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rez

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Everything posted by rez

  1. rez
    I'm so confused. Is it possible that someone can only react to casein and not gluten? Is it possible for a casein intolerance to cause a positive tTG? My son's tTG was positive, but his reactions to dairy, not just lactose (we used lactaid milk) were terrible. They were much worse than gluten. He would get ""D", terrible stomach aches, and multiple mouth...
  2. rez
    Have doc test him for Lactose intolerance. IT's easy, just a Hydrogen breath test. My son was positive. Can't tolerate any milk, even in a piece of chocolate. Good luck!
  3. rez
    Enterolab, in my opinion, is a HUGE waste of money. It is NOT reconized as a diagnosis for Celiac. It tells you if your gluten intolerant, but I think you figured that out by dietary response. We did Enterolab and I would save your "dough". Our Peds GI did not validate it in the least. If you're not going to pursue a diagnosis through blood or biopsy...
  4. rez
    Yes, did he say when he would publish his data?????????? Enquiring minds want to know, or I'm affraid he's going to lose all credibility FAST!
  5. rez
    PS Our family practice doctor has Celiac himself and he said that just because the bloodwork is negative doesn't mean they don't for surely have it. From what I understand, you can catch it sooner when biopsied. Also, some biopsy proven Celiacs never had positive bloodwork because they were IGA deficient.
  6. rez
    That would be a dream come true for my 10 year old daughter. She hates wetting the bed. I have been changing the sheets every night and reluctantly she agreed to go back to wearing Good Nites. I feel terrible for her and I'm affraid it's going to start to affect her self esteem. Here's our story...briefly... Thomas (8) diagnosed w/ apthous stomatitis...
  7. rez
    Good for you! You can let your guard down. I'm glad that you can move on and feel better! Good luck!
  8. rez
    Ps. Kudos to your doc! Is this a new doc. How many did you go through before you finally found one who recognized the symptoms?
  9. rez
    I would hold off on the diet until after the biopsy. It's nice to know for sure and to have a starting point so they can know how far you've come and healed! :) I'm sure they'll get you in very quickly. Good luck.
  10. rez
    Electra, I can totally relate to what you are saying. I agree with you 110%. I feel like I owe it so my 8 year old son to do the best I can for him since this is something he will be living with for the rest of his life. I feel that it is best to try to go the medical route first with good doctors, and then you can always implement a gluten-free diet...
  11. rez
    Wow! Your doctored ordered a test from Enterolab. What's the deal? Are they legit then, or not. Our pediatric GI basically laughed at our Enterolab paperwork and said he did his training in Texas and they NEVER ordered anything from Enterolab. We asked if he thought it was a hoax. He repeated, I trained in Texas and we NEVER, NEVER ordered anything from...
  12. rez
    It could also be from the casein in the milk. That's the protein and many Celiacs' bodies can't differentiate between gluten and casein. They're both proteins and very moleculary similiar.
  13. rez
    Good luck. I know it seems cruel, but you will have for sure answers for the rest of you life and a good starting point to check the improvement and progress. There are many conditions that respond to a gluten-free diet and it's nice to know which one it is for sure so other family members can be screened. Good luck and hang it there.
  14. rez

    ARCHIVED Dr. Guandalini?

    rez replied to rez's topic in Doctors

  15. rez
    If you can, get in for a biopsy soon, I HIGHLY doubt it will be negative. If your tTG was high positive that means you have significant damage and it' nice for them to have a baseline so they can check for improvement. It can take up to 6 mos. to a year for intestines to heal and blood work normalizes before the biopsy. Good luck.
  16. rez
    Yes. For sure she needs to do a gluten challenge if she wants a Celiac diagnosis by biopsy. They will not find Celiac, or very unlikely, after being gluten free for a year and a half. If they're using it to rule out other conditions, then that's a different story.
  17. rez
    Get a new doc and have him run a total IGA and a tTG. Everyone is different. MY son's test still showed positive after being gluten free 3 months. The tTG and EMA take longer to normalize than the others.
  18. rez
    They don't do the 3 biopsy thing anymore. One abnormal is enough for diagnosis. I didn't see the tTG results on your test. That is actually the best screen for Celiac.
  19. rez
    Is there any other reason than Celiac for a slighty elevated tTG. I have an 8 year old boy who just came back with a slightly elevated tTG and I've seen some numbers here that are through the roof, into the 100's. I know all tests are different and thank goodness it looks like both boys(yours and mine) were caught early. Sadly, my son's tTG was slightly...
  20. rez
    Do you have proven Celiac or do you just think you are gluten intolerant?
  21. rez

    ARCHIVED Dr. Guandalini?

    rez replied to rez's topic in Doctors

    I'm so glad to hear about Dr. Guandalini. We actually are in the very Western suburb.....in fact three hours West. We live in Bettendorf, IA. We have been living a nightmare this past year trying to find a good, competent doctor. We have probably seen around 5 different doctors. It's a long story, but our local doctor ran the wrong blood test and told...
  22. rez
    tTG is the best test to screen for Celiac. Of all the tests, that's the MOST IMPORTANT ONE that you and your husband SHOULD have had. Our tTg just said below 7 negative, and anything above positive. I know all labs are different. Before you put him on a gluten-free diet, I would get a second opinion. You should find out for sure if he has Celiac because...
  23. rez
    I definitely do not think being gluten free for a week and a half could affect a biopsy. That would be some darn quick healing. I think why they can't diagnose Celiac by biopsy a lot of the times is because some people are gluten intolerant but not Celiac, and some docs only look for stage 4 totally flattening villi. It starts with cells creeping in at...
  24. rez
    The previous poster is NOT referring to the tTG test. That is a different test that doctors don't use routinely to screen for Celiac anymore because that test is positive for many other reasons. The tTG test is the BEST out there for Celiac and she is POSITIVE. A good GI would have her scheduled for a scope next week, especially since she's under two, which...
  25. rez
    Definitely still get the test. My son's tTG was still positive after being very strictly gluten free for over 3 months. Make sure they do a tTG and an EMA for those will stay positive longer than the other two, I think IGG and IGA. Good luck!
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