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Fiddle-Faddle

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Everything posted by Fiddle-Faddle

  1. Fiddle-Faddle
    I was on TPN for two weeks in my second pregnancy because I couldn't keep anything down. At that point, I had never heard of celiac, and only now realize that the reason I couldn't keep anything down was because I kept trying to eat crackers like the doctor told me to....
  2. Fiddle-Faddle

    ARCHIVED New Here

    Fiddle-Faddle replied to Joss's topic in Coping with Celiac Disease

    The biopsy is unfortunately a very inaccurate way to diagnose celiac. Sure, IF they find damaged villi, it's a no-brainer positive diagnosis--but you have 22 feet of intestine, they take 6 one-half inch samples, and villi damage is often patchy and not visible to the naked eye. That gives you something like a 1 in 22,000 chance of their biopsying an affected...
  3. Fiddle-Faddle
    The school is going above and beyond--the whole school is praying for Noah every morning until he comes home!
  4. Fiddle-Faddle
    Keep in mind that it is possible that she may very well HAVE celiac, but if the villi sample he takes happens to be undamaged, he will say that she doesn't have celiac. If he only takes 6 1/2" samples, and she has 22 feet of intestine, with only partial villi damage, he only has 1 6 in 1200 chance of getting an affected sample. And villi damage is often...
  5. Fiddle-Faddle
    My understanding is that there is no problem with casein in human milk as long as the mother isn't consuming casein. It's only milk from other mammals that are the problem--cow milk is meant for baby cows, who have 3 stomachs.
  6. Fiddle-Faddle

    ARCHIVED New Here

    Fiddle-Faddle replied to Joss's topic in Coping with Celiac Disease

    First of all, your doctor is wrong about the test being irrelevant. Sounds like you already have confirmation of a problem with gluten just from the bloodwork, not to mention the diet. Unless there is something else he is specifically looking for in an endoscopy, I see no reason to intentionally poison yourself and damage your body to satisfy his curiosity...
  7. Fiddle-Faddle
    The genetic camp is not necessarily exclusive of the mercury and antibiotic camps--what if the only genetics involved here are the inability to excrete mercury and antibiotics effectively? Larry King had Holly Robinson Peet and Jenny McCarthy on CNN last night, as well as a doctor whose name I didn't catch, and I was so thrilled! The whole time, she kept...
  8. Fiddle-Faddle
    Thanks, Amanda. He is very sad and very serious. I emailed his teacher at school to see if the class could pray for Noah, even though most of them don't know him. We so wish we could do more than pray....
  9. Fiddle-Faddle
    Good question: Rice Dream has changed their box so that they are now not listing the barley enzymes and calling Rice Dream gluten-free, even though it's not. I would guess that the ice cream is made from Rice Dream and therefore not gluten-free, but it's best to check directly with the source.
  10. Fiddle-Faddle
    I only just saw this thread--I'm so sorry! Sending prayers and good thoughts Silvia's way and yours, too, Amanda! Please keep us posted. When I was looking up Noah's encephalitis, I saw several links to "vaccine-induced encephalitis." Given her history, I would delay all vaccines until she is much, much older.
  11. Fiddle-Faddle
    I agree with everything Ursa said, and want to add that your daughter is ADDICTED to gluten. It's like telling a crack addict that they can't have it now, but that there's a chance that they could outgrow the problem and be able to have it again, isn't it? Of course she will keep checking! Gluten does that to us--it affects the opiate receptors in our...
  12. Fiddle-Faddle
    Not arguing here, just wondering WHAT else they would be looking for? I have seen so often "they might be looking for something else," but the doctors never specify what that might be.
  13. Fiddle-Faddle
    To paraphrase something I read on this site last week (but can't remember where): For those who think that what we eat has no direct effect on brain function: Go into a bar, drink 4-5 drinks, and then see how well your brain functions.
  14. Fiddle-Faddle
    Scotty, there is also the possibility that many of your relatives have undiagnosed or misdiagnosed gluten problems. For example, if they have ever been diagnosed with: thyroid disease (Hashimoto's or Graves, underactive or overactive) rheumatoid arthritis diabetes fibromyalgia IBS (inflammatory bowel syndrome) Crohn's (which IS a real disease, but...
  15. Fiddle-Faddle
    Apparently, it started with a stomach virus. Thank you so much, everybody. From what I have heard, it still looks grim. Please keep the prayers coming....
  16. Fiddle-Faddle
    I am so sorry . How wonderful that you were in each other's lives. I hope the relationship continues with his wife and daughter. He was very lucky to have such a caring nurse as you. {{{{{HUGS}}}}}} and prayers for him, his family--and for you.
  17. Fiddle-Faddle
    I have (finally!) learned to wash, dry, and chop salad greens and keep them in a Tupperware container in the fridge. I also wash and chop green onions and red peppers, dice cucumbers, and I buy pre-shredded carrots, and keep them all in separate containers in the fridge. They stay fresh in the individual containers for several days, so I only have to wash...
  18. Fiddle-Faddle
    Oh, how awful. #1) What proof are they providing as to the "dangers" of the GFCG diet? What do they think is in milk and wheat that an autistic person needs that non-autistics don't need? #2) What about those who report miraculous improvements in their autistic children (or in their autistic selves) on the Gluten-free Casein-free diet? Does this person...
  19. Fiddle-Faddle
    My middle son's friend has encephalitis, and has been hospitalized for over three weeks. He is in a medically induced coma. If any of you would hold him in your heart and send up a prayer on his behalf (and his family's), I would be very grateful. If you could put him on your church's prayer board, his name is Noah. And he's only 8 years old. Thank...
  20. Fiddle-Faddle
    There are several other threads about endoscopies in children under 6--they are very UNreliable, especially for the under-2 kiddies. If he's only 13 months old, he can't have been consuming gluten long enough to result in villi damage anyway, unless he's been given wheat products extraordinarily early. (Most baby books say to avoid the common allergens...
  21. Fiddle-Faddle
    Perhaps we can all agree that there are two totally different, totally valid ways of looking at celiac disease? Viewing it as a disease is certainly valid. It is labeled a disease by the medical profession. It is equally valid to view it as poisoning by a toxic substance for which the human digestive system was never intended, at least, not the way...
  22. Fiddle-Faddle

    ARCHIVED Rice

    Fiddle-Faddle replied to Vykt0r's topic in Coping with Celiac Disease

    We eat rice at least 3-5 times a week.
  23. Fiddle-Faddle
    Tamara, that makes perfect sense and I'm sure you are not "baking challenged!" I'm just lucky enough to 1) live close to an Asian market who sells fine-ground rice flour, tapioca starch, and potato starch for 69 cents a pound 2) live close to a Sam's Club that happened to have the cool food storage bins (I just fill the bins about halfway--that's...
  24. Fiddle-Faddle
    I was buying the Gluten-Free Pantry mixes at Walmart for $2.79. Seems to me Whole Foods has been marking it up. Now they've introduced their own brand, and are selling it at 20 cents higher than what they should have been charging for Gluten-Free Pantry mix???? Yes, I'm grateful to have the choice. But I'm very, very angry that they are playing...
  25. Fiddle-Faddle
    There are lots of good arguments on this very subject here on this board! Many insist that the two are totally different due to genetics. Many insist that gluten intolerance (regardless of genetics), left untreated, usually leads to the very things that are considered "gold-standard" diagnostic standards for celiac disease: dermatitis herpetiformis...
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