Tuesday, October 27, 2009

To scope or not to scope - That is the question.

Disclaimer - This is simply me "thinking out loud." It also bounces around so stay with me. I am not advocating one position or another - however I am advocating speaking to your doctor and asking questions while deciding the best thing to do for you and/or your child.

When Grace was experiencing her HORRIBLE stomach aches we were willing to do anything to help her feel better. One night while she was terribly sick she said (pitifully) "I HATE this! I wish there was a medicine to make me feel better - even if it was made of turtle guts I would take it because I HATE this."

Fast forward to seeing the gastro doctor. He recommended doing blood tests to check for allergies and Celiac. I wasn't familiar with Celiac - actually I had seen the word but thought it was Celtic Disease - who knew?? The blood test came back positive for Celiac Disease. I was told we needed to schedule an upper and lower scope (AKA endoscopy and colonoscopy) to get a true diagnosis. I asked if it was necessary and I was assured it was - because it was the only way to truly tell if damage from scaring on the intestines had been done.

During this time I spoke to a friend of ours who also had a daughter with Celiac Disease. She had told me Celiac runs in her family so when her daughter started having problems the first thing they did was put her on a gluten free diet. She immediately felt better. When she spoke to her daughter's doctor he said to put her back on gluten for 3 months so they could do a scope to check for scaring. She decided she couldn't put her daughter through this, self diagnosed her with Celiac Disease, kept her gluten free and years later she is perfectly fine.

WE scheduled the scopes. WE wanted to know. When we told Grace she sobbed. SOBBED!! Then we all cried together. We told her this was her "turtle guts" and we needed to know to make her feel better. She was a real trooper. The scopes showed scaring and the official diagnosis was Celiac.

This past weekend Troy and I were listening to a podcast about medical procedures and how we often do things that are medically unnecessary because they are "common" or expected. This got us talking about Grace's scopes. Last November we really wondered if they were "necessary." We had a positive blood test, we could test it with diet and (elephant in the room) it was EXPENSIVE - not to mention terribly invasive - especially for such a young girl. Being freaked out parents we did as we were instructed, frightened and worried all along. We wanted what was best for our daughter and we were not going to let our fears about procedures or finances stand in the way. A year later we are still making about 4 checks out to 4 different offices to pay for all of this. A year later our lovely daughter is THRIVING!

Are we glad - you bet we are. We are so happy Grace is not only well - she is terrific! But the question remains - were the scopes NECESSARY?

I could see it for an adult who has suffered with undiagnosed Celiac for years and you need to see how much damage has been done. My question is how necessary is it for a child who has only had symptoms for a couple of months? What did we gain by the scope? A firm diagnosis of Celiac. That is a good thing. What could we have done without the firm diagnosis? Accepted the blood test as "good enough?" Tried a gluten free diet to see if it worked before going further? These are the questions we wonder about now.

I think my point is I wish we had more information. I wish we had asked better questions. We very well may have done the exact same things - however we would have felt more confident in our decision.


Olivia said...

I think this is a great post.

For me, I had the scope and biopsy done at 21, after years and years of mysterious symptoms. I had a follow-up one a year later, and the doctor said nearly all the damage had been reversed!

The scopes were one of the most unpleasant things I've ever experienced. Awful, really. And I had no sedation! But I think they were worth it.

I've been GF for several years now, and sometimes it is frustrating. Knowing that I have CD, and haven't just self-diagnosed as gluten-sensitive, and knowing that eating GF resulted in such a visible dramatic improvement does help me adhere to the diet 100%, instead of allowing the occasional cheat in.

There are some studies out there that show that people who are biopsy diagnosed have better long-term adherence to the diet.

Thanks for bringing up this discussion!

-Olive :)

Sandrabag said...

Thank you!

You brought up some important points. Honestly - I didn't study up on the pros and cons - I just did it. It isn't just now - a year later - that we are wondering. Your insight is helpful - to me and hopefully others.