Newly Diagnosed

[celiacdadillinois]

My 7yr old daughter was just diagnosed from her blood test. Our GP just recommended we go straight to a gluten-free diet. He thought we didn't need to do a biopsy since the blood tests were pretty accurate and we would get confirmation if her symptoms disappeared after changing her diet.

I'm wondering if I should push for a biopsy just to make sure. We only started her new diet a few days ago.

I'd hate to subject her to a biopsy if not needed but I think we need to make sure if she has to go through such a major lifestyle change.

Should we just proceed with the gluten-free diet and see if her symptoms disappear. Is that a good enough confirmation? Has anyone else gone this route?

[Guest Haypaula]

Hi,

I think that your MD is conservative and that is a good thing with a child. A change in diet is much less invasive than an endoscopy. My 10 yr. old just had one last week and although I love my MD, she was left quite sore due to removing the biopsy tissue from areas that were already irritated. If I had to do it again, I would have waited to receive the blood results (which were very positive) and not had the endoscopy done. It is not a horrible procedure but for a 7 yr. old it is emotionally upsetting. There are also complications that can occur...not a huge chance of this but still...you have a diagnosis, I would go gluten free, help her deal with the emotions of making this diet change and go from there. Best of luck to you and your family. Paula

[Guest Evelyn's mom]

I agree,

While the "gold standard" was and may still be the positive biopsy, the more I've learned sometimes that even has false negatives. If the blood tests are postitive and she responds well to the gluten-free diet, I think you have your answers. It used to be that Celiacs would go in again for a follow up biopsy to make sure the intestines were being repaired. That is no longer necessary now that we have more sophisticated blood tests that can find hidden gluten in the diet. Not to mention the awesome testing Enterolab is now offering.

We put our daughter through the Biopsy and looking back now I wish we would have known more and decided not to. It is a very tough procedure for little ones. Evelyn was 13 months when she had hers. We saw instant results from the gluten-free diet.

RaeAnn

[celiac3270]

My bloodtests showed that I had it, but I did the biopsy anyway....and it also showed that I had it. If the doctor is confident enough about the Celiac, it shouldn't matter. In addition, if you've started her on the diet, and you now plan to get the biopsy, then she's going to have to go back to eating gluten for an accurate test. you might be better off starting to heal her intestines now...besides, even if she isn't Celiac, the gluten-free diet is extremely healthy for anyone.

[DawnI]

My 2 kids ages 3 and 9 had the biopsy - it was no big deal, by the afternoon they were running around like nothing happed. 1 tested positive....

This year my DD age 4 bloodwork came back elevated so we are going to do another biopsy, b/c the ped. gastro, says the bloodwork is not always accurate.

My adult gastro also said the bloodwork is notalways accurate and tested me with a biopsy. It was nothing, it is more the anxiety of it.

Be Careful how you approach it with your daughter, we just say it is something we have to do and go from there - we dont make a big deal about it, My son will say he can't have something and either make a different choice or do without.

We found out about my kids having it (also tested their genes) b/c my husband found out too late he had it and it went into lymphoma and he passed last year.

there is so much info on the web about this disease and there are so many regular products that it isn't as "bad" as you first think it is.

Dawn

[kalo]

Dawn, I am so VERY SORRY to hear about your husband. I had a friend who had lymphona and went through a lot. Since learning about celiac disease I've wondered if she had it. Wishing you and your children the best. Hugs, Carol B