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squirmingitch

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Everything posted by squirmingitch

  1. squirmingitch
    I agree with this! Furthermore, you must be eating gluten every single day for 12 weeks for the blood work. In addition, I would like to know where you got the info. that : "About 2 months ago I found out online that several studies conclude that the blood tests (IgA et al.) are - well - pretty much s$#&e. It seems they are only reliable...
  2. squirmingitch
    Edna, can you get or do you already have a copy of the blood work they did for celiac & post it here? They may not have done the full panel and heaven knows they've been known to misread it.
  3. squirmingitch
    I do not know.
  4. squirmingitch
    You're positive on the DQ2 which is one of the celiac genes. It only takes one of them so you have the genetics.
  5. squirmingitch
    Ditto this for me. Can't touch the things. I loved oats too in my former gluten eating life. Oh well. They have gone the same way as gluten as far as I'm concerned. I'll never touch them again. Since going gluten-free I have never gotten glutened but I've gotten oated.
  6. squirmingitch
    Wonderful to hear the good stories! Thanks so much for the update.
  7. squirmingitch
    I agree. Just buy prepackaged gluten foods for them that they can take in their lunch & eat away from home. When it comes time for testing, you can up the gluten they get just the same way cyclinglady does with her kid. Take it outside & wash your hands right away afterward. You'll need to do that for about 12 weeks prior to testing.
  8. squirmingitch
    Know that 60% of those with dh test negative on the blood panel. You got lucky & aced the blood panel. I just want you to be aware of that for your kids. You know what to look for in the rash & you have a celiac savvy derm so if one or more of your kids gets "the rash" go to the derm even if the blood panel comes up negative.
  9. squirmingitch
    You are clearly celiac. Sorry for the bad joke but all jokes aside, you truly are clearly celiac. Here's the thing.... your derm did not do a dh biopsy. Fine. She is convinced it is dh. The blood panel is clear that you are positive on every test & I'm sure that figured into her dx. Here's the big question.... Do you have it on paper from her that she...
  10. squirmingitch
    And DON'T go gluten free until you get tested & that means blood work for celiac as well as endoscopy or else you get false negatives. Open Original Shared Link I quote in part: Celiac disease affects people differently. There are more than 200 signs and symptoms of celiac disease, yet a significant percentage of people with celiac disease...
  11. squirmingitch
    Nope, you were not given the full celiac panel. Keep eating the gluten & go see the new GI. Gosh, I'm so sorry this is happening to you! Grrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!! Also it doesn't look like she tested you for being IgA deficient which would be a big OOPS!
  12. squirmingitch
    Gee Ginny, that's awful weird. I've never heard of anyone taking Dapsone where it didn't work. Very puzzling. I don't know what to tell you. So odd. I can say that oral or injected steroids can really help put the rash in it's place - out of sight, out of mind - BUT there's a huge price to pay & that comes in the form of a backlash from hell when...
  13. squirmingitch
    Furthermore, all first degree relatives of celiacs should be tested for celiac every 2 years even in the absence of symptoms. If symptoms present then testing should be done immediately. Good idea about asking the ped GI to run the full panel for you! You might need to beef up your gluten intake before you get the panel done because it sounds...
  14. squirmingitch
    You could take shrimp cocktail -- just ice it & no need for heating that then. How about following up with some coconut crusted fish with some nice veggies on the side? That could just be nuked to reheat & only takes a minute or two. Make sure when they put it in the microwave that it is covered in case there is gluten lurking on the ceiling of the...
  15. squirmingitch
    Call the manufacturer & ask. That's always the best thing to do.
  16. squirmingitch
    I guess you must have to be a member then. I don't know because I am a member. It doesn't cost anything & I've never gotten any junk mail from them or anything unpleasant. Gee, I didn't even think about that when I posted the link. OOPS! Let me know if you need me to copy & paste it because I will if you want.
  17. squirmingitch
    I agree with everything cyclinglady said. You need to be tested BEFORE you go gluten free!!!!!! I was just reading an interview with Joseph A. Murray, MD who is head of the celiac dept. at Mayo Clinic & one of the top celiac experts & researchers in the world. He talks about this subject of going gluten free before testing many times during this...
  18. squirmingitch
    Here is a link that will tell you what each of the major celiac disease centers recommend. I reference this site because the woman writing it is a doctor herself who has celiac disease and is also a member of this site. She's done the research for us & put it all together in one post: Open Original Shared Link
  19. squirmingitch
    I use Blistex and I can tell you it's gluten free. I happen to use this one because I'm sensitive to sunscreen plus I just like a simple product without a lot of crud in it. Open Original Shared Link BTW, here's a reference from Jan. 2014 where Blistex responded: Blistex: This company got back to me on January 31st, 2014. They said “…all...
  20. squirmingitch
    Thanks for the links Gee eff! I was able to leave comments. Yay!
  21. squirmingitch
    I'm glad you got the biopsy done & have a definitive answer! Welcome to the club you never wanted to be a member of but you will persevere & and flourish.
  22. squirmingitch
    You surely have a special family there. Hooray for your eldest son making sure his brother is safe. That's a huge reflection on the way you raised him mom. Good job! Your poor boy is probably going to feel icky for a while with that kind of damage. Also, for the first 6 mos. - a year, we can have ups & downs like being on a roller coaster. Some great...
  23. squirmingitch
    Blue Bell Ice Cream Recalls Mispackaged Rocky Road Pints That Contain Cookies 'N Cream Ice Cream; Potential Allergy Concerns For Those With Wheat and Soy Allergies. Blue Bell Ice Cream is voluntarily recalling select lots of Rocky Road pints produced in its Brenham, Texas, plant because they may be mispackaged and actually contain Cookies 'n Cream Ice...
  24. squirmingitch
    "Krist noted that one concern with celiac screening is that biopsies still have risks, and may confirm the presence of celiac that does not necessarily require treatment." WHAT??????? The presence of celiac disease does not necessarily require treatment????? Am I reading this wrong or is he crazy???? Celiac disease ALWAYS requires treatment by adhering...
  25. squirmingitch
    Remember that you have to be eating a normal gluten diet for the testing so don't cut back & don't stop eating it. Make sure they do the full, current celiac panel: Anti-Gliadin (AGA) IgA Anti-Gliadin (AGA) IgG Anti-Endomysial (EMA) IgA Anti-Tissue Transglutaminase (tTG) IgA Deamidated Gliadin Peptide (DGP) IgA and IgG Total Serum IgA ...
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