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Tallforagirl

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Everything posted by Tallforagirl

  1. Tallforagirl
    If you have problems that appear to be linked with consumption of gluten, then it's fair to consider that you might have celiac disease. It's a much more common condition than many people believe (an estimated one in 133 of US population has it). Because this is an autoimmune disease with a known dietary trigger, it's very easy for someone to "test" themselves...
  2. Tallforagirl
    Just to note that the Enterolab testing cannot diagnose celiac disease, only gluten sensitivity.
  3. Tallforagirl
    Two points come to mind: 1. If you were gluten-free for a number of years, even with a dietary error provoking an outbreak, would there be enough antibodies in the skin to make the biopsy test come up positive? 2. A genetic test can tell you if you have the right genes to develop DH/celiac disease, but cannot provide certainty that you have either....
  4. Tallforagirl
    Before you get carried away with "trying" the gluten-free diet, go back on the gluten for a month or so, get a celiac blood panel and possibly an endoscopy, then if it's all negative, you can "try" the diet, to whatever degree you feel it helps you. If the tests are positive, then sorry, but you don't get to "try" the diet 80-90%, you have to go 100% gluten...
  5. Tallforagirl
    Just wanted to say, I know how you feel. I too was very nauseous in the month or so before diagnosis, and up to 4 months after. I also suffered from fatigue. I sympathise, because I know that nausea can be worse than simply feeling sick, then throwing up. There's no relief, it's like being travel sick on a bus to nowhere. I don't know if it was coincidence...
  6. Tallforagirl
    Could you go a Bundy* and Coke for a more "manly" choice of drink? All plain distilled spirits are gluten-free - vodka, whiskey, rum, brandy etc. Another choice is cider, most pubs have Strongbow or Pipsqueak. *Bundaberg Rum, in case you Americans are wondering.
  7. Tallforagirl
    Remember that you don't have to wait for the biopsy result to take him off gluten. Once they have done the endoscopy, you can start him on the gluten-free diet right away. I'd still go ahead with the biopsy, regardless of whether or not you decide to take him off gluten beforehand. You may still get the "gold standard" diagnosis, and the biopsies could...
  8. Tallforagirl
    A good tip I read to deal with the "what if they just scrape off the offending item and bring the same food back," problem, is to keep hold of the meal they served you, until they bring you a fresh meal (you could just say your companion will eat it). Or if it's meat, you can make a small cut in it so you'll be able to identify it should it be re-plated and...
  9. Tallforagirl
    If the boy has not already been tested for celiac disease he should be, regardless of symptoms or lack of. As a sibling of a diagnosed celiac he has ten times the risk of the general population of developing it. DH is usually symetrical (appears on both sides of body in same place), and can be diagnosed by skin biopsy. When you have diagnosis of DH you...
  10. Tallforagirl
    Before you do so, consider pushing for an endoscopy/biopsy because it's perfectly possible to get a diagnosis based on biopsy alone, and plenty of celiacs test negative for blood, but positive on biopsy. There's also a chance there may be something else going on inside that needs attention. After that, regardless of the biopsy result, you can still go...
  11. Tallforagirl
    My tTG at diagnosis was >200, then after four months it was 132. My doctor said it can take a long while for tTG levels to normalise, and everything I've read supports this. Antigliadin IGA levels are far more reactive, and will rise and fall more quickly with exposure to gluten, so if you're worried you could ask for your antigliadin tests to be redone...
  12. Tallforagirl
    I'm not sure that 10 days is long enough for a "gluten challenge". There is debate about how long a challenge should last, but generally it's 4-6 weeks. It's worth considering asking for a biopsy, just to check everything else is okay. You may well get a diagnosis of celiac disease based on the biopsy results. Even if the biopsy result is negative, there...
  13. Tallforagirl
    You and your son's father, plus any siblings, should be tested for celiac disease as well. First degree relatives of someone with celiac disease have around a ten per cent chance of also having celiac disease, as opposed to one per cent in the general population. If no-one else in the family has celiac disease, it's up to you whether you all go gluten...
  14. Tallforagirl
    A substantial proportion of diagnosed celiacs are so because of screening following a relative being diagnosed. I got diagnosed because my younger sister was diagnosed first. She got diagnosed not so much because of symptoms of celiac disease, but because she was screened as a result of her diagnosis of rheumatoid athritis (also an autoimmune condition)....
  15. Tallforagirl
    Depends which blood test. The most specific for celiac disease is the anti endomysial antibodies (EMA) test, though often the tTG (anti-tissue transglutaminase) is done instead of EMA as it's more sensitive. tTG is still very specific. More info can be found here: https://www.celiac.com/articles/57/1/Interp...ults/Page1.html There can be problems with...
  16. Tallforagirl
    The problem with this is what happens to a person who maybe starts to feel better on a gluten-free diet, then their recovery stalls and they don't know why. If they didn't get tested for celiac disease while still on gluten they'd then have to go back on gluten if they wanted to get tested. It's great that you took a proactive step and asked to look...
  17. Tallforagirl
    I don't think it's helpful to say that tests for celiac disease are not ever conclusive, unless you're really sick (I'm assuming this is what you mean when you say "REALLY bad") because many people do test positive even when not showing symptoms, or where the damage to the gut is quite mild. Even in cases where the blood tests are falsely negative, it...
  18. Tallforagirl
    Good for you for pushing the issue, and I'm glad it resulted in you getting a diagnosis. How bizzare, to say celiac disease does not start with diarrhea, or if the child is not a toddler then it can't be celiac disease!! Hopefully those doctors who dismissed your suspicions have learned a lesson seeing their dismissiveness was proved to be unfounded....
  19. Tallforagirl
    Yep, I can. I can also tolerate wheat, barley and oats. But I'm a blood test and "gold standard" biopsy proven Celiac. Symptoms are not always an indicator of what is occuring on the inside. You've had the tests and they were negative. There's still a chance you have celiac disease. I guess you have to decide whether you believe you have it, and if...
  20. Tallforagirl
    Keep in mind that the Enterolab stool-test cannot diagnose celiac disease, only show gluten sensitivity. Erin, I would definitely get your older son tested. Lack of (many) symptoms does not mean anything. An endoscopy, should you decide to do it with the younger child, is pretty painless and would be under sedation. You might want to check with the...
  21. Tallforagirl
    Hi, You're right, there should be four tests included as well as the total IGA, but I think some doctors do just the tTG and the total IGA (mine did) The four are: Anti tTG IGA Anti gliadin IGA Anti gliadin IgG Anti endomysial antibodies (EMA) Total IGA is done to validate the IGA-based tests. If you're deficient in total IGA then IGA-based tests...
  22. Tallforagirl
    trents, refractory sprue is when the villi do not heal despite adherence to a strict gluten-free diet. I don't believe that symptoms or lack of directly co-relate to level of villi damage. When you mentioned the difficulty of getting an expert consultation, I remembered something I read on the main Celiac.com site in an article about celiac genetics by...
  23. Tallforagirl
    You may want to get a copy of those results and check what the actual numbers were. When I had a full blood count after diagnosis, I was told that my B12 levels were within normal range, however I had ongoing fatigue. Another doctor rechecked my results and saw that although my B12 was within the normal range, they were very much at the low end of the...
  24. Tallforagirl
    It's my understanding that the blood tests for antibodies can be quite variable in their accuracy in very young children. A biopsy of the small intestine could be performed and may provide a diagnosis, depending on how long she had been on a gluten-containing diet. If you haven't already, I'd certainly at least take her to a doctor and get her checked...
  25. Tallforagirl
    I agree, you will get used to what type of products to avoid, and what's (usually) a safe bet. However, it's best to still check ingredients each time you buy something, as ingredients do change. I had a session with a dietician early when I was first diagnosed and it was invaluable. If you're going to consult with a dietician, look for someone with expertise...
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