Why Small Bowel Biopsy?

[vanessa]

My son Brandon who is five started having some strange symptoms right before Thanksgiving. When he was examined by the doctor he said I think it might be something bacterial, so here is an antibiotic. It did seem to help a little bit, but right around Christmas time the symptoms came back. After a CT scan, the primary doctor wasn't sure what was going on. I pushed for a referal to a GI doc. The GI doc looked at me as if I were crazy when I brought my son in....he said well I guess I can order a test for celiac disease, but I really don't think anything is wrong. A week later I received a phone call from the GI doc who said that his IGG and IGA tests were positive. The IGG was 22.2 when anything above 10 is strong positive. The IGA was >100, anything over 10 being a strong positive. SO....with that said, why are they wanting him to have a small bowel biopsy? Is there any other disorder or disease that would cause these tests to be "positive"? Also his fecal fat content was high....If someone could please let me know the purpose of the small bowel biopsy I would appreciate it!

He is going to see a doctor at Children's Hospital in Denver, as the GI doc he has seen really doesn't see many children. I plan on asking these questions when we go there...but I have to admit I am scared to have my child go through this! Thanks ...Vanessa

[Guest Viola]

Hi, I know this whole thing must be frightening, especially with a child. Apparently the biopsy is still the only positive proof of Celiac disease. You could do the gluten free diet without the biopsy and basically assume Celiac Disease. However you need a postiive diagnoses for tax purposes and also to consider whether or not other family members should be tested, whether ill or not. Some Celiacs do not show any symptoms except for an iron defficiency, or another vitamin deficiency. Someday soon, we are hoping for a positive, non evasive test. We will all be better off for it!

I'm not sure if this is very helpful or not, but hang in there and let us know what happens

[plantime]

The biopsy will give an idea of how much damage has been done so far, and what you will need to expect as far as length of time to heal. If you are satisfied with the blood results, then you do not >need< the biopsy, but your doc apparently wants the biopsies to give a definite diagnosis.

[plantime]

Also, with a child, the doc's biopsy results will be required by schools and day cares so they can accomodate his dietary needs. It is a red-tape technicality, but they will have to have it.

[tarnalberry]

Since technically, the way celiac is currently defined by the medical community, it has to be determined if much damage has been done to the intestines, they have to do a biopsy. Some doctors don't adhere to this technicality, and use the blood tests to suffice as markers for damage, others require the biopsy.

As has been noted, it's still your choice - you already know she needs to be gluten-free, but a lack of biopsy results may weaken her diagnosis in the eyes of some whom you may need to believe you.

[vanessa]

Thank you so very much for your responses. It sounds like having the small bowel biopsy is just the evidence doctors want to give a definite diagnosis. Does anyone know of any other disorders/diseases that can cause the elevated IGG and IGA test results? Thanks..Vanessa

[MichelleC]

And, Vanessa, just to try to ease your fears...my 7 and 9 year old daughter and son had scopes back in August. They both did great. No problems at all. I'm glad you're going to a Children's Hospital. They are good at taking care of both kids AND parents! :-)

BTW, Celiac was confirmed in both. I have it, too.

Michelle

[ashlee's mom]

I just wanted to add that my daughter had it done when she was 4-1/2 and I think she did better with it then she did with the initial blood test! One reason I am glad we went ahead and did it was so that she has proof that indeed she has this disease. I have heard that the symptoms can fade as kids hit the teen years when they are questioning everything you tell them anyway. I am hoping that if this happens for us, she at least won't have to wonder if she really has celiac disease or not. My husband also was all for the biopsy so that we would know for sure what was wrong. I used the time until the biopsy to let her eat all the pop tarts and stuff she wanted since I knew it would be the last time in her life! Then when we came home from the biopsy, she went gluten free.

Good luck!

Michelle

[Boojca]

Hi Vanessa,

My son was diagnosed in June at age 2 1/2 and the biopsy is to "conclude" that it is indeed Celiac. They will look at the damage (taking multiple samples from the small intestine bc the damage isn't always "all over") and make sure it's consistent with celiac disease. The endoscopy is no big deal, in fact it was much easier than the blood draw for my son. They knocked him out and did it...the procedure took 20 minutes...and when he woke up he wanted McDonald's and we had it and he was his crazy self all day (unfortunately...I had planned on him sleeping all day so I could too!) You will need the "conclusive" diagnosis for school...this falls into the ADA act and for 504 compliance the schools will demand this. As for taxes, I guess you might need it for that as well but I'm not sure why. For you to deduct anything in taxes your out of pocket expenses must be over 7.5% of your income, and that's pretty tough to hit! It's really the school thing that's the most important.

And for Michelle, yes, that is true. Some Celiacs have a "honeymoon period" where it seems to go away. Unfortunately it's just in a latent stage and the damage is still being done in there and it comes back!! Ugh.

Bridget