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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    It could definitely be celiac disease or non-celiac gluten intolerance (NCGI). Do you know what celiac tests were run? The tests are not 100% sensitive, and neither is the endoscopic biopsy (about 1 in 5 are missed), so the tests will miss some celiacs. The more tests run, the more likely you are to be caught. The full celiac panel is: tTG IgA...
  2. nvsmom
    5% of celiacs are deficient in Serum (blood) IgA, which is more than in the regular population. Immunoglobulin A (IgA) is a part of our immune system found in the mucosal linings (mouth, gut, etc). The celiac tests (as I understand it) measure the inappropriate immune response that occurs when a celiac eats gluten over time. If that part of the immune system...
  3. nvsmom
    No problem. Two years ago someone on this board gave me all the advice I passed on to you. It's always good to hear from other people going through the same things. Generally speaking, a positive celiac test is a positive and you have celiac disease. False positive are rare. It's the tTG IgA which seems to have the most, and that's at about 5%. Those...
  4. nvsmom
    It really depends on the person. Some people never get an obvious symptoms, and others are bedridden. The variation is huge.
  5. nvsmom
    Reference ranges vary a great deal between labs, GeorgeDaniel so don't trust AJO21's numbers even if the units are the same. My lab's reference ranges for the tTG tests were 0-20 so those results would all be negative at my lab. Others go from 0-10, 0-4, or even 0-1.0, AJO21 - 5% of celiacs are deficient in IgA, which is higher than the regular population...
  6. nvsmom
    Eat the gluten if you can, but cut back. You only need the equivalent of 1-2 slices of bread per day, and that includes noodles, cereals, buns, cookies, soups, etc. BUT if you feel horrible, seriously horrible, call the doctor and cut gluten for a few days. Not eveyone can make it through the gluten challenge, but those people do not get accurately tested...
  7. nvsmom
    The tTG IgG has a really low sensitivity, it misses over 50% of celiacs as seen in this article: Open Original Shared Link[tt_news]=172034 When it is positive though, it has a high specificity - meaning a positive is caused by celiac disease. Your is awfully close so I would guess that something is up. I agree with Nora that more testing could be...
  8. nvsmom
    I get puffy eyes quite often but I have been gluten-free for a couple of years. I have hypothyroidism so I think that is what causes my problem with puffy eyes. Best wishes.
  9. nvsmom
    Welcome to the board. Someone around here said IBS is doctor-ese for "I Be Stumped". IBS is not really a diagnosis but more of a description of symptoms. It is sort of the equivalent of going to the doctor with stomach upset and having him declare that we officially have stomach upset, just with a medically accepted phrase. LOL There are a LOT...
  10. nvsmom
    Migraines can be pain-free, as weird as that sounds. Often the day before a migraine I get tired, slow, cranky, and I see zig zags. My husband gets really nauseated from his, but I think that is from the pain. Sounds and bright lights can be really tough to handle too. Very weird. Gluten causes migraines for me too. Tingling could be peripheral neuropathy...
  11. nvsmom
    Page 8-9 of this report discusses the Marsh classification. Marsh 2 is often considered to be early celiac but some doctors won't call it celiac disease until the celiac has done some real damage to himself, as seen in Marsh 3... It's sort of like not declaring that someone has a serious peanut allergery until after they have eaten enough peanuts to become...
  12. nvsmom
    Getting hips above my head helped me somewhat. Walking or jogging, if you can stand up straight, helped too.
  13. nvsmom
    A food journal may help you pin point offending foods. I realized that I had problems with milk and can not handle some raw fruits (apples, pears) and veggies.
  14. nvsmom
    I would personally keep him gluten-free and feeling well. Two of my kids had obvious but nt too severe celiac symptoms but they tested negative. I have celiac disease, as do other family members, so I made them gluten-free. I tell everyone they are celiacs and treat them as such. They are feeling better but do not have that official diagnosis.... It makes...
  15. nvsmom
    I am glad you feel a bit better about it all. . Let us know what tests were run and what you decide to do. Glad to have you with us.
  16. nvsmom
    That's too bad you have to wait so long to see the GI. For the sake of test accuracy, I agree that it is smart to keep eating gluten - as long as you body can take the punishment that is. A gluten-free trial really should be a few months. At two weeks gluten-free I was just inching off withdrawal ( of gluten or carbs or sugar... Who knows) and I was...
  17. nvsmom
    Your doctor's office is not doing a good job of communicating with you. . I think you might be like me and experience stress (to the point of confusion - for me) when you see the doctor. Perhaps get a hard copy of the labs to read? I know that having a copy of the lab to look at really helps me think. I do not know why a celiac test would show liver...
  18. nvsmom
    Glad to help. Let us know what you all decide to do.
  19. nvsmom
    I personally found that I wasn't more sensitive, but that I noticed it more because I am no longer in a state of constant illness and bloating.
  20. nvsmom
    Unfortunately eating gluten-free costs a bit more, even if you do use whole foods and do your own cooking. If you had chosen to use processed or boxed foods, it would cost even more. About all you can do is buy the gluten-free flours and ingredients in bulk. Don't use mixes. Try to find inexpensive sources of fruits, veggies and meats - maybe a farmer's...
  21. nvsmom
    Can you get a hold of what tests were done? Some doctors run the old tests, misinterpret the results, or only run one test when more should be done. You do have some symptoms that could be attributed to celiac disease or NCGS (non-celiac gluten sensitivity) so it is worth rechecking. If you think it could be NCGS, go gluten-free for a few months and...
  22. nvsmom
    Welcome to the board. She has one positive celiac test (it is not unusual to be positive in only one test- that's why they run so many). Her t-transglutaminase (tTG IgG is 13 when normal is 0-5; she is almost 3 times above the normal range which is fairly significant. That is not an overly sensitive test for celiacs, meaning it often misses celiacs, so...
  23. nvsmom
    (HUGS) Oh dear. Get her tested. Tomorrow. As you said. celiac tests are only accurate while eating gluten, and she has been eating gluten! If you listen to the doctors and take her off gluten before testing, she will have to resume eating gluten (about one slice of bread per day) for 2-3 months before getting tested. From what you have said, that would...
  24. nvsmom
    Welcome to the board. You've been dealt a tough hand with a double diagnosis. Sorry to hear about that. You are correct that Crohn's can cause villious atrophy in the small intestine just like celiac disease can. The problem lies in that the blood tests for celiac disease are not fool proof. The sensitivities (the percentage of celiacs found to...
  25. nvsmom
    Do you happen to know what the ranges are for those labs? That can be helpful. The tTG IgA and EMA IgA are very very similar tests. I think in two years of being on these boards, I have only seen one situtation where someone had a positive EMA IgA when the tTG IgA was negative; in fact they usually do not run that test if the tTG IgA was negative. ...
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