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sugarsue last won the day on August 12 2016

sugarsue had the most liked content!

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About sugarsue

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    Star Contributor

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  • Interests
    Lyme disease, Hashimoto's, Celiac, Gluten Intolerance, PANDAS,
  • Location
    North Carolina

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  1. 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 again. She knows for sure now it was the gluten causing her mental issues and is learning how to watch out for her food. As always thanks for your support. Even without a celiac diagnosis we have learned that gluten is so very damaging. I wish mainstream docs would suggest gluten-free before just referring kids to psychiatrists for drugs. i spent thousands trying to figure out what was wrong.
  2. 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 well going gluten-free
  3. 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've started her on a "gluten free" diet today, in quotations because I'm allowing "made on shared equipment". If she turns up with a gluten intolerance diagnosis, any thoughts on whether this is a good or bad idea? Her GI doc said if not celiac, we will have to find out what level of exposure she can have without having symptoms. We are still going under the assumption that gluten-free will help her because it has in the past. Obviously I'm grasping at straws because the waiting for results is painful as you all know.
  4. 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 this even though so drastic a measure. Good luck to you!
  5. 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 free diet again and I hope it helps her! I will post the results just for informational purposes here in case anyone searches for total IgA posts in the future. Thanks for your support!
  6. 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 and nothing is solid in her testing, I am needing to look at every avenue I can to try to help her. It's just not adding up. As a young child she had sensory processing disorder, than PANDAS (reaction to strep), then Lyme. Was gluten free for many years until we added it back in about 4 years ago. Then 3 months ago started failing fast with psych symptoms of dissociation, anxiety, fears, unwanted laughter, joint pain, random pain, feeling ill after every meal, severe pain after wheat and dairy combo followed by diarrhea. I hope we get a good GI who will at the very least be willing to rule out celiac as we are running out of ideas. I hope after all her testing she will be willing to go gluten-free again regardless of what we find, to see if it will help her.
  7. 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 doc is on vacation so I won't know what he'll recommend for another week. I'll be finding out this week if we can see a GI without a referral. Our lyme doc (she's had lyme, may still have it, like I said it's a long story) is having her do an IgG wheat test but I don't think that has any bearing on celiac does it?
  8. 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. 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. She has a higher risk of celiac based off of DNA testing. She has hashimoto's thyroiditis. She has gut symptoms, pain and psychiatric symptoms. Low Total IgA (49 range 66-433) tTG IgG - negative tTg IgA - weak positive (4.2 range 4-10) DgA IgA - negative DgA IgG - negative
  10. 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 yr old daughter has multiple problems and so do I and I am becoming convinced it is lyme. We will see a lyme specialist soon. I wonder how celiac and lyme fit together.
  11. sugarsue

    Newbie Anorexic With Neural Symptoms

    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. http://www.webpediatrics.com/pandas.html http://www.latitudes.org/forums/index.php?showforum=17 Hugs to you and I hope you find the answers you are looking for. Susan
  12. 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. 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. 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. 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.