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JoshB

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by JoshB

  1. JoshB
    Getting a blood test after that long gluten free is a pointless waste of money. Your doc might humor you and test for thyroid antibodies, but it's more likely that he'll ask to go back on gluten for a few months to do a proper celiac blood test first.
  2. JoshB
    That's certainly suggestive of celiac disease. Unfortunately with only level 1 marsh changes it's not even close to diagnostic, and I think your location may raise the likely-hood of other the other potential problems. At the age of one I don't think that a blood test would be likely to be effective; his immune system wouldn't have developed to the point...
  3. JoshB
    I'm not sure why that would necessarily be an understatement. 1/133 comes from the red-cross study. You might get more if you take all people with wheat and gluten issues, not just celiacs. I think that the 1/133 study is probably an over estimation for actual celiac disease, though. Caucasians are strongly over-represented among blood donaters, and the also...
  4. JoshB
    I don't think that being 70% gluten free is going to help you any. It might affect your tests. The official answer is that to get an accurate test you should be eating at least four pieces of bread for three months. The "real" answer is "nobody knows".
  5. JoshB
    I'm not sure at all, but I'm so tired of wasting money and time, and there are so many co-morbid conditions that kind of fit I don't even know where to start looking if I was going to. I went to the gastroenterologist mainly for this purpose; my assumption was that he would be experienced in dealing with celiac disease as a whole and know best how to proceed...
  6. JoshB
    It's just economics. Most docs when not given some incentive (a kick back from the drug company is very common for prescription-writing for instance) will do what they can to save you money. In the worst case, let's say they decide to screen everyone. They'll get a positive about one every two hundred people. So at $250/person, that single diagnosis cost...
  7. JoshB
    Very, very unlikely but technically possible. Still, what have you got to lose by trying the diet to see if it helps you? If you're on it for a month and feel better, well good for you. If that fails you might go in for allergy testing, or try more extreme elimination diets. Maybe you're just allergic to something. If you could do two or three days...
  8. JoshB
    Did you perhaps stop eating gluten before your tests? Your anti-gliadin results are somewhat low, but these tend to drop faster than other anti-bodies. Your ttg-igg is highly suggestive of celiac disease. You should certainly talk with your doctor about it as there are a couple of other possibilities. But, yeah, you almost certainly have it. Very odd that...
  9. JoshB
    I know three other people with celiac disease. Two of them have torn at least one rotator cuff. I've done this as well. Is it just a freakish coincidence, or is this a very common problem with celiac disease? Anyone else had this happen?
  10. JoshB
    Well, I definitely haven't been as careful as possible. I normally eat whole foods that I've made myself, but I do eat out. I don't want to become a hermit. My antibody levels have fallen to very low values, doesn't that indicate that I'm doing well enough on avoiding gluten?
  11. JoshB
    I think I'm good on vitamins, though the lab screwed up the "B" tests and wanted to draw again, but I never did go back in. I'm assuming that since everything else is OK, that B is good too. I'm about thirty and have probably had celiac disease for twenty five years, so that's not as bad as some, but apparently bad enough to accumulate issues. Everything...
  12. JoshB
    So, I finally got fed up with my GP and went to see a gastro. Going gluten free has made my stomach about 50% better, but hasn't really cleaned up all the other problems that seem to go along with it. The gastro, of course, wants to do a endoscopy to evaluate how much damage remains and whether any further intervention is required, but he says that there...
  13. JoshB
    If you live in the US your certainly can. So many doctors have their heads up their butts that we actually made a federal law that requires that they give you any information pertinent to your own health upon request.
  14. JoshB
    So... none of that is really part of a celiac panel, and you should probably discus those results with your doc. Your DQ2 type doesn't rule out celiac disease, but it certainly doesn't diagnose it. About 30% of Americans have your DQ type.
  15. JoshB
    It certainly sounds like celiac disease, but then a lot of things do. That's one of the reasons it's difficult to diagnose. You should just be able to ask for a "celiac panel"; you really shouldn't have to know anything more. Some people also like to have their genetic "DQ" values determined, as this can help screen out celiac disease and also help you...
  16. JoshB
    That is a very good book. Also, get blood work done now before you go gluten free or you might regret it later.
  17. JoshB
    Yes, but that doesn't mean much. There are many, many things that occur with celiac disease. It's a "great mimicker".
  18. JoshB
    There are many things that can cause level I and II changes, but few that can cause level III. So it depends on how "bad" your biopsy was. If it was really level III changes -- which is normal for long term celiac disease, then the biopsy should be reasonably dependable. Though, it's apparently pretty easy to orient the sample the wrong direction on the microscope...
  19. JoshB
    Yes there are varying degrees of both illness and sensitivity. Some people have all the classic symptoms and a half dozen of the weird ones. Some people only find out on accident and never realized they were having any stomach issues at all. The only study I've ever seen on sensitivity found that people started reacting at somewhere between ten and fifty...
  20. JoshB
    You doc wants you to do a celiac blood test rather than a genetics test because even in the worst case for genetics results, it still does not mean you have celiac disease. It's more useful if you had close relatives, because if it might help you estimate risk for you family members. There's certainly nothing stopping you from trying gluten free yourself...
  21. JoshB
    That's very strange, but you know that you can just order the test yourself, right? There are a number of testing companies that will work with you rather than your doctor. The downside is that you won't have any insurance reimbursement -- cost is about $250.
  22. JoshB
    I'm very ill the first day -- generally a very painful and upset stomach. The second I have an upset stomach, and possibly some other elevated symptoms. From the third day to about a week out I may or may not be just a little "off". I felt much worse for more than a month after starting gluten free. It would not surprise me that you're not feeling great...
  23. JoshB
    False positive biopsies are possible, but they would could involve some other fairly serious issue, and you ought to know if that was the case. The more common cause of false positive is lab mistake; apparently it's really easy to flip the sample the wrong direction and hide the villi (Open Original Shared Link). Maybe that's what the doctor thinks happened...
  24. JoshB
    --------------------------------------- *Tissue Transglutam AB IGA, Result 44H TtG-IgA is the normal go-to test they use. Ranges vary between labs, so it's hard to say how positive you are. This is a machine run test. They have a slide prepared with human tissue trans glutaminase then they drop your blood on and add a fluorescing dye that only sticks...
  25. JoshB
    Deaminated gliadin doesn't seems to be more specific or sensitive than ELISA TtG-IgA. It's just the new kid on the block. Though there is a little evidence that sometimes it will show a positive in young children that other tests would miss. Open Original Shared Link
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