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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    It is lotions and some hair products that sometimes have gluten. I tend to avoid those with gluten because I will sometimes get shampoo or lotion in my mouth. Gluten can't get through skin, You just have to make sure you aren't consuming it.
  2. nvsmom
    I too am sorry for your loss. I think you might as well get tested for celiac disease. The skin biopsy is a good idea. These are the rest of the tests: tTG IgA and tTG IgG DGP IgA and DGP IgG (deaminated gliadin peptides) EMA IgA (endomysial antibodies) raerly positive if tTG IgA is negative total serum IgA - control test AGA IgA and AGA IgG (anti...
  3. nvsmom
    Welcome to the board. The first three tests you mentioned are celiac disease tests but not the best ones. This is the complete panel: (tTG IgA - you had this done) and tTG IgG DGP IgA and DGP IgG (deaminated gliadin peptides) EMA IgA (endomysial antibodies) raerly positive if tTG IgA is negative total serum IgA - control test AGA IgA and AGA...
  4. nvsmom
    I had C my entire life too. I was taking so many types of fibre to try and get things going that it was ridiculous. And if I travelled or was at all stressed, I would only go about once a week. Bleh. My C did not change until I had been gluten-free for 9 months, but to be honest, I don't think it was the gluten-free diet that helped but finally being...
  5. nvsmom
    Welcome to the board, even though no one wants to be here. My son was a mild asthmatic before going gluten-free. His asthma appeared to have disappeared a few months after going gluten-free. It could be developmental but it was still nice to see his cough go. I haven't heard about throat pain as a symptom of celiac disease. It could well be though...
  6. nvsmom
    Yep, some foods just bother some people. For me, it is raw apples and pears. It causes a raw strong pain that feels like gluten would, but it is a completely unrelated reaction. It's just a food that doesn't agree with me. I too think it's odd that a nutritionist would warn you about grapes unless you had already complained that grapes bother you?
  7. nvsmom
    Oh I'm sorry. I'm hoping that she just doesn't understand how bits of flour can make you ill. Could you show her our replies? Perhaps seeing it in print would help. If she does actually understand then she is knowingly doing things that could hurt her child rather than learning how to bake and cook gluten-free. That's just sad. If there is no way...
  8. nvsmom
    Welcome to the board. I'm sorry your son hasn't been feeling well. Only go gluten-free if you are satisfied that his testing is complete. He must be eating gluten in the 2-3 months prior to (blood) testing for it to be accurate. These are all of the celiac disease tests: tTG igA and tTG IgG (tissue transglutaminase) - most common tests DGP IgA and...
  9. nvsmom
    Having wheat flour in the house just seems like a very very bad idea. It poofs out and lands everywhere. It's probably in the utensil drawer, landing on fruit, and inside the sugar bags or canisters. I don't think airborne crumbs of food are a problem, but fine flour could be. Could your mom stop using wheat flour? I don't know... Perhaps there are...
  10. nvsmom
    (Hugs) Try not to worry too much... Easier said than done, right? Staying gluten-free will help keep autoimmune caused inflammation down which will help prevent the development of further AI diseases. If you were continuing to eat gluten, you would be putting yourself at a greater risk. Unfortunately you do have a slightly higher than normal risk of developing...
  11. nvsmom
    Most celiacs can't be diagnosed except from the biopsy. Things usually look good, if sometimes a bit inflamed, while they are doing the endoscopy. Good luck to your son.
  12. nvsmom
    As the others said, unfortunately it looks like you have celiac disease. Your tTG IgA result of 66 is over 15 times the upper limit of normal, abd your tTG IgG result of 55 is almost as bad at over 9 times the normal upper limit. Those are about as certain as you can get. As you said, the tTG IgA can on rare occasion (less that 5% of positive tests...
  13. nvsmom
    I hope the DGP tests give you a clear result, but remember, some celiacs are negative in blood work with positive biopsies and others may have positive blood work but a negative biopsy. It is usually (although not always) best to assume one has celiac disease if they have a positive celiac disease test of any kind, including biopsy. So your son...
  14. nvsmom
    I don't have Raynaud's but I did have the very dry, scaly skin (especially on my legs). The dryness was caused by hypothyroidism (Hashimoto's), and once I was adequately treated (which took close to a year) the dryness disappeared quite suddenly. If you want to check for Hashi's, ask for the TSH (should be near a 1), free T4 and free T3 (should be in...
  15. nvsmom
    You could be getting glutened at home. It's hard to say. Most celiacs find it much easier and safer to have a gluten-free home, but many celiacs live safely with gluten in the home; you just need to be careful. The DGP IgA and DGP IgG (deaminated gliadin peptides) are tests that can be used to test for gluten-free dietary compliance. These tests tend...
  16. nvsmom
    Oops. I forgot to mention that getting nutrient levels checked is a good idea for celiacs. We are often low in: B12, D, A, K, Mg, Ca, Cu, Fe, Zn, and ferritin.
  17. nvsmom
    Welcome to the board. The tTG IgA is not a perfect test. When positive, it is 95% specific to celiac disease but its sensitivity can be as low as 75% (it can miss up to 25% of celiacs). The EMA IgA is very similar to the tTG IgA test except that it is positive when the damage becomes more advanced. It is quite unusual to have a positive EMA IgA when...
  18. nvsmom
    Yes, I just carry peanuts but it is enough peanuts to feed me and three gluten-free boys in case lunch is delayed by an hour or so. LOL
  19. nvsmom
    Ugh! Terrible article! Sourdough is safe for celiacs???? No! Longer rising time might make bread safe for celiacs? NO! And this?? Ugh!! This is NOT true... At All! How did this article get on celiac.com anyways?
  20. nvsmom
    Peanuts.
  21. nvsmom
    Genetic tests aren't really useful, in my opinion. All they do is show whether you are one of the 30% of the people world wide who have the DQ2 or DQ8 genes; it doesn't tell you if you have celiac disease. Yes, 97% of celiacs do have the DQ2 or DQ8 genes, but 3% do not. A positive genetic test just tells you if you are at greater risk of getting celiac...
  22. nvsmom
    I usually hear 1/2 to 2 slices of bread per day, or equivalent, for 8-12 weeks; eat 2 slices if doing a shorter challenge or less if a longer challenge. The tTG igA is not enough, but you probably don't need to do the total IgA (control test) again if your ranges were well within normal limits. Also get the tTG IgG, DGP IgA, DGP IgG, the EMA IgA (especially...
  23. nvsmom
    Ditto Kareng. If you want to test, you should be eating gluten prior to the test. If you choose to skip the test, stay gluten-free like a celaic would. No cheats. No letting your vigilance slacken, which would probably involve eating out less than many people do. Best wishes in whatever you decide to do.
  24. nvsmom
    The most common celiac disease test is the tissue transglutamine immunoglobulin A (tTG IgA). It can miss up to 25% of celiacs so running as many tests as possible is helpful. These are all the tests: tTG IgA and tTG IgG DGP IgA and DGP igG (deaminated gliadin peptides) EME IgA (endomysila antibodies) total serum IgA (control test) AGA IgA and AGA IgG ...
  25. nvsmom
    What a tough time he has had. Thanks for sharing his story.
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