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

Anyone Out There With Kaiser Insurance.


JerryK

Recommended Posts

JerryK Community Regular

Just wondering if there is anyone out there, like me, on Kaiser insurance. I'm betting they ignore Celiac symptoms as well as they ignore other things. Any experience out there?


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator

Yup...I've got experience with them...and most of it was bad. It was pretty much a nightmare...not only did they not diagnose with me with anything (over 3 years) but they treated me horribly. Just kept wanting me to see their shrink....then when I did finally see the shrink she told me something was obviously wrong physically and she couldnt understand why they were thinking she could "fix" me. I got no help from anyone....not even the shrink. :huh:

When I learned about Celiac and asked the Dr. to order the test he didnt know how to do it. It took him a few days to find out and even then he didnt get it right. He also told me it didnt matter that I'd already started the diet... that it wouldnt affect the test....which is completely false.

He had never ordered the tests before...for ANYONE...he said I couldnt have Celiac without "d"...nevermind that I'd lost 25 lbs. very rapidly and had a list of symptoms a mile long.

I could go on and on about Kaiser....unfortunately none of its good. The first GI I saw didnt even bother with any type of Gastro tests....instead he sent me for an AIDS test. :huh:

The second GI I saw was actually pretty decent but by then I'd already been gluten-free (on my own

) for over 6 months and there was no way they could do any accurate testing by that point. He did the endoscopy anyway but it came back normal like we knew it would. I had to beg for the appt. because even though I was weighing only 94 lbs. the Dr.'s werent the least bit concerned....just kept telling me to see the psychiatrist. :angry:

I switched insurance in January and found out that not ALL doctors suck!! I couldnt be happier with the Dr.'s I have now. :)

JerryK Community Regular
Yup...I've got experience with them...and most of it was bad. It was pretty much a nightmare...not only did they not diagnose with me with anything (over 3 years) but they treated me horribly. Just kept wanting me to see their shrink....then when I did finally see the shrink she told me something was obviously wrong physically and she couldnt understand why they were thinking she could "fix" me. I got no help from anyone....not even the shrink. :huh:

When I learned about Celiac and asked the Dr. to order the test he didnt know how to do it. It took him a few days to find out and even then he didnt get it right. He also told me it didnt matter that I'd already started the diet... that it wouldnt affect the test....which is completely false.

He had never ordered the tests before...for ANYONE...he said I couldnt have Celiac without "d"...nevermind that I'd lost 25 lbs. very rapidly and had a list of symptoms a mile long.

I could go on and on about Kaiser....unfortunately none of its good. The first GI I saw didnt even bother with any type of Gastro tests....instead he sent me for an AIDS test. :huh:

The second GI I saw was actually pretty decent but by then I'd already been gluten-free (on my own

) for over 6 months and there was no way they could do any accurate testing by that point. He did the endoscopy anyway but it came back normal like we knew it would. I had to beg for the appt. because even though I was weighing only 94 lbs. the Dr.'s werent the least bit concerned....just kept telling me to see the psychiatrist. :angry:

I switched insurance in January and found out that not ALL doctors suck!! I couldnt be happier with the Dr.'s I have now. :)

Thanks for your reply. Do you think I should even bother my Kaiser doctor with this, since I'm

guessing to get about the same response you got?

Would you go directly to Enterolab?

I'm so sure I'm getting a reaction to Gluten that I think even Kaiser might be able to diagnose me now....

Rachel--24 Collaborator
Thanks for your reply. Do you think I should even bother my Kaiser doctor with this, since I'm

guessing to get about the same response you got?

Would you go directly to Enterolab?

I'm so sure I'm getting a reaction to Gluten that I think even Kaiser might be able to diagnose me now....

I think you should get the tests done...make sure they order the Celiac panel...it consists of 5 tests....I'll post it if you like. Make sure you have NOT started the diet. What I've learned is that its best to educate yourself first...that way you'll know if the Dr. you're seeing even has a "clue". I left everything to them in the beginning but once I started researching and found this board I quicvkly realized those Dr.'s had no IDEA what they were talking about half the time.

My Kaiser Dr. told me that Celiac is on their top 10 list of diseases which go undiagnosed. Well I can certainly see why sincee they know next to nothing about it and they arent testing for it!

You wanna make sure they order the right tests so that you can get the most accurate results. I wouldnt bypass the testing completely though...you just might have a hard time convincing them to order the test but definately try to get it done. Enterolab cant diagnose Celiac....it can only tell you wether or not your immune system is reacting to gluten. It can also tell you what genes you carry so you can come to your own conclusions. If I was you....I'd get the bloodtests first since you *may* be able to get an "official" diagnosis which may ease your mind in the future.

debmidge Rising Star

is Kaiser contracted with Quest Diagnostics?

they are a lab for testing

check out their site at questdiagnostics.com

they do celiac panels (code 15980X) and other celiac related testing.....if Quest knows about it all health plans and doctors should know too....

refer Kaiser to this website for reference of what does on in the real world.

kimjoy24 Apprentice
is Kaiser contracted with Quest Diagnostics?

they are a lab for testing

check out their site at questdiagnostics.com

they do celiac panels (code 15980X) and other celiac related testing.....if Quest knows about it all health plans and doctors should know too....

refer Kaiser to this website for reference of what does on in the real world.

As I mentioned in another thread about Kaiser, I work for them paying insurance claims. Kaiser does use Quest for some lab services, but this could differ from region to region. Also, what's covered depends a lot upon the diagnosis code provided and the particular member's benefits.

Even though I work for them, I still went to an outside source (Enterolab) to have my original celiac tests done. It's not necessarily that all Kaiser doctors are incompetent, it's more the structure and red tape they have to deal with that unfortunately can result in poor service to the member.

As I mentioned in the previous thread, I've had lousy service from both Kaiser and non-Kaiser docs. I really hate how almost everything is suggested to be a mental issue, or something that some pill can take care of.

debmidge Rising Star

Kimjoy: So are you saying that Kaiser's plan may not cover all the tests which Quest can run, even if Quest uses the correct code?

Note to covered employees:

If this is true, Kaiser members, you must lobby your employer to expand your insurance benefits with Kaiser to cover all Quest testing (and find out "what else" you might be missing) or change you coverage to another insurer which provides better coverage on renewal. A blood test for celiac panel should not be considered experimental medicine or only for the wealthy.


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



Celiac.com Sponsor (A8-M):



kimjoy24 Apprentice
Kimjoy: So are you saying that Kaiser's plan may not cover all the tests which Quest can run, even if Quest uses the correct code?

Note to covered employees:

If this is true, Kaiser members, you must lobby your employer to expand your insurance benefits with Kaiser to cover all Quest testing (and find out "what else" you might be missing) or change you coverage to another insurer which provides better coverage on renewal. A blood test for celiac panel should not be considered experimental medicine or only for the wealthy.

I honestly don't know, as I have never used my own Kaiser insurance for Celiac-related tests. I just wanted to caution any Kaiser members out there that once they get over the initial hurdle of actually convincing their dr. that they need the test performed, make sure to check with member services that it will be covered. Members can also refer to their EOC (evidence of coverage), a booklet that goes into detail about what is and what is not covered in their particular plan.

jnclelland Contributor

When I asked for tests from Kaiser (for me, and later for my son), they absolutely refused to run the full panel and would only do the TTG test. I tried to argue, and they insisted that the TTG was the only one that's evidence-based. (Which I interpreted to mean that they were only interested in diagnosing biopsy-provable celiac disease, and not any other form of gluten intolerance.)

Upshot: I'm gluten-free with tremendous improvement but no diagnosis. As for my son, I only had a vague notion that his anxiety might be gluten-related, and when that showed no improvement after a week off gluten, I decided that there was no point continuing to subject him to the gluten-free diet.

JerryK Community Regular

That is the way of Kaiser. They are only interested in making money. Anything that's deemed "not medically justified" they will not do....end of story. And I don't think their doctors are the best either, which is why they work for Kaiser..personal opinion..hope there are no Kaiser doctors out there :unsure:

debmidge Rising Star

Well, employees with Kaiser, keep in mind that if you have a doctor who can substiantate a medical necessary need for one of the extra panels you can appeal Kaiser's decision - every state has that in insurance law. You may have to get the test with your own money and then look to Kaiser for reimbursement after the appeal and they will only pay the "contracted" price.

This next is a step that only those with nothing to lose might want to do: contact your state's Dept. of Insurance and make a formal complaint that Kaiser is setting gluten intolerant people up to not be diagnosed due to their unfair discrimination and application of their rules. The state will then investiagate them, but you must, must keep diligent records of your doctor visits, what was said, what was diagnosed, what tests Kaiser did approve, you have to do the appeal process first (see above) and have an independent doctor confirm that you have gluten intolerance or celiac which was further irritated by Kaiser's indifference to your problem. State Department of Insurances take consumer complaints very seriously because they really don't want consumers to get the dirty end of the stick when it comes to trying to use your benefits.

Also every health insurance company only wants to do "medcially necessary" testing only... and there are loopholes around such stuff. The doctor has to be creative, not untruthful. Do Kaiser doctors get bonuses based on how little they order tests or provide referrals to specialists? if So that could be viewed by Dept. of Insurance as against Consumer Policy.

  • 3 weeks later...
ibesurfn Newbie
Just wondering if there is anyone out there, like me, on Kaiser insurance. I'm betting they ignore Celiac symptoms as well as they ignore other things. Any experience out there?

Hi Jerry

I'm new here but no stranger to Kaiser (they diagnosed me in 1994).

My GP is a great doc but my gastro guy was a total jerk who told me "it is impossible to lose 50 lbs. in 30 days" (even though my GP documented it).

My celiac was pretty extreme and I now realize that was probably a blessing since they had to hospitalize me and find the cause. It still took many tests and many doctors to get it right and the Gastro doc finally apologized to me for his bedside manner.

The only good part of it was the fact that the doctors were able to "nework" my symptoms between other hospitals and doctors to find the cause.

Only then did they do the biopsy which confirmed Celiac.

They were feeding me wheat crackers while I was bedridden........so much for the physicians oath....Ha ha!

I'm fine now but cooking consumes a lot of my time and eating away from home can be a jerk.

Prepare to make some adjustments in your lifestyle if you are diagnosed.

Good luck.

Rick

JerryK Community Regular
Hi Jerry

I'm new here but no stranger to Kaiser (they diagnosed me in 1994).

My GP is a great doc but my gastro guy was a total jerk who told me "it is impossible to lose 50 lbs. in 30 days" (even though my GP documented it).

My celiac was pretty extreme and I now realize that was probably a blessing since they had to hospitalize me and find the cause. It still took many tests and many doctors to get it right and the Gastro doc finally apologized to me for his bedside manner.

The only good part of it was the fact that the doctors were able to "nework" my symptoms between other hospitals and doctors to find the cause.

Only then did they do the biopsy which confirmed Celiac.

They were feeding me wheat crackers while I was bedridden........so much for the physicians oath....Ha ha!

I'm fine now but cooking consumes a lot of my time and eating away from home can be a jerk.

Prepare to make some adjustments in your lifestyle if you are diagnosed.

Good luck.

Rick

Thanks for your reply. My wife wonders why I do not simply go to Kaiser and get diagnosed. The problem is, like many who realize Gluten could be causing them problems, they tend to not eat as much. I certainly shy away from anything that I think is going to give me the runs, I'm funny that way. When I finally decide I must have been imaging it...and eat a couple pieces of pizza, then have the runs for two days and stomach pains for 4...I am reminded most strongly that I shouldn't have done that...

Sooooo, I seriously doubt the ability of Kaiser to diagnose this, unless I have blood running out of multiple orifices...and given the fact that I'm eating relatively little Gluten...I'd get the usual Kaiser run-around.

What I should do is order up a set of tests from Enterolab, I keep meaning to do that, but life keeps getting in the way...then I eat gluten again and "oh crap"(no pun intended) I remember really do have a problem.

I was really good over the last two weeks, I went two whole weeks before I fell of the wagon...Jerry

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,684
    • Most Online (within 30 mins)
      7,748

    Betty Siebert
    Newest Member
    Betty Siebert
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.