Thursday, January 17, 2008

Pediatric GI Specialist Update

And this time, there is one!

We saw Dr. Elizondo this morning regarding Faith and Grace's small statures. I've heard great things about Dr. E -- that he is good with kids, very thorough and caring. He did not disappoint! He was excellent with my girls and they never cried a moment when they were with him. Woo hoo!

First, Dr. E took a long family history of both girls, asking about me, Todd and both of our sets of parents. Then he took a listen and look at each girl, feeling their tummies, checking out the condition of their skin (which can be linked to GI problems. Who knew?)and generally just poking them around. And remember, all of this with no crying from either baby. Amazing!

As we sat and discussed the girls' growth and progress, we talked about how they are very proportionate -- they are small in weight, but they're also short (and being an offspring of Todd and me, this should come as no surprise). He said it's good news that they are so proportionate, but that all of this may be an indicator of something else: Celiac Disease.

Celiac Disease is an autoimmune disease which prohibits the body from properly digesting the protein gluten. Instead, the gluten causes damage to the small intestine and malabsorption of key nutrients, resulting in decreased weight gain, especially in children.

Celiac Disease is a very common disease, but goes largely undiagnosed. A family with a history of autoimmune diseases is more likely to have children with autoimmune diseases.

Did I mention that Todd was diagnosed with Grave's Disease last week? It's an autoimmune disease. My mom also had an autoimmune disease. Ta da!

The only way to accurately diagnose Celiac Disease in children under five is to do an endoscopy. So, on February 4, we will arrive at our local hospital at 6:00 a.m. and, while the girls are under anesthesia, Dr. E will send a camera down their throats to look at their throats, esophagi (by the way, that is that the correct plural form of the word) and small intestines. He'll look for signs (whatever that means) of the disease and we'll have an initial diagnosis that day. It will be a week to ten days before the final and conclusive diagnosis will be ready.

If it turns out that they are positive for Celiac, then we'll have to do some major overhauling of our diets. Gluten is in everything and most commonly found in breads, grains, cereals, etc. It comes from wheat, barley and rye, so imagine having to cut out anything that has any of those components in it. We'll have to find a dietician to help us out -- it's not something we could do on our own. It's a pretty massive undertaking.

So how am I feeling? Okay, I guess. There is a chance this may not be Celiac Disease, and that keeps me hopeful. If it is Celiac, then we'll adjust. I'm glad to know that my babies are not at risk of having some sort of life-threatening illness or condition, but it does break my heart to know that no matter where they go or what they do, they're going to have to always be cognizent of what they are eating. It's one thing to do it when you're at home, but can you imagine being seven-years-old and at a slumber party where all of the other kids are eating brownies and chips while you get to munch on carrots. Hardly seems fair.

For now we'll just go on with life as we've been doing it and we'll survive, no matter the diagnosis. Like I said, it looks like there's nothing life threatening going on, so everything else can be handled with a little education, support and discipline.

One down, one to go. Tomorrow we see the Pulmonologist. Let's hope for good results.

5 comments:

Alicia said...

I've been thinking about you guys this morning. So glad you liked the doctor!!
Not trying to be a budinski, but I'm wondering if the girls have had the TTG blood test? (I think that's what it was called) . . . as I recall, it is a blood test that checks for an immune indicator that may be a sign of celiac? It's been over a year since we went through this, but as I recall, if that blood test is negative, then the endoscopy can possibly be avoided. If the test is positive, then the endoscopy is a definite. Again, not trying to stick my nose in . . . just hoping that maybe there's a way you might be able to avoid the endoscopy.

Bridget said...

So, my sister Kelly just got diagnosed with Celiac. She has made some good contacts regarding what you can/cannot eat. I hope the girls don't have it, but if they do, I can pass on some good recipies...
Love, B

Anonymous said...

I have been waiting on the edge of my seat for this post (much like the upcomong episode of a cheesy sitcom) I am sure all will be well. Mdison went through the same procedure. If you want email me or call and I can tell you a few things on what we went through post anesthesia. I seem to have lost your email :(
Lita

Meg said...

Travis had an endoscopy at around 19 months, so if I can be of any help with what do expect, please don't hesitate to holler.
hugs,
m

keblake said...

I work with a guy whose daughter has Celiac. I'm sure you'll have plenty of resources, but if you want me to reach out for food ideas ever, just let me know! Thanks for the updates-- the girls are in my prayers. blake