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Fenrir

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

Everything posted by Fenrir

  1. Fenrir
    You can doubt it but the studies are pretty clear that it does. It's not a cure and does not replace a gluten-free diet but I have used it myself (and others on the forums) and the number of times I've had reactions from cross contamination are zero since I started using it.
  2. Fenrir
    I have used GliadinX and it seems to work. I believe most of the suppliers are in India and China. But since it's also used as a clarifying agent by wine makers it could be available in the states and/or Europe too.
  3. Fenrir
    Actually, no the TTG IgG has a specificity of 96% when total IgA sufficient & 98%+ when IgA insufficient. So there by be a 2-4% chance of some other cause but that's why we generally get EGDs done.
  4. Fenrir
    This us a really long thread so forgive me if I missed it but have you been seen by a neurologist? There are neurological disorders that sometimes have more prominent GI symptoms when the neurological issues are the primary issue. Also, do you have anxiety or other psychological issues? Also it sounds like they ruled out whipple disease, did they...
  5. Fenrir
    I think you probably are eating enough to get positive tests, but you have to keep doing that until you are officially diagnosed which may include a biopsy.
  6. Fenrir
    If you have one autoimmune disease it increases your odds of getting another one so many Celiacs end up with another autoimmune disease at some point. The most common ones Celiacs get are: Autoimmune Hepatitis Diabetes, Type 1 Autoimmune thyroid diseases Rheumatoid arthritis Sjogren’s syndrome Lupus About 15-20% of C...
  7. Fenrir
    Well, without the proper testing being done you can't be sure if it is Celiac but you also can't rule out that you some other GI problem. So getting the proper blood tests and EGD could help rule out or diagnose another problem if it's not celiac disease. It's possible to be negative on an EGD and still have celiac disease or NCGS but it's fairly rare.
  8. Fenrir
    Well, if you are positive on TTG, even weak positive it's something like a 98% chance you have Celiac Disease. So odds are that it is Celiac, the EGD is just to make sure that the 2% isn't something else.
  9. Fenrir
    No, there's a difference between dissolve and degrade. Dissolve just means to turn into a liquid, degrade is breaking the substance down chemically into another substance or substances. If it's being degraded, like AN-PEP does to gluten, it's no longer gluten when it gets to the small intestine.
  10. Fenrir
    Nobody is suggesting replacing a gluten-free diet with AN-PEP, that would be an inappropriate use of the product. As I stated in another thread, the reason why AN-PEP isn't FDA approved or endorsed by major Celiac organizations has more to do with the financials than if it's effective or not. Blood pressure drugs aren't particularly effective...
  11. Fenrir
    If the gluten isn't degraded or destroyed, liquefying the food that contains it would likely result in a faster reaction because it would reach the small intestine faster.
  12. Fenrir
    It would probably really depend on if you are getting exposed to gluten you're unaware of or not. If your levels are just on the upper end of normal and it has nothing to do with gluten exposure then it probably won't make any difference if you take GliadinX. IME, you still need to know where you may be getting exposed in order for GliadinX to be useful...
  13. Fenrir
    You rely on the major celiac centers too much, IMO. They basically wouldn't back anything not FDA approved as a prescription medication. There's little money to be made treating such a small number of people that can also be treated with no medication at all. If there is no money to be made, no major pharma companies are going to pay the amount it takes to...
  14. Fenrir
    @cyclinglady I'm not sure what you'r reading but at least three of the studies on they list on the site are on humans. One is randomized double-blind controlled....? My only concern about the product is that if in capsule form does it get mixed well enough in the stomach to be effective. I'm not and expert in stomach function but that is the question...
  15. Fenrir
    @Gemini I think in the 15 years since you've been to a GI specialist they've gotten better as far as Celiac Disease goes. Most GI doctors are well aware of the proper diagnosis of celiac disease now, you may still run into an older GI doctor that hasn't been keeping up on their education but try seeing younger ones, they're genereally more well versed...
  16. Fenrir
    My response wasn't targeting you, you weren't claiming he was diagnosed with PTSD or anything like that. It was in response to the person who was arguing you could get PTSD from celiac disease. I took no offense to your post. Sometimes people don't know what to call things, nothing wrong with that. I have a pretty extensive knowledge of medical terms but...
  17. Fenrir
    You really don't have to go any further. You have celiac disease, just go gluten-free. If you want an official DX on file then you'd need to see a GI who understands diagnosiing Celiac Disease. Columbus should have several good GI doctors.
  18. Fenrir
    As far as testing goes I would look at the link below. It will give you everything you need to know, in fact print the page and bring it with to the doctor: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/
  19. Fenrir
    I don't think your GI is very knowledgeable about the genetic testing. HLA-B27 isn't the best genetic test for celiac disease, it's really a test not specific for celiac disease. HLA-DQ2 and DQ8 are much better, the vast majority of celiacs will have one or both of those genes. HLA-B27 is simply not the genetic test that is the standard for diagnosing...
  20. Fenrir
    No offense, but PTSD from celiac disease is pretty unlikely. https://www.mayoclinic.org/diseases-conditions/post-traumatic-stress-disorder/symptoms-causes/syc-20355967 Anxiety? Certainly. Adjustment disorders? Sure, maybe. PTSD? Not likely. Might be someone has PTSD from some other event in their life and the anxiety caused...
  21. Fenrir
    Yes, realistically, there are about 4 places in our town that I eat at but none of them are truly gluten-free. They are places that have items on the menu that are made of gluten-free ingredients but there is a risk for cross contamination. I've worked with the restaurants to give them advice on how to make their process more celiac friendly. #1- When...
  22. Fenrir
    You'd be wasting your money on that scope if you are gluten-free for 5 months, there's a pretty goo chance it would come up negative even if you were a celiac at that point.
  23. Fenrir
    I might expect this reaction from a young kid but this is unusual for an 18 year old. As someone with family members with PTSD from military service I'm going respectfully oppose the comparison. PTSD gets tossed around a lot these days to situations that it doesn't apply. If anything it would be an adjustment disorder: https://www.mayoclinic.org/diseases...
  24. Fenrir
    I don't think that reaction necessarily has to do with celiac disease. I also wouldn't call it PTSD. I would bet there is something else going on mentally that's the cause and seeing gluten foods just is triggering him when he's already agitated. People can have high anxiety when they are celiacs and are exposed to gluten but if he's been gluten-free...
  25. Fenrir
    I've started seeing "Gluten Sensative" & "Gluten Friendly" at a lot of places lately. In restaurants I believe the use is because they cannot guarantee things won't get cross contamination due to shared space, grill...ect. Essentially it means that the recipe includes nothing with gluten in it but it could be cross contaminated.
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