Why Do Some Docs Refuse Celiac Testing?

[Nen]

I have been doing lots of reading lately about celiac/gluten intolerance, and I keep coming across people who say their doctors either outright will not do the testing for celiac, or scoff at it.

I wonder why this is? It seems like a simple enough initial test, just a blood draw. Why not rule out (or in!) one more thing? It does not make sense to me.

[Roda]

My kids pedi refused to test my boys after I was diagnosed. I was told that they were healthy and it was unnecessary. What a bunch of bunk! I'm not sure what the pediatricians thoughts or agenda were. Both of my kids were seeing a pediatric allergist/immunologist at the time also so I put in a phone call and an explaination and within several hours the order was faxed to the hospital. They both had negative blood work. Fast forward two years from their initial screening and my youngest son was positive and has been gluten free ever since.

[JoshB]

It's just economics. Most docs when not given some incentive (a kick back from the drug company is very common for prescription-writing for instance) will do what they can to save you money.

In the worst case, let's say they decide to screen everyone. They'll get a positive about one every two hundred people. So at $250/person, that single diagnosis cost $50,000. Medically, there's a lot of important things that could get done for that money.

Of course, there are other risk factors and at some point they should be saying that it does make sense to test. A lot of doctors are still operating under what they were taught in med school, though, which means that they think the rate is maybe 1/3000 instead of 1/200. So they think there is very little chance of it, and that there are many other things which should be ruled at first. It's hard to remember it from this side of the fence, but usually that's the right call. We're the freakish exceptions that get to suffer for years so that fifty other people didn't have to unnecessarily waste money on testing.

[pricklypear1971]

On the flip side, if they'd run the numbers on those who go undiagnosed and have 50+ visits or procedures or bloodwork or rx for wrong diagnoses I bet they'd be ahead by ordering testing, especially for at-risk populations.

But humans, especially the U. S., don't think that way. Corporations definitely don't.

[ravenwoodglass]

Because diagnosed celiacs don't make them or the drug companies any money. Okay that is not the reason but they sure don't make the thousands off me they used to.

I think most doctors just think it is very rare. Some may not want to test because then it would mean the IBS diagnosis that they gave their patients years ago would be wrong and heaven forbid they should have been wrong.

Obviously I am not bitter and mistrustful at all after 45 years of misdiagnosis.

[pricklypear1971]

Because diagnosed celiacs don't make them or the drug companies any money. Okay that is not the reason but they sure don't make the thousands off me they used to.

I think most doctors just think it is very rare. Some may not want to test because then it would mean the IBS diagnosis that they gave their patients years ago would be wrong and heaven forbid they should have been wrong.

Obviously I am not bitter and mistrustful at all after 45 years of misdiagnosis.

True dat.

[mushroom]

Bottom line is it costs the physician nothing to write a prescription. The tests he orders, if you are in an HMO, will count against the annual cost of taking care of you versus what they earn in premiums, and they do add this stuff up, for patients and for doctors. Besides, as a pp mentioned, there are a lot of incentives to keep writing prescriptions (sell more drugs, get more rewards - and you'd be surprised at their extent - and generate more office visits keeps doctor booked and makes him look good. IBS is an easy diagnosis for which there is a drug. Celiac requires more awareness - keeping up to date, especially - and a more recent education, plus a doctor who actually cares about you getting better rather than keeping him in business (another hardened cynic here ) Nobody bothers to look down the road and figure out what failure to diagnose costs, like my Humira for my RA.

Josh, the numbers currently quoted are one in 133, which also are out of date and grossly understate the extent of the problem.

[pricklypear1971]

Ironically, insurers would be ahead by testing (blood). If Celiac is caught, the treatment is non-prescriptive. Great for them. Also, prevents visits in the future for other conditions that require rx (ok, lots of stuff associated with Celiac but gluten-free solves a lot).

Now, pharma wants you to sick with something they gave an rx for. And pharma is great at romancing physicians.

I can't figure out how docs are missing so much Celiac and gluten. Seriously. I'm so sick of hearing about screening for everything else and gluten is associated with some of the top diseases, especially diabetes. I can't believe I was never screened after the Hashis dx. THAT was ridiculous.

[JoshB]

Josh, the numbers currently quoted are one in 133, which also are out of date and grossly understate the extent of the problem.

I'm not sure why that would necessarily be an understatement. 1/133 comes from the red-cross study. You might get more if you take all people with wheat and gluten issues, not just celiacs. I think that the 1/133 study is probably an over estimation for actual celiac disease, though. Caucasians are strongly over-represented among blood donaters, and the also make up the majority of celiac cases, so it stands to reason that uncorrected studies based on our medical blood supply cannot be a good direct comparison for the whole of the US. It might be safe to suggest that 1/133 is a ballpark ratio for Caucasian Americans.

[cahill]

My first response to your question was "because they are idiots" but that is not entirely true.

Not educated about celiacs is probably closer to the truth.

BUT there is also an arrogance about them being right and the patient not knowing what they are talking about that also comes into play.

I was first diagnosed with IBS at age 20( the first of many misdiagnoses) years and I do mean years later , at the age of 54 I was diagnosed with celiacs (yeah I am a BIT bitter when it comes to doctors)\

More education for doctors on celiacs is needed but that will not happen because there is no money (pharmaceutical)to push it along .

[Nen]

It is a good point that diagnosing celiac does save a lot of money in the long run, preventing a person from getting all the aliments that come along with long term undiagnosed problems with gluten.

Of course also coming up with an answer that does not involve some sort of drug probably makes the drug companies unhappy, but that saves money too.

[Nen]

My first responce to your question was "becasue they are idiots" but that is not entirly true.

Not eductated about celiacs is probaly closer to the true.

BUT there is also an arraguance about them being right and the paietent not knowing what they are talking about that also comes into play.

I was first dignosed with IBS at age 20, years and I do mean years later , at the age of 54 I was dignoseded with celiacs (yeah I am a BIT bitter when it comes to doctors)

I also have had IBS for 10 years now. Still going strong...(sarcasm)

[ravenwoodglass]

I'm not sure why that would necessarily be an understatement. 1/133 comes from the red-cross study. You might get more if you take all people with wheat and gluten issues, not just celiacs. I think that the 1/133 study is probably an over estimation for actual celiac disease, though. Caucasians are strongly over-represented among blood donaters, and the also make up the majority of celiac cases, so it stands to reason that uncorrected studies based on our medical blood supply cannot be a good direct comparison for the whole of the US. It might be safe to suggest that 1/133 is a ballpark ratio for Caucasian Americans.

Celiac is found in all races and nationalities especially as more of the world 'Americanizes' their diets. A good example is the double copy of celiac associated genes that I carry. They are genes from populations in the Orient and Middle East where it is considered a celiac associated gene. Here if I had been gene tested before diagnosis I would have been diagnosed with RA and I would be dead by now. I did have all the symptoms of RA including the joint destruction. Interestingly they have found that some, not all, RA patients respond well to the gluten free diet. Mine has been in remission since 6 months after diagnosis.

I wish if they are going to use genes as a part of diagnosis they would gene test all diagnosed celiacs. I also think that 1/133 is a low estimate. So many folks just take the IBS 'diagnosis' from their doctors and then self mediciate and don't look and farther. Just take a glance at all the tummy meds in your local pharmacies and grocery stores. Those shelves would sit unused if they actually diagnosed all of us.

[peeptoad]

My primary care doctor actually did test me (negative), but when I eventually wound up at a GI specialist's office for ongoing issues he actually advised me not to go gluten-free because I tested negtative, even though I explained that it lessened my IBS symptoms. That baffled me, and then he wanted to prescribe me antidepressants (which do actually work for some people with IBS).

It saddens me that for many doctors it could all be related to money (or lack thereof). I'd like to think that most doctors care about their pateints more than that, but maybe they don't.

[pricklypear1971]

Celiac is found in all races and nationalities especially as more of the world 'Americanizes' their diets. A good example is the double copy of celiac associated genes that I carry. They are genes from populations in the Orient and Middle East where it is considered a celiac associated gene. Here if I had been gene tested before diagnosis I would have been diagnosed with RA and I would be dea

d by now. I did have all the symptoms of RA including the joint destruction. Interestingly they have found that some, not all, RA patients respond well to the gluten free diet. Mine has been in remission since 6 months after diagnosis.

I wish if they are going to use genes as a part of diagnosis they would gene test all diagnosed celiacs. I also think that 1/133 is a low estimate. So many folks just take the IBS 'diagnosis' from their doctors and then self mediciate and don't look and farther. Just take a glace at all the tummy meds in your local pharmacies and grocery stores. Those shelves would sit unused if they actually diagnosed all of us.

I agree a lot of Celiac goes undiagnosed or misdiagnosed. I see a lot of posters here who have a doc run a test (not even a panel), it's neg, then no other tests - malabsorption, biopsy, genetic. These people later go gluten-free and see results.

I have a friend with Sjogren's and she and all her kids are suspect - doc ran "a test", which is negative. So they dismissed it. After talking with me she's pushing it again.