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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    I found that my symptoms waxed and waned but grew in severity as the years passed. As I child, I would get a stomachache after dinner on some nights, usually had C, and developed migraines. As a young adults, I often became bloated and developed joint pain, and then as I grew older the symptoms became more severe and tended to happen more often... In my...
  2. nvsmom
    It's frustrating...Hang in there. Withe the gene tests, I recently read in Dangerous Grains that the DQ2 gene is in only 90% of celiac and that the DQ8 gene is only in 94% of celiacs (I think those were the numbers). That means that it is possible for approximately 5-10% of celiacs to not have the "required" genes; in fact I think there are one or two...
  3. nvsmom
    Welcome to the board. The fact that you were off gluten for the month prior to testing, and were only eating gluten in the week before the test,could have caused a false negative celiac test. You could be one of those individuals whose antibody levels drop quickly after they go gluten-free. A gluten challenge of only a week may not have been enough...
  4. nvsmom
    The total serum IgA is run because about 5% of celiacs are deficient in IgA (which is higher than the regular population) which means that any IgA based testing (tTG IgA, DGP IgA, EMA IgA) that is done will most likely yield a false negative result if the patient is in fact a celiac. Those low in IgA will need to rely on IgG based tests instead. I think it...
  5. nvsmom
    I was a "need to know"er for the blood tests - I'm not sure I could have, or would have, gone gluten free if I did not have the positive blood work. I was pretty used to stomach aches and such so I saw no real reason to change; I thought "it is what it is"... Pretty lame, eh? LOL Most people who had a positive biopsy seem to say that it was worth it...
  6. nvsmom
    Non-celiac gluten Intolerance (NCGI) could be something to consider too. The poor folks who have NCGI have ALL the same symptoms as a celiac except the villus atrophy; pain, GI issues, cognitive problems, nutitional deficiencies... all there, just very hard to test for. Hang in there!
  7. nvsmom
    IgE looks normal so it doesn't look like an allergy (as far as I know). I'm not sure what the three types of IgA testing were for. I've never seen that done. He does appear to make adequate levels of IgA though so his tTG IgA should be fairly accurate... as accurate as it can be in toddler. His tTG IgA is negative but those tests do tend to miss celiacs...
  8. nvsmom
    Welcome to the board. There really is no borderline celiac - you either have it or you don't. That "borderline" talk probably refers to the degree of damage found. Some celiacs have a great deal of damage and others just have patchy. It is thought by some that early celiac (in the first few years) often results in patchier and less severe damage and...
  9. nvsmom
    I think it depend son you and your doctor whether you go ahead with the endoscopy. I personally skipped it because the blood tests agreed with my symptoms, and my doctor didn't push for it either. Specialists (GI or other) tend to push for further testing, in my experience, but if you feel satisfied with a diagnosis of celiac disease with just blood tests...
  10. nvsmom
    You could be experiencing withdrawal. About 1/3 celiacs feel worse (more fatigued, headachey, pained) before they feel better. It usually takes a few days to hit and seems to last 1-3 weeks in most. once you get past that it will probably get easier. That being said, why not get tested for celiac disease now before going off gluten for a long time? A...
  11. nvsmom
    I agree, you're a celiac - don't make yourself ill with a gluten challenge. Your doctor is not educated in this... There are quite a few people around here who were diagnosed with a biopsy yet had negative blood work, and vice versa. Sometimes you just don't have enough autoantibodies in the blood to register but those autoantibodies they test for are...
  12. nvsmom
    I think the thyroid can be t especially tricky to treat. When my TSH was finally abnormal enough for the doctors to admit that I had a problem (after 15 years of asking about it ) my T4 and T3 (both of which I've now learned are not very informative for treatment), free T4 and free T3, and TPO Antibodies where all within normal range. My free T's were near...
  13. nvsmom
    All good advice. The tests to request are: tTG IgA and tTG IgG DGP IgA and DGP IgG EMA IgA total serum IgA (a control test) AGA IgA and AGA IgG (an older and less reliable test that is thought by some to indicate celiac disease as well as non-celiac gluten intolerance) Keep eating gluten until the tests are done. Good luck!
  14. nvsmom
    For blood tests, a gluten challenge of 8-12 weeks (longer being better) is required, eating the equivalent of two slices of bread per day. The gluten challenge for the endoscopic biopsy is shorter, usually 2-4 weeks. I'll back pedal and say it is a good idea to get tested if that will help you stay gluten-free. I know that I personally would have had...
  15. nvsmom
    Celiac killed my sex drive too. When I felt bloated and full to the point of pain in the abdominal area (did not want anything else in there - LOL), had migraines about half the time and felt fatigued, I'm afraid sex was about as appealing as vacuuming... except I could at least frown and sigh while vacuumin gwhere as with "lovin'" I was expected to smile...
  16. nvsmom
    I used to eat meat infrequently too. I ate meat more than once a week like you are, and I tended to eat beef or chicken that was raised on our family farm, but it wasn't much. I now eat meat or eggs at almost every meal and I feel better for it. I eat almost no carbs (maybe once a week) but plenty of nuts, meat, eggs, veggies and a bit of fruit... It works...
  17. nvsmom
    Checking nutrient levels could be helpful: calcium, iron, potassium, magnesium, B12,D, A, zinc, copper, ferritin are sometimes low. Hypothyroidism is common in celiacs. TSH, TPO Ab, free T3 and free T4 can check that. Liver, and adrenal function appears to be impacted in some celiacs. If you have symptoms you could get them checked too. Retesting celiac...
  18. nvsmom
    I do pack almost all of my own food and rarely eat out. Part of that is because I worry about being sick (not worth it for me) and partially it is due to the fact that I have three gluten-free kids who are picky eaters so it's tough to feed them off menus. I pack my own food when I travel. If I am gone more than a couple of days, I only stay where there...
  19. nvsmom
    Make sure they test "free" T's or you might end up with total T3 or T4 instead, which isn't as helpful as the frees. Good luck. I hope your doctors are willing to listen.
  20. nvsmom
    Sounds yummy!
  21. nvsmom
    I recently read in Dangerous Grains that only 90% of celiacs have the DQ2 gene and 94% have the DQ8 gene (I believe those were the numbers). It is very possible to have celiac disease without the DQ2 or DQ8 genes, most celiacs do have it though. The AGA IgA is not used very often now a days because it is not a very sensitive test. It is not solely specific...
  22. nvsmom
    I would give it another couple of months. It is usually reccommended that you give the gluten-free diet a minimum of 3 months, 6 is much better. I personally took a downturn after 3 months gluten-free so I usually suggest 6 months gluten-free before judging the diet's effectiveness. Also, because you have already been gluten-free for a month, and you...
  23. nvsmom
    Congratulations! I was undiagnosed while pg so I'm not sure if I would have felt better if I was gluten-free... I doubt I would have felt worse. LOL Pregnancy was a fast way to lose weight in the first 4-5 months for me. Yuck. Diclectin helped a bit but made me incredibly drowsy. Good luck,. I hope you find a diet that fits for you.
  24. nvsmom
    I think people who are in touch with their symptoms and know how to educate themselves usually diagnose themselves correctly. If you think you could have an issue with gluten, then you probably do,.. It's just a matter of getting the doctors to see what you are saying. Your BM problems are pretty common around here. Hemorrhoids and the resultant bloody...
  25. nvsmom
    I don't know a lot about the other tests and how they relate to each other. Most look fine to me - but I'm not knowledgeable in those tests. I see your bilirubin is high. Did they suspect liver problems? Are they going to look into that one more? I know it can indicate liver problems but it can also be elevated for fairly harmless things too. Your TSH...
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