Why Is This So Unknown?

[Curious121]

My friends mother is a medical transcriptionist, so she writes down all the medical records for the hospital and has never heard of Celiac Disease or being Gluten Intolerant. Why did my doctor after hearing my symptoms just say IBS, why didn't she mention the other possible things like gluten intolerance? Is it really that unknown to the world of medicine? If I went to a natural healer would they know more about it than a doctor because it is not cured with medicine, just with a diet change?

I have two relatives who have severe stomach problems, are bald (now wearing wigs) and were once obese and both have had a gastric bipass to lose weight. Could they just simply be suffering from Celiac Disease? They are my grandmother and aunt, and it is a genetic disease correct? I am not sure if I even have a gluten intolerance, but I am guessing I do, considering my symptoms and responses to my earlier post; but if I do my family might have it too right?

What are everyones thoughts? Why wasn't I informed of this by a doctor? I was informed by my mom who saw something on TV...

[HawkFire]

Because no celebrity with any real clout has stepped up to the plate to be an advocate. Celiac disease is not considered the stylish disease of the month to support with a ribbon or a walk. So pick up your banner, wave it proudly and do your part until some glamorous, over-paid, brain-dead fashionista decides it will propel her career to new heights if she goes on the Ellen show and talks about her celiac.

[AndreaB]

Doctors are trained that this is a rare disease and only look for classical symptoms.

[nikki-uk]

Doctors are trained that this is a rare disease and only look for classical symptoms.

...and that it is a childhood disease, and that you have to have profuse watery stools,and be severly underweight ..etc.. etc

I like to think that new med students aren't taught the same thing but yes ,docs have alot to learn about the signs and symptoms of celiac disease.

When you consider that roughly 1/100 people have celiac disease (not necessarily diagnosed) and that on average coeliacs have their symptoms for 10 yrs before they are diagnosed (if at all) you would think that the medics would sit up and take notice.

The trouble is the signs and symptoms can be so vague that they are often attributed to something else.

My husband had fatigue and weakness for many many years ,and was unable to put on weight no matter what. It wasn't until he had a 2 week spell of diarrhoea that the docs finally came up with celiac disease.

[Nantzie]

Hey! I used to be a medical transcriptionist too!! I had never heard of it either. And one of the places I used to type for was a general practitioner clinic connected to the local medical school. So yea, you can be in the medical admin support field and see all sorts of reports and journals and still never have heard of it. In fact, my best friend works for a major medical insurance company and had never heard of it. She has kept her eyes open for it since I found out I had it, and still hasn't seen it.

Here's my theory on why doctors don't know much about it.

Up until the late 1990's they thought it was a rare childhood condition with only the most classic symptoms (emaciation, chronic diarrhea, failure to thrive, etc.) In medical school they were told that they probably would see only one case of celiac disease in their entire careers.

Most doctors read their medical journals like we read our monthly magazines -- they read the article titles and read what looks interesting. I think a lot of the time they see "celiac" and just remember back to what they were told in medical school and don't bother to read the article. They might really mean to look through the journal again when they have time, just like we all do with our magazines, but then never get to it.

So unless a doctor is told directly about it somehow, he's not going to give it much of a thought.

The National Institutes of Health (part of the federal government) has actually launched an awareness campaign to educate doctors and other healthcare workers about celiac disease. Open Original Shared Link Before the public can be the focus of an awareness campaign, the doctors first have to be educated about it.

Almost every week here we see someone who is told by their doctor that they can't have celiac because they don't meet the classic presentation of it. That doesn't necessarily mean that the person has it, but it's hard to trust the opinion of someone who doesn't believe in the thing you're asking about. It would be like going to a fertility doctor and the doctor says that if you wish really hard you'll get pregnant. It's not that the doctor doesn't care, it's just that the doctor isn't informed. Right now a lot of people who hear about celiac don't hear about it from their doctor. They read about it in a magazine, or see something on TV. It's an odd thing for a doctor to hear, I'm sure, that your 40yo patient thinks they might have something that they heard Katie Couric talk about and it was a little girl who got sick when she ate bread. Huh?

So hopefully the NIH's awareness campaign is going to be successful.

A year ago, when I found out about celiac, I found out about it on my own (after reading an article). Most people here had the same experience. Then the basic pattern was talking to your regular doctor, convincing them to do the bloodwork, informing them what bloodwork to order, convincing them to refer you to a GI and waiting for the biopsy. It usually took 2-3 months to get through all of that, learning as much as we could on this board while we were waiting for testing. It's only been in the last couple months that we've started to see people come on here who have already gotten the diagnosis from their doctor, and were told (sometimes that day) to eat gluten-free for the rest of their lives. So I think the information is slowly being absorbed by the medical community.

It is genetic and if you've got it, relatives have something like a 20% (?) chance of developing it. Also remember that there are a lot of people on here (like myself) who don't have positive tests, but tried the gluten-free diet, with life-changing improvement. My symptoms were so bad, and included neurological changes that made it difficult and very painful to even walk. When I went gluten-free, it all went away like somebody flipped a switch. Officially I don't have celiac disease, but gluten intolerance. So even if your test results come back negative like mine did, try the diet and just see what happens.

Good luck with all of this, and welcome to the board.

Nancy

[Guest cassidy]

I am a drug rep and my "special" lunch usually comes up when I bring lunch to my doctors. I am shocked at how many of them don't know what it is. Most have heard of it but don't really know what it is, or know the classic symptoms. Almost all have said they have NEVER had a celiac patient in their practice of 20 or 30 or 40 years. It is really scary. Someone even called it a designer disease.

That being said, if and when a drug comes out to help us it will make a big difference. If a big drug company picks up the drug then there will be reps talking to doctors every day about celiac and people will start to be diagnosed left and right. There might be commericals and patients will start asking their doctors to be diagnosed. If they start hearing the word celiac then maybe they will start reading journal articles and doing some research and actually learning how to diagnose it.

It is has been crazy interacting with doctors. Sometimes I am shocked at how little they know and how wrong they have their information. I realize they are all human and being a doctor is just their job, but some of these people should not be practicing medicine. If you don't feel comfortable with your doctor, find another one because everyone did not graduate at the top of their class and some of them are clueless.

[Nantzie]

I am a drug rep and my "special" lunch usually comes up when I bring lunch to my doctors. I am shocked at how many of them don't know what it is. Most have heard of it but don't really know what it is, or know the classic symptoms. Almost all have said they have NEVER had a celiac patient in their practice of 20 or 30 or 40 years. It is really scary. Someone even called it a designer disease.

That being said, if and when a drug comes out to help us it will make a big difference. If a big drug company picks up the drug then there will be reps talking to doctors every day about celiac and people will start to be diagnosed left and right. There might be commericals and patients will start asking their doctors to be diagnosed. If they start hearing the word celiac then maybe they will start reading journal articles and doing some research and actually learning how to diagnose it.

It is has been crazy interacting with doctors. Sometimes I am shocked at how little they know and how wrong they have their information. I realize they are all human and being a doctor is just their job, but some of these people should not be practicing medicine. If you don't feel comfortable with your doctor, find another one because everyone did not graduate at the top of their class and some of them are clueless.

Amen!

[rez]

I totally agree w/ you. My husband has been in the pharmaceutical industry for the last 10 years and they are responsible for setting up continuing ed programs, lunches, talks, etc. They also bring in the latest and greatest studies. Unfortunately, there's no study on Celiac because there's no drug to treat it. Sadly, will there ever be a drug if everyone keeps thinking it's so rare.

[Fiddle-Faddle]

Do we really NEED a drug for celiac? Or do we just need there to be enough decent gluten-free options that we don't have to worry about what we're gonna eat if we forget to bring lunch to work?

Unfortunately, the pharmaceutical industry is more willing to spend $ on drug research, rather than publicity for a condition that is caused by a food that has been genetically changed over the years until many of us can't handle it.

[Lisa]

I am not as informative as the previous posts and I state this up front.

I also think that the reason for the lack of knowledge within the medical field (with the exception of those that study celiac/sprue), is that there is no money in a cure. I don't want to offend any one here. But, I feel that the medical arena has a domino effect. Research needs funding, funding comes from the pharm.(sp) industry. The industry aids and informs the medical community with new drugs for various ailments.

I many have this in all the wrong order. But there is no financial incentive in the cure, just strick diet change. Hence, no pill to cure.....as well as no incentive and we are lost in a world that won't generate monies for all.

Money makes the world go round

[Guest cassidy]

Do we really NEED a drug for celiac? Or do we just need there to be enough decent gluten-free options that we don't have to worry about what we're gonna eat if we forget to bring lunch to work?

Unfortunately, the pharmaceutical industry is more willing to spend $ on drug research, rather than publicity for a condition that is caused by a food that has been genetically changed over the years until many of us can't handle it.

I agree that we don't necessarily need a drug. I don't know what it would be like and I hesitate to take any medication, however, we need the pharmaceutical industry's money and manpower. Right now there isn't any money in celiac so I agree that is why it isn't being publicized. But when the drug companies can make billions on a drug they will make sure every doctor knows about the condition. If we can use that to help get more products and help people be diagnosed, then that will work for us.

A drug would be nice to help us not have to worry about cc. I would love to be able to eat in restaurants without being freaked out that I'm going to get sick. I also think it would help with the social aspects - we could accept more of those dinner invitations without being nervous.

[chrissy]

i only know of one other child in town that has celiac, besides my 3 girls. i asked our doc one day how many celiac patients he had besides my girls and the other little boy. he thought for a few seconds, and said they were his only patients with celiac. my girls were diagnosed because i did some detective work. the other little boy was diagnosed because he is diabetic and his diabetes doc ran a screen.

as far as a drug for celiac-----dr. fasano is working on that.

[Nantzie]

A drug would be nice to help us not have to worry about cc. I would love to be able to eat in restaurants without being freaked out that I'm going to get sick.

I really hope that somebody comes up with something someday. Just to be able to take the bun off the burger or not eat the bread on the plate or pick the croutons out of the salad. That would be heaven.

Nancy

[Canadian Karen]

I agree that we don't necessarily need a drug. I don't know what it would be like and I hesitate to take any medication, however, we need the pharmaceutical industry's money and manpower. Right now there isn't any money in celiac so I agree that is why it isn't being publicized. But when the drug companies can make billions on a drug they will make sure every doctor knows about the condition. If we can use that to help get more products and help people be diagnosed, then that will work for us.

A drug would be nice to help us not have to worry about cc. I would love to be able to eat in restaurants without being freaked out that I'm going to get sick. I also think it would help with the social aspects - we could accept more of those dinner invitations without being nervous.

This is exactly why I took the angle of trying to educate the insurance companies as to the effects and financial ramifications of celiac disease. If we wait for the pharmaceutical industry to do anything, we will be waiting a lifetime, but if the insurance industry clues into the amount of money they are losing to this disease, they just might be a strong enough voice to start the ball rolling on educating the medical community.......

Karen

[Lisa]

This is exactly why I took the angle of trying to educate the insurance companies as to the effects and financial ramifications of celiac disease. If we wait for the pharmaceutical industry to do anything, we will be waiting a lifetime, but if the insurance industry clues into the amount of money they are losing to this disease, they just might be a strong enough voice to start the ball rolling on educating the medical community.......

Karen

way to go!!! Candian and US health care are a world apart.

[PatBrown]

I was diagnosed by the doctor that did my endoscopy. He noticed that I was almost amenic(again) and that my liver enzymes were slightly elevated. I am so thankful. I knew about the liver enzymes and everything I read about it didnt sound good(although my reg. doctor wasnt worried about it). It was a phosphorous think: probably having to do with bone breakdown. Fortunately my dexa scan was good(probably because I drink tons of tea with lots of milk in it. I went to talk to a dietician at Bethesda but he wasnt a celiac specialist. I started reading everything I could online and found lots of info. Boards like this are wonderful for info. My bloodwork last month came back good.

[Canadian Karen]

I was diagnosed by the doctor that did my endoscopy. He noticed that I was almost amenic(again) and that my liver enzymes were slightly elevated. I am so thankful. I knew about the liver enzymes and everything I read about it didnt sound good(although my reg. doctor wasnt worried about it). It was a phosphorous think: probably having to do with bone breakdown. Fortunately my dexa scan was good(probably because I drink tons of tea with lots of milk in it. I went to talk to a dietician at Bethesda but he wasnt a celiac specialist. I started reading everything I could online and found lots of info. Boards like this are wonderful for info. My bloodwork last month came back good.

Hi Pat!

It's wonderful news that your bloodwork is going down! And you are right, it's boards like this that are educating us properly, cuz Heaven knows, if we had to depend on the medical community/dieticians, etc., we would be woefully lost!!! LOL!

Welcome!

Karen

[tarnalberry]

Because for many, many years it was misunderstood. There weren't good tests for it, the compliance rate was low, and it was thought to be something very different from what it really is. It's only in the last few years that this has been changing. Medical science can take a long time to change, particularly when there's not a lot of money in it driving the change.

[Guest nini]

One of the pediatric GI dr.s that is a founding member of our local R.O.C.K. chapter (Raising Our Celiac Kids) said that they really don't know that much about Celiac and are learning more about it from those of us who live with it. Now if only more Dr.s were open to actually listening to their patients...

[rez]

I am not as informative as the previous posts and I state this up front.

I also think that the reason for the lack of knowledge within the medical field (with the exception of those that study celiac/sprue), is that there is no money in a cure. I don't want to offend any one here. But, I feel that the medical arena has a domino effect. Research needs funding, funding comes from the pharm.(sp) industry. The industry aids and informs the medical community with new drugs for various ailments.

I many have this in all the wrong order. But there is no financial incentive in the cure, just strick diet change. Hence, no pill to cure.....as well as no incentive and we are lost in a world that won't generate monies for all.

Money makes the world go round

I agree and I think your reply was very well spoken. We can't point fingers and blame the drug companies who like you said need money for research and the money comes from the profits they expect their drugs to make. Also, for every drug that comes out, hundreds never do. Like we were both trying to state, a drug would just generate publicity and "talk" so people and doctors would be more aware of the disease. Also, I agree with the fact that it would be nice to have a "drug" so you didn't have to worry about cc.

My husband and I discuss this subject all the time. He is getting ready to launch a diabetic drug. 80% of type 2 diabetics are obese. People already have the cure for many of their ailments and THEY choose to take the drug instead. People would rather eat bacon cheeseburgers and take LIPITOR. The country is in a state of crisis when it comes to weight. It's scary. There's so much food to be had, and so cheap. My sister-in-law from England is shocked by all the overweight people here and by the amounts and portions of food available.

Anyway, what I'm trying to say is many people already have the power to cure their ailments, but it's not convenient or easy. Trust me, I'm not placing any judgement. I love to eat! I also exercise daily and try to eat in moderation, but it's those darn sweets that get me every time! I just think that's also why Celiac goes untreated. My doctor said I would have to take Prilosec forever. Are you kidding me?!? People and doctors are just covering up symptoms and not getting to the root of the problem.

[martz]

Hi, I am new here 'though been reading everything since March when diagnosed with Hashi's. Just wanted to say that it seems obvious to me why drug companies aren't interested. If gluten sensitivity can maifest with hundreds of symptoms (as seems the case) and let's say even 1% of the population suffers from it in some way (from mild to extreme), and each symptoms has maybe 10 drugs to treat it, that an awful lot of lost sales if diagnosis were ever to be 100%. What commercial entity would want to encourage that? In twenty or so years, you guys - moderators and contributors to this forum and others - will be the acknowledged pioneers in 'outing' this condition and certainly not the drug companies. But the internet (modern word-of-mouth) is a great deal more powerful than the established 'wisdom' as many an outdated and apathetic regime has found to its cost throughout history. So keep spreading the word and watch their power crumble.

[Canadian Karen]

Hi, I am new here 'though been reading everything since March when diagnosed with Hashi's. Just wanted to say that it seems obvious to me why drug companies aren't interested. If gluten sensitivity can maifest with hundreds of symptoms (as seems the case) and let's say even 1% of the population suffers from it in some way (from mild to extreme), and each symptoms has maybe 10 drugs to treat it, that an awful lot of lost sales if diagnosis were ever to be 100%. What commercial entity would want to encourage that? In twenty or so years, you guys - moderators and contributors to this forum and others - will be the acknowledged pioneers in 'outing' this condition and certainly not the drug companies. But the internet (modern word-of-mouth) is a great deal more powerful than the established 'wisdom' as many an outdated and apathetic regime has found to its cost throughout history. So keep spreading the word and watch their power crumble.

Amen to that!

Welcome!

Karen

[Fiddle-Faddle]

Hi, I am new here 'though been reading everything since March when diagnosed with Hashi's. Just wanted to say that it seems obvious to me why drug companies aren't interested. If gluten sensitivity can maifest with hundreds of symptoms (as seems the case) and let's say even 1% of the population suffers from it in some way (from mild to extreme), and each symptoms has maybe 10 drugs to treat it, that an awful lot of lost sales if diagnosis were ever to be 100%. What commercial entity would want to encourage that? In twenty or so years, you guys - moderators and contributors to this forum and others - will be the acknowledged pioneers in 'outing' this condition and certainly not the drug companies. But the internet (modern word-of-mouth) is a great deal more powerful than the established 'wisdom' as many an outdated and apathetic regime has found to its cost throughout history. So keep spreading the word and watch their power crumble.

WELL SAID!!!!!!!!!

[sillyyak]

I also think it is unknown because doctors dont look at celiac as a possible explanation for the symptoms. I had osteopenia 11 years ago and was diagnosed with that by my endocrinologist who said osteopenia could be caused by the thyroid medication I was taken and when it came up that I was osteopenic decided that the synthroid was the reason for that. 11 years later when I almost died from malnutrition (they gave me 1 week to live), not a single doctor in the hospital (a major teaching one at that!) put 2 + 2 together to even ask the question "why does she have osteopenia at such a young age?". Osteopenia was in fact the only "real clue" they had. It makes you wonder who are the crazy ones - the patients or the doctors!

[par18]

My friends mother is a medical transcriptionist, so she writes down all the medical records for the hospital and has never heard of Celiac Disease or being Gluten Intolerant. Why did my doctor after hearing my symptoms just say IBS, why didn't she mention the other possible things like gluten intolerance? Is it really that unknown to the world of medicine? If I went to a natural healer would they know more about it than a doctor because it is not cured with medicine, just with a diet change?

I have two relatives who have severe stomach problems, are bald (now wearing wigs) and were once obese and both have had a gastric bipass to lose weight. Could they just simply be suffering from Celiac Disease? They are my grandmother and aunt, and it is a genetic disease correct? I am not sure if I even have a gluten intolerance, but I am guessing I do, considering my symptoms and responses to my earlier post; but if I do my family might have it too right?

What are everyones thoughts? Why wasn't I informed of this by a doctor? I was informed by my mom who saw something on TV...

Wow I read a lot of the replies. Here is my take on the responses. As far as the money goes I see a lot of unnecessary testing in families in which at least one member has already been diagnosed. The most logical step in which more than one person has symptoms in a family is everyone try the diet for a short time and see what happens. I doubt this really happens very often. The second thing about testing is doctors and/or patients insisting on doing the same tests (blood/biopsy) over and over and over again before finally settling on the diet. This is a money maker with the medical profession until the insurance will no longer pay and then it is time for the diet. This is where we fail with the insurance companies. Right now insurance does not want to pay for family member testing because they see it as unnecessay or just random instead of what it really is and that is "preventive medicine". The other thing about insurance companies is they probably don't see the average celiac that is compliant on the diet as a healthy person (wrong again). They see it (positive diagnosis) as a means to raise rates and/or cancel altogether. If going on the diet were not as successful as I think it is I would be more interested in a drug but my take is that I would not use any drug as long as the diet continues to work. My position is that what I need more than anything else are more safe dining out options. This is probably going to take more time although I feel a lot has been done in the 18 months I have been on the diet. The CBS News segment a few weeks ago about the New Jersey family in which all members had different symptoms but treated them with the same diet should have opened up the eyes of both the medical profession and insurance companies but I doubt it did. It was probably viewed as lost revenue rather than intelligent thinking by the family. This is what I think we are up against. Being compliant on the diet and setting a positive example is about the most effective thing we can do. If we could possibly find someone in congress that we could trust to deliver the truth about what it is we do would probalby be a good step in the right diredtion. Sorry about rambling on so much.

Tom