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...

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...

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...

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...

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...

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...

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...

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.

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...

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...

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...

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

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

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.

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.