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Getting Decent Health Care

sarah513

By sarah513
in Coping with Celiac Disease

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sarah513 Rookie
sarah513
Posted

I’ve got a twofold problem, and any advice would be greatly appreciated.

First: I was just diagnosed by an IgA test at my doctor’s office. (I’m going in for a biopsy next week.) I’ve been going to this doctor’s office, a regular family practice, for a few months and I’ve seen a different doctor every time—I think they have a lot of new doctors on rotation, etc. Every time I go, I explain that I’ve recently been diagnosed with celiac disease, and the doctor and med student or whoever disappears for half an hour and then comes back and hands me three printed-out pages from the Celiac Sprue Association, which they’ve obviously just run out and Googled. I keep having to educate them on the topic. I really need to find a doctor who knows what she/he is talking about and who can answer my questions! I live in New York City… anybody have recommendations?

Second: My doctor’s office referred me to a nutritionist, at my request. I called to make an appointment and the nutrionist’s office told me to check with my insurance company first. I did (I have Blue Shield of California—my employer is based in CA although I am in NY) and they told me they only cover nutritionist’s visits for diabetics! The woman I spoke to had never even heard of celiac disease! Never mind that, like diabetes, celiac disease requires a lifelong medical diet in order to maintain health, and never mind that ABSOLUTELY EVERY resource on the topic says that the first thing any newly diagnosed celiac should do is to run, not walk, to a certified nutritionist. I’m sorry I don’t have a more popular disease, but celiacs need health care too!! Argh. As you can tell, I’m just about ready to start breaking some skulls (figuratively, of course!)—it’s so frustrating to deal with a health care system that exists solely to prevent sick people from getting health care! But all of you know all this (at least, those of you in the US certainly do). Has anyone fought the insurance company to get care? Have you won? Does it help if your doctor calls? Has anyone taken them to court? I have no money, but I am willing to fight.

Thanks in advance for any help—I keep posting questions and you all have been wonderful!

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Guest nini
Guest nini
Posted

Sarah, first of all, are you already on the gluten free diet? If so, why are they doing a biopsy? If not, are they trying to rule out celiac with the biopsy or just confirm? Either way a positive blood test is enough, if you are already having issues with your insurance company, why go through an unnecessary and expensive biopsy if you already know what is wrong?

You need to question your Dr.s on everything, especially if they don't seem the first bit knowledgeable about celiac.

Also, unless you luck out and find a qualified nutritionist out there, most nutritionists (Based on mine and others experience) don't know the first thing about the gluten free diet, OR their info is outdated.

Last. This site is full of some of the most knowledgeable people when it comes to the gluten free diet, and IT"S FREE!!!

Violet Rookie
Violet
Posted

I am so lucky to have a wonderful doctor. He is an MD, but leans heavily on the holistic side of things. I get acupuncture from him and I also get his time. He really listens, and thinks, and give me good advice. If any of you are in Western Ma (or willing to travel) he is a real blessing!

lovegrov Collaborator
lovegrov
Posted

A very large percentage of nutritionists are pretty much useless when it comes to celiac. You'll learn a lot more on the Internet.

But I can't understand why an insurance company wouldn't pay for a diebetic to see one -- they'd rather pay the hospital bills when the person doesn't understand how to follow the diet?

richard

Merika Contributor
Merika
Posted

Hi Sarah,

I have Blue Cross of CA and they will pay a portion of chiropractic and acupuncture. Maybe Blue Shield does too? I say this because there are nutritionists and natural medicine practitioners who will get a chiropractic license basically for insurance billing purposes. If you find one who does "both" you may get insurance to pay.

That said, I doubt a nutrionist would be worth your time, and may even give you bad information. Go online to reputable sites. Also, find your local celiac support group/organization and TALK on the phone or in person with one of them. This is the fastest and most reliable way to get info on everything, and you can get all your questions answered, and they are happy to share this info with you (for free).

Hth,

Merika

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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

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    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
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