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About sugarsue

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  1. 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.
  2. 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?
  3. 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.
  4. 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
  5. 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.
  6. 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. Hugs to you and I hope you find the answers you are looking for. Susan
  7. 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
  8. 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
  9. 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.
  10. 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.
  11. 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 try to help her. She's been gluten free for 1 1/2 years but I could be better regarding the cross contamination or hidden gluten. I know she's been glutened recently several times from my stupidity. Susan
  12. 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 to be more careful again. Susan
  13. 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 to help her. This can happen any time during the day but it is much worse at night. She will become worried that I am mad at her. Anything can trigger it. Then she will whine, plead, beg, cry "are you mad? don't be mad? you're mad right? Mommy, Mommy, Mommy, please, don't be mad" etc... and she won't stop. Nothing I do can get her to stop. I am a mess from this. I can't even begin to explain how horrible it is to experience. I can't breathe, I need to get away, but she follows me everywhere with this. The more I try to get away, the worse she gets. She just won't stop. If I react, that's proof to her that I really am mad. If I don't react, she does not believe me that I'm really not mad. I have been assuming all of her behavior issues are related to the PANDAS but recently I am wondering if this one is hidden gluten. I have allowed her to eat oats and other items that could have cross contamination, have not always checked her sauces at restaurants, etc. since she never had the gut reaction and is not diagnosed celiac. But recently she has had an obvious reaction to gluten that has made me wonder. Of course I plan on tightening up her diet right away and see if it helps. I just thought I would come and post to see if this sounds like anything that anyone else experiences. I truly do not know how to handle this. My inability to help her, reason with her or just plain force her to stop is pushing me to the limit and I feel like I am going to lose my mind. Susan
  14. 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 have tracked back and I know where she got some good doses of gluten. So of course I am getting the diet back under tight wraps. But this has me thinking. We don't have a celiac diagnosis but we do have a gluten intolerant diagnosis since the tests have been inconclusive. Does anyone know if seizures caused by gluten implies celiac? Or can non-celiac gluten intolerance cause seizures too. I think it is just splitting hairs since if gluten is causing her seizures, she can't eat any gluten. Thanks. Susan
  15. 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 like Boost. Susan