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NoGlutenCooties

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Everything posted by NoGlutenCooties

  1. NoGlutenCooties
    It depends. Many people see positive changes within the first week or two. For some it takes a bit longer. Some people also go through gluten withdrawal for the first couple of weeks during which time their symptoms actually get worse before they get better. I would give it a solid 3 months before giving up on it.
  2. NoGlutenCooties
    Just wanted to add that there have been a few times I've had to get graphic with people to get them to understand. I tell them point blank - I got cross-contaminated once and it was like getting food poisoning. Cold sweats, shakes, and several hours tethered to the bathroom. It's like a non-Celiac person voluntarily eating a flu bug. The dinner party...
  3. NoGlutenCooties
    Thanks guys! I don't think I'll be changing my screen name... NoGlutenCooties still fits the bill. Dirty rotten scoundrels...
  4. NoGlutenCooties
    I've been taking Metamucil every day for over 20 years - it works wonders for me. It is also gluten free. You may want to ease into it and take a teaspoon per day for a few days and then gradually increase the amount. It can cause gas and discomfort at first for some people until your system gets used to the fiber.
  5. NoGlutenCooties
    IMO... if you've been gluten free and had that kind of a reaction to the reintroduction of gluten then you are definitely Celiac and there's no point in doing a gluten challenge just to do a biopsy. And without the gluten challenge, the biopsy would be meaningless - at least from a Celiac diagnosis standpoint. "Nonspecific inflammation" just means that...
  6. NoGlutenCooties
    Welcome! If you had a positive blood test and you get symptom relief from being gluten-free, then my money is on you having Celiac. IMO... the nurse you spoke to sounds completely ignorant about Celiac and gluten intolerance. With Celiac, you cannot simply avoid "most" gluten and think that's good enough. You need to be 100% gluten free. No cheating...
  7. NoGlutenCooties
    I hear you. Not being able to safely eat out has been the hardest part of this to deal with for me. There are things you can do to make it "safer" but there's no way to be truly safe unless they are certified gluten free and actually know what they're doing. I just try to keep reminding myself that the trade off is that I get to be healthy. And kick osteopenia...
  8. NoGlutenCooties
    Hi MoonTheLoon and Welcome! You may get relief with digestive enzymes and probiotics. Also, make sure you're getting enough fiber. If most of your fiber was coming from gluten-containing foods before then you may not be getting enough now. I also take Bean Zyme (the gluten free version of Beano) when eating anything gas-producing (salad, broccoli,...
  9. NoGlutenCooties
    Hi Everyone - I've been gluten free for six months now and I had my blood work redone. At diagnosis my ttg iga was 13 (anything over 11 was considered positive). My doctor just called me to let me know my ttg iga came back as "under 2". They're sending me my full results... but I'm ecstatic. I know I was extremely lucky to catch this thing early...
  10. NoGlutenCooties
    Just my 2 cents: I would not put a child on a gluten free diet based solely on the genetic tests. Approx. 30% of the population has at least one of the genes that predisposes them to Celiac but only about 1% actually get it. There are also some who have Celiac but do not have either of the genes. So in my opinion, the genetic tests are fairly useless...
  11. NoGlutenCooties
    The rash could be dermatitis herpetiformis - I don't have any experience with it but from what others have posted here it seems that having DH almost always means you have Celiac. They can also do a skin biopsy from next to where the rash is (not of the rash itself) and test to Celiac that way. If you search the forum for DH you should be able to find a...
  12. NoGlutenCooties
    FWIW... I do think it's useful to have the endoscopy even though there is a chance of a false negative result. They check for other possible issues, not just Celiac, and it's good to know that there isn't something more serious going on. (Don't mean to suggest that Celiac isn't serious... but they check for certain types of Cancer too - which in my book...
  13. NoGlutenCooties
    Hi and Welcome! I agree with the others that getting testing is best but I also understand that sometimes that just isn't a realistic option. I just wanted to let you know that it is not uncommon for symptoms to get worse before they get better - so if you're determined to try gluten free you need to give it a month or two - sometimes longer for some...
  14. NoGlutenCooties
    It sounds like your test may have been run through Quest Diagnostics. Their website lists an "Allergen Gluten Igg" test but I don't see right off where it explains which test this actually is. This page explains the full Celiac panel of tests: Open Original Shared Link It also includes the actual test codes - so if you have the code for the test that...
  15. NoGlutenCooties
    Hi Jess - I think it is important to get the testing done for three reasons: 1) you'll know that there isn't actually something else potentially more serious going on, 2) it is easier to stick to a 100% gluten free diet if you know for sure that you have to, and 3) you have kids and Celiac is genetic - if you have Celiac you'll want to get your child...
  16. NoGlutenCooties
    Request that the full Celiac be run, to include the following: Total Serum IgA tTG-IgA tTG-IgG EMA-IgA DGP-IgA DGP-IgG You can be negative on some of the tests and positive on others so it is important that they run the full panel. Good luck - and congratulations on taking control of your health. You have to be your own advocate. Oh - and...
  17. NoGlutenCooties
    While it is recommended to continue to be consuming gluten when you get tested, the inflammation is spotty and can come-and-go so even while you're eating gluten you can potentially get a false negative result. However, I think a false negative is less likely if you're eating gluten. In my case, my blood test came back positive and I stopped eating gluten...
  18. NoGlutenCooties
    Hi and Welcome to the forum - Non-Celiac gluten intolerance will not elevate your antibody levels on the tests and there is not currently a reliable test for NCGI. So if you have a positive result on the blood tests and/or biopsy results, then it indicates Celiac. The colonoscopy is most likely to make sure nothing else in going on, while the endoscopy...
  19. NoGlutenCooties
    The way I look at it is if they were such great doctors then they would be way too busy to do a TV show. They're there for entertainment value. Once in awhile they may say something valuable, but I don't trust them to know much about much of anything important.
  20. NoGlutenCooties
    Just wanted to mention that if the underlying issue is an imbalance of the gut flora, then sugar will exasperate the issue because the bad bacteria thrive on sugar. (Not saying that you definitely have an issue with bad bacteria... just saying that your symptoms fit... including having more trouble when you ingest sugars.)
  21. NoGlutenCooties
    Yep - I was getting a lot of "break-through-bleeding" for years before my diagnosis. You definitely want to get it checked out to make sure it isn't something more serious going on. For me, every OBGYN I ever went to looked really concerned, ran a bunch of tests, then when all of the tests came back negative came to the conclusion that "some women are just...
  22. NoGlutenCooties
    That sounds positively dreadful. I think the colonoscopy is important - just to make sure there isn't something really serious going on from a life-and-death standpoint. Aside from that, the first thing that comes to mind is a severe imbalance of gut flora. Sometimes just taking probiotics doesn't fix this - probiotics have a limited number of strains...
  23. NoGlutenCooties
    I used to get those very same eye issues right before I got a migraine. For me it was related to low blood sugar. Have you had your blood sugar tested? It can be low or high (approaching diabetes) - either can effect your eyesight.
  24. NoGlutenCooties
    Start with the newbie thread in the Coping section. You definitely need a new toaster (if you're going to do gluten-free bread) and a new strainer (if you'll be doing gluten-free pasta) - anything that can hang onto crumbs and gunk where gluten can hide out. Separate pans, dishes, etc. is not necessary as long as you wash them well. Be careful about wiping...
  25. NoGlutenCooties
    Welcome to the club, Fenrir. I know... you didn't really want to be in this club... but it's not so bad once you get used to it.
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