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):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

How Do We Get The Word Out To The Doctors?


floridanative

Recommended Posts

Rusla Enthusiast

Even though for many the blood test works but then, there are others where the blood test shows negative and you have to go through the other tests. I fear giving the insurance companies the idea that all it takes is a blood test, would cause them to freak out when biopsies rear their heads.

Not only that but many may run into the same thing I did with my former doctor. He not only did not know what the blood test was called but the fact that you need to be on gluten for 3-6 months prior to the test.

I think it would be best to say, "there are two to three tests that can be done to determine this disease and both are fairly inexpensive in regards to the alternatives” Then, alluding to the out come if it is not diagnosed in time and what the costs monetary and health wise could result from ignoring this disease.

In view of the pharmaceutical companies being upset over losing money, so would the government. The government gets a huge kickback from pharmaceutical companies. That is why the government has been trying to block natural remedies.


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



Celiac.com Sponsor (A8-M):



  • Replies 68
  • Created
  • Last Reply
debmidge Rising Star

I think that another thing that complicates this issue, and I don't know how one would get around this, is that unless the doctor has reason to suspect celiac, he cannot order a blood test to detect it (meaning insurance won't pay for a blood test when there's no reason to suspect a certain disease). This is why years ago a mammogram wasn't covered unless there was a known breast disease, thankfully, that has been changed.

So again, the blood testing request stems from the physician.

Canadian Karen Community Regular
I think that another thing that complicates this issue, and I don't know how one would get around this, is that unless the doctor has reason to suspect celiac, he cannot order a blood test to detect it (meaning insurance won't pay for a blood test when there's no reason to suspect a certain disease). This is why years ago a mammogram wasn't covered unless there was a known breast disease, thankfully, that has been changed.

So again, the blood testing request stems from the physician.

I know, thank God that has changed, and mammograms are now recognized as a valid screening method to catch it early. That's why I am hoping that eventually, with enough pressure on the insurance industry, THEY will be the ones demanding doctors screen for celiac disease in the same manner.

I am the first one the admit I have absolutely no idea how the medical system works in the States, all this talk about HMO's and no coverage etc. is totally foreign to me. But even up here in Canada, with a Universal Health Care system that is protected and is the right of every Canadian, the insurance industry still has alot of clout up here. If we can make them realize that some kind of screening system would be finanically beneficial to them, we could really catch so many cases that are going undiagnosed way longer than they should.

I think it is too much to expect them to have a screening system in place where EVERYONE is screened (like in Italy, I believe), but if someone goes to their doctor complaining of symptoms consistent with celiac complications, then those are the ones who should have the test run.

I got the impression that in the States, the insurance companies basically have "their" doctors, meaning doctors that work for them. If that is the case, then if the insurance industry devises a list of symptoms for possible celiac and then direct their doctors accordingly, that is to say, "If any of your patients present with these symptoms, please run a celiac panel on them to rule out celiac disease". Once they realize that the benefits of this screening could save them a staggering amount of money, I think we would be that much further to chipping into the tip of the iceberg.

Hugs!

Karen

Rusla Enthusiast

However, in Alberta the fearsome US health care system is looming on our horizon thanks to our drunken, moronic Prime Rear.

debmidge Rising Star

what's a Prime Rear?

Rachel--24 Collaborator
what's a Prime Rear?

LOL....I wanted to ask the same thing.

debmidge Rising Star

Should I wish I had one? Sure beats having fat one.


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



Celiac.com Sponsor (A8-M):



Rusla Enthusiast

Well they actually call the loser the Premier of the Province, but he is a Prime Rear and he has a fat drunken butt too.

Canadian Karen Community Regular

I bet he's hoping those properity cheques will wipe everyone's memory clean! He can't be any worse than Dalton the Dolt! LOL!

Hugs.

Karen

ianm Apprentice

I just love reading about how messed up Canadian politics are. Liberals in America talk about Canada as if it is some type of Socialist Utopian Paradise. I should have some of the liberals I know read this forum.

Canadian Karen Community Regular
I just love reading about how messed up Canadian politics are. Liberals in America talk about Canada as if it is some type of Socialist Utopian Paradise. I should have some of the liberals I know read this forum.

HAH! Two words: Sponsorship Scandal. It just knocked the Liberal Party off its pedestal......

Karen

jerseyangel Proficient

Ian--I was just thinking the same thing :D

Canadian Karen Community Regular

I know that right now, especially being a two parent, four children family, I sure as heck wished I lived in Alberta right now!!!! LOL!

Here why:

Open Original Shared Link

Rusla, I will go on a shopping spree vicariously through you, okay? :P

Hugs.

Karen

Rusla Enthusiast

You are too late, it floated right out of my hands all $400. You need to spend someone who has a larger families money. However, it seems in all the brilliance of our esteemed Prime Rear that they have sent ones to many across the country who have never lived in Alberta so, you could still get one.

In our utopian paradise I sat with my mother in the emergency ward of the hospital for 12 hours and no one even looked at her. She was brought in by ambulance. They were pulling people off of gurneys and putting them in wheelchairs, pushing them into the waiting room and saying, "tell us when you are sick." People were passing out in line and laying on the floor of waiting room...sick.

Karen, he can be worse. In a rapidly growing city, where I live, he refurbished a hospital for 70 million and sold it for 3 million to a private company and blew up the other one. We have 3 hospitals, none inner city in a city of over a million people. But hey, Mr. Wonderful says we will have 2000 more beds in the year 2010, some good it does now.

Canadian Karen Community Regular

Wow! How inept! Maybe I'll stay here in Ontario after all..... :P;)

And here I was having a wonderful daydream how I would spend $2,400.00!!! That would buy a LOT of gluten-free stuff!!!

Hugs!

Karen

Rusla Enthusiast

If he sends you $2400. you can send me $1000. Admit it Karen you would take a trip and run away from the four kids and husband for awhile.

Rachel--24 Collaborator
Should I wish I had one? Sure beats having fat one.

LMAO!!

I wish I had one...sure beats having nothing at all!!

Kinda hurts to sit down. :lol:

Timber4est Rookie
However, insurance companies would rather no one have any problems or know about this, that way they don't have to put out the bucks, just sit back and rake in the cash.

It is hard to educate doctors when many in their minds think such things as Celiac, hypoglycemia and other medical issues don't exist and are bunk. First one has to get the doctors to listen that, in itself is a chore.

First, I know I am late, I had to do research to learn what foods I could eat as I was getting really tired on fruits and bananas.

Being adopted in the 70's we didn't know my family history and at age 17 I started having siezures and bouts with passing out or browning out. Yes, the initial doctors told my I was a mental case looking to be sick when all I had was passing out or browning out. Until the siezures happened and I was placed in the hospital. While at the time they came to the conclusion that there was no cause for my siezures and that they were an "isolated" case that should never trouble me, they did make me drink that sicky sweet orange beverage and performed the dreaded 6-hour sugar test to see if I was diabetic. My sugar levels spiked the first hour, went through the floor the second hour and I started passing out hours 2.5-4. At that point they realized the passing/browning outs were not in my head as they had told me for years and did more tests. Thats when they discovered that my pancreas was an over active devil that jumped into war when I ate sugar. If it were not for the test results to waggle in the rest of the "thats bunk" doctors faces, I am sure that many of them wouldn't believe me as most of them didn't until I produced the test results.

As a side note, I sent a letter to my insurance company, with the assistance of my GP in tracking what they have paid out in the past 15 years that was directly a result of Celiac Disease. By monday (one week after being diagnosed) he called me to tell me the insurance company was very concerned (he is a physician owned by the insurance company) and wanted to know if he was treating similar patients who might need a simple blood test and scope so that they could get to the bottom of it.

He provided them with may of their insured patients names and encourage them to form a review board to look over his other patients records and encourage the doctor who dx'd me to be made part of that board. So for now, I have one insurance companies ear who are being very pro-active towards their bottom line -- their profits! Between my doctor, the records and every thing else, they have gone back and have assigned a wasted $375,000 price to the savings they could have realized with me if I had been diagnosed with this just 15 years ago. I wonder how much could have been saved if I went back to the time I was 5 and started the tally from that point.

No doubt their board will have some strict guidelines as to who and why people are tested for Celiac, but at least they are looking into it. They have opted for a 12 party board which will include 50% physicians and 50% administrators.

Insurance companies do care, but only when you bend the correct ear, in the case of the high cost of mis diagnosis of Celiac, it was an economic ear and they are eagar to save more of their precious profit margin.

  • 1 month later...
ms-sillyak-screwed Enthusiast

celiac3270 -- comment about

"Pharmeceutical Industry -- even though few of us would actually take a pill for celiac, there are HUGE awareness benefits if one is made and FDA approved. You would get advertisements, and the pharmeceutical industry, which contributes to a lot of medical education, would make sure doctors knew about celiac, so money could be made off of people taking expensive pills every day. This area is really out of our control, though, unless anyone wants to set up a lab and make the pill ."

--------------------

celiac3270 is bright beyond his years. I wish he was a doctor. I would be his patient, he had helped so many of us.

I think he's right. I also think we need to some how get to the Pharmeceutical Industry and perhaps they will listen to the drug reps that pay them a visit and give them free whatever... Maybe we could work on sending letters to the drug industry and jamming their mail boxes. Think of this one for a quick minute -- if you look at illnesses, the nation spend the most $ , not on cancer, diabetis, heart problems, the #1 thing is digestive disorders... It might make sense to focus on bringing to their attention celiac disease?

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - tiffanygosci replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

    2. - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    3. - mamaof7 posted a topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    4. - Dizzyma replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Newly diagnosed mam to coeliac 11 year old

    5. - tiffanygosci posted a topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,956
    • Most Online (within 30 mins)
      7,748

    Srowton
    Newest Member
    Srowton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • tiffanygosci
      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    • trents
      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
    • mamaof7
      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 
    • Dizzyma
      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me.  My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free immediately as she explained that her numbers were so high that celiac disease was fairly evident. That doctor advised to switch to a gluten-free diet immediately which we did but she also got her bloods taken again that day as it made sense to double check considering she was maintaining a normal diet and they came back with a result of 128. The hospital doctor was so confident of celiac disease that she didn’t bother with any further testing. Cristiana, thank you for the information on the coeliac UK site however I am in the Rrpublic of Ireland so I’ll have to try to link in with supports there. I appreciate your replies I guess I’ll figure things as we go I just feel so bad for her, her skin is so sore around her mouth  and it looks bad at an age when looks are becoming important. Also her anxiety is affecting her sleep so I may have to look into some kind of therapy to help as I don’t think I am enough to help. thanks once again, it’s great to be able to reach out xx   
    • tiffanygosci
      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding CC. I have been Googling "celiac support groups" for the last couple days and there is nothing in the Northern Illinois area. I might reach out to my GI and dietician, who are through NW Medicine, to see if there are any groups near me. I cannot join any social media groups because I deleted my FB and IG last year and I have no desire to have them back (although I almost made a FB because I'm desperate to connect with more celiacs). I'm glad I have this forum. I am praying God will lead me to more people to relate to. In my opinion, celiac disease is like the only food- related autoimmune disease and it's so isolating. Thanks for walking alongside of me! I'm glad I know how to help my body but it's still not easy to deal with.
×
×
  • 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.