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NY547

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Everything posted by NY547

  1. NY547
    Hi Everyone. My question for you all is: have you ever had extreme fatigue and weakness at certain times of the month? My daughter has very bad abdominal pain which radiates around to her back, but she also gets so weak she can not stand up to take a shower or lift her arms. A few months ago, they saw cysts on ultrasound and her LH/FSH hormones were out...
  2. NY547
    I agree with WW340. The lipid panel doens't seem to be anything to worry about, however, when my daughter was 13 her cholesterol was also slightly elevated. (200, with ref range <200). Her new doctor wants to have the lipid panel repeated (fasting) just to see where she is now at 15 years old. It wouldn't be a bad idea to ask to have it repeated and...
  3. NY547
    In my oppinion, he is positive for celiac. Celiac can affect/attack more than just the GI tract. Just ask the people with DH! He has antibodies to Tissure transglutaminase which is a VERY SPECIFIC marker for villous atrophy caused by gluten ingestion. He may want to have the test repeated just to be sure there was no lab error since the other 2 tests...
  4. NY547
    Hi Lisa, My daughter has BC/BS and has had the blood antibody panel for celiac ordered through her primary care provider. They even checked it a second time a few months later. No problems with reimbursement. Of course there are many forms of BC/BS, so if you are not sure, call the 800 number and find out for sure which ICD codes will cover the test...
  5. NY547
    I think I would stick it out another 2 weeks until the repeat blood work and see what the vitamin levels and celiac antibody show. If your B12 is less than 400 that is low enough to cause some symptoms, and could be from malabsorption even if you are not anemic, same with the iron, TIBC test. You could still be iron deficient with a normal low/normal iron...
  6. NY547
    Jenna, you definately have celiac. I would think that your doctor would want to schedule you for an endoscopy to see the extent of the damage in your small intestines at this point, but not all feel it is necessary. (The TTG # usually reflects the amount of damage that has occured, and any positive # is indicative of damage to your villi) The H Pylori...
  7. NY547
    TIGANO, I agree with the others also, you could still have celiac with a negative Bx. You could check to see exactly how many samples were taken as the disease is very "patchy" and ask to have them checked with a special stain which checks for intraepithelial lymphocytes (IELs) Even if there is no bluntuing or villi damgae, an abundance of the lymphocytes...
  8. NY547
    I've seen a few article on DQ1 also: Try this link, if it doesn't work search for Edwin Liu, DQ1,celiac. Open Original Shared Link Here's a portion of his article: Another marker, HLA DQ1, has been identified by both Dr. Kenneth Fine and Dr. Marios Hadjivassilou as being associated with a Non-Celiac Gluten Sensitivity. While those who carry...
  9. NY547
    OK, I have to jump in here. Maybe I'm missing something... I do agree with kbtoyssni in that gluten intolerance can often become celiac down the road. And I also agree you can have all the same symptoms as a person with diagnosed celiac disease even without the villous atrophy. My concern after reading all the posts is DACAT, how do you know you do...
  10. NY547
    If damage was found in the intestines with the endoscopy then chances are, it is celiac. Crohn's usually only affects the lower portions of the GI tract from what I understand. It is not uncommon for people to have IgA deficiency with celiac. Many labs only check the TTg (tissue transglutaminase) for IgA as an initial screen. If suspicion for celiac is...
  11. NY547
    As I read your post, Lyme disease definately came to mind. With the severity and rapid progression of symptoms though, it sounds like there is definately something else going on. I am assuming they ruled out MS? There are many forms of the disease, some with very rapid onset. Research has linked MS to celiac and I have a friend whose husband was stricken...
  12. NY547
    Guten Tag! I think it is quite a coincidence that all 3 results came out 1.2 I would question the results if they were mine! Many doctors just order the Tissue transglutaminase test (TtG IgA) as a screen. It is good your doctor included the IgG as well and also the gliadin antibody. I would also ask for the total IgA (total immunoglobulin A) as well...
  13. NY547
    You're welcome! My daughter also had negative blood work and positive results with enterolab. About 4 years ago her Total IgA was just under the normal range, but not enough to be considered a true deficiency. We had it checked again and her #s are a little higher, but still on the low side of the normal range. The IgA test has differant ranges for...
  14. NY547
    Yes, IgA or total IgA is short for immunoglobulin A. It tests for your body's ability overall production of the IgA class of antibodies. If you do not produce them anyway, it definately will make the celiac tests for IgA (gliadin and tissue transglutaminase) come back negative, but you could still have celiac, If this is the case, many labs will reflect...
  15. NY547
    Your daughter's Bx was positive! Wow. I'm happy you finally have an answer. It is a difficult position to be in, you want your loved ones to be healthy but at the same time you are hoping everything comes back negative. Well at least now she knows. I remember when we had my daughter's blood work done last year. When the results came back negative...
  16. NY547
    Let me guess, your son didn't do very well because he hardly ever gets his homework in on time, even when he brings home the right stuff, he just can't seem to do it. That's the situation here. My son is also very smart, and tested 4 grade levels above where he should be, back in 4th grade, he scored the highest on a standardized test in the history of...
  17. NY547
    Hi Chrisbee, Thanks for sharing. You,ve convinced me, if your daughter's bx shows anything, then I will go ahead and have my daughter's done. I've been considering it for 4 years! At a recent GI referral, he offered it saying up to 20% of seronegative individuals show signs of "something" on the bx. My family thinks I'm nuts! (Even though my aunt...
  18. NY547
    I can't really say I'm fed up...if there is nothing there to find, then the docs have no other alternative than to suggest depression. My daughter "crashed" again 2 weeks ago. Severe fatigue, headaches, etc. They ran all the usual blood work again. Nothing definitive. They offered to do sleep testing. By the time the nurse called me with the results...
  19. NY547
    Hi Chris, sorry I don't know how the perscription plan works in the UK, but I just had to reply to your thread. You have described my daughter's history (age 15) to a T. She also has had negative blood work (3 years ago she did have an elevated gliadin IgG, but with the newer supposedly better tests, all came back negative) Last October she started getting...
  20. NY547
    No matter whether the statement made to teacher regarding our responsibility to diagnose ourselves was made to be hard hearted or simply directed to the medical community, the fact remains that when it comes to celiac or gluten sensitivity, the medical community in this country comes up short. My feeling is that just about everyone on this board has...
  21. NY547
    Hannaford has a good selection of gluten-free foods as does healthway on route 9. We are also in the Albany area, and like Erica, my daughter had inconclusice blood tests, then more recently the screen came back all negative. Her enterolab results were positive (low numbers, but positive). She has not had an endoscopy yet. I am still deciding whether or...
  22. NY547
    Hi, I am also very frustrated. Ravenwoodglass, I am very interested in your signature, are there many people who test negative on routine blood work but do have celiac or a problem with gluten? I have been told that the tests are now very accurate and there is no need for the endoscopy. Just wondering how many have had negative blood tests, but later...
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