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

Really? Another Curveball?


Georgia-guy

Recommended Posts

Georgia-guy Enthusiast

So I thought that after going out of pocket at a lab, and getting positive blood work, I would be done with a need for tests......... However, I just read a letter from my doctor saying that "due to the fact that I did NOT have the blood work done through a doctor's office, the results of the blood work would not be accepted by the office as valid for diagnosis."

That's true, I did NOT get the blood work through a doctor's office (for those who don't know, my insurance refused to pay for it, and my doctor wouldn't order the tests after a denial to pay from the insurance). However, I did "skip the middle man" and get the blood work done directly at the lab...with the tests being run at the SAME lab as my doctor's office sends their blood work to! Why isn't this acceptable?!? My doctor now wants to run the blood work with the blood drawn at the office, and then will accept the results as valid.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

And he wouldn't accept them if another doctor had me run? I understand if he won't let you hand him a paper with stuff on it.... But what if the lab sent the results to him? You could request that.

Georgia-guy Enthusiast

If another doctor ordered the tests, they would accept them. It's because I went outside of the system and did it that they won't take them. The results were electronically sent from the lab to the doc, and I brought them a sealed copy from the lab with a tamper evident seal.

kareng Grand Master

If another doctor ordered the tests, they would accept them. It's because I went outside of the system and did it that they won't take them. The results were electronically sent from the lab to the doc, and I brought them a sealed copy from the lab with a tamper evident seal.

THen that is just them being being pissy. Tell them there is no reason to re- do and charge you or insurance for the tests. Or get another doctor.

Adding - do you have insurance now? This might be something to make them aware of. It's being done to make money, not for patient care.

Georgia-guy Enthusiast

They can charge my insurance all they want, they're worthless anyways.

kareng Grand Master

They can charge my insurance all they want, they're worthless anyways.

I don't want you to get stuck paying. Are you in Georgia? I am sure what the doc wants to do isn't quite legit in the US . Get another doctor. Have the lab send the new doc the results. They keep the results for a few years. - 7 years at least.

Georgia-guy Enthusiast

Yes I'm in Georgia. The problem with getting a new doc is there's only 1 medical group where I live, and it's their "policy", so a different doc would have no difference. I know the lab still has the results cuz they came in a week and a half ago.


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



Celiac.com Sponsor (A8-M):



BlessedMommy Rising Star

What on earth?!!

 

Sounds a bit like insurance fraud to me, ordering a test that they KNOW that you have no need for. :angry:  What's the point anyway? Do they not believe the lab?

 

 If the doctor does anything, it should be ordering a biopsy, not making you redo the blood work that is obviously very positive. You want want to just tell him to go to a biopsy or just skip to another doctor altogether. Could he refer you to a GI doctor?

 

I'm sorry that you're going through this. It's amazing that anyone gets a diagnosis, with as ridiculous as some doctors/insurance companies are. 

user001 Contributor

I was gluten free for 3 1/2 months and my blood results still came back off the charts positive. Of course I was new and missed some things, like soy sauce and eating cross contaminated french fries. Everyone is different i suppose. So who knows?

user001 Contributor

Also you are not the only one to be getting the run around from doctors and insurance companies and this and that! Its a common issue!

RMJ Mentor

I think your doctor is being ridiculous. I have blood tests done at a lab instead of through my doctor because it is cheaper - and my primary care doctor and GI specialist both accept them.

LauraTX Rising Star

What on earth???!!!  If it is a large group practice, you may be able to speak to the practice manager and try to get them to make an exception, but if they have such ridiculous policies it is likely you will be needing to change doctors.

cyclinglady Grand Master

That is crazy!

I guess you could do the test over again, if 1) you are being held hostage due to only one medical group in your town, 2) you do not have to dish out more money and 3) you plan on living there for a long time! Otherwise, keep your lab records and show them years later to your next doctor near Atlanta (that is where my family lives...). Yep, I will be boating on Lake Lanier in a few weeks.........

My hubby is not officially diagnosed (13 years ago he went gluten-free at the advice of my allergist and his GP/PCP) and nothing is in his charts. He has never had to go into the hospital or jail, so he has done fine so far. Before the HealthCare Act went into effect, he did not honestly want celiac disease or a gluten intolerance on his records since I was uninsurable because of a Hashimoto's Thyroiditis, thumb infection, and rosacea dx on my record -- I kid you not! Well, I had insurance, but could not apply to other providers. Now, it is too late for him to get tested. But you have been tested.... I can not imagine a doctor not accepting your labs results from the same lab they use!

You will figure this out. Just take the time to think it through.

NatureChick Rookie

Granted, this is specific to your situation, but I have to ask, why do you think you need to have your doctor's office have on record that you have an official celiac diagnosis? Is there something specific that you need them to do for you right now that would require an official diagnosis? And if you can think of a reason, is it something that you NEED, versus something that is simply a recommendation?

It sounds as if this is primarily an ego issue. Some doctors absolutely refuse to do anything that was a patient's idea. And it is certainly not uncommon in the medical field. Because he refused to do the tests originally, I'd recommend finding another doctor no matter what. And it doesn't seem right to me that the entire medical system in your area has a rule that refuses to accept test results from outside their system. I highly suspect that this is a problem with one doctor, and he's likely never going to give you good care now that you've proven that he was wrong.

If it were me, I'd probably tell myself to just suck up the costs of doing private testing and forget about it for now. You've already got enough on your plate being in the early stages of being gluten free. As long as you don't have some immediate problem, I'd just tell yourself that finding a new doctor is something that you'll deal with in 2-3 months, once everything else has gotten easier. But I also think that official diagnoses and pressures to have endoscopies are overrated and often just a way for doctors to bill for procedures.

But if you did have a need for an official diagnosis, then I'd start eating gluten again now and just deal with 2-3 months of hell. Reactions to gluten can get worse (or at least more painful) the longer you've been gluten free so putting it off until later could be worse. And during those 2-3 months, I'd keep a running countdown of how many days you have left, knowing that there was a definite end date and relief in sight. But even then, I'd probably find another doctor to do the tests. No way I'd trust your current doc to run the correct tests and 2-3 months of suffering isn't worth a false negative.

moosemalibu Collaborator

I've had something similar happen to me before for a urinalysis. I work at a university and our neighboring department is the clin path lab. They run CBC's, chemistries, UAs all day. I was having horrible bladder infection symptoms. I gave them a sample (prepped as I would if giving one for the doctor's office) and they ran it. Gave me the tests: white blood cells, red blood cells all over the place! Took it to my doctor, said I needed ABX please. ONLY because she knew me and was a good doctor was she willing to give me a prescription. She said it was her license on the line,etc and that is why they don't accept outside lab findings. However, mine was done by a friend at a university lab, not an official lab that is currently used by my doctor's office. I don't see why they can't validate the test in their world... makes no sense. Sorry to hear about this. Find a new doc that is none the wiser of how the tests were ran before and move on.

Georgia-guy Enthusiast

Cyclinglady, when are we going to the lake? I haven't been to Lanier in years.

NatureChick, it's not that it was outside of their system, it's that it was completely outside of a doctor's office. It's because I went to the lab myself without a doctor's orders and had the tests run at my request.

Moosemalibu, dare I say first of all, you have a very good profile picture. :-) Secondly, I don't see why they can't validate it either. I can see the whole license thing, but that's why I had a sealed copy and they got the electronic copy directly from the lab.

BlessedMommy Rising Star

Cyclinglady, I had to chuckle about your comment about your husband not having to go to jail or to the hospital.  :D That's about what it boils down to, for most adults. There's very few situations where a DX would make that much difference to my situation. I just politely let people know that I won't touch gluten with a 10 foot pole.  :P

 

Even if I did have to go to the hospital, I'm sure they wouldn't make me show proof of celiac in order to eat off of their gluten-free menu. 

Georgia-guy Enthusiast

The main reason I want to get the official Dx is so that there will be reason for doing follow up blood work (monitoring my antibodies, vitamins, etc). I can do the diet without the official note in my charts, all I have to do when I look at a sub sandwich is remember the pain it will bring.

kareng Grand Master

Cyclinglady, I had to chuckle about your comment about your husband not having to go to jail or to the hospital.  :D That's about what it boils down to, for most adults. There's very few situations where a DX would make that much difference to my situation. I just politely let people know that I won't touch gluten with a 10 foot pole.  :P

 

Even if I did have to go to the hospital, I'm sure they wouldn't make me show proof of celiac in order to eat off of their gluten-free menu.

You have a hospital with a gluten-free menu that is really gluten-free? That is amazing!

BlessedMommy Rising Star

Bronson Methodist Hospital in Kalamazoo, MI has a gluten free menu. When I went there with my son when he fractured his femur, I ordered food off the gluten-free menu. I remember them bringing me fresh fruit, gluten-free toast, and soy milk. I also remember their gluten-free cheese quesadilla. I'm not sure what they do about preventing CC, though, at the time when my son had just had a major leg break, honestly I didn't even think to ask.  :ph34r: Being that the celiac support group meets at Bronson, though, I'm guessing that their gluten-free menu really is gluten-free. 

 

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

BlessedMommy Rising Star

Man, I just studied their menu and they even have a gluten free veggie burger on their hospital menu! Ope's brand organic veggie burger!

 

I hope to never need to go to the hospital, but if I ever have anything that isn't an absolute deadly emergency that would force me to go to the nearest hospital (Bronson is an hour's drive away from us and my son was transferred there via ambulance, because he needed an orthopedic surgeon), I would definitely pick this one!

Georgia-guy Enthusiast

Man, I just studied their menu and they even have a gluten free veggie burger on their hospital menu! Ope's brand organic veggie burger!

Back up a step...what gluten is found in burgers?

BlessedMommy Rising Star

Most vegetarian burgers are quite gluten heavy, as they are based on soy and wheat gluten usually. So the burger that I was referring to on their menu was a gluten free veggie burger, not a gluten free conventional hamburger.

 

That makes it even more extraordinary that they offered the item since it is not a very common item to begin with. As a gluten free vegetarian, I really appreciate it when gluten free vegetarian options pop up.

 

Hamburgers made of pure beef with no fillers should be fine. Some restaurants put fillers in their hamburgers, though, so never assume anything.

Georgia-guy Enthusiast

Haha, totally didn't think about the "veggie" part being important. Still learning here.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,685
    • Most Online (within 30 mins)
      7,748

    tdouglas2901
    Newest Member
    tdouglas2901
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • 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.