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Fiddle-Faddle

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Everything posted by Fiddle-Faddle

  1. Fiddle-Faddle
    Oh, mommida, I'm so sorry. Can you post your friend's first name so we can put a name with our prayers for her? Everyone, thank you so much for your support and advice. My #2 son is very, very upset, understandably. We are all sad. And no, we don't have a picture to remember him by, and I don't have the heart to ask his parents for one. I was thinking...
  2. Fiddle-Faddle
    It seems to me that you should seek out doctors who have SUCCESSFULLY managed patients with refractory sprue, no matter how far away. If they are experienced with RS, they won't hang up on you if you call them from wherever you are, they'll know that you're not faking or crazy. They might be willing to speak with your current doctor, or they might want...
  3. Fiddle-Faddle
    Wish I could say yes, but all I did was adapt it from a recipe I clipped from the paper years ago (there was no author listed to credit)! They called it "Almost Pineapple Cake." I like "Pineapple Fake Cake better."
  4. Fiddle-Faddle
    Pineapple Fake Cake 4--7 slices cubed gluten-free bread (use 4 if you have a really heavy bread like Food for life, and 6-7 if you have a teeny tiny loaf. If you have home-made bread machine bread, 5 is probably good. ) 1/2 cup softened butter, margarine, or coconut oil 3 eggs, beaten 3/4 cup sugar 1 10-oz can crushed pineapple, drained. Preheat...
  5. Fiddle-Faddle
    Did they try tacrolimus? Open Original Shared Link Adult Autoimmune Enteropathy Treated Successfully with Tacrolimus Abstract Background: Autoimmune enteropathy is a life-threatening, chronic disease of the small bowel mucosa, which generally responds well to steroids. Treatment requires long-term immunosuppression, and steroid-sparing treatment strategies...
  6. Fiddle-Faddle
    Sorry to be causing confusion! I assume B12 deficiency can have many causes; but I do know that, assuming a healthy diet, vitamin deficiencies indicate an intestinal absorption problem. Celiac is the most common cause of absorption problems; it damages and eventually destroys the villi, which is what absorbs the nutrients. At any rate, B12 deficiency...
  7. Fiddle-Faddle
    And celiac causes B12 deficiency...
  8. Fiddle-Faddle
    I bet it's the only thing he's tried that relieves the itch. If what he had was DH, then I can totally understand. I would have done ANYTHING to get rid of the itchy, burning, oozing, hideous rash. Thank heavens, all I had to do was stop eating gluten. What do you think the chances are that anyone told him to eliminate gluten from his diet?
  9. Fiddle-Faddle
    Either way, he goofed. He should have done a biopsy no matter what it looked like, because often damage can be patchy, and early-stage or mild damage is only visible under a microscope. And with a high IgA, he should have been looking for celiac and done a biopsy no matter how healthy everything looked. There have been people who posted on this...
  10. Fiddle-Faddle
    Hi, pugluver (LOVE the name!! ) Gluten intolerance is not an allergy. People who are gluten intolerant actually do have the same response (i.e., NOT a histimine response) as people who are celiac, and, unless they have a separate wheat allergy, will have negative allergy tests. The only official difference at this time is the villi damage. If...
  11. Fiddle-Faddle
    I can't bear to write this, but--Noah died earlier today. The funeral will be on Sunday. If anybody has any advice what I can say to his parents that might actually be comforting, please let me know....
  12. Fiddle-Faddle
    :D
  13. Fiddle-Faddle
    It's a bit difficult to navigate the foodphilosopher website. Here is the page for the chocolate chip cookies: Open Original Shared Link (To get there from the home page, click on "gluten-free recipes," then "gluten-free archives" then "3 foolproof recipes to get you started." They COULD organize that part a bit better, I think, but the recipes are so...
  14. Fiddle-Faddle
    Hi, Katie, welcome aboard! You might try posting another thread about apraxia under the "parents of kids with celiac" section. That way you'd get more replies from others who have similar experiences (they might not read an "allergy" thread). I'm also not convinced that apraxia is not part of the autism spectrum. One of my kids was diagnosed with...
  15. Fiddle-Faddle
    All I can think is that with the brown rice flour, there will be a difference in weight based on how fine the grind is. Did he say what kind he uses? You might look at the gluten-free chocolate chip cookie recipe on www.foodphilosopher.com, which tastes as close to Tollhouse as I've ever had. See if the proportions are similar to Alton Brown's recipe...
  16. Fiddle-Faddle
    As you probably know by now, the psych meds try to address the symptoms--but not the cause or causes. I think you'll be a marvelous doctor! We need more doctors who have been through it all! I agree with ravenwoodglass, though I haven't the experience that she has under her belt. But it does make sense--if you are taking several meds that have neuro...
  17. Fiddle-Faddle
    Most puddings are thickened with cornstarch. You could make a cornstarch pudding with stevia instead of sugar, let it cool, etc. And coconut milk is pretty thick all on its own! Mmmm, coconut--yummy! I think another thing that might work would be to whirl some uncooked minute rice in the food processor til it's a powder, add a bit of boiling whatever...
  18. Fiddle-Faddle
    Welcome aboard, princezz! (Is that like "princess," or like "prince zz?") I just looked up paresthesia and found this: Without a proper supply of blood and nutrients, nerve cells can no longer adequately send signals to the brain. Because of this, paresthesia can also be a symptom of vitamin deficiency and malnutrition, as well as metabolic disorders...
  19. Fiddle-Faddle
    That's what I thought when I was a student a million years ago. Now, as a mom of 3 with a full-time job, I find myself wondering how I ever could have thought myself busy as a student. They should make a reality cooking show about a mom making dinner (gluten-free, of course--everything from scratch, even the bread!) with a baby on her hip while helping...
  20. Fiddle-Faddle
    From a talk by Dr. Kenneth Fine: "Small Bowel Biopsies Samples of tissue lining the upper small intestine are taken with an instrument inserted through the throat and stomach. The tissue is examined for damage under a microscope. This test been a standard but it also has some reputation for not finding any damage in some patients that nevertheless...
  21. Fiddle-Faddle
    Is it similar to the flaxmeal skillet bread recipe on page 1 of this thread? And who is the author of 125 Best Gluten-Free Recipes? That flaxmeal skillet bread really DOES taste like "real" bread, as evidenced by the gluten-eaters in my family, who say they like it better than store-bought "real" bread and scarf it down as quickly as I can make it! #...
  22. Fiddle-Faddle
    My son also seemed to react more with whole wheat than with white bread. Does anybody have a scientific explanation for this? I thought white bread was higher in gluten?
  23. Fiddle-Faddle
    Sounds like an absolute given that either gluten intolerance or celiac is a family problem for you! Which means that the GI doc will be very happy--he'll make lots of money doing endoscopies on all of you to confirm what the bloodwork already tells him--you shouldn't eat gluten. The bloodwork is more accurate than the endoscopy; you have 22 feet of...
  24. Fiddle-Faddle
    If it makes you feel any better, those are very similar to my own blood test results (though mine were likely screwed up by being on prednisone), and I thought it was MORE than enough to warrant going--and staying--gluten-free. And I didn't even bother with genetic testing. I don't think they know enough yet about genetics to rule celiac out (there ARE...
  25. Fiddle-Faddle
    May I suggest that you post a list of what you are eating on any typical day (breakfast, lunch, dinner, and snacks, everything)? That way, maybe one of us can figure out if it is a specific ingredient or if it's a dietary balance sort of thing. I also wanted to ask about the Ore-Ida Fries--that might be worth a specific post to alert others! Do ALL...
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