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squirmingitch

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Everything posted by squirmingitch

  1. squirmingitch
    Awwwwwwwww, she likes us! I just tried it with you & it worked.
  2. squirmingitch
    That was me on the last post you made there. It's very strange that it gave me that message. I could not see the reputation until just now. Well anyway I'm glad it actually worked. For a bit there I wondered what you had done that was so bad that no one was allowed to give you reputation.
  3. squirmingitch
    I did log out, clear cookies & log back in. Everything seemed fine until a little while ago. I tried to give Karen a "thumbs up". I got a message saying that I did not have permission to give this poster reputation. Go figure. Must be gluten related.
  4. squirmingitch
    And THIS is a great idea Karen! Stef, see if you can arrange a phone consult with the doctor prior to the appointment.
  5. squirmingitch
    Lisa, there is a huge learning curve to mastering the gluten-free diet! One thing I would say would be NO MORE eating out for 3 or 4 months at least. Bring your own food. Even beyond that time ALWAYS have "take along" snacks in your purse or the car for those times you really, really need something to eat. Never go anywhere without taking something safe to...
  6. squirmingitch
    The stress & surgeries/illnesses you've been through put you squarely in the category of triggering celiac to present. Particularly the types/location of problems you've been having are setting off bells in my head. I will disagree with cyclinglady on one point.: If you don't have the DQ2?DQ8 gene you will never have celiac. There is still...
  7. squirmingitch
    I forgot to say that yes indeed, even for celiacs, gluten withdrawal is sort of like opiate withdrawal. Not that I know what opiate withdrawal is like first hand thank goodness but it is certainly not fun. But until tonight, I have not heard of anyone recommending weaning oneself off of gluten.
  8. squirmingitch
    I'm sorry if my response sounded unsupportive; that was not my intent. I am frankly befuddled about this weaning off business. I was not shouting at you when I said, "I don't know where people are getting this stuff about weaning off of gluten but this is the second time tonight that someone has asked about it. Celiacs don't wean themselves off of gluten...
  9. squirmingitch
    Medical protocol is that all 1st degree relatives (you) of a dx'd celiac (your son) should get tested for celiac every 2 years, sooner if symptoms present. For celiacs, going gluten free and then going back on gluten for a "gluten challenge" for celiac testing is a major gaff. We almost always have much more severe symptoms than we did before we ever...
  10. squirmingitch
    And since you now know which doctor he's going to be seeing, can't you write out his symptoms, his history, the family history and your diagnosis and either snail mail it or email it to be put in his file?
  11. squirmingitch
    I can only say I was rushing to get dinner on. No excuse. Should have waited until after dinner & come back to the subject. Ugh! 2 hits in one day! Taxes are so stressful! I managed to get mine done early this year and it feels so good not to have that hanging over my head.
  12. squirmingitch
    Oh sorry, my bad. I misread.
  13. squirmingitch
    Am I missing something here? It shows she's deficient in IgA which makes the tTG IgA of 215 pretty high even though it's "within normal range" -- that being normal range for those who are not IgA deficient. To have a result of 215 in a range of 81-463 when you're IgA deficient is a pretty big red flag I would think. The doctor realizes she has a false negative...
  14. squirmingitch
    You're welcome! I surely hope you can get this resolved. I hope you can get in with Dr. Fasano. That's going to be many months wait I would think. His team should be as good as him since they are under his direction.
  15. squirmingitch
    Thank you, I will try that.
  16. squirmingitch
    What does this error code mean? It also says I do not have permission to view this content. I've gotten this several times on different threads in the last week or so. I'm just wondering if this is a glitch or what?
  17. squirmingitch
    I understand. Some people are IgA deficient & that causes problems with the blood tests. I am glad your doc recognized what was going on. You might find this interesting reading. In fact, you might want to print it out & give it to your ex husband to read. These are top experts in the field -- highly, highly respected! Open Original Shared Link ...
  18. squirmingitch
    How was your diagnosis done? Did you have a GI doc & he did a blood panel and endoscopy? I am asking because if that's the case, then it is recommended that all first degree relatives of dx'd celiacs get tested every 2 years UNLESS symptoms present sooner. Open Original Shared Link
  19. squirmingitch
    I think your instincts are right and the endoscopy is not such a big deal. It's pretty quick really. Your co-worker I'm sure means well but is not considering how important that official dx is for school, college, medical care & testing. It's very much to your daughters advantage to have that official dx -- it will protect her. Plus, as you said...
  20. squirmingitch
    I totally agree!
  21. squirmingitch
    The genetic testing will NOT tell you if you have celiac disease or not. It will only tell you if you have 1 of the genes for celiac but 30% of the population carries those genes & they will not all have or develop celiac - only about 1% will. For that matter there have been cases where the patient did not have either gene but are serum & biopsy proven...
  22. squirmingitch
    From Celiac Disease: The Hidden Epidemic. Dr. Peter H. R. Green and Rory Jones DH was first described by Dr Louis Duhring in 1884, four years before Samuel Gee made sense of the ìcoeliac afflictionî. In 1967 Janet Marks of England discovered the link between intestinal biopsy and skin biopsy results of DH patients. It is a chronic, permanent c...
  23. squirmingitch
    Make sure you get the full celiac serum panel. This is it: 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 Also can be termed this way: Endomysial Antibody IgA Tissue Transglutaminase IgA GLIADIN...
  24. squirmingitch
    I seriously doubt my hubs & I can afford long term care insurance. He is a disabled Vietnam veteran & the disability compensation does not stretch very far. This is something I have feared ever since finding out I have celiac and then another hit when we discovered the hubs does as well. I am terrified that nursing homes will not be prepared...
  25. squirmingitch
    Count another one with dh who can't do certified gluten-free oats. They got me big time. I had not had gluten-free oats since going gluten-free until Dec. of 2014 when I began making some bread that contained oat flour -- (BRM brand) but I don't blame BRM specifically - just gluten-free oats in general) & WHAM! I took a big hit.
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