am DQ3, but to ask my doctor to contact them (which...
  10. nora-n
    I have seen several articles which have been accepted in peer-revieved publications, by Dr. Hadjivassiliou, that 20% of the gluten ataxia patients (who also had Ttg andtibodies and some other immunological markers bedause of gluten) have DQ1. And there is something about DQ7 too some other places. Open Original Shared Link here is something about DQ...
  11. nora-n
    There are two versions of the DQ2, and it looks like you have both of them....one involves both the alpha and beta chain and the other is the ordinary DQ2. Some images: http://www.tidsskriftet.no/lts-img/2003/L03-22-Med-19-01.webp Open Original Shared Link Yes, you have one from each parent. nora
  12. nora-n
    Here in Europe we get money after an official diagnosis of celiac (coeliac). This is one reason for the biopsy. The other is to have something to compare with if you maybe (rarely) do not get much better. And, the risks of tumorsis much greater in celiacs, so it is a good thing they check for those incase of persisting symptoms. I did meed a woman...
  13. nora-n
    Hi I am in Europe too, and here we recommend biopsy of the small intestine. I even read a posting here that they somewhere in the London area took 15 samples during endoscopy, following the lates recommendations. My daughter was negative , both in the biopsies and blood tests, yet she got an official diagnosis of celiac, she had so many typical...
  14. nora-n
    I loked at several abstracta about this in www.pubmed.com the other day, adn noticed that they only recognized villous atrophy as celiac. we know that the damage in the villi can be just in the tips, or show up as increased lymphocytes. Those woud be negative for celiac according to those standards. Also, researchers have tested the biopsies for Ttg...
  15. nora-n
    Here in this country we get about 200 dollars a month if we get an official diagnosis of celiac or DH. How much is it in the UK? nora
  16. nora-n
    About your son---gluten is known to to trigger epilepsy in gluten-sensitive people. Have you looked into that? Dr. Hadjivassiliou has also written articles about gluten-sensitivity and neurological problems and says only a few have bowel afflictions, that gluten-sensitivity is really three things, villi destruction, Dermatitis herpetiformis, and neurological...
  17. nora-n
    I t irritable and everything feels wrong and uncomfortable etc..... I got somewhat better today after tking a potassium tablet i had. got glutenend from some traces of gluten yesterday and the day before, problably in some rice crackers. nora
  18. nora-n
    0302 is DQ8 and one of the celiac genes, but the DQ5 is one of the DQ1 types, and there have been several postings here and on the neurotalk gluten-sensitivity forum that the DQ1 can be very sensitive to gluten, more than ordinary celiacs. I tested negative for DQ2 or 8, (cannot get the actual results here in this country, this was done at the lab of...
  19. nora-n
    I googled dq7 and celiac and right away got this: Open Original Shared Link "Eight of the 122 celiac disease patients lacked both the heterodimer and the DRB104 alleles; therefore, we further screened the DQB1 locus to investigate if other alleles were present in association to celiac disease (2)(14). Two of these eight celiac disease patients showed...
  20. nora-n
    In real life, often celiacs will only hve one of these tests show up positive. I found some abstracts on that at medline. www.pubmed.com Open Original Shared Link but there have been people here who only had one of them positive aand they were diagnoses and ogt better on a gluten-fre diet.
  21. nora-n
    I am in europe too, so what clinic, and are they very good at looking at celiac biopsies, etc? nora
  22. nora-n
    Hi My daughter got an official diagnosis of celiac with both negative blood tests and biopsies. And this is here in europe, where the government gives you money if you get a diagnosis. (about 200 dollars a month). She was so symptomatic on gluten, and bor so much better off gluten,a nd had numerous other typical symptom, including graves disease...
  23. nora-n
    Where is "here"? nora
  24. nora-n
    30 mg gluten per kg body weight, and the time is at least six weeks, might be more.
  25. nora-n
    You have villous atrophy and DQ8 and symptoms and a positive blood test? It is quite rare for other things causing villous atrophy, but in small children, casein allergy is known to cause flattening of the villy in some cases. Also, infection with giardia can temporarily cause a little damage to the villi. I think it is highly unlikely that you...
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.