Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Join Our eNewsletter:
    Support Our Content
    eNewsletter
    Donate

Getting Decent Health Care

sarah513

By sarah513
in Coping with Celiac Disease

Recommended Posts

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,940
    • Most Online (within 30 mins)
      10,442
    Sensible
    Newest Member
    Sensible
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Russ H
      Fiber-Metabolizing Bacteria Could Boost Gut Health in Celiac Disease

      By Russ H · Posted

      People with coeliac disease have an altered gut biome compared with those who do not, which may be associated with gut inflammation. Although the gut biome recovers on a gluten-free diet, there are still significant differences at 2 years. In a mouse model of coeliac disease, supplementation with the soluble dietary fibre, inulin, increased the number of beneficial microbes and reduced gut inflammation. Inulin is used by some plants as carbohydrate store, it is a complex polymer of fructose in the same way that starch is a complex polymer of glucose. Inulin cannot be digested by humans but serves as food source for some gut bacteria. Inulin is present in many vegetables but the richest sources are (g/100g): chicory root 41.6 Jerusalem artichoke 18.0 dandelion greens 13.5 garlic 12.5 leeks 6.5 onions 4.3 The Scientist: Fiber-Metabolizing Bacteria Could Boost Gut Health in Celiac Disease    
    • suek54
      Shaking/Tremors and Off Balance

      By suek54 · Posted

      Hi Ginger38 Well done you for pushing through the pain barrier of eating gluten, when you know each mouthful is making you poorly.  I went through the same thing not long ago, my biopsy was for dermatitis herpetiformis. Result positive, so 95% certain I have gut coeliacs too. But my bloods were negative, so very pleased I went for the gluten challenge and biopsy.  Hang on in there. Sue
    • Scott Adams
      Has someone experienced discrimination because of their illness?

      By Scott Adams · Posted

      When symptoms like fatigue, brain fog, or low energy change how we interact, others sometimes misinterpret that as disinterest, rudeness, or negativity—especially if they don’t understand the underlying condition. That doesn’t make their behavior okay, though. You don’t deserve to be treated poorly for something outside your control. Often, it reflects a lack of awareness or empathy on their part, not a fault in you. It can help to explain your condition to people you trust, but it’s also completely valid to set boundaries and distance yourself from those who respond with hostility. Your experience—and your reaction to it—makes sense. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      HLA-DQ2 POSITIVE it's nothing

      By Scott Adams · Posted

      Being HLA-DQ2 positive doesn’t diagnose celiac disease by itself, but it does mean he has the genetic potential for it, so it absolutely deserves careful follow-up if symptoms or concerns are present. You’re right that celiac is often downplayed, but it’s a serious autoimmune condition—not an allergy—and it can affect the brain, nervous system, and overall health if untreated. Given everything your son has been through, you’re doing the right thing by advocating and asking questions. I would strongly recommend getting a full copy of his records, and if possible, consulting a gastroenterologist who understands celiac disease well so you can get clear answers and, if needed, proper testing and monitoring.
    • Scott Adams
      Juce Super Fruit & Veggie Vitamin Blend

      By Scott Adams · Posted

      Yes, I don't recommend barley or wheat grass, even though technically speaking if it's made using ONLY the pure grass it is gluten-free, however, I've witnessed them make it at Jamba Juice and the seeds/kernels often get mixed into the grass before they juice it, so in that case would not be safe.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.