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ShayFL

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Latest Celiac Disease News & Research:

Everything posted by ShayFL

  1. ShayFL
    If you want to pay for Genetics privately (so it isnt on her record) you can use Enterolab or Kimball.
  2. ShayFL
    Yup.....you need to go to the Dr. Open Original Shared Link
  3. ShayFL
    I Googled "Crohn's" + "Diet" and the first thing I got was information on the SCD diet for IBS and Crhon's. If it were me or mine, this is what I would try. If I had felt this way when they found pre-cancerous cells on my cervix, I wouldnt have a cervix anymore. They wanted to cut it off. Mutilate me and cause me future problems. I wanted to try...
  4. ShayFL
    Accidental glutenings were enough for me.
  5. ShayFL
    I got sick about 6 months ago after eating mussels in white wine/butter/salt only. I have not eaten them since.
  6. ShayFL
    I dont consider any concern "trivial" when it comes to keeping yourself healthy. I could not find any commercially available fish food that is wheat free. And several forums I found included many frustrated fish owners. But I found this: Open Original Shared Link You freeze it. Sounded pretty easy to make to me. And probably a TON healthier...
  7. ShayFL
    My tests were like yours. Showing antibodies but not enough for a dx. I have "low" IgA but still within range. They should always test "total" IgA with Celiac panels and I dont know why they dont. Regardless of my numbers, I have had a POS response to the diet.
  8. ShayFL
    Great news!! Glad you figured it out and that we could help.
  9. ShayFL
    Awesome!! So happy for you.
  10. ShayFL
    You can "assume" anything, but if she doesnt have POS blood and/or biopsy the medical community as a whole would not dx her. If it were me, I would push for genetic testing for her to see if she even has the genes. If she doesnt have the genes there is still a tiny possibility that it is Celiac (very tiny), but with MUCH LESS probability. You could be...
  11. ShayFL
    Enterolab did not find Celiac genes for me and neither did Kimball. It would have been questionable in my mind if the two were not consistent. Enterolab did find 2 gluten sensitivity genes in me. One DQ3 is related to neurological disorders (which are my primary symptoms). After doing research on the DQ3 gene, comparing what I learned to my symptoms...
  12. ShayFL
    First thing that comes to mind is B12. Have they tested this? Plus MMA? Also Iron and Ferritin. Low Ferritin can cause symptoms. Show us your test results and we can help. Or if they didnt test these, they should ASAP.
  13. ShayFL
    Fiddle Faddle....I have tried a dozen times to make it with canned coconut milk. Even tried using the same ingredients (gums) they use. I just couldnt get that "creaminess". It was always too "icey".
  14. ShayFL
    Sadly if you have been predominately gluten-free for awhile, that Celiac blood panel can come up false negative. You MUST be actively eating gluten foods/and lots of them for a good 3 months to have hopes of an accurate test. If you can handle it, you can ask that the test be deferred for 3 months. Start eating cream of wheat for breakfast, a sandwich...
  15. ShayFL
    What were your exact tests? Did they test total IgA? Is that the number you are referring to?
  16. ShayFL
    12!!! That is crazy man. I pay 3.49 a pint plus 7% tax. I would use frozen strawberries at home (organic) which I can get for around 6 bucks a bag. I could get a good 3 shakes out of that 10.00 investment. Now with the coconut flavor....add some fresh pineapple and a splash of rum......and you got a delicious pina colada!!
  17. ShayFL
    I noticed these more when my Ferritin was lower (iron stores). I am still a WIP on that iron....but they have faded as I have gotten the level up. I dont wear makeup hardly at all. I wear Burt's Bees tinted lip balm and maybe mascara when I go out. So I cant help you there.
  18. ShayFL
    Turtle Mountain So Delicious makes the coconut ice cream for you.
  19. ShayFL
    I never buy anything with sulfites....cuz they can trigger migraines. Even tho I do not have any evidence they triggered mine (they went away gluten-free), always seemed a good idea to avoid them. They must put them in the flour or it is some of that outer shell that tears me up.
  20. ShayFL
    I generally do not trust others to prepare my food. I let a good friend of mine cook me dinner about a month ago. But she is "grain free" herself and understands CC very well. When I got there she showed me everything she used and she even covered all of the baking dishes in tin foil. Made note that she was using stainless steel spoons and such. I ate...
  21. ShayFL
    So glad to be of service. I bet for those that can eat chocolate....adding choco syrup to it with some type of milk would be ubber yummy too.
  22. ShayFL
    Yes, ditch the "wheat packs". Fill a large sock with white rice and heat in the microwave. Works great!
  23. ShayFL
    I also have low IgA (but within range) like your daughter. So I had antibodies.....but not enough to dx Celiac. Interestingly, my Mom has lower IgA too (must be genetic) and she tested negative for thyroid anitbodies a month before they removed her thyroid. They dx Hashimotos (auto-immune thyroid disease) during her surgery because her poor little thyroid...
  24. ShayFL
    I can eat coconut: shredded, milk, fresh, cream. No problems whatsoever. BUT I have tried "coconut flour" 3 times and every time I have the most horrible pain in my tummy that I have to lay in the fetal position for about an hour or so before it passes. I wonder why? Do they grind the hard outer part of the nut with the meats to make the flour...
  25. ShayFL
    Thing is that MOST almonds grown in the U.S. are grown in CA due to it's Mediterranean like climate. They are also grown in Spain, Italy and Greece. I get mine from here: Open Original Shared Link It is a good company that I trust. 10.50 a pound. Some sites offer for 9.99 a pound, but I have no experience with them.
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