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nvsmom

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Latest Celiac Disease News & Research:

Everything posted by nvsmom

  1. nvsmom
    Thank you! Me too!! My oldest (12) has a sore throat and feels sick today... Eek. I hope it is just a summer flu.
  2. nvsmom
    I lived 38 years, perhaps as few as 33 years, with celiac disease before I finally figured it out and had a doctor confirm it. I thought constipation was normal and when it did actually change to normal, I thought that was D. I ALWAYS carried a sweater with me to hide my after eating or drinking bloat. What do you mean it sn't normal to be doubled over...
  3. nvsmom
    1.... My question is could it be that I was maybe sensitive to gluten last year or just starting to have Celiac and that's why my endoscopy was negative? They only took 3 biopsies of my duodenum by the way. --.-- Most celiac experts say 6 is the minimum biopsy amount needed to get an accurate result; some say 4. 3 biopsies may not have been enough if...
  4. nvsmom
    I looked it up. Lyrica is serious stuff. I shouldn't need it. Crossed fingers.
  5. nvsmom
    Thanks all. I've never even heard of Lyrica. I'll have to look it up out of curiosity. I think my case is pretty mild (knock wood). That rash is smaller than the palm of my hand, it's just the soreness that radiates out a few inches. It feels almost like a burn on the rash, without temperature sensitivity, and the area around it is a an odd tingling...
  6. nvsmom
    It IS shingles. poo. I skipped the antivirals since I've had it a couple of weeks. Hopefully it doesn't get worse or hang around for many months.
  7. nvsmom
    I agree. 103 is pretty good after eating carbs. Try a whole bunch of readings over the next few days and see how you do, especially 1 and 2 hours after eating as Cyclinglady said. First thing in the morning is a good thing to check too. Write it all down and you'll see the patterns.
  8. nvsmom
    Immunoglobulin A and Immunoglobulin M are just measures of the immune system activity. They are not celiac tests. IgA and IgG are parts of the immune system involved in celiac disease testing; IgM is not. Naturopaths will often do food sensitivity tests based on the IgG part of the immune system. These are not celiac disease tests either. I know of...
  9. nvsmom
    I used it about 3 years ago. It was on sale for $50, regular was closer to $100. It showed I had adequate IgA and gave me a very faint positive tTG IgA test. I went to the doctor to confirm and I had a very positive tTG IgA result and adequate IgA. I think it is relatively accurate but I know of one person who had a positive result even though it turned...
  10. nvsmom
    I've had (mild and undiagnosed) reactive hypoglycemia for many years. It became more noticeable when I started slipping into prediabetes. My morning fasting blood glucose was a bit high (a 5.8 or 105ish), then I would eat something and it would go higher then start plummetting. It would fall below my starting glucose levels within the hour and keep falling...
  11. nvsmom
    I agree with Cyclinglady (again ). If you are only eating trace amounts of gluten (in chocolate, soy sauce, or just crumbs in the butter) it may not be enough for accurate tests. Ideally, if you can test now, do it. If the tests are negative then you can retest after a gluten challenge of a few months (if you are up to it) or go gluten-free. If money...
  12. nvsmom
    Ditto everything Bartfull said. If your children eat gluten, it is a good idea to retest every two years since the disease can hit at any time. A few questions: 1) I cannot take dairy in any form now...it is extremely painful. I have tried lactaid, but that causes just the same amount of pain. Is this common with celiac? About 50% of celiacs are lactose...
  13. nvsmom
    Hope it went well.
  14. nvsmom
    Do the tests first if you can. You just need to wait long enough to get an appointment with your GP, and then a few more days for the test results to come back. If you choose to do a gluten-free trial first, then you will need to resume eating gluten for 2 to 3 months and then go to the doctor. Way more hassle - that could put you back into the holiday...
  15. nvsmom
    For celiac damage to reliably show up in an endoscopic biopsy, the patient needs to be consuming gluten (about 1-2 slices of bread per day) in the 2-4 weeks prior to the biopsy. If you have been gluten-free for a good length of time, then your biopsy should be normal. (And as Cyclinglady said, visually the intestines usually look fine even when damagaed...
  16. nvsmom
    Thanks! I remember that post. I'll see the doctor tomorrow.
  17. nvsmom
    He sounds like a great guy to have had in your life.
  18. nvsmom
    That's the EMA IgA celiac test. It is really similar to the tTG IgA (tissue transglutaminase) but it tends to show more advanced damage so it can be negative in early celiac disease or in kids. Once gluten-free, the EMA IgA will return to negative fairly quickly, especially compared to the ttG IgA. It should be negative if you are gluten-free. It doesn...
  19. nvsmom

    ARCHIVED Hair Loss

    nvsmom replied to Stacy0w's topic in Coping with Celiac Disease

    Biotin is supposedly helpful. I would have guessed your thyroid was involved... I hope you figure it out..
  20. nvsmom
    That sounds right. IgA is immunoglobulin A which is just a measure of the activity in one part of your immune system. Total IgA looks at the immune function of the mucosal linings of the intestines and mouth. IgG is more of a system wide part of the immune system. IgE deals with allergies... About 5% of celiacs are deficient in IgA. That will cause...
  21. nvsmom
    LOL Your husband sounded like a character... you seem to share the same outlook and humor. So you did have the free T's tested then. Good. You may just want to sit on it until any other tests are done for lupus. I hope it's not... It does sound like you are going through so much pain though. Sounds bad. Does fibromyalgia fit with what you...
  22. nvsmom
    The usual things to check is bone density, anemia, potassium, magnesium, calcium, zinc, cupper, ferritin, B12, iron, D, A, and... I think I'm forgetting something. Hmm. Also, keep an eye out for signs of hypothyroism/hashimoto's and type 1 diabetes; both of those are the most common co-occurring autoimmune diseases. If you retest the labs, wait at...
  23. nvsmom
    Thanks, Barty. My rash is along the upper rib stripe on the right - the location is spot on. If I put my arm down it hits it, and then there is a smaller patch just a bit further back. Mine look somewhat like the picture on the waist but mine isn't scabbed like that, although it is starting to feel a bit scabby (at about 10 days in). Pfff. No sense...
  24. nvsmom
    Your TSH looks good, so even if your other numbers were really out of whack, and they aren't too bad, my guess is that most doctors would refuse you thyroid medication. TSH looks good. T4... was it listed as T4 (or total T4) or free T4. They're a bit different. Free T's are the hormones that are available for use. They aren't bound to proteins...
  25. nvsmom
    I agree! That looks like celiac disease to me too. Since her IgA was low, the only tests that are valid are the tTG IgG and DGP IgG. You could also ask for the EMA IgG (which tends to show more advanced damage and is often negative in young children) and the endoscopic biopsy (6+samples taken). The tTG igG is not a high positive, but a positive...
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