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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    That's too bad that it hit you so hard. I suppose that is an answer in and of itself. Best wishes with the gluten-free diet again. Hope you are well soon.
  2. nvsmom
    Good luck with the gluten challenge. i hope it isn't too hard on you!
  3. nvsmom
    I'm a celiac. I had my kids tested for celiac disease after I was diagnosed. The only test available to us was the tTG IgA and all three of my boys tested negative on that but I suspected celiac disease in at least two of them so I made them (and my home) gluten-free, and I'm glad I did. My oldest and my youngest had their suspicious symptoms improve dramatically...
  4. nvsmom
    I don't react to gluten more severely now than when I was undiagnosed. Not at all. I suppose I might notice it a bit more because I am not used to feeling sick all the time now a days, but it is definitely not more severe. If you do eat gluten and you have not obvious reaction, then you have your answer - you'll have to go back to being extra strict...
  5. nvsmom
    NCGS is sometimes found to be "early" celiac disease - the illness just hasn't advanced enough to show up on testing. That's not true in everyone with NCGS, but for some it is. There is not really any such thing as mild celiac disease. Some people present with stronger symptoms but those are just symptoms, there is a LOT going on inside like chronic...
  6. nvsmom
    Poor little guy. Unfortunately doctors do that frequently. We are told to go home, eat gluten, and come back when you are sicker so they can have proof (via blood test or endoscopy) that we are sicke enough to go on the "restrictive and hard to follow" gluten-free diet. It is just cruel... A low serum IgA means that any IgA based celiac testing...
  7. nvsmom
    Try to ensure they run as many tests as possible: tTG IgA and IgG DGP IgA and IgG EMA IgA total serum IgA (control test) AGA IgA and AGA IgG (older and less reliable test) Let us know your results. Good luck!
  8. nvsmom
    Celiac disease is not an allergy. It is an autoimmune attack which is triggered by ingesting gluten (found in wheat, barley, rye and some other grains). Wheat allergies are very different than celiac disease, and have the possibility of posing a more immediate health risk if ingested. If you have a wheat allergy, you can still eat gluten as long as it is...
  9. nvsmom
    I'm sorry you had to go through all of that. Best wishes with the gluten-free diet. I hope you are feeling well soon.
  10. nvsmom
    Unfortunately you are right. There is no easy way to go back and get tested now. This happens to many people when their doctors drop the ball - I'm guessing you'll hear from a few people that this happened to as well. Blood tests will require 8-12 week gluten challenge for the most accurate blood test results. The endoscopic biopsy needs 2-4 weeks...
  11. nvsmom
    Oh geez. Her doctors really blew it, didn't they? Good luck with going gluten-free. I hope she has a speedy recovery. Oh, and you should get the rest of the family checked every 2 years as celiac disease has a genetic component to it.
  12. nvsmom
    My celiac symptoms would wax and wane. They were not static. Do not dicount them just because they change - I think it's a good idea to get tested. Dizziness upon standing is called postural hypotension. It can also be linked to adrenal issues. Could be something to mention to the doctor. Good luck. And ditto NatureChick - don't go gluten-free...
  13. nvsmom
    Welcome to the board. Benn. It sounds like gluten could be an issue for you - I think you are on the right track. However, you might want to consider being tested for celiac disease before you go gluten-free. Eating gluten-free will eventually cause all celiac tests to show a negative result once the autoimmune reaction finally stops. To get a positive...
  14. nvsmom
    I was glutening myself with small amounts about a year and a half ago - a few french fries with wheat starch on them off my son's plate every few days. I slowly felt worse and worse but I did not have a sudden intense reaction; my reaction snuck up on me.
  15. nvsmom
    Yeah, splenectomies don't work for everyone. I have read some people have multiple spleens and that keeps killing off the platelets. I assume the splenectomy would not work for those whose ITP is not caused by an autoimmune attack directly on the platelets - for those whose platelet numbers plummet for other reasons. I was pretty lucky. One of the lucky...
  16. nvsmom
    According to the following site, the specificity of the tTG IgG is 95% so a positive that high is most likely due to celiac disease.Open Original Shared Link[tt_news]=172034 I would assume celiac disease at this point. I agree that you might want more blood tests and/or and endoscopic biopsy. The rest of the celiac tests are tTG IgA and tTG IgG (repeat...
  17. nvsmom
    That's just.... Wow. Really disturbing. I pity his patients who haven't put in the time to educate themselves like you have.... Wow.
  18. nvsmom
    YEAH! LOL
  19. nvsmom
    Best wishes with going gluten-free.
  20. nvsmom
    I have ITP and celiac disease. I am pretty sure I have had celiac disease since infancy although it was diagnosed in my late 30's. I developed a pretty severe case of ITP when I was 18. The doctors were unable to control it with meds and steroids so I had my spleen removed a few months later. Luckily, that seemed to do the trick and my counts are always...
  21. nvsmom
    I agree with Lisa. With a family history of celiac disease, and a positive celiac disease test - it is celiac disease. The tTG IgA can have false positives but they are rare (5%) and occur in weak positive results whereas your results are over 7 times the normal range - not weak at all. The biopsy is not specific to celiac disease, There are many...
  22. nvsmom
    Low platelet count can be related to celiac disease. Usually it will improve with the gluten-free diet but occasionally it is a result of an autoimmune attack (ITP) and can be life threatening if platelet numbers dip too low. It's a good idea to keep an eye on that by getting it retested in a few months. In the meantime, if he has increased bruising, fatigue...
  23. nvsmom
    Welcome to the board. Like Ruth said, not everyone makes it through a gluten challenge. Some have relatively few symptoms whereas others can not function. If you think you will be in the latter group, I would advise skipping the testing. When the test results come back positive you'll just have to go back to what you were doing in the first place...
  24. nvsmom
    Yeah, that's a tough spot. As I see it, you have three options: Go gluten-free. 100%. Assume she is a celiac and be strict so she will get well and stay well. Change the toaster, get new utensils and pans that are cracked and scratched and could have gluten in it. Make the whole family gluten-free if possible. Minute, tiny amounts of gluten can...
  25. nvsmom
    The biopsy is usually pretty smooth sailing. Most people around here had no problem at all beyond a slightly irritated throat - I've heard it's a good excuse for popsicles. . Your intestines do not have any nerves that would detect pain from the biopsy so you should have no intestinal discomfort. Some people feel a little off from the anesthetic, but I...
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