What Type Of Doctor?

[kelly97]

Hi, What type of doctor do you see for your Celiac's? The GI who diagnosed me at the University said that GI doctors don't typically see people who have Celiac's. I kind of basically took it to mean, once you're diagnosed you're on your own - or try to ask questions of your primary, instead.

Thanks,

Kelly

[sa1937]

I see a GI doctor, Kelly. That said, I have found that this forum has been a godsend for information.

[kittty]

I think it depends on your doctors, how skilled they are, and who you feel comfortable with.

I go to my regular doctor. She referred me to a GI before we knew it was celiac, and he was useless! He referred me on to a cardiologist because he didn't think there was anything he could do for me. I still don't know why he sent me to a cardiologist, and the cardiologist was totally baffled about why I was there too.

Later my doctor called a different GI to ask him for advice on celiac for me, because she isn't too familiar with it. He basically answered all of her questions with "dunno" answers.

If you can find a GI who specializes in celiac, or has significant experience, then go to them. If not, you're better off puzzling it out with a good primary who's willing to do some research.

[nvsmom]

I just had a GP. The type who confirm I have celiac and said don't eat gluten. I had to request all my follow-up tests and such; I don't think he knows much about it.

[mommyof4]

Kelly,

I am almost a year post-diagnosis. I see a G.I. doctor that specializes in Celiac...but I have to travel 4 hours to see him. My local dr. is also very familiar with Celiac, so she has been able to run follow-up tests.

With that said, I would recommend you find a dr that is at least familiar with Celiac Disease or willing to learn...and find one that is a good listener. You can call your local clinic and ask if any of the doctors work with continuing care for Celiac Disease...or ask around if you know any other local Celiacs. Hopefully you won't need a lot of continuing care. I know my G.I.doctor recommends a follow-up visit one year post-diagnosis...I have been in to see him a few times because I had other issues tagging along with Celiac.

This forum is a great resource to answer questions too...but it is good to get in with a good doctor too.

Good luck!

[1desperateladysaved]

I have a Chiropractor that is friends with me. She has a gluten intolerance herself, so she knew about the diet. Before we knew I had Celiac, she gave me supplements that pretty much brought me back from the dead. I feel she is so good for me because she really cares about me. She has really enjoyed watching my blood pressure drop, hearing about some high energy days, and having my orhostatic blood pressure form a healthy curve.

I have used an MD off and on to help diagnose issues which have come up. I was hoping she would say that my genetic test was a bunch of phooey. No, she backed it up ans said it was the new gold standard. AND DON't Eat GLUTEN ever again.

[kelly97]

Thanks everyone for your answers. I haven't made an appt, yet, to see my primary care doctor. Basically, because I think she's an idiot and when I'm done with all of this (my oncology stuff), I'm getting a new doctor. When I told her that I was losing all of this weight - dropping from about 120lbs to now 92lbs, she told me that I just wasn't eating enough and I needed to eat a lot more calories than I already was. When my onclogist had me see the dietician at the Cancer Ctr, she told me that I was already eating more than 40% more than I should have to eat based on my weight, height, activity level, age, etc.

And, like you all brought up, I'm learning that not all doctors are familiar with Celiac's. When I went to my neurologist last week for a follow-up for my MS, & told her about the Celiac's - she said, "So then you can't eat whey?"

Thanks again,

Kelly