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sugarsue

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Everything posted by sugarsue

  1. sugarsue
    Hello friends! I wanted to report that my daughter has been gluten free since her biopsy in August. She told me yesterday that she is almost back to herself. All her pain is gone and her mental state is so much better. I think in a few more months she will be 100%! She he glutened herself one night in error and by the next night she was pretty crazy...
  2. sugarsue
    Hello we got her biopsy results back and they are normal. The doc is calling her non celiac gluten intolerant and lactose intolerant. Now we will just wait to see if the gluten-free diet helps her. She does have elevated IgG to casein and wheat I know there is controversy on whether that test is helpful or not but either way we are hoping she gets...
  3. sugarsue
    My 15 yr old daughter had her endoscope today. The stomach showed signs of gastritis and she's starting some meds for that. The esophagus and intestine looked fine according to the doc. I've done some searching here and have read that I can't really have any thoughts on whether this might imply no celiac but will just wait for the results in a week. I...
  4. sugarsue
    Hello, I'm sorry for all you are going through! I thought I would share that a friend of mine has a daughter with EoE and she had to have a feeding tube inserted and only ingest the formula for nutrition. Over time, with one food at a time, they have been trying foods/spices she can tolerate to build up her ability to eat again. She is much improved by...
  5. sugarsue
    We found a great GI doc and saw her yesterday. She said my daughter's total IgA of 49 should be high enough for the test to register correctly. However due to her symptoms and former positive reaction to gluten free diet, she's scheduling an endoscopy and after that either confirm celiac or assume non-celiac gluten intolerance and she'll start her gluten...
  6. sugarsue
    Well, a different doc is checking for wheat allergy not the one who ran the celiac test. Interesting about the lyme and ttg iga, I didn't know that. So much to muddy the waters with her. She's been treated for lyme for many years but they keep coming back with other tick borne illnesses that may be infecting her. But since the testing is so poor...
  7. sugarsue
    So, I know I'm obsessing but...... University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test. If this is so, I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category. Why bother having a weak positive anyway? I just don't get it and our...
  8. sugarsue
    Cyclinglady - thank you for the confirmation and support. I've left a message with her doc to see if they will provide a referral to a GI and I'm also checking with our local Celiac group to see if they have any recommendations for docs that don't need a referral.
  9. sugarsue
    My daughter is really sick (long story) and she's been evaluated for Celiac. The doc looked at these results and said no celiac. Thoughts on the weak positive and the low total IgA? I read that low total IgA can cause the celiac test to not work. I'm thinking we should see a GI but not sure yet if we need a referral. Our doc referred us to an immunologist...
  10. sugarsue
    Hi, I found this forum tonight, we've been members of the celiac forum for a year or two now but I didn't know there was a lyme forum too. I am waiting for my daughter's Igenex test to come back and will go this week to get my test and my other daughter's test taken. We are all gluten intolerant and have multiple allergies and food sensitivities. My 9...
  11. sugarsue
    Do you have a history of strep infection? If so, please check out the possibility of PANDAS. There could be an association between celiac and pandas since both auto-immune conditions. PANDAS can cause anorexia, OCD, Tics, Tourettes and other neurological issues. Open Original Shared Link Open Original Shared Link Hugs to you and I hope you...
  12. sugarsue
    The super walmart near us has a gluten free section and sells Annie's gluten free mac and cheese. We love it. Also we think, Mai-Fan Rice Sticks is a really good pasta substitute, also available at super walmart. Easy low carb recipe books could hold a lot of ideas for you too. Good luck and I'm glad you found out what makes you feel better! Susan
  13. sugarsue
    Skigirl, I find it very helpful to hear how gluten affects others to try to understand what she is going through. I am allergic to wheat so when I get it I itch. But I don't have the neurological stuff and it's so hard to understand. Do you do anything to help with your anxiety when you get glutened? Susan
  14. sugarsue
    Lynn, this does sound very similar to my dd. I also have to worry about whether she is exposed to strep so this makes it so complicated. We have been gluten free for so long but really, probably too much of the little exposure. Thanks for the support.
  15. sugarsue
    Jazmine, thank you for your perspective as the child. That really helps. I want to be there for her and help her. It's just so hard to do when she feels bad and there is nothing I can do. I hope as she gets older it will get easier.
  16. sugarsue
    For those with neurological symptoms from gluten, how long does it take for them to subside after being glutened? How long did it take to feel better after going gluten free? My 8 yr old daughter is suffering (and in turn me too). I don't know for sure it's the gluten since she has another medical condition too. But I am desperate for information to...
  17. sugarsue
    Thank you both for your responses. I have seen a few other things that could possibly have been a seizure since that day but nothing like the first one I saw last week. Hopefully tightening her diet back up will take care of it. I have noticed her tummy hurting 1-2 days after a glutening. I think I just need to learn her new signs and of course start...
  18. sugarsue
    Does this behavior sound familiar to anyone? My 8 yr old dd is diagnosed gluten intolerant but she also is diagnosed with PANDAS (neurological reactions to strep infection). The PANDAS causes OCD and other intense behavior problems. She is undergoing some treatment for that and that, along with the gluten free diet have been what we have been doing to try...
  19. sugarsue
    My 7 yr old dd has seizures that we believe are caused by gluten. She's been gluten free for over a year and has not had a seizure since. I used to know within 10 minutes whether she had gluten (very bad BM's) but now things have changed and I can't tell any more. So I got a little lax on checking every ingredient. So she had a seizure this week. I...
  20. sugarsue
    Hi, my daughter is 7 now. She went gluten free when she was 6. At that time she weighed 39 lbs. In the past 1 1/2 years, she gained 11 lbs!! She grew 2 inches but is still small for her age (I'm not sure how tall she is). I have hope that she will continue growing and maybe she'll catch up. One thing that helped us with the weight was protein drinks...
  21. sugarsue
    Interesting! I still don't know what is going on here, and I can't seem to get my friend to tell me what brand of soup she used. Hopefully Monday when I see her I can ask her face to face. It never did make me itch so I'm leaning towards a gluten free soup. It's nice to know my dd may not get so sick with accidental glutening but I may need to adjust what...
  22. sugarsue
    Thanks you two... that makes the most sense, that it was a soup that was gluten free. I didn't know about these two brands. I will ask her and get that clarification. Plus, I'm happy to know about these soups for my own cooking! Susan
  23. sugarsue
    Yesterday at thanksgiving dinner, we ate a dish that had undisclosed cream of chicken and (I think) cream of mushroom soup. I assume it was campbells but I don't know. None of us got sick My girls are both seriously gluten intolerant (possible celiac but we don't know) and I am allergic to wheat. If I eat any small amount of wheat, my armpits wake...
  24. sugarsue
    That does look very smiliar! Does it itch? My dd's woke her up this morning it itched so bad. I just wish I could track it back to some gluten exposure. I hope g-ma will be more careful now! Have you had him tested for celiac? Why is the doc refusing a biopsy? He thinks it's unrelated?
  25. sugarsue
    Well, in that regard, there has been a lot more junk lately with birthday's, halloween, etc. We will cut back for sure now
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