Doctors

[Guest kmmolina]

I'm so discouraged. I live in Central California (Fresno). I have a great doctor who knows nothing about Celiac but it willing to work with me. When I first saw him a year ago I brought him information regarding blood work, symptoms, etc. I went throug all the "stuff" and was diagnosed. He is great...no complaints. However, I decided I would like to see a doctor on a consult basis who really understands this disease and someone I can ask questions of...like "why is my poop light yellow", etc. After a little research and talking with my doctor, Dr. Lozano, he agreed to refer me for consultation with the Standford Celiac Clinic where they will take my insurance (Blue Shield HMO).

I just got a response from them denying the request. They said I could see a Gastro guy at the county hospital. When I saw the Gastro guy for my endo...after I disclosed to him that my sister had died from Celiac....his comment was "Nobody dies from Celiac. Then to top of my day (this was yesterday) I talked with someone from United Airlines regarding gluten free meals, which they advertise on their website. I was told that it wasn't available to me because I was using frequent flyer miles and I wasn't traveling first class. These kinds of comments make me shut down...I'm so tried of of explaining!!

OK...thank you for listen...enough venting. Does anyone have any experience is dealing with HMO insurance that isn't welling to let you see a doctor that is a Celiac Specialist?

Thanks in advance...Kathleen

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[LKelly8]

It's an HMO - everything gets turned down the first time. Persevere and see if Doc Lozano will write a letter to the insur agent, explaining why a "special specialist" is needed in the case of celiac disease. If he's already written one, ask him to write another. Ask your regular GI to write one as well. I bet this celiac clinic has to deal with insur nonsense all the time - call the office at a non-busy time and speak to the payments/insurance person, ask them if they know of anything you can do to speed up the process.

Good luck and keep at them, don't give up!

If worse comes to worse, you could contact your local newspaper or news channel for assistance.

As for the idiot who doesn't think celiac is deadly . . .Open Original Shared Link . . .and this is from 2001.

[plantime]

When I saw the Gastro guy for my endo...after I disclosed to him that my sister had died from Celiac....his comment was "Nobody dies from Celiac.

After I learned that I have celiac disease, I researched it a lot. I learned that my mom died of untreated celiac disease (she refused to give up her bread). I told my sister (a nurse) this, and she didn't believe me. Since learning that her daughter is allergic to wheat, she started researching celiac disease for herself. A couple of days ago on the phone, she told me that she realized I was right, mom died from untreated celiac disease.

I know you want the help of a doctor that already knows about celiac disease, but why bother? Once you are diagnosed, the treatment is up to you. You say your regular doc is willing to help you, let him. It will be good for him, you, and all of his patients for him to have to learn about celiac disease.

[Rusla]

What an absolute dumb-arse. This is where I say we should all see veterinarians. I would wish him to get Celiac disease and then I hope he gets cancer of the colon so that he will finally realize that is one of the ways to die from Celiac disease. It was like one doctor I had who said there was no such thing as hypoglycemia and when he was pushed into doing the test he learned there was such a thing. It would be nice if we could have their licenses revoked because they are morons.

[mouse]

I think she wants someone who KNOWS the disease and any illnesses that sometimes come with it. I love my GP, but he does not have enough time to research this disease as he also has to keep up with all the other changes in medicine. I am certainly not his only patient. So, if I have a problem, I lightly research it, we discuss it and deicde what should be researched further or what tests he wants to order. Sometimes he sends me to another doctor. But, he makes sure it is one who listens to a patient about Celiac. So, I understand why she would want one that she could go to if something crops up. After all her Mom probably died from undiagnosed Celiac.

[Rusla]

I also research, I am a born researcher. When I figured I had hypothyroidism I researched that and things it was related to, I literally spent 3 full days in the medical library and photo copied the pages so that I would have things to back me up. I would strongly suggest doing the same and sending copies to your insurance companies, be sure to highlight the dying from parts.

[Guest kmmolina]

Thanks for your responses. It is great to have a place to go and put your stuff out there, and caring knowing people will answer. Mouse, you are right...I just want to physically talk with a person who comes from a place of knowledge and understanding about Celiac and what all goes with it. Heck, I'l just like to talk to another person ...in person that knows what Celiac is. I wish my sister was still around...we could have had lots of conversation about feeling tired, stomach aches, and poop. Thanks for you support...kmm