blmoreschi

We are 2+ years post diagnosis, and I rarely go on this forum anymore because "we've got this". But I wanted to share that I noticed the articles about the non-responsiveness of kids with Celiac to the Hep B vaccine. I mentioned it to our doctor at Children's Hospital of Philadelphia, and he had never heard of it. I sent him links to the article and his response...

We went to a Pret A Manger while visiting Chicago over the holidays. I had done my research for my daughter and THOUGHT I knew what to do. But nothing was labeled (unlike I had read it was) so I asked the manager for a list of their gluten free items. He told me that they don't provide it anymore, and have removed all gluten-free labeling from their products...

I guess every kid is different. My daughter was diagnosed in April 2013 at age 11. We immediately went entirely gluten free - our entire household. Her initial TtG was 99 on the scale where <4 is normal. She was retested 6 months later and it was down to 6. We just got results yesterday from a bloodtest this week, and she's <1. (we were doing a blood...

That's a tough one! My daughter is a year younger, so we're not there yet. So, I really don't have any advice except good luck. It's a tough age. My daughter also doesn't like to be singled out (won't eat her food we pack for her and chooses to go hungry instead in group situations ).

I recommend getting one of the product guide books, such as Cecilia's Marketplace, to help you navigate the grocery store at the beginning. It helps you figure out which barbeque sauce is okay, etc. I referred to it constantly at first but haven't opened it in months now. I can't seem to put in the link, but you can just google it and order online.

Prior to diagnosis, one of our best ways to get a somewhat decent breakfast into our daughter was a Carnation Instant Breakfast. In our search to find a replacement for that, I ordered a product from VitaCost.com called Spiru-Tein for kids only (not sure on that spelling). I thought it was a perfectly suitable replacement, but our Miss Particular didn't agree...

Mellow Mushroom pizza! We ate there last summer as we passed through town and loved it. I don't know exactly where it is in relation to where you are staying, but it wasn't far from World of Coke. They have a disclaimer at the bottom of their menu, but do have a separate prep area, etc. We have eaten at another one and have had great luck.

We went gluten-free last April due to my daughter's celiac diagnosis, and I, too, was very confused about the flour blends. It seems that every cookbook I bought or checked out of the library called for something different. My suggestion is to find a book you like and go with that blend to start - either a purchased one they recommend or one you blend yourself...

My 11 year old lost 5 pounds in a month when she was healthy - not even a cold. And no noticeable change in appetite. That was Dec 2012, and she was diagnosed with Celiac in April 2013. I had 3 different doctors tell me the weight loss was no big deal, and they all had to do some major backtracking when it turned out she had Celiac. She didn't have any GI...

Chipotle is our favorite now. We always ask them to get fresh lettuce and cheese bins out for my daughter's burrito bowl, which they do. All locations change their gloves, and we've been to one who changed spoons. I don't insist on the spoon change because I'm not sure it matters. At some restaurants we really have to watch them to make sure they don't hand...

I thought the TtG was supposed to be under 20, not 4? No matter which is right, you must be doing a great job to get it down that much in 6 months! And I don't think the oats would affect that if they are gluten-free oats. I think some Celiacs just can't tolerate oats, but they do not have gluten in them and so therefore should not affect the tTG number...

I've been reading the advice about dancing on pointe with great interest. My 11 year old celiac daughter with Osteoporosis (-3.4 in her spine, -2.8 in her hip, so pretty severe) is a dancer and all the doctors have said that dancing is the absolute best exercise for her to help build her bone density. She has been gluten-free 9 months now. She does take lots...

My 11 year old has Osteoporosis from undiagnosed Celiac. She also has mild scoliosis, which is being watched very closely because of her low bone density. So in that sense, I think it is related. Her bones are very thin and the doctors seem to think that is reason to watch for the scoliosis more.

Osteoporosis is also what led to my 11 year old daughter's Celiac diagnosis last April. After 6 months gluten-free, her TtG was down to 6 (previously 99) and we presume that her gut is healing well. I have, belatedly, decided to put her on probiotics, too, based on all my reading. Her bone density did not show any improvement in 6 months. Because she is pre...

We were on the road New Year's Eve, traveling from Chicago back to home in Virginia. We were (successfully) outrunning the storm and just went as far as Indianapolis. We decided to get carry-out from PF Chang's and eat in our hotel room so the kids could watch all the Ryan Seacrest shows. I ordered online from my phone and we ordered all gluten-free items...