gratefulmom

Hi Stephanie! Yes, when I read the your post (Gemini sent a link to a previous conversation), I felt an instant connection, as we are in a similar situation. How did things go at your visit with Fasano? Do you have any new info., or are you waiting? How frustrating! Yes, my daughter did have a positive biopsy 2 1/2 years ago. She was at a Marsh 3B, which...

She does have a celiac specialist at the Children's Hospital, and I think he's considered to be a celiac expert. He did test my daughter for the B levels (at my request), and those levels were thankfully fine! Her vitamin D was very low last year, but that's gone up (she's now in the low normal range). Her thyroid stim. hormone level was in the normal...

Okay.... I hope this response goes out to everyone who's replied to my post! I'm still trying to dial in how this conversation thread works! I reread the article, and I've also read your responses. I can't tell you how much I appreciate you sharing what you've learned, as it's clear that you are passionate about your researching and sharing of the subject...

Thanks so much. I will definitely go to Stephanie's link. Looks like I need to dig a little deeper with checking out the AI possibilities. I feel guilty getting a second opinion, but we may go that route soon. I appreciate all of your feedback. It's super helpful!!!

I just read through this study, and I plan to read it again and try to really get my brain around what it's saying. I just looked up "refractory celiac disease." How long would a person be on a strict gluten-free diet with the body not responding before the person is classified as having this refractory version of celiac? Sounds like my daughter fits into...

Okay then. Thanks so much for pointing me in that direction. Not thrilled about the thought of it, but we need to get to the bottom of it. Thanks for the reply!

Does DGP mean Deaminated Gliadin? Her IgA Gliadin has gone from 110.6 down to 15 so that's now negative (yay!), and her IgG Gliadin has gone from a 46.8 down to 17.9, which is negative, too (yahoo!). For both the IgA and IgG, less than 20 is considered negative, 20-30 is a weak positive, and 30+ is a strong positive. What you're saying coincides with what...

I am new to this forum, and can't figure out how to find StephanieL's posts. When I put her name in the search bar, I can find threads where she's made comments. Do you know the title of her thread on which she's discussing her situation with the high TTG levels? Thanks!

Karen, that is a good question to ask. We are certain that she is not sneaking it. My husband was actually her math/science teacher, so he was able to supervise the eating situation at school fairly well. She doesn't eat out at restaurants, with the exception of one dedicated gluten-free restaurant that we go to when we make it to the city. When she goes...

I will definitely look up Stephanie's posts. I am just trying to figure out if I'm being paranoid, or if this is still a big concern! It will be extremely helpful to compare notes with someone who's going through a similar situation. Many of my daughter's symptoms are gone, although her symptoms were (and are) more neurological than gastrointestinal. ...

Thanks so much for your reply! I will look more carefully into her liver test levels. I am wondering why our gastroenterologist is not more concerned. I'm also curious what a typical TTG level is for a 9 year old who's been on a gluten-free diet for years. How concerning is a TTG level of 47 in a child of this age? Do you think this could be a false...

My daughter was diagnosed with Celiac 2 1/2 years ago. At that time her IgA TTG level was 149.6, and deaminated gliadin levels were quite high as well (110 and 47). Since then, her levels have been coming down gradually, but her TTG level is still in the "strong positive" range (it's now at 41.7). We do not do any gluten cooking in our kitchen, I've cleaned...