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MitziG

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Everything posted by MitziG

  1. MitziG
    Yeah, it is very hit or miss with reactions, especially in the beginning. Part of what makes celiac difficult to diagnose. If everyone got sick immediately after eating gluten, it would be pretty obvious. Get a copy of the labs your doc ran and post them on here. Id be willing to bet he didn't do a complete panel.
  2. MitziG
    To be positive on ALL of those tests is rare- your dd is definitely celiac. It is a shame your ped is too ignorant to understand that! Just make sure, regardless of the biopsy results, that she goes gluten-free for life.
  3. MitziG
    Twigs Restaurant & Grille. The owner is a celiac and has a whole seperate kitchen area for gluten-free food. And the food is fantastic! If you need a safe place in Rochester, it is so much better than any chain restaurant!
  4. MitziG
    Well...it is iffy. But my gosh girl, if the constant barfing doesn't clue your doctor into the fact that gluten is a problem, he needs his license taken away. I began my celiac career at age 3 as a barfer. same story. Take away way wheat, stop barfing. Enter puberty, wheat no longer = barfing, so I'm cured, right? Enter adulthood, spend the next...
  5. MitziG
    Your dr is a dope. The chances that you have intestinal lymphoma are remote. Most celiacs go years and years undx...and while we are miserably ill, cancer is a rarity. So don't worry about it. That said, you DO have celiac, and at least she recognizes that. Celiac is generally a pre-cursor to type 1 diabetes and thyroid issues. Endoscopy isn't a bad idea...
  6. MitziG
    Your "weak positive" is like being "a little bit pregnant". That test is very specific for gliadin antibodies. Some of your IGA tests may be showing negative due to the fact that your serum IGA is very low- 1 point away from being deficient. (70-400 was normal, you were 71) IGA deficiency not only makes IGA tests invalid, but it is a common red flag for...
  7. MitziG
    Genetic testing can only say if you have celiac genes. It will get you no closer to a dx. As for the tax deduction- well that is a joke. There are several threads here about it. As I found out after saving a years worth of receipts for me and my 2 celiac kids, + having several thousand in medical bills- it wasn't enough to qualify for itemizing medical...
  8. MitziG
    Also...you do understand that you may NEVER get a celiac dx? Gluten intolerance can't be tested for- and you obviously have at least that.
  9. MitziG
    Well, if they have done bloodwork and biopsy, there isn't any other tests to do to confirm celiac. Either it will show it or it won't. So there isn't any reason to keep eating gluten unless you insist they do another biopsy in 3 or 4 months- which still may not show anything. But...since going back on gluten made you so sick, isn't it rather obvious that...
  10. MitziG
    Yeah, that is pretty normal. My 8 yr old needs about 9-10 hrs. If he gets less, look out! He is homeschooled so we don't usually have a strict waking up time unless we have an appt or something. He usually pops out of bed about 9 or 10 hrs after he went there!
  11. MitziG
    Dr Fasano is a world renowned celiac specialist. He is the one who initially proclaimed biopsy to bee "the gold standard." Within the last year or so, he has retracted that opinion and now has publicly stated that the bloodwork is so accurate, positive labs + resolution of symptoms on a gluten-free diet is the new "gold standard." Your GI is not up to...
  12. MitziG
    If you had only 1 of those tests be strongly positive, it is pretty much guaranteed you have celiac. To have all of them be so means there is no question whatsoever. Just doesn't happen. As to your biopsy- a few possibilities: You have latent celiac, as another poster mentioned Your doctor took an insufficient number of biopsies Your doctor did not...
  13. MitziG
    I used to do that last one a lot! It is so wonderful to feel GOOD!
  14. MitziG
    What I have learned is that this is one weird disease. The only thing predictable about it is its unpredictability. My son and daughter both are dx celiac as well, but all three of us have very differeent reactions, symptoms before dx, etc. My dd was 12 at dx and had no obvious symptoms. She did have mild eczema, and her tummy always stuck out, but that was...
  15. MitziG
    Yes, you have to be eating gluten. That said- you very likely don't have celiac disease. You are probably non-celiac gluten intolerant- meaning you get very sick from eating gluten, but you aren't making antibodies to it. I realize everyone would rather have the celiac dx so they can be taken seriously, and it is wrong that most doctors dismiss gluten...
  16. MitziG
    When I went back and read your first post the length of time he was eating gluten wasn't clear to me, sorry. However, I had raging celiac for over 30 years. When they did my endoscopy the GI was shocked by the amount of visible damage. He could not believe I didn't have constant diarrhea or that I was absorbing anything. But guess what, the ONLY lab I...
  17. MitziG
    Your doctors acted in complete ignorance- which is not unusual. Celiac never "goes away" the only treatment is a gluten free diet for life. Your son should NEVER have been put back on gluten. Ever. What happens, and the reason many drs believed for years that it could be outgrown, is that celiac goes into a sort of "dormancy"- frequently during periods...
  18. MitziG
    just so you know, improvement isn't always noticeable for many months. I was about 7 mos in before I realized, "hey, I think I don't feel quite so crappy anymore!" Had I not been dx, I would never have stuck with diet long enough to feel better. Another thing to consider, if going gluten-free resulted in your ttg dropping- that too would be a clear indication...
  19. MitziG
    I went grain free about 3 wks ago as an experiment to try and eliminate some overall inflammation and heal a leaky gut. So far, my stomach/intestinal issues seem to have subsided. I am losing weight. Having less intense cravings for junk food. And my adult acne has cleared up. Feeling pretty good and may continue eating this way. I went gluten...
  20. MitziG
    He is incorrect. A gluten-free diet will not make your son lose weight. Especially if you buy processed gluten-free food, like waffles, pretzels, pancake mix, etc. The vast majority are much higher in calories, fat and sugar. (It helps make up for the lack of taste!) Seriously, having been down a similar road with my son, watched him suffer for 2 1...
  21. MitziG
    I tested as a weak positive on the ttg only. Level was 6, with below 4 being ok. My biopsy showed total villous atrophy. A low ttg level is still celiacm and I would consider yourself one. Ttg can be elevated in instances of other autoimmune diseases, but if your symptoms are consistent with celiac, then you have your answer.
  22. MitziG
    Gluten intolerance is the most likely diagnosis- celiacs are the minority on this board. In that case- you need to listen to your body. If you continually get cross contaminated, you are going to start feeling like crap, all of the time. On the other hand, some with gluten intolerance are able to tolerate smmall amounts of gluten without issue. You may...
  23. MitziG
    Well, you may be non-celiac gluten intolerant. It is much more commmon than celiacs, and the reaction can be just as severe. Such is the case with most people on this board. Gluten intolerance does not show up on a test, and unfortunately, is disregarded by most doctors. Celiac testing has a false negative rrate of about 30%- so your chaces are sketchy...
  24. MitziG
    No, I would not. Since you are keeping a food diary, that should be sufficient evidence of calories. Heck, give him gluten-free cake for breakfast if he wants it! a lot of gluten-free foods are heavy on salt, sugar and calories anyway, which in his case may be beneficial. If the doc questions it, you can say the Pediasure upset his stomach- it probably does...
  25. MitziG
    I doubt after being pretty much gluten free for a year he would still test positive. Yes, I wonder if going gluten-free is what triggered a stronger immune response when he started cheating. Since before he had a lot of intestinal issues, but no wasting. Now maybe his immune system is totally stoked against gluten and waging big time war on his villi? I...
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