We’ve all had our dose of doctor horror stories. Heck…many of you shared your story right here.
While I’m grateful for the care I’ve received over the years for the myriad of my health issues and especially grateful for the care Mrs. Dude received this summer, there is still something just not right about our system.
Namely…we’re never told what anything costs. We just put our blind faith in our doctors, assume insurance will pick it up and hope for the best.
But sometimes that blows up in our face. Big time. Especially when a doctor prescribes solution after expensive solution when a simple celiac blood test was the answer all along.
Check out this email I received from a loving and frustrated mom. It’s long but stick with it. It’s worth the read…guaranteed…or your money back.
And I’m going to interject a few Dude Notes along the way.
Dude Note: I’ve heard this from so many celiacs and I can relate myself. “I didn’t know how sick I was until I wasn’t sick anymore.” You just accept what you have as…normal.
It seemed like she would call me each day and say she just couldn’t understand why she was so tired. She felt she was getting plenty of sleep. I told her “hello you have a lot on your plate; of course you are tired.” (I felt guilty after we found out there really was a problem).
Then she would call me what seemed like every day with a new symptom. She complained of always feeling tired, shortness of breath, chest pain, pain in her extremities, severe headaches, brain fog, she was really irritable, she had really bad dry scalp, mouth sores, leg cramps, unexplained acne (uncommon for her), loss of appetite, mood swings, among many other things.
Dude Note: To this day, I am still amazed at the many ways celiac can manifest itself with such a variety of symptoms.
Dude Note: This really hits home as I had multiple embolisms in both my lungs in 2008. Seeing that it’s the leading cause of instant death, I know how lucky I am to still be here.
But he felt the most important thing was to try to get her iron levels up first. Her iron, iron saturation levels as well as her ferritin levels were bottomed out and her TIBC was through the roof, and so he ordered IV Iron infusions. I won’t even go into how difficult that was. (Chronic problems with her veins). Anyway she had two. She didn’t feel better immediately and new symptoms were arriving daily. The doctors were confused they thought for sure these symptoms were not all related.
Dude Note: THIS is the point where celiac has to enter the minds of the doctor. We’ll get there. I think.
After numerous trips to doctors and emergency rooms and such I finally pushed the doctor to order a colonoscopy/endocopy. We couldn’t wait anymore. All test were inconclusive and she was getting worse by the day. One trip to the ER nearly resulted in me getting thrown out for telling off the doctor who insisted there was nothing wrong and that she looked perfectly normal.
Dude Note: How many times have we heard this? Effing doctors with a God complex. If they can’t find a diagnosis, it must be in the patient’s head. Don’t even get me started.
However 3 days of no gluten and it completely corrected itself. And the two times she has gotten glutened that was the first symptom to come back. Upon finding your site I saw that celiac can cause bladder/cervical swelling and I showed the doctors; none of them have ever heard of that. It took a few months to get her feeling better but it has been a real eye opener. The gastroenterologist said celiac is something you are born with and I was just stunned.
Dude Note: To clarify…yes we can be born with the gene but it doesn’t mean you actually have celiac disease until it rears its ugly head.
It has truly been a very educational experience to go through this with my daughter. When she gets glutened, all her symptoms come back and can last as long as 2 weeks. I talk to everybody I know about our experience because had I not pushed and advocated for my daughter, the doctors may have treated her anemia and just thought everything else was in her head. I have shown your celiac symptoms chart to all her doctors so that they can know how many symptoms can be related to this disease.
Thank you for everything you do Gluten Dude! It is appreciated more than you can ever know. We have now hit the 1 year mark of when this began. So far the iron infusion has held but the hematologist says she may require them throughout her life to maintain healthy levels. It was a frustrating situation to get the diagnosis and all the tests she went through was crazy. In four months, $24,000 worth or medical claims processed through my insurance company. All of which could have been avoided with a blood test and endoscopy.
It is great to see better education coming out about this disease but it definitely needs to continue, especially in the medical community.
Once again thank you for everything you do and your support for the Celiac community.
$24,000 when a simple celiac blood test would have done the trick.
That just ain’t right.
40 thoughts on “$24,000 in Medical Expenses When a Celiac Blood Test Was the Answer”
in all seriousness, I think you may want to look into guest-lecturing at medical schools.
I think we all need to be sitting in front of a Congressional hearings committee on Health. Think of all the disability and healthcare payments that could be saved (not to mention lives) if we took it to the top.
Why would they want to administer a simple blood test when they can scam $24,000 out of you? Sometimes I think their ignorance is intentional.
The health care system is set up to herd us through like cattle. Doctors don’t want to take the time with patients anymore because it’s not profitable. Especially if they can’t treat your illness with a pill.
Every time I hear one of these stories I’m grateful that my diagnosis came about as quickly as it did. Even with a diagnosis I’ve still had several doctors roll their eyes when I ask about gluten in medication or any other issue I think might be related to celiac. The GI who diagnosed me even said “don’t believe everything you read on the Internet” when I asked him about joint pain. It’s sad, but we usually know more about our condition than they do. Maybe we’ll get there one day. 🙂
They are getting better. My endocrinologist is the one who spotted my celiac…because my ferritin values bottomed out even though my thyroid disease was perfectly controlled. So she ordered the blood test. And here I am…almost five years later…CD under control. (Still can’t get my ferritin to where it *should* be…but that’s because I *still* have absorption issues. And my values aren’t bad enough for US doctors to do iron transfusions.)
I second the idea of lecturing at medical schools. Or doing a TED talk…
This post just struck me to the core. Misdiagnosis, Prescriptions, and 20 years of being told”It is ALL in your head”, financial ruination and bankruptcy all because the doctors just couldn’t get it right and didn’t know what to test for. All they kept giving me was psychiatric drugs that only served to make me worse! Please, no offense, but I’d take 4 1/2 months of misdiagnosis any day over 20 years. Don’t get me wrong, I’m glad this young woman got the answer she so desperately needed, but WHY does it take getting to your deathbed before they can figure it out? This should not be. I shouldn’t have read this while I’m at work. Now I have to go cry outside for awhile. My god why couldn’t my doctors help me sooner. I could have had such a better life. Now I’m 40 and trying to recover from the destruction, not just physically and mentally, but also financially. At least now I can live. I wouldn’t have made it without this diagnosis. It saved my life, but left me to be the one to pick up all the pieces.
You’re not alone. My reaction was “she has no idea how lucky she is to have been diagnosed so young”. Like you, I have a lifetime of celiac missed diagnosis. I’m near 60 now. I have no doubt that my thyroid/adrenal/PA results from celiac diagnosis being delayed all my life. I have no faith in the medical system whatsoever and have often said that a doctor will kill you if you just give them half a chance. I’m quite jaded about it all. But I have learned that this is just the way it is. Buyer beware. It scares me how easily folks put their faith into a doctor without checking things out themselves. Rarely do people even get a copy of their lab reports/etc. for review and their personal records. But I do know that God is sovereign and that nothing that occurred in my life happened without God allowing it. Romans 8:28 has clearly been proven in my medical situation, so all is well. But again, that young girl has been saved a lifetime of “tired” and symptom after symptom. And thank goodness for the loving mother who supports and advocates for her daughter.
Thank you for being so compassionate Cindi. My post was an emotional response and I worried how people would respond to it. I too am so glad that this young woman has a chance to live a healthy and happy life. At 23 life is just beginning. She is extremely fortunate to have had a mother who would not rest until they found what is wrong. The real problem is that too many doctors dismiss Celiac or have never heard of Celiac and don’t know what they are looking at. There are so many different symptoms that it’s very hard to diagnose. But, if doctors would test people for this more frequently they might catch it and then people can live a full life. My symptoms were absolutely physical, but mostly emotional, mental. My main symptom was severe debilitating depression and anxiety. So naturally my doctors all thought that the physical pain I was experiencing was related directly to depression and not something autoimmune related. I am so sorry that it took so long for you to find your answer too. It’s a terrible thing to know that your life could have been so different “if only”. But, to look on the bright side, we are now able to recover and live the rest of our lives no longer wondering what in the world is wrong. The depression was exacerbated by the fact that every doctor I went too dismissed me and refused to take my symptoms seriously. It wasn’t until I was hospitalized and on my death bed at 95 lbs that they began to look at it more closely and I finally got the correct diagnosis. It was both the saddest and happiest day of my life. Finally vindication! Never again would I allow a doctor to tell me it is “all in my head”. When you know something is desperately wrong, you just know.
It took 20 years here. I even knew about it and asked whether it would be gluten. I’ll skip my life story but it ruined a good chunk of my life and the chance at any college degrees or getting a real career. IMO plenty of doctors do not deserve one red cent. I had the antibody test twice, but the only thing that really did the job was when a better Dr. suggested the elimination diet, which is free.
I don’t blame you for getting emotional. I’m angered from all the years I was overlooked and ashamed of my underachievement to this very day.
The woman in the story was so lucky to have her mother advocating for her.
Try 40 years of misdiagnosis. I am happy for those who get a diagnosis in a few years. No one should have to suffer for years (much less a lifetime) because so many doctors are ignorant. The damage to my body is so extensive that some is now permanent. Nerves don’t heal well. Neither do tendons after 40 years of being used for nutrition. I feel for you. I “get” how angry and sad the whole mess can make you.
I can relate to this woman’s story in so many ways. Would you mind if I share a link to my page where I share my journey of misdiagnosis through the years?
Also, I love the look of your new page. Congratulations!
Also, I finally finished my run through NYC!!!
And five days to run the marathon? Better than I would have done 😉
Thanks Dude! Here’s the link: http://www.thepatientceliac.com/my-journey/.
Dickwad allergy professor had no clue what to make of my history of dermatitis herpetiformis. My asthma also went almost completely away once I got my gluten load way way down. Don’t tell the Dickwad, he’d send me to a shrink and bill for the referral. The docs really are shockingly ignorant of a condition that only affects about 1% of the population.* They are however experts at billing, just ask them.
*hint, there’s a hierarchy among doctors
Keep in mind that the Endoscopy would have been needed to get the diagnosis after the blood test. Part of the $24k is something she would have needed anyway. I know mine was pricey.
I was pretty lucky. I had mild but constant GI symptoms for a few years before I finally went to a Gastroenterologist. She ordered blood work and said she was testing me for Celiac even though she didn’t think I had it. Blood work showed the antibodies, and endoscopy confirmed Celiac.
She started out great! But now she doesn’t believe in any of the other symptoms I have. She throws pills at me for GI issues and tells me to see a psychiatrist or a nutritionist for anything else. How about treating a whole person, Doc? 😀
Then my primary care physician who has seen my endoscopy results puts things like “Patient claims to have celiac even though her blood work doesn’t indicate that’s the case” in my records. Of course it doesn’t show in my blood work, genius! Because I’ve been incredibly careful about everything I’ve eaten for the past three years! Ugh.
The Case of KV: Your doc wrote, “Patient claims to have celiac even though her blood work doesn’t indicate that’s the case” in my records.
Analysis: the doc is making a written record of your statement and the test results so that if you sue for malpractice there will be evidence upon which to rely. This is how insurance companies train their clients , errrr, doctors to limit payouts. You should also make written records.
Dude, Just because $24,000 worth of claims were processed through insurance, it doesn’t mean anyone paid or received that amount of money. This situation is frustrating enough without sensationalizing it. Typically insurance companies pay a very small fraction of what is listed on an EOB. It would be more intellectually honest to find out what was paid out-of-pocket.
Really? I don’t think he’s sensationalizing it at all. The way the healthcare system works is incredibly frustrating and inefficient and this young woman’s story is a perfect example of that.
Regardless of how much money actually exchanged hands or what was actually billed to the patient, you can’t deny that $24,000 is an astronomical amount when a roughly $1250 procedure (what my upper GI cost in 2013 – and yes that’s what was billed to the insurance not what I actually paid) would have confirmed what the problem was. I’m not sure what the initial bloodwork that prompted the endoscopy actually cost, but I’m guessing maybe a few hundred dollars – again, what was billed to the insurance because I’m sure I didn’t pay that much. So add that in and you’re looking at maybe $1,500. That’s a huge difference.
I think the issue that this story really drives home is what many of us have to go through to actually get a diagnosis. It’s not really so much about the medical bills or costs of all the tests. That’s just me being intellectually honest.
Oh Mackenzie, this is not at all “sensationalized”. In 20 years of hospitalizations, medical tests, prescriptions, appointments, etc. I have no doubt I spent way over $24,000 out of pocket. I’ve heard hundreds of stories of others going through the very same thing. I’m not really sure why you believe this is sensationalized. Do I think it’s possible to incur that amount of money in 4 1/2 months, you bet. It depends on how long they keep you inpatient, what kind of coverage you have (if at all), what tests and how many of them were done, etc. There are so many factors and variables.
Over 20 years, $24K is not a lot to pay if you have health issues. Seriously?
I’m sympathetic to anyone who suffers from a chronic disease. It’s a crappy hand to be dealt. Also, health costs and health insurance are difficult to understand. But adding up pretend numbers on EOBs is not how to gauge medical expenses, and putting that number in a headline is absolutely sensationalizing the issue.
I’m not sure I understand your point, but what I’m getting out of it is that you are calling me sensational and for that I thank you 😉
Don’t be so glib.
An EOB is an “Explanation of Benefits” provided by one’s insurance company. The woman you wrote about added up a bunch of theoretical costs which have no bearing on what she or anyone else actually paid.
It’s clear that you don’t really understand how health insurance works. An awful lot of people don’t. But don’t be part of the ignorance. You might have scared away a lot of people who need a diagnosis, but who think it’s going to bankrupt them to get one.
Nobody knows how health insurance works…that’s part of the problem. My job here is not to try to explain how it works. My job is to get the medical community to stop wasting resources and test for celiac early.
I would say that the amounts on the EOB ” sheet are quite “significant. Those without insurance sometimes have to pay those costs – and those who can’t pay those costs – well, the rest of us end up paying it in higher insurance premiums. So there is considerable significance in what those assigned costs are. They represent the cost of health care. And as a former long-term benefits administrator, I do understand insurance.
I would also say that we the consumer are partially to blame for our poor medical system. Folks got used to insurance paying for everything and stopped asking the cost of a procedure/test/etc and especially if it was necessary, what would it show, what are the risks, etc. We became very lazy consumers of health care. How many people have comparison shopped for health care? There is no other product that we would be so uniformed about. This really started back in the ’80s.
(Former Benefits Administrator)
I am also a former benefits administrator.
It’s actually possible to understand how insurance works, Gluten Dude, if you make the slightest effort. If you’re going to base an entire article on this mythical $24K figure, you should know that you’re quoting nonsense.
Cindi – The costs listed on an EOB are rarely, if ever, actually applied to anyone. If someone doesn’t have insurance, these costs can be negotiated. And I agree with you that we are lazy consumers of healthcare. One of the reasons the person in this article was willing to undergo all of the unnecessary testing was that they WEREN’T going to be out of pocket more than their deductible and co-pays. They obviously have insurance.
It’s always possible to shop around, ask for a pre-determination cost estimate, or simply demand the tests we want. It’s hard to be super assertive, but it’s necessary. I’ve had to be that way treating my own chronic illness that is also poorly recognized.
Sigh. You really think the entire article was based around the dollar amount? The point of the article is that too many doctors don’t consider celiac early enough in the process. The patient suffers and is sometimes told it’s in their head. And too much time and money is wasted…whether it’s $2,400 or $24,000.
This is my daughters story and yes $24,000 is what processed through our insurance. I (by the grace of God) have decent insurance and did not have to pay all of that. However that isn’t all the medical bills. My daughters health is an ongoing problem she has to see her Hematologist every 4 months and have bloodwork each time to see if the iron infusions are holding. Her Anemia is a severe problem, and really there was much more tests and bills that we went through that I didn’t write about or it would have been a book.It was never my intent to sensationalize anything. I wrote about our story in hopes to help someone else who may be going through the same thing. As a matter of fact I just checked my insurance site and as of today a little over a year from when this all began for us this time (I say that because my daughter has been through hell off and on her entire life with health issues we now know to all be related to this diseaseand so over her 23 years I have spent a ungodly amount of money only to get one misdiagnosis after another ) there has been $31,192.62 and over 100 claims for procedures tests and medication. Not my out of pocket cost but that is neither here nor there. I am still paying continual medical bills for her and expect to for a long time to come.
Is it any wonder why people self diagnose? When doctors refuse to do a simple blood test and tell you that “it’s all in your head”, you finally come to the conclusion that you don’t need anyone’s permission to try a gluten free diet.
When it turns your symptoms around you feel great for the first time in forever THEN they want you to do a “gluten challenge” to prove that you’re a celiac.
How many people are going to give up the cure of a gluten free diet just so a doctor can say “yeah, go ahead and eat gluten free”?
Especially if any test results turned out to be false negatives to begin with! (In my case) And along those lines, imagine how many true celiacs there are out there who don’t want to go through the official diagnosis route. IMO, this issue has got to be much higher than this 1% people keep throwing around.
I suffered about six months from when it really hit me until the time I diagnosed MYSELF. During that time, I went to a few doctors and had everything I could think of tested. They ALL wanted to diagnose depression and prescribe antidepressants despite my insisting that it was more than that. I wasn’t about to leave my fate up to doctors. I was online everyday researching until I figured it out. If i hadn’t I would STILL be suffering, instead of recovering! How they could not think of celiac is beyond me. As someone else said, I think it is willful ignorance.
I sympathize and I can relate (on a slightly milder note…I was not as bad off as your daughter). I went through many medical tests and procedures as well…heart monitor, EKG’s, Novasure, blood tests, thyroid tests. My doctors never suggested celiac disease or gluten as an issue and when I finally brought it up to an immunologist he said my symptoms did not occur from eating gluten. I did not have chronic diarrhea and was not losing weight so I had been misinformed. He advised that I do not read “junk” on the internet. I don’t want to have such a jaded view of medical professionals, but they have not been properly trained in many cases. If it wasn’t for me reading “junk” on the internet and in books, I would still be suffering or worse. Listening to how my body/mind reacted to a gluten free diet was the smartest thing I did (still would be nice to be properly diagnosed though). I am so glad you both found an answer and that your daughter is on the healing path. I wish you well!
Several years ago a GI doc – and a very good one who studied with Peter Green at Columbia, made a remark that only
15 min is spent on celiac in medical schools and the students were told “not to spend much time on it as they would
probably never see it! Perhaps that is one reason, another is with over 200 symptoms CD is difficult to diagnose, a 3rd is these docs are afraid of getting sued, 4th they simply don’t know enough about the disease– the most under-diagnosed autoimmune disease facing medicine today. That said, I agree with the others and think it IS time for you to go on the road and speak to a gathering of medical professionals which will include Dr Fasano among others. The date is April 11 and I am going to wangle you an invite from the sponsoring organization. With your sense of humor, you might be able to bring some levity to a subject too-often ignored.
These stories make my hair stand on end because they all have a common thread: the failure of physicians to do the one thing- start with the simplest– a blood test looking for either or both of the genes, followed by an endoscopy of the small intestine and a blood test checking the antibodies. Hello???? Love the new website!
Dude, this involves my day job a bit, but I want to put this idea out there. What we need is someone tracking patient outcomes for celiac disease. Pulling together data to show how much the hospitals and doctors can improve their patient outcomes with a $200 test rather than $24K in procedures. Some of this will come as more and more of the Affordable Care Organizations start delving into the costs of all these tests and wondering what’s going on.
These guys (http://www.centerfortransforminghealthcare.org/projects/detail.aspx?Project=9) did a project that wrapped up about treating diabetics with insulin properly so that their patient outcomes improve while under the care of a hospital. I was at one of the participating hospitals for surgery this week and it was a HUGE turnaround from the previous care that I had been given the last time I had to stay in a hospital. The hospital worked with me on my care, and I ended up leaving early because everything was under control with no complications because my insulin was charted by me and dosed at the proper time.
Anyway, what the folks do that I linked are take massive data banks of information that the hospitals hold and then figure out with the data the best things to do to improve healthcare. And its totally free to the hospitals – the group is a nonprofit.
The reason I suggest this is that, in the end, it comes down to money and punishments in healthcare. If things are to improve, we need to find a way to enlighten the doctors and nurses out there how much money they could save in procedures and how many punishments they can avoid from doing things the right way. For example, the hospital I stayed in for surgery gets kudos for great insulin care but they royally f’ed up on dietary restrictions and gave me a non-gluten free menu. Luckily a kind physician’s assistant (who got it, even when I couldn’t talk very well from the surgery!) was a bulldog on my behalf and got me a gluten free breakfast and lunch. I intend on filing a complaint about it, because I want to make sure the incident is followed up on.
We cannot just stand by and say “ha ha, stupid doctors”. We need people to fight. We need people to report everything. Nothing is going to change from just one action, but one action from many can change a lot.
Heart-breaking, the story and the comments. Inspirational, the actions and the responses.
My son has also been diagnosed this January. He is only 6 but we think he has been sick for at least 3 years. We went through a lot of different medical tests when I suggested the Celiac panel to his pediatrician…he gave him the wrong test and told us he did not have CD. A couple months later, I switched pediatrician and asked him to review everything we had so far( brain MRI, electro encephalogram, blood tests, etc.) and casually said’ well, we already eliminated Celiac’ to which the new pediatrician said ‘no, we did not’….Aaaahhh! His blood numbers came back excessively high( almost a year later they are down a factor 10 and still highly positive) as well as all his inflammation markers. Of course the endoscopy was also a high positive( a lot of damage).
At age 6, our poor little man was already carrying all sorts of misdiagnoses and could have had more if we( his parents) did not contest/ refute many of them. I now get copies of all the medical tests anyone in the family goes through, the blind trust in the medical community is long gone.
As a side note, after being accidentally glutened this past week at a friend’s party( whose parents went out of their way to cook GF for our son but it was without counting on canola oil cooking spray laden with gluten to thwart their best effort), we realized that loss of bladder control is also one of his symptoms. We thought before that only night time enuresis was linked to him ingesting gluten but he has been having day accidents all week. :_(
I keep a 3 ring binder of my daughters health records and test results. When a doctor questions whether something has been done or what the result was I quickly refernce to it and usually have the answer before them. We have to advocate for ourselves and especially our children.
I would like to put one problem that I’m seeing crop up more and more. Even though physicians are becoming aware that Celiac isn’t as rare as they thought, they still aren’t being educated as to what it takes to get an official diagnosis. I was contacted by someone with a young child who was having classic symptoms associated with Celiac. The allergist took a blood sample to test for Celiac, but then told her to go home and immediately remove gluten from his diet and treat it as though it is Celiac. Problem is that if the blood tests are positive he would still need a follow-up endoscopy to confirm and get an official diagnosis. He may need one even is the results are negative. Since this is an allergist there is no telling how long he will be gluten-free before being referred back to his pediatrician to then get a referral to a gastroenterologist to get an endoscopy (if the pediatrician will even do that). Certainly long enough to possibly skew endoscopy results. To make matters worse the mother wants to just call it Celiac without looking further “because the doctor said he is sure that’s what it is.” So we have physicians that now know to look for it, but are still missing the mark when it comes to the steps needed to officially diagnosis it.
BTW..I should add that the mother was contacting me for gluten-free recipes…not for medical advice.
It amazes me that doctors will consider things like MS or brain tumors or something of that nature, that requires a very specific and costly type of treatment , when they could do a simple blood test and either confirm or eliminate the possibility of celiac which would result in a manageable form of treatment that the patient has complete control over.
I’m one of those self diagnosed, in my case I was just backwards (never considered the possibility of celiac until after going GF and having some “ah-ha” moments. The closest I have gotten is to have gene test done to confirm I do have the gene. Took all my info and gene test results to my PCP and his response was “celiac is rare and you don’t have DH, my 2 celiac patients have DH”…… in other words, he’s kicking it old school with very outdated information about celiac. Yeah, I was not happy with his response! Did make an appt with a gastro doc specifically to discuss celiac. According to the patient reviews he “thinks outside the box” We shall see…..
My dad has been really sick and I am convinced it’s celiac (pretty sure the gene came from him). He did mention it to his PCP, who replied “probably not…. but if you want to go GF that’s ok…” UGH!!!! He now has a bout with diverticulitis and is going to see a gastro – I told him PLEASE GET THE BLOOD TEST!
I am also in a similar situation. I had the test after my daughters diagnosis as did my husband. Both were negative. However I suffer from many of the symptoms and have my entire life. I have not changed my diet because when it comes time for my visit to the GI I am going to insist on a endoscopy to check for sure. I believe this gene was passed through my side of the family problem is my parents and grandparents are all passed away so no way to confirm.