Finding a Celiac-Friendly Pediatrician

by | G+ Amy Leger

I am writing this sadness  — we are going to have to find a new pediatrician after 7 years with one who not only has been awesome, she has another quality — she has celiac disease.  I felt like I was heard, understood and content with my daughter’s health care for that time, now I’m feeling uneasy.

Search is on…

First of all, let me say, I am pleased that we will be soon having regular health insurance again.  I am not complaining in any way, especially with the economy and health insurance issues out there right now.  My hubby who was unemployed for 6 and a half months started his new job in August.  His benefits will begin in November, so we have just received the benefits information. We have two choices both with the same HMO.  I’m not bashing HMOs.  I’m just in mourning that we’ll have to leave our pediatrician who’s not in that network. Ugh.

While I’m not looking forward to it, we’ve been through these insurance changes before.  However, in that case we were leaving a doctor with whom I didn’t feel much of a connection.  I learned a little bit that first time —  So I will take that knowledge and use it this time.

Ask Emma’s Doctors for Recommendations: One way I will start searching is to ask both Emma’s gastroenterologist and her pediatrician if they know any celiac-friendly docs within this company.  That is what I did the last time, and Emma’s GI told us about Emma’s current doctor.  That worked out fabulously!  So that will be my first step.  I highly recommend it to others.

Check in with your Support Group: There’s a lot of knowledge with in the 100+ families in our Raising our Celiac Kids group.  I would like to see if any of them have good recommendations (or ideas on who we shouldn’t see) for us as well.

Nancy Lapid’s online Celiac Disease column has another helpful suggestion of checking in professional organizations like the American Gastroenterological Association to find a good doctor.

Criteria for a celiac-friendly pediatrician

In my world a doctor should have several qualities — listed below in no particular order.

1. They take my concerns seriously: When Emma was so sick before her celiac diagnosis in 2000, I had many doctors treat me like I was nuts.  I still have another daughter to consider when it comes to celiac, which is a genetic autoimmune disorder.  I am open to having her tested annually but at the very least, I want her tested– basically when I want her tested. I have only had Grace, my 7-year-old, tested once — at about a year old.  So it’s not like I’d be having her tested all the time.  But if I think she’s exhibiting symptoms, I want the doctor to hear my concerns and order the full celiac blood panel for her.

2. They understand celiac disease: They need to have at the very least a good solid understanding of celiac, the treatment and the severity of the disease when mistreated.  This solid knowledge needs to be more than the base — they need to really believe that its an issue. Because our current doctor has celiac disease, she has a keen interest in it.  She knows what some of the side effects are.  During Emma’s  annual well-check, not only does her doctor request her regular celiac blood work, but she tests for cholesterol, white blood cell counts as well.  I will not have them see a doctor who doesn’t know enough about celiac disease.  Period.

3. Good manner with kids and me: If my kids don’t like this person, it will make doctor’s visits even more difficult.  And if the doctor talks down to me like I’m dumb — I’m outta there…

4. Might need to be a female: Emma’s almost 11, and I think she’d prefer a female doctor like she’s had most of her life.  This might be limiting for me…so we’ll see.

Wish me luck on our new journey.  If you have other suggestions from which you think readers of thesavvyceliac.com would benefit, feel free to comment below!

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