So I’ve been eating gluten free since doing a further blood test and that came back giving a positive result, they said I could go back and have another endoscopy  but just didn’t want to go through that again. I’ve been gluten free since October and do feel a lot better so have just accepted that this is the way for me now, even though results are still ambiguous. 

Any updates? Was it celiac or no?

Hi,  My daughter has reacted to casein and the symptoms are unmissable- totally gluten symptoms. Joint pain, nausea, intestinal spasms. This has happened ten months after we went dairy free along with gluten free post diagnosis. I am certain she is reacting to casein. We never did oats for the same fear. Not even going to try the Certified one.  It might be worth looking at the meds- xanthan gum, guar gum, and cellulose gum is also what she reacts to. I bet you’ll find them in every OTC for kids.  We have stopped using things like honey -!: ketchup as well. Basically anything coming out of a packet.  My daughter was diagnosed with >100 ttg. Five months later in was down to 13. But then she had literally no symptoms.    As time has passed she reacts to slightest of things. We have obviously stopped casein, we only needed it for butter, because almost every cooking oil has been prone to contamination for us. It’ll be interesting to see what her labs look like in June, which will be an annual antibody test. We decided not to test her at six months this time because I was certain she was reacting to many things . She is six now and was diagnosed at five. I cannot tell you how wrong the doc was when she said oh just don’t eat gluten and she’ll be fine. Doctors send ups packing like that. I wished it was as simple as that.    I hope your daughter feels better soon.   

If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  

Let us know how the test results turn out.  This article, and the comments below it, may be helpful: