Should Biopsy Be Done

[beachbel]

Hi! My kids were just tested for Celiac disease because I have it too. Two of my children tested positive on the Iga - the range was above 20 is considered high. My son who tested at 24 Iga the children's GI at the hospital wants to do a biopsy on to confirm Celiac. My other son tested at 20 Iga and since they consider that on the border, want him to just eat more gluten for 6 weeks an then check his blood again. The child who tested at 20 Iga is seven years old and has diahrea and really foul smelling stools, which I believe are both symptoms. I am upset and disagree with the dr in waiting on doing the endoscope for him. What are any of your thoughts? What would you do? I just don't want celiac to be missed like it was in me for many years. I now have 4 other diseases because my celiac was out of control for so long. Thanks in advance for any ideas.

[Lisa]

Hi! My kids were just tested for Celiac disease because I have it too. Two of my children tested positive on the Iga - the range was above 20 is considered high. My son who tested at 24 Iga the children's GI at the hospital wants to do a biopsy on to confirm Celiac. My other son tested at 20 Iga and since they consider that on the border, want him to just eat more gluten for 6 weeks an then check his blood again. The child who tested at 20 Iga is seven years old and has diahrea and really foul smelling stools, which I believe are both symptoms. I am upset and disagree with the dr in waiting on doing the endoscope for him. What are any of your thoughts? What would you do? I just don't want celiac to be missed like it was in me for many years. I now have 4 other diseases because my celiac was out of control for so long. Thanks in advance for any ideas.

Beachbel,

The IgA test is specific for Celiac. Anything in the positive range is considered positive. That, in itself, is a diagnosis.

There is no need for a biopsy to CONFIRM the diagnosis as it's rare for false positives in the Serologic Panel. A biopsy can, determine the level of damage. Further testing through and endoscopy/biopsy would be a personal choice. No one can tell you what's right for you.

Your children are young and healing should be rapid with a total gluten free diet.

Hope that helps.

[nora-n]

was it the tissue transglutaminase 2 Iga (Ttg IgA) test that was done?

Small children do not make much IgA, so the low numbers might be false low....

Anyway, six weeks more on gluten does not matter so much in the long run.

I hope they find something, otherwise the children would have to be back on more gluten and repeat the tests....also, I keep reading that the less symptomatic siblings showed the most damage, what about the other two? you might be surprised.

nora

[beachbel]

Beachbel,

The IgA test is specific for Celiac. Anything in the positive range is considered positive. That, in itself, is a diagnosis.

There is no need for a biopsy to CONFIRM the diagnosis as it's rare for false positives in the Serologic Panel. A biopsy can, determine the level of damage. Further testing through and endoscopy/biopsy would be a personal choice. No one can tell you what's right for you.

Your children are young and healing should be rapid with a total gluten free diet.

Hope that helps.

Thanks Lisa. I didn't realize the blood test is enough to be a positive diagnosis. I will talk to the dr about it. My son is getting a lot of tummy aches so I hate to have him on gluten longer than neccesary.

Beachbel

[nora-n]

Yes but a lot of doctors look for a certain stage in the march scale to officially diagnose celiac.

The ttg2-test is definitely diagnostic for celiac with the marsh 3-something or another scale if it is high, but it often corresponds with a lesser marsh scale damage if the nubers are just close to the lower end, according to a neixh paper from Canada.

That is the reason the doctor wants to have the kid on gluten for a bit longer, to get a high marsh scale (meaning to get a definite celiac diagnosis according to his way of thinking)

Also, with kids, they start questioning the wole celiac thing after some years and if you do not have a definite diagnosis, they may just go back on gluten because of that.

But as I mentioned, small children do not make so much IgA, so his low numbers maight not mean the marsh scale damage is less....

and I live in europe, where they do biopsies on everyone, and also to check if there are not other things going on, and to have something to compare with if another biopsy is neccessary in a year or two (happens sometimes)

nora

[dilettantesteph]

My son's pediatrician told me about a big GI meeting last summer. They decided that the only way to diagnose celiac is through biopsy. Our support group's recent speaker, a GI celiac specialist, recently said the same thing. Apparently there are other reasons for elevated blood levels (gluten intolerance). It may be important in the future to have a clear diagnosis. For example, my son is required to take classes in which they bake with flour. He doesn't have a biopsy. His doctor is willing to say that he has celiac and get him out of it. If we didn't have this doctor, we might be in trouble. You may need the school to take action to keep your child safe from crumbs. They eat everywhere in that building and it is full of gluten. My son is forever coming home glutened. Fortunately his reaction isn't that severe anymore, or I'd have to home school him.

They want to wait to do the test and have your child eat more gluten first to make sure that the test will be positive. It would be better to only have to do the endoscopy once.

It is so stressful to have a sick child. Especially hard when you are going through your own diagnosis and all the mood swings that withdrawal from gluten can cause. I can really relate. I wish you the best.

If in the end they say he is negative, you can always put him on the gluten free diet anyway and see if that helps his symptoms, and call it gluten intolerance rather than celiac.