Was Diagnosed As A Child Then Taken Off gluten-free Diet

[karenhockley]

Hello all,

I was diagnosed when I was 9 months old (1974) then when I was 8 (1982) the doctors put me on a gluten challenge and I tolerated it well. Then in my early 20's I stared having problems again and when to my family doctor or rather the doctor that was taking over his practice while he was away and she said that I was misdiagnosed in the first place and that I had IBS. I was going to go back to my family doctor when he took over his practice again but he ended up retiring. So I lived with the symptoms. After having my 3 children the symptoms got worse. I had horrible joint pain and it was mostly in my hips also I was extremely exhausted along with the bathroom issues and constant bruising, just to name a few.

About 6 months ago I decided to be proactive about my health and went gluten free. Within 2 weeks most of my symptoms went away and it too about 3 weeks for my hip pain to go away. I went to do Doctors about 4 weeks into the diet and he did a celiac blood panel but it came back negative (no surprise there)

I guess what I'm looking for are others that are in the same boat as I am. Ones that were diagnosed as a child then told they were in remission. I feel so alone and I'm having a hard time finding answers as to why the doctors in the past just brushed it off as IBS and said I was misdiagnosed.

[tarnalberry]

it used to be thought you could outgrow celiac. we know now that it isn't true, though many adolescents go through a "honeymoon" period where damage may occur but no symptoms that are easily recognizable.

[munchkinette]

Oh, this is exactly what happened to my grandmother. I had no idea she had "wheat problems" until I told my mother that I thought I needed to start the diet. My mother told me that my grandmother was on a very simple diet of rice, bananas, and chicken when she was in her 20s. (1940s) Eventually they told her she grew out of it. I never knew because my gran passed away about 6 months before I tried the diet.

My gran had so many health problems, her whole life. A couple of those were autoimmune. If you look at the list of problems/diseases linked to celiac, my gran had about half of them. Her sister had multiple sclerosis and her mother died of colon cancer. Seeing what happens without the diet is great motivation to stay gluten free.