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squirmingitch

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Everything posted by squirmingitch

  1. squirmingitch
    First off, what testing did they do to decide you aren't celiac? When were these tests performed? Did they do a celiac blood panel prior to the endoscopy? Which tests did they do? You should have/get/keep copies of all medical tests for your own records (even the ones not dealing with celiac). Did they do biopsies during the endoscopy? How many? From what...
  2. squirmingitch
    Here's a chart listing the amount of lactose in common foods: Open Original Shared Link Looks like sour cream & cream cheese are right down there very low along with the hard cheeses.
  3. squirmingitch
    As far as the dairy goes, as cyclinglady said, it's really about the lactose. You could buy lactose free milk and hard, aged cheeses have little to no lactose as the aging/enzyme process eliminates the lactose so things like a good, quality, nicely aged cheddar or swiss, parmesan should be okay for her. I don't know if you have Lactaid brand in Canada...
  4. squirmingitch
    Very important Noel James...... if the dermatologist takes the biopsy ON the lesion you will get a negative because that is the WRONG way to take a dh biopsy. Make sure they do it correctly. Be prepared to fight for a dh biopsy because I can just about guarantee you the derm will say it's this, it's that, it's the other & prescribe creams & lotions...
  5. squirmingitch
    Awwwwwwwwwwwwwwww cyclinglady I am so sorry you're going through this!!!! As to tooth extraction issues, I've had a couple wisdom teeth pulled pre diagnosis & no problems thankfully. The last wisdom tooth was a bear for the dentist. He had to practically sit on me to pull the darn thing out! He was literally sweating and I , who am normally absolutely...
  6. squirmingitch
    Great to hear RNinGA!!!
  7. squirmingitch
    Great, perfect reply jmg!
  8. squirmingitch
    Hi Mary Anne, I'm going to repeat.... Do not give up eating gluten until all testing is completed!!!!!! 60% of those with dh test negative on the blood tests yet we do have the intestinal damage. It tends to be patchier in us though. We tend to have milder, fewer GI issues than celiacs who don't have dh. A dh biopsy, as you have read on here...
  9. squirmingitch
    This sucks., You may be going through gluten withdrawal. It does exist and many (most) of us went through it for varying lengths of time & to varying degrees of severity. Just use the Google search box for this site & you will come up with hundreds of threads on the subject. Personally, I went through it for about 2 months. Lots of people only...
  10. squirmingitch
    This is what you'll have to do if you go off gluten prior to blood testing or endoscopy. Open Original Shared Link Even though you had the test years ago, celiac disease can present at any time so just b/c you were negative then doesn't mean you will be negative now. Besides that, we don't know what tests you had back then -- the full panel or not...
  11. squirmingitch
    Ah yes, the ranting & raving, the this CAN'T be ME! The WTF????!!!! The you've GOT to be kidding me!!!! I think we've all been there to one degree or another in the beginning. {{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}} We're here to listen to your rants & raves, to your crying fits, have pity parties with you and celebrate when you make progress. Have you...
  12. squirmingitch
    MEAT! Have steak & eggs for breakfast & make sure you have some good fat with the protein --- butter, olive oil, coconut oil are all good fats or even the fat on the steak. Split pea soup is good protein, dried beans are good protein.
  13. squirmingitch
    Sounds like gluten withdrawal to me. You could go to your Primary care doc & get normal labs run & bp taken etc... just to check on those possibilities as well as get some vitamin & mineral levels checked out. Doing that would make you more sure/comfortable with the likelihood it's gluten withdrawal. Everyone is different so how long it will last...
  14. squirmingitch
    UGH! I'm so sorry this has happened. I hope you recover quickly and find the source of the trouble.
  15. squirmingitch
    Do you guys have OreIda up there? Here in the US they are gluten-free.
  16. squirmingitch
    Stacy, maybe it IS the probiotics themselves. Not so long ago a study was done which found some that weren't gluten free even though they were supposed to be. How about eating yogurt?
  17. squirmingitch
    Add to the above that you have a celiac gene.
  18. squirmingitch
    Nooooooooooooooooooooooooooooo, you misunderstand. You MUST eat gluten every day for a minimum of 2 weeks prior to an endoscopy!!!!!!!! If you stay gluten free then you will walk away with no diagnosis.
  19. squirmingitch
    FritoLay gluten free list for the US: Open Original Shared Link Very trusted company by us Celiacs: Open Original Shared Link they have nut butters too Planters is a Kraft product -- Kraft is quite trusted by us. They will always label any gluten and further label any manufacturing info. that might cause a problem such as shared lines...
  20. squirmingitch
    As previously stated the H means it's a high reading aka above normal aka positive. Colonoscopy is NOT a way to dx celiac or even to check for it. Endoscopy taking 4-6 biopsies, preferably minimum of 6 is the gold standard for dx when combined with positive blood which you have. A colonoscopy will tell you nothing about celiac. Find a celiac savvy GI specialist...
  21. squirmingitch
    I agree with this completely!!!!! For me, it's not worth having.
  22. squirmingitch
    DH doesn't magically disappear when you go gluten free. It doesn't necessarily follow a logical course of action. In other words, it doesn't start getting better & better & better & better & then gone. It can/will be a roller coaster ride. The rash can get better & then flare or not. The antibodies are under our skin and only when they...
  23. squirmingitch
    I haven't found that pain indicated one way or the other. This stuff will drive you crazy trying to attribute logic to it.
  24. squirmingitch
    GFinDC is correct. The low iodine is not meant to be a permanent thing but as a kick starter if you will. I eat milk, butter & other foods containing iodine now but I still have a problem with the very high iodine foods such as asparagus and seafood. I eat them & the rash flares again so I don't eat them. Each person is an individual so the amount...
  25. squirmingitch
    Okay, I went & cooked & ate dinner & just left my post hanging there. Came back & was going to copy & paste the post into a new tab, when I clicked to write the post, I got a message that my previous content had been restored & i clicked submit & everything worked. Go figure.
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