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MitziG

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Everything posted by MitziG

  1. MitziG
    Other food intolerances are a possibilty, but first make sure you aren't getting gluten somewhere. If you are in a shared household, cross contamination is a real possibility. Do you have your own toaster, cutting board, etc? Take a look at your toiletries- toothpaste and lotions often have gluten, as do chapsticks/ lipsticks. Pets? Most pet food contains...
  2. MitziG
    Hmmm. At the time, the doctor made it sound as though it was being caused by the celiac, and never suggested any follow up care. (This would be the "internet hoakum" doctor. ) my son had been on PPIs for 2 yrs by that time, and my research said they can also cause it, so my thinking was no gluten, no PPIs....no gastroparesis. But maybe not. I will definitely...
  3. MitziG
    No, they don't have a GI. The ped GI who dx my son is a jerk who first insisted there was nothing wrong with him, and only found celiacs when I made him scope him. Then when I wanted to have his vitamin levels checked because of his depression/ anxiety he told me there was no need and to stop believing in "internet hoakum" Daughters GI was nicer, but clueless...
  4. MitziG
    Yes, definitely have all of your immediate family tested for celiacs, and then, you and your sister should go gluten-free regardless of the results. A gluten free, casein free diet has almost eliminated my IC symptoms, and I do not need to take elmiron, or follow the really restrictive IC diet. There are a lot of IC sufferers with celiac disease out there...
  5. MitziG
    Two kids, 8 & 13, both DX celiacs. 8 yr old has had huge relief from going gluten-free 18 mos ago. No more constant belly aches, better behavior, decreased anxiety/ depression. Went casein free as well approximately 3 months ago due to eczema and has helped even more. Problem- he still complains about a constant dull ache in lower right quadrant. (Not...
  6. MitziG
    Likely you are non-celiac gluten intolerant. No tests are available other than the most reliable one ever- how does gluten make you feel? that is all the answer you need. Nobody really knows what exactly happens that makes so many respond badly to gluten, yet not develop celiac. But NOT having an autoimmune disorder is a GOOD thing, so don't be dissappointed...
  7. MitziG
    Well, no way to know for sure, but the likelihood is you got cross contaminated at Macaroni Grill. The "gluten free" menu at restaurants is helpful, but unless you speak specifically to the chef and server regarding how to handle/ prepare your dish, chances are good that you will get sick. For instance, they may handle bread and then prepare your salad...
  8. MitziG
    The recommendation is the equivalent of 4 slices of wheat bread a day. Scary thought when it makes you sick, but if you can manage, do it. The last thing you want is a false negative. Be aware that after bloodwork, they likely will do a follow up endoscopy, and you need to continue eating gluten until after the endoscopy.
  9. MitziG
    Well that is good. Just make sure you start eating it again right away until all of the tests are done. And then hopefully going gluten-free will have you feeling better soon!
  10. MitziG
    gluten-free in DC, I think you misread the OP's post. I think she has only been gluten-free a few days it sounds like. Am I mistaken?
  11. MitziG
    Actually, the DGP is a very specific and reliable test. It is not uncommon to have the majority of bloodwork come back negative. Antibodies are mostly in the gut, not the bloodstream. My guess would be that you are in early stages of the disease. Celiac is patchy, and easy to miss on a biopsy. The fact that your GI saw visible damage is a big clue though...
  12. MitziG
    First, you likely DO have celiac disease. A few other things can elevate TTG though. Your doctor should do additional bloodwork- a full celiac panel that includes Anti-Gliadin and Endomysial antibodies. Giardia will not cause an elevated TTG- that is a sign of auto-immune activity, and 90% specific for Celiac Disease. It is critical that continue eating...
  13. MitziG
    How frustrating! I was told over and over again that my sons problems were all due to constipation and that he wasn't getting enough fiber (this when the kid lived on fruit and whole wheat!) I feel your frustration when they just dismiss you! Glad you got the referral. Take husband with you to the appt. They tend to think us moms are just a bunch of emotional...
  14. MitziG
    Same here. I thought I was fine with dairy- turns out it was just the lesser of the two evils. About 12 months after dx, I had to go casein free too.
  15. MitziG
    No, you don't necessarily have to give up rice. Rice is considered a grass, not a grain actually. The reasoning behind the no grains diets is that all grains are highly inflammatory in and of themselves, so if you are trying to heal, avoiding anything inflammatory speeds thhe process. Primal and paleo diets do not include rice due to supposed anti-nutrient...
  16. MitziG
    Yes, this is because of your exposure. You are almost definitely celiac. What happens is the longer you are off gluten, the more you heal, the stronger your immune system becomes. All those colds and viruses you used to get? That was because your immune system was too busy attacking your intestines to be bothered fighting off germs. But now it has reccovered...
  17. MitziG
    everyone is welcome here, regardless of if they have celiac or not. It is a place to learn. That said, healing is a very up and down process at times. Initially, you may have felt better because you had a huge reduction in the amount of allergens you were ingesting. What can happen though, particularly with gluten, is that when the body begins to heal, the...
  18. MitziG
    Troy that is EXACTLY how I was for 30 years! I could never fully wake up- felt drugged until well past noon. I just thought I wasn't a morning person. The first thing I noticed gluten-free was that the drugged feeling left. When I woke up, I was awake. (Still bone crushingly tired, but alert and awake!) The fatigue took 7-8 months to lift, but the waking...
  19. MitziG
    They did not do a full celiac panel on you- but perhaps they won't in the UK?
  20. MitziG
    Giardia and soy/ milk intolerance can cause villous blunting. Was the full celiac panel done before? If not, some of the more specific tests may shed some light. Celiac is the USUAL cause but they probably want to be certain. Villous damage combined with positive bloods or a positive response to gluten-free diet will get you a dx.
  21. MitziG
    If your doc is willing to do an endoscopy and you can afford it, I would. 30% of celiacs will have negative bloodwork. Just be sure he takes enough samples and from the right area- agree to it BEFORE you go under. Too many people go in for endo and the doc thinks he identifies the problem as something else so doesn't bother to take biopsies! If that...
  22. MitziG
    1) yes- 2) no I lived on gluten and dairy, craved it. Now can't have either.
  23. MitziG
    Yes,m it sounds exactly like celiac, and stress is a common trigger to have the disease reactivate in adulthood. Yes, you need to start eating gluten again immediately, and continue eating it until all testing, including biopsy, is done. Then, by all means, go gluten free. Many celiacs still get negative test results (it is a flawed science still) and...
  24. MitziG

    ARCHIVED 12 Year Old

    MitziG replied to MJH's topic in Coping with Celiac Disease

    This is exactly the same as my 13 yr old daughter! While 3 of us have celiac, she is the one who reacts worst to cc, and so she refuses to eat anywhere but home, and it IS a challenge. What we have gotten in the habit of doing is packing snacks for her (kind bars, fruit, gluten-free pretzels, etc- and her trusty pb &j sandwiches. Yes, it is not as good...
  25. MitziG
    I think this is a simple misunderstanding and a case of inferring tone to text, which is difficult to do correctly. Mom2J112903 read FOR LIFE as being kind of "snotty" even though it wasn't intended that way. You were emphasizing that if a person is going to undertake a lifelong diet they want to be sure that it is necessary. Mom211j2903, maybe re-read...
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