Child - 1st Blood Test

[LisanJulia]

New to the site! My daughter had on-going belly upsets and poops a lot, so I brought it up to her Dr. and asked if they would test her for gluten. She is 10 years old.

Here are her results:

Endomysial IGS                             positive

Endomysial IGA AB Titer              1:80  (ref -1:5)

Gliadin AB, IGG                             28 (ref -20)   

Gliadin AB, IGA                              100 (ref -20)

Transglutaminase IGA                  46 (ref -4)

Of course, they wanted to do a biopsy, but I am not sure that I want to put her through this procedure, despite the low-risk.

She ruptured her appendix in June (2015) and spent weeks in the hospital, as they treated the infection/inflammation. They delayed surgery until September (apparently the new way to treat a rupture in some cases). She was treated at Children's Hospital in Boston for the appendix and is being seen there for celiac.

The Dr. said she would prefer to do the biopsy, but considering her blood test, would feel comfortable dx her as Non-biopsied Celiac Disease.     The Dr. also mentioned that in European standards that considering her blood test results, they wouldn't even do a biopsy and would automatically dx her with celiac (if that matters).

Am I doing the right thing by not allowing a biopsy?? Dr. said we would redo blood test in 3 months, then 6 months, etc to make sure her blood test is declining. We just scheduled her 1st Celiac 101 class with the nutritionist.

My daughter went through so much with her appendix and I feel like she is just starting to be herself again, so prefer not to put her through anymore procedures, esp since the surgeon said that she has scar tissue and some inflammation will linger on for a bit.

We don't have any confirmed cases of Celiac in our family - that we know of.  I, however, suspect that my mom may have it, she was dx with Diverticulitis, but never tested for celiac. We do have some other food allergies (nephew: milk, soy, eggs), asthma (2-nephews), skin issues, not sure if they come into play.

Thanks for any insight.

Lisa

[Irene Joanne]

It depends how soon you could get her in for a biopsy. I know someone recently with a six year old that had positive blood work for celiac- this girl had levels in the 200 range and after two blood tests with the same resullts, the doctor said there was no need for the biopsy and she just went gluten free. 

Personally I would get it done if I could get in really soon- in Canada, it's free to go for a biopsy, but often kids have to wait for six months to get in for it. No way I would put a really sick child through eating gluten for another six months.... But then you have to be determined you will have her stick 100% to the diet for LIFE

[mamapjama]

The endoscopy is fairly easy and causes no pain before or after. My daughter said the worst part was the IV she in and out in 10 minutes and was out of recovery in 20 minutes. She had negative initial blood work but biopsy due to ongoing stomach pain and nausea for  6 months. Dr did not suspect celiac until biopsy confirmed it. He is now doing 4 more very specific tests (including gene testing) and we were told put her on a gluten free diet asap. I would do the procedure it will not be like her previous surgery at all and she should be fine.

[southpaw13]

I was apprehensive about the EGD for our kid at first. Turns out, it was very easy for her, minimal recovery and no discomfort. For me, after the fact, it is 'good' to know the level of damage she had to her small bowel, as she was fairly asymptomatic when she was diagnosed-- just knowing what her insides looked like really drives home how important the gluten-free diet is for her. The biopsy def made things more real for us, and for those skeptics in the family.

An EGD is nothing like an appendectomy, for sure!

[StephanieL]

Do the biopsy ASAP and keep her ON gluten till it's done. You will always have lingering thoughts if you don't. Also if you are in Boston, one of the leading Celiac experts is there. He'll recommend the biopsy I'm 99% sure!