Daughter With Possible Celiac Disease

[Orinda]

My little girl (recently turned 7) has been suffering from mild-to-moderate stomach pain for months. The first suggestion given to us by her pediatrician was to go lactose free. This we did for several months to no improvement, so a couple of weeks ago I took her back. They then ran a series of blood work on her, including a celiac panel. Everything came back normal except for one thing in her celiac panel -- the tTG Iga. We were referred to a pediatric GI doctor in Kansas City, who I took her to last week. They repeated the tTG IgA blood test.

Today I got a call with the results. They want the value to be below 20 .... hers was 115. The nurse I spoke with said that likely means she does have celiac disease but this doctor wants to do an upper GI scope with a biopsy.

Do you think I can assume she has it based on this blood work? Looking around this looks to be an extremely high result. They said not to change her diet at all as it can affect the biopsy but I'd like to get started learning and researching now because I know so little about celiac disease. I understand it's genetic -- the doctor said that we should all get tested if she turns up positive. I'm also expecting a baby (my fourth child) due December 25th and I'm worried I won't be able to go with her to her scope. My husband will if I can't but I hate not being there for her.

Thanks in advance,

Monica

[nmlove]

Hi there, my family was just in the same boat as you. My son had very positive blood work but the pediatric GI doc we saw wanted to do the upper endoscopy to confirm. We had no history of celiac disease and there were possibilities other than celiac - a slim chance but still possible. We decided to do it. My son did great. It was really quick (10 minutes max from the time we left him going into the procedure room). He had no effects from it other than being groggy for a couple of hours. Obviously he was positive as I'm still around this board. He's been gluten-free for 2 1/2 months now. The rest of the family was tested. My husband and I were negative but my two year old was positive. The pediatric GI doc agreed to diagnose and treat him without the endoscopy based on the family history. I have a 5 1/2 month old who's not been introduced to gluten. By chance we found a research study through the University of Maryland's celiac research center and decided to enroll her. We're still awaiting the genetic testing.

Good luck! Trust your instincts.

[NewGFMom]

We didn't biopsy, we were already gluten free by the time we got into see the GI and I flat out refused to start feeding my son gluten when he was already getting better.

But I don't know of anybody who has regretted the decision to biopsy. It's a very quick and safe procedure and it might be good to know the extent of the damage. If my son had been older I would have done it.