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MitziG

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Everything posted by MitziG

  1. MitziG
    Also, endometriosis has been strongly linked to Celiac.
  2. MitziG
    You can have NO symptoms and have celiac. Also it is very common for symptoms to wax and wane as you described. Your symptoms sound very much like mine- for the 30 years prior to my diagnosis! Definitely get tested!
  3. MitziG
    Well, the panel is typical, as in it only included one actual celiac test. Though they at least tested total IGA which is important, cuz if that is low, it negates the other test anyway. You still need: Ttg IGG Deamidated Gluten Peptides Endomysial Antibodies Do not be surprised if those are negative too though. Celiac is notorious for false...
  4. MitziG
    Yes, wait. The GI will likely want to do an endoscopy, and you need to be eating gluten if there is any chance for a dx! I went gluten free that day though!
  5. MitziG
    I'm sorry Dani, how frustrating! I have found I have to be pretty demanding with doctors. As in a pain in the butt that makes them roll their eyes when they see your name on the schedule.... I don't care. I am paying THEM, so they work for ME. I very specifically call and request the tests I want when I schedule the appt. And then the dr tries to...
  6. MitziG
    Again, I am sorry for misreading your post and thinking you cheated! As for gluten-free pizza- I use Gluten Free Pantry french bread/pizza mix. It makes a decent crust and I pile on yummy toppings. It isn't as good as Pizza Hut, but the kids gobble it up and it definitely satisfies the "pizza cravings"! I am so sorry you are still miserable and hope...
  7. MitziG
    I wish I did! Unfortunately this is why many people on this board are self diagnosed celiacs. The gluten challenge is simply to difficult to maintain for the required time. It is important that you remember, even doing the challenge, you will likely still test negative for celiac. Only 1 out of 133 have celiac disease. And testing will only identify 7...
  8. MitziG
    Yes you have celiac. The positive test alone is generally enough- false positives are exceedingly rare. The fact that your count dropped when you went gluten-free and rose in response to a very short gluten challenge merely confirms that yes, gluten is a problem for you. An endoscopy would likely (but not necessarily) confirm this. Biopsies can easily...
  9. MitziG
    Oh, and after all that- plan on everything being just fine, at which point you will be depressed and frustrated and the doctor will say you have anxiety and should try an antidepressant. Try a gluten free diet instead. Most here are NOT dx Celiacs. But they found out the reason they felt like crap for years what not in their head, it was in their...
  10. MitziG
    I second the above. Keep eating gluten for now, if you stop, it will mess up the tests. Get a FULL Celiac panel done. You will have to specify: Total IGA TTG IGA TTG IGG Deamidated Gluten Peptides Endomysial Antibodies Very few doctors know what to test for, what most call a "celiac panel" includes only the first 3, whereas the last two are newer...
  11. MitziG
    Remember, I told you to prepare for it to be negative. It may be a false negative, or you may be gluten intolerant. It would be so much easier if everyone who had a problemm with gluten tested positive for Celiac Disease because then the facts are indisputable. But...on the upside, this means your kids PROBABLY don't have an auto-immune disease, and that...
  12. MitziG
    apple cider vinegar (Braggs) in some water helps significantly.
  13. MitziG
    EMA is specific for celiac. You have celiac disease. Welcome to the board!
  14. MitziG
    Just to clarify so I don't offend Diana- genetic testing IS valid for showing if you have celiac genes...but most drs will not give you a celiac dx just because you have the genes, since you can carry the genes your whole life and never get the disease. That her dr accepted them as proof enough is a rare, rare occurrence, and it is most fortunate that she...
  15. MitziG
    You sound very much like you have celiac disease or gluten intolerance. First, get a complete panel of celiac blood tests done at your doctor. Continue eating gluten during this time, because if you stop, the antibodies will disappear and your test will be negative. If you have a positive, some drs will diagnose you by that alone, and they should, as false...
  16. MitziG
    You did not have a complete panel done. They left off the two newest, and most specific tests- deamidated gluten peptides, and endomysial antibodies. If you really need that dx, go ask for those tests. BUT, they can still be negative. Some celiacs just don't show up, and you may be one of them. Or you may be non celiac gluten intolerant, and there is no test...
  17. MitziG
    When you are healing, you feel lousy so often that it is very difficult to tell whether you got glutened, imagined you got glutened, or are reacting to something else altogether. We have all been there! It sometimes seems like this is going to be your life now, waiting for the "next time" this happens. Don't worry. It won't be your life. But it will probably...
  18. MitziG
    Just to make sure you understand, because not all doctors are aware- you can have Celiac disease without necessarily having either of the two "celiac genes" it is not common, but there are a few people on this board who were dx despite being DQ2 and DQ8 negative. Your neurologist is one of the few who are on the ball in identifying celiac as the likely cause...
  19. MitziG
    Not square one, by any means! When you are new to the diet, it is so easy to talk yourself into cheating. Alcohol lowers inhibitions, whether it is sex or gluten, lol! So, next time you plan ondrinking, make a game plan ahead of time so you will be less likely to fall victim to the same thing. Carry some snacks, or worse case scenario, go bunless or try the...
  20. MitziG
    Yes, definitely get a copy of your labs and post them on here. I would say 90% of doctors don't do a full panel, and if so, celiac can easily be missed. However, even a full panel only catches 70% of celiac disease. The next step would be an endoscopy, with the doctor taking a minimum of 8-16 biopsies. Many take only 1 or 2, and easily miss damaged...
  21. MitziG
    They left off a couple of very specific celiac tests, however, if the ones they did are even weakly positive for Celiac, then you have your answer. If they come back negative, you can request they also add a test for deamidated gluten peptides and endomysial antibodies. If it is still negative, you could submit to another endoscopy (this time with the recommended...
  22. MitziG
    Good for your doctor! Everything you are going through is very normal. When you remove a toxic poison from your diet, your body notices! It can take awhile for things to resolve. Stick to whole foods diet for a few months- stay clear of gluten free processed foods for now. Digestive enzymes can help get your gut bacteria back in harmony. As for reacting...
  23. MitziG
    Kudos to your dr for being on the ball with this one! It is a rare thing to find a doc who actually understands the role celiac plays in pregnancy/ infertility! Treat yourself as a celiac from now on, as you probably are. And yes, weird bowel things happen when you cut out gluten. As well as weird OTHER things. Withdrawal is very common and not pleasant...
  24. MitziG
    I would guess it is likely casein intolerance. Yogurt is lower in lactose, and would not be AS LIKELY to cause such a reaction. Same with cheese. You mentioned taking Lactaid before- did it relieve the symptoms? If so, it may be lactose intolerance, in which case once your gut heals and your villi grow back, you should be fine with dairy. You also can...
  25. MitziG
    Just want to apologize- I misread your post and thought you were cheating on the gluten-free diet- hence my not so kind tone. Now I see you meant "cheating" by eating some processed foods- but gluten free ones. Which should be fine but still make you sick. I am so sorry. I have little patience with people who refuse to comply with the diet and whine that...
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