To “celebrate” the anniversary of my son’s diagnosis with celiac, I called his doctor to request an appointment. I expected this whole process to be very uneventful and, to be blunt, really boring. That was an incorrect assumption. For starters, his GI Doctor, who I thought was fantastic, no longer takes Blue Cross. So, I found a new one, and made an appointment for a few months out. Well, the appointment rolled around and we went to check out the new doctor. From the moment he walked in the room, I couldn’t stand him. First of all, and this is mean, he had a horrible whispery voice. It just grated on my nerves. But then, he pulled out my son’s chart, and in front of my child states, “Well, you know, based on these numbers, I’m not entirely certain he has celiac. I would like to take a look at the biopsy. It’s a very weak positive”. Now, correct me if I am wrong here. A “weak positive” on a pregnancy test certainly doesn’t mean that you might not be pregnant. And actually, because I am a brat, I had to make a point of the fact that it wasn’t actually a weak positive, it was an actual positive based on the chart I had seen previously. Which just might have made him a little mad at me.
The doctor then left the room for a minute. My son leaned over and whispered, “Did you hear what he said Mommy, I might not have celiac.” And being a wonderful parent, as I always am, I calmly responded, “Well, he’s wrong. And I don’t like him.” It just really made me mad, because my son had gotten his hopes up. The doctor came back into the room and proceeded to tell me how he would request a biopsy report or something of the like and he would also like to run a test to check for vitamin deficiencies. And then made a snooty comment about how my other doctor, who I liked and didn’t want to beat over the head with a clipboard, should have been more thorough.
The next part of the conversation was where it got really interesting. The doctor asked what I would do if my son didn’t really have celiac. So I stated, first off, that he does have celiac. He has a strong family history, along with another autoimmune disorder. When he is on a gluten free diet, he doesn’t sleep walk, have black circles under his eyes, he grows appropriately and I have to use the sanitary cycle on his underwear a whole lot less. But then I asked the doctor, “Even if you think he doesn’t have celiac now, he had a positive biospy and a positive blood test. If he continues to eat gluten, won’t he wind up with a much more severe case as an adult. What is the point of letting him eat gluten for a few more years, only to wind up in a situation where he can’t cheat occasionally without having much worse repercussions?”. To which he replied, “Well, you can’t guarantee that.” And then we left the office.
I called my husband while driving home (that’s legal in Texas) and relayed the whole story to him in a very kind fashion, casting the doctor in the the most positive light possible. I might have thrown in something about how I can’t stand him and won’t go back there. And my husband responded the same as I had, “Don’t worry about it, he’s wrong”. After all of this drama, I really won’t go back there, because it turns out that the doctor wasn’t able to even get the slides of the biopsy, and never even called me with the results of the vitamin deficiency test. And every other doctor that my son sees was shocked that the GI doctor had even called a positive diagnosis off of a biopsy into question. We will be going back to our old GI doctor, even if we have to pay out of pocket.
So, I’m sorry if this story went on and on, but imagine if it was your doctor and your child. What if a doctor told you that after a year of eating gluten free, that your child might not have celiac....at least not yet. Would you avoid it entirely in an effort to keep what might be a very mild case from turning into a severe one? Or would you let him eat gluten for a few years, all the while wondering if and when it was going to affect him, and worry that each cupcake or slice of pizza was eating holes in his intestines. I’m sure you won’t be surprised to find out that we chose option A. What would you do?
G-Free Mommy Hilary