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MitziG

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Everything posted by MitziG

  1. MitziG
    Yes, she needs to keep eating it. Blood tests often give false negatives, so if you still feel she has a problem with gluten AND WANT THE OFFICIAL DX, then she will need a biopsy of her duodenum. (This can also give a false negative however, if they don't biopsy the correct spot.) Also keep in mind she may not have celiac disease, but may very much be gluten...
  2. MitziG
    First, breathe! Stop worrying about what is beyond your control. If she tests positive for celiac, you will do what the rest of us have done- you will learn! Yes, there will be mistakes and setbacks, in the beginning, it is overwhelming. But after 6 mos or so it will be second nature. Now, if the test is negative, you are NOT at square one. Chances are...
  3. MitziG
    I am sorry I misunderstood. Relieved to hear you will put her on the gluten-free diet regardless of biopsy. If the results are irrelevant to you, I would probably do the biopsy simply to get a "benchmark" of where she is at internally in case there are problems down the road that you would need a comparison. As for your picky 4 year old, one of my kids...
  4. MitziG
    B12/folate, B6, serum iron AND ferritin, vit A, E and K
  5. MitziG
    Well, ask yourself- what if the biopsy is negative? Are you really going to disregard that blood test when you know biopsies frequently MISS celiac? You would be setting her up for future health issues for the sake of being able to indulge at birthday parties. Its not worth it. As for the 4 yr old- the fact that the only foods he wants to eat are gluten based...
  6. MitziG
    I think you should have been diagnosed as a baby if you had blunted villi back then! Many here, including myself, can relate to your frustration of being dismissed byy doctors. I went through so many I began to wonder if maybe I just really WAS a hypochondriac. Since being dx with celiac my health has done a complete 360. I never dreamt I could just feel...
  7. MitziG
    Celiac is very, very common, and it is a shame most doctors don't realize that. If you are to get tested, start eating gluten again now. Your antibodies drop very quickly. Make sure to request the specific list of tests you find on this forum- most doctors won't do all the tests. Lastly, keep in mind false negatives are very common. If the tests say you are...
  8. MitziG
    Good idea- except I noticed I am breaking out even from dairy free chocolate. Also from soda- so may be chocolate, sugar, caffeine...or all 3! Trying to eliminate all inflammatory foods now until I get to the bottom of this!
  9. MitziG
    You are in good hands. When it comes to dealing with "weird stuff" Rochester is the place to go. They will not leave any stone unturned! Hope you get some answers soon!
  10. MitziG
    You have celiac disease. False positives on the blood tests are unheard of. However, most doctors won't dx it without a confirming biopsy. Don't know why. And yes, you do have to be eating gluten for that. So, if you want the official dx, wait for the biopsy. But be assured, regardless of what the biopsy indicates (they can easily miss celiac) you DO...
  11. MitziG
    Oh, and Meg123- you have celiac disease. Your doctors are clueless. Whatever the biopsy shows, do not let them convince you otherwise!
  12. MitziG
    Deano. If you have been dx as celiac, the answer is no. No gluten. Ever. For the rest of your life. Even if you have no visible reaction to it, your immune system knows it is there and it will begin attacking your body. If you eat even a tiny bit of gluten, your immune system will kick into overdrive for at least the next 3 months. You will set yourself up...
  13. MitziG
    I know my daughter went through withdrawal for months, and like you, she was a silent celiac. Perhaps there is a correlation? Rest assured, it gets better!
  14. MitziG
    Has your daughter been dx as having celiac disease already? Your post isn't clear.
  15. MitziG
    Definitely test FIRST. If she responds to gluten-free, putting her BACK on gluten will be very difficult for you. She may have a violent reaction to it (bad rashes, vomiting, etc) even after only being gluten-free for a week. Yes, testing can be notoriously unreliable, especially in children, so don't let the results influence you to not try the diet...
  16. MitziG

    ARCHIVED Doctors Who Have No Clue

    MitziG replied to BabsV's topic in Doctors

    My daughter has this same type of pain, varies from nagging to severe, upper left side but occasionally affects the right side. We have been at a loss too. She has been gluten-free for a year, and was asymptomatic at the time of dx. Stomach pain came AFTER she went gluten-free. Go figure. So, no answers, but she does get a lot of relief by drinking a teaspoon...
  17. MitziG
    Definitelt see your GI for a follow up to make sure it isn't still gluten messing you up! I have heard a lot on this forum about digestive enzymes- recently started researching them as well. Might be something to look into. Even if you aren't assaulting your gut with foods it doesn't like, your digestive flora can be so messed up from when you WERE eating...
  18. MitziG
    You mentioned you eat cheese- a lot of celiacs are dairy sensitive, and you may not be having a noticeable "reaction" but it could be causing the malapsorption. Recently discovered this is my situation. Also, you could have refractory sprue- but that isn't super likely. Has your dr checked your antibodies? That is a good thing to make sure you aren't getting...
  19. MitziG
    If your symptoms go away when you are gluten-free, and come back when you eat gluten, then I would feel safe saying it isn't cancer!
  20. MitziG
    Oh, now I see your daughter was dx as well.. good! She has just been spared alifetime of freaky health issues! I think you will find yourself feeling much better a year from now!
  21. MitziG
    Smart hematologist. I would be inclined to agree with him! If he can give you the dx, or if his opinion is enough for you, I would say go gluten-free. Most of your symptoms should resolve- with time. Unfortunately, you acquired sjoren's already. fortunately, you do not seem to have Hashimotos. Going gluten-free can stop or slow the progression/development...
  22. MitziG
    Welcome. I am glad you have found relief. As long as you do not need the reassurance of a dr to tell you what you already know, I see no need for testing. Remember too, the vast majority who are gluten intolerant will not be dx as celiac, for various reasons, so there is no guarantee a test would be psotive for you. Gluten intolerance is every bit as real...
  23. MitziG
    Because your 13 year old has low IGA, the negative celiac tests are not valid. he has to have IGG testing. As does the 7 year old. That they are both IGA deficient is highly suspicious of celiac as well. Don't let your dr dismiss this. If he will not order the correct tests, find a new dr who is more knowledgeable.
  24. MitziG
    I concur with the above posters- TEST FIRST. Then, regardless of results, give gluten-free a fair trial period.
  25. MitziG
    If it were me, I would just call myself celiac and go with it. As for college....could be tricky...but, you may get a doc to dx you without the tests based on response to the diet and your history. Dr shop if you need to! I question whether college accomodations wud be worth it. I wouldn't trust a school cafeteria to cook me gluten-free meals without contaminating...
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