Baby/ Child Diagnosed?

[azedazobollis]

Please forgive me if Im totally off base. My daughter is six. She tested positive with a blood test for being "gluten intolerant". My dr. told me that to be diagnosed with celiac disease, she would need and intestinal biopsy. Both he and I agreed that at her young age, it is not a necessary procedure because it is so invasive for a small child. Regardless of that procedure- she needs to be gluten free simply because her tests reveal she is indeed "gluten intolerant". Im confused at these babies and children getting a "celiac" diagnosis. Is there some other way of truely discovering celiac disease that doesnt require an intestinal biopsy?

I am aware that my child may have celiac disease simply from her gluten intolerance. I see the obvious improvements in her health and her personality.

[celiac3270]

Hmm....there's bloodwork, which you mentioned. I think there's some sort of a Gene test, and then I think you can do a stool test, as well, but I'm not sure. There's the endoscopy and the colonoscopy, but those are both invasive.

[tarnalberry]

since, _technically_ celiac disease is _defined_ as being flattened villi from gluten exposure, most doctors will only take a biopsy as rock solid proof of celiac disease. doesn't really matter though - if she's gluten-intolerant, she needs to be gluten-free for life.

[3boyzmom]

Im confused at these babies and children getting a "celiac" diagnosis. Is there some other way of truely discovering celiac disease that doesnt require an intestinal biopsy?

Some doctors are more open minded than others... Some are very anal. Depending on your doctor you'll get a different answer. The textbook answer is no flattened villi, no Celiacs disease. Some would even report no Celiacs disease with just blunting of the villi.

The criteria for diagnosing Celiacs disease will be changing in the future. I am not sure what they will require for the diagnosis.

I have heard of doctors who use common sense and logic... child is failure to thrive on a gluten diet, has bloated belly, loose stool and positive bloodwork. gluten-free diet changes child completely and child is thriving... Child has Celiacs disease and stays on gluten-free diet for life.

It is simpler with a 'classic' case. it gets tricky when there is a 'silent' case. Then the only way Celiacs can be diagnosed is via biopsy.

I would like for there to be a 'pre-celiac' label or a 'gluten intolerant' label widely accepted, based on blood work and symptoms while on and off a gluten-free diet. SOMEDAY!

[lovegrov]

Children younger than yours get biopsies all the time. I support your decision not to have it done, but I've heard of kids as young as 2 having biopsies.

richard

[wildones]

My son had many biopsies/endoscopies (for other reasons- he has short gut-over 75% of his small intestines were removed as an infant) well before he was 6 yrs old. He did not have the classic flattened villi, but lymphocytes found during his biopsy that dx'd celiac disease. He has previously had false negative blood test results before the newer blood tests were readily available. If a child has + bloodwork, it really doesn't make sense to me to do a biopsy, because they still need to be gluten free.

[Guest Libbyk]

In case you decide to have your child undergo the biopsy, I wanted you to know that it is in no way painfull. Granted, I experienced it as an adult, but a very sick and unhappy and helpless one (at that point), so I was childlike . the only bad part for me was swallowing the numbing agent immediately before they knocked me out.

I hope you get the right answers in your search

Lib

[Boojca]

My son was 2 1/2 this June when he had his biopsy, and it was a piece of cake. The worst part was the IV, the rest of it was no problem. They put in an IV, and that's how they give the anesthesia. It burns a little going in but that lasts all of literally 10 seconds and then, BAM!, they pass out. THAT was weird. My pissed off, crying 2 year old son suddenly going silent and limp on the bed. And, the doctor warned me about that and said THAT is always the worst part for parents. And he was right.

Anyway, the procedure took all of 20 minutes, they sent us to recovery where it took about 20 minutes for my son to come out of it, and when he did he promptly asked for McDonald's. We had McDonald's, went home and he played all day. Much to my chagrin, I had hoped for a nice, lay low type of day watching movies or something. No such luck. ;-)

Does that help you at all??

Bridget