Need To Decide To Biopsy Or Not.....help Please!

[Wendyp]

I was confirmed via biopsy about a month ago and promptly took the kids for bloodtesting. My oldest (age 11)came back positive on all three areas (not in front of me now but I know the ttg was 29 (1-5 being normal), positive on endomysial, and positive iga (?)). He reall doesn't have any symptoms. He is on the very thin side, but not sickly looking. He's had some moodiness and irratiability over the past six months, off and on.

The pediatric gi doc. confirmed that these are all signs and says he will have to go on a gluten-free diet, whether or not the biopsy is positive. She said she expects to find damage.

Here's my question: We are still paying off bills from medical testing I had last year and have a high deductable, which would mean we will end up pay over $1,500 for my sons biopsy. While I know that is not a super high amount in the grand scheme of his lifetime, there are other areas that need attention now (speech therapy for another child, educational testing for the celiac child,...you know, the list goes on and on). Of course there is also the small risks associated with the procedure, although I'm really not concerned that anything will go wrong.

The reason the doc gave for the biopsy is so that it will proove to my son he has it, and so that the biopsy (gold standard) will be part of his permanent record.

What to do??????? Any words of wisdom???

[AmandaD]

I have three kids myself - and biopsy proven celiac. If it were my children - even though it's an expensive deductible, etc...I would have the biopsy done.

So many people question celiac - especially when it's in children. They can be kind of crappy to parents until they understand that the child has the full, gold standard diagnosis and then you can actually target your treatment plan accordingly; there will never be a question in your mind either that your child does or doesn't have it.

I think the biopsy also helps look for other things - like possible gastritis or inflammation and it's sort of a sense of peace knowing somebody's been in there and given it a good look around.

Just my op...AMandaD

  Wendyp said:

I was confirmed via biopsy about a month ago and promptly took the kids for bloodtesting. My oldest (age 11)came back positive on all three areas (not in front of me now but I know the ttg was 29 (1-5 being normal), positive on endomysial, and positive iga (?)). He reall doesn't have any symptoms. He is on the very thin side, but not sickly looking. He's had some moodiness and irratiability over the past six months, off and on.

The pediatric gi doc. confirmed that these are all signs and says he will have to go on a gluten-free diet, whether or not the biopsy is positive. She said she expects to find damage.

Here's my question: We are still paying off bills from medical testing I had last year and have a high deductable, which would mean we will end up pay over $1,500 for my sons biopsy. While I know that is not a super high amount in the grand scheme of his lifetime, there are other areas that need attention now (speech therapy for another child, educational testing for the celiac child,...you know, the list goes on and on). Of course there is also the small risks associated with the procedure, although I'm really not concerned that anything will go wrong.

The reason the doc gave for the biopsy is so that it will proove to my son he has it, and so that the biopsy (gold standard) will be part of his permanent record.

What to do??????? Any words of wisdom???

[CMWeaver]

I have two daughters who were approaching age 4 when we were introduced to the entire gluten-free terminology. One of them WAS very sick. Her bloodwork was clearly positive and she did have the biopsy. Simply because the bloodwork was SO high they intended to find a lymphoma in her instestines. The other, who was not showing symptoms had the blood testing done. She too was positive. We chose not to have the biopsy done with her. We chose not to for a few reasons 1) I myself was having surgery for an unrelated matter and 2) going gluten-free was something we were going to do anyway since both were positive, I didn't feel I needed to have the biopsy paperwork on both of them.

If you feel that you will be eligible for the 7.5% medical tax deduction on medical expenses (visits, surgeries, price of gluten-free food compared to regular) the biopsy is confirmation that the diet and special food is a medical necessity and not something you "think" your child would need. However, at the age of 5 we have already gotten a hard time from my husband's insurance company. They bawked a bit at covering the one with the biopsy since there was a "pre-existing" condition. We had to have her GI write a letter stating that on the gluten-free diet, the condition would improve and pose no more than normal health related conditions as long as it was adhered to.

So, I suppose this is really what YOU prefer. No real right or wrong answer in my opinion. Whatever is best for your family.

[Guest nini]

I have a five year old with celiac and I have celiac... my numbers were extremely elevated but I did not have the biopsy AND STILL had a hard time getting and keeping health insurance because of the Celiac dx... My daughter did not have the biopsy either, but was dx'ed based on positive dietary response and genetic predisposition... I will not have the biopsy, and I will not put my daughter through it. We've improved so much on the gluten free diet that hopefully at this point any damage is all healed anyway.

In my opinion the biopsy is not necessary at all if the blood work was positive and regardless of results of the biopsy, you would have to put him on the diet anyway... don't do it. That's my opinion.

As far as this "gold standard" dx is concerned, the current thinking on this is that it is no longer the gold standard as the biopsy only shows the most advanced stages of Celiac... the bloodwork and dietary response would be more that enough to dx Celiac, and a Dr. that is still insisting on a biopsy, is operating on outdated information. (it's ok, most of them still are).

So, my input would be you do not need to put him through this. You KNOW he has is, just as I KNOW my daughter has it.

BTW she's been gluten free 2 1/2 years now and is doing amazingly well...

[jadobson]

Don't bx. We too had similar issues. I chose not to bx as we don't respond to anesthia very well. Within a few months he had gained some weight and I could easily see the difference. Our doctors agreed to label him with it without the dx based on the increase weight and dispostion. Go with your gut feeling. Mine was no bx was needed when all it would do was give us a label that didn't really matter to us, we were going gluten free either way.

Julie

[TCA]

We have excellent insurace and my son (just turned 3) has had 2 biopsies over the past 18 mos. Both were negative, but he had 2 very high antibodies, tooth enamel defects, failure to thrive, chronnic diarrhea, developmental delays, gas, etc. Even though the biopsies were negative, we decided to put him on a gluten-free diet as a trial and he is a different child. No diarrhea, he told me his tummy didn't hurt and he had never even told me it did (he probably didn't know any better), he has increased a clothing size and gained a pound for the first time in 9 mos. All this and we're in the 4th week of the diet. If I knew then what I do now, I would not have bothered with the biopsies. The diet has been the proof for us. If you try the diet unsuccessfully, you might want to do it then, but what's the use if you're going to do the diet anyway?

[Electra375]

You want a firm medical dx for a 504 for school.

You want a firm medical dx for special services if you qualify otherwise

You want a firm medical dx to help with diet adherance in the teen years at 11 that is close. Teens come back notoriously negative on biopsy for some reason.

Dr. Fasano states that a non-compliant celiac disease through the teen years will develope type I diabetes by age 30. And as most of us know Type I diabetes is non-reversible and a life long necessity for insulin.

(We saw dr fasano last week and asked if there was a medical necessity for a biopsy -- his answer was getting teens to comply)