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MitziG

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Everything posted by MitziG

  1. MitziG
    After being gluten free for three years, it will likely take much more than a few weeks of eating gluten to get a positive test or to show endoscopy damage. Seriously...they don't hand out a celiac dx easily. If you were dx before, you had it then, and you have it now. But your new tests will likely not back that up. I am pretty confused as to why you are...
  2. MitziG
    Couldn't agree more. Dolts. Morons. Ignoramus.... your doctors don't have a clue about celiac. She definitely has it. Either she doesn't have significant damage yet or they missed it. Find a doc to dx her- may mean a celiac specialist.
  3. MitziG
    Please realize that you can have a serious problem with gluten that ISN'T celiac disease! If it makes you sick- don't eat it! You don't need to have a drs permission to feel better.
  4. MitziG
    It took 7-8 mos until I felt like things were really better. For my daughter, a year and a half later, she is still struggling with nailing down other food intolerances. Everyone is different, so don't get discouraged!
  5. MitziG
    I am ok with celiac disease...I can make a decent (or even better) gluten free anything...but this casein intolerance has me down. I miss real cheese. I miss real butter. I miss Culvers frozen custard. Sigh... I can eat dairy...I don't get sick. But I spend 3-4 days with a "dairy coma" where I can't get out of bed. My face breaks out in terrible acne....
  6. MitziG
    Yep. You got it. Even if your endoscopy comes back negative (they aren't all that reliable) with that kind of strong positive bloodwork on so many specific tests, you definitely have it. But...it is kind of a "good" disease to have. No drugs to take and the difference you will feel (with TIME) on the gluten free diet makes the inconvenience well worth it...
  7. MitziG
    It is likely. Get an endoscopy done if you are still eating gluten. I had only a weak positive ttg of 6, but endoscopy revealed severe celiac damage. False positive is very unlikely for you, especially given your reaction to gluten.
  8. MitziG
    yes, you likely have celiac. Yes, you can wait a month or tow to be tested, but do NOT go gluten free until after testing as it will cause a false negative. And please know, testing doesn't always identify celiac (misses 30%) and does not identify gluten intolerance. So once all testing/ endoscopy is done, try the diet regardless of results. I suspect you...
  9. MitziG
    You definitely have celiac. Your first set of tests had FOUR positive tests, not two, and they are highly specific for celiac. There is no question. And yes, villi heal very quickly on a gluten-free diet, and antibody levels can drop within weeks, so the fact that your new tests reflected ANY celiac damage is indicative of the severity of damage you must...
  10. MitziG
    I'm sorry! That's always the way it is! If we are gonna be sick, it would be so much better to have had something wonderful and delicious that we have missed, not kjust a mediocre meal! Hope you bounce back quickly!
  11. MitziG
    My dd was always 100th percentile height and weight- and is biopsy dx celiac. Since going gluten-free she slimmed down and continues to get even taller. Apparently celiac wasn't affecting her growth!
  12. MitziG
    Yep, doc isn't clued into the latest info. The "usual" celiac genes are not the ONLY ones responsible for celiac. You can have celiac without them. The positive antibodies + biopsy= celiac. Period.
  13. MitziG
    Yes! But it took a long time! About 7-8 mos in, I noticed I didn't feel so crappy all the time. About a year after dx, I actually felt GOOD. Now, at a year and a half, I feel fantastic! Better than I have for the 30+ years prior to finally being dx! It takes time, and for some, it may mean eliminating more than just gluten. I had to ditch casein too to really...
  14. MitziG
    It would not be impossible that 10 days messed up your result....but it isn't likely either. If the full panel was done, and all were negative, then I would say that you can rule out that scenario. However, if just the ttg was done...maybe. as the above poster said, a very weak positive may have dropped that quickly. That said...a weak positive isn't necessar...
  15. MitziG
    Same here. 1978 when I was throwing up 3-4 times a week, doctor told my mom "she can't tolerate wheat or high fiber. But she'll outgrow it." So mom gave me white bread. by the time I was 12 I had "outgrown" my "wheat allergy" as the family called it. By the time I was 17 I was puking again and was told it was probably stress. Fast forward a few years and...
  16. MitziG
    Well, I am in Iowa, mot GA, but I know my 13 yo daughter would love a celiac pen pal! Myself and my 8 yo son are also celiacs, so there is definitely common understanding! Poor hubby is gluten free by default!
  17. MitziG
    Your biopsy could still come out negative, but that does NOT mean you don't have celiacs. False positive blood tests are virtually unheard of. Depending on which tests were done, the specificity is very high, which your dr apparently realizes since he has already dx you. Biopsy used to be considered the gold standard for dx, and a lot of drs still view...
  18. MitziG
    Congratulations and welcome! I know many of us here can relate to your story and have been misdiagnosed for years. I too look at being dx as a blessing- for the first time in my life I know what it is like to feel well! You will find a lot of valuable information here, and we look forward to hearing more from you!
  19. MitziG
    Just curious what "testing" you are doing? There is no accurate test for gluten sensitivity. You do need to be tested for celiac disease though BEFORE you begin a gluten free diet. If you are already gluten free you will have a false negative. Many normal foods are already gluten free- you don't need to buy specialty items other than bread. Chex, pebbles...
  20. MitziG
    Please give me your address so I can direct the skywriter to spell out YOU HAVE CELIAC. Seriously....if you keep looking, you will find a reason to convince yourself that it isn't celiac. But it won't make it true.
  21. MitziG
    Interesting. My feelings on gluten sensitivity is that it comes down to leaky gut from antibiotics, etc. Gluten proteins aren't meant to enter the bloodstream, and when they do, they wreak havoc. Celiac simply punched holes in the gut lining on its own...end result is the same!
  22. MitziG
    Dealing with the same myself, so I empathize! I just finished my 4th round of terconozale + weekly oral diflucan and it isn't gone. Going to go on a strict candida diet. Getting desperate!
  23. MitziG
    EMA doesn't give false positives. If you don't want the endo, find a doctor who will dx without it. Theyy are out there.
  24. MitziG
    Ttg can occasionally be elevated if you have an9ther autoimmune disease. Rather than undergo endoscopy, you should request that your doctor do the rest of the celiac panel. You need deamidated gluten peptides, endomysial antibodies and a total serum IGA. These tests will give you a better clue of if you are celiac. If you are even "a little bit celiac" you...
  25. MitziG
    Definitely get the thyroid checked. Don't give up on gluten free...any improvement shows it is a problem for you, whether you are celiac or not. Instead of just being lactose free, try removing all casein (milk protein) for awhile. A lot of us are sensitive to it. Be patient. This problem didn't happen overnight and it can take months before some...
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