Why Get A Biopsy?

[Mayflowers]

I've worked around doctors for 20 years so I'm not easily intimidated by them. I would have been forced to have a risky cardiac catheterization if I didn't question their diagnosis, and found out the cardiologists I was sent to was only out to make money. I'm sorry. Medicine is a business. I found out from another doctor that there was NOTHING wrong with me.

Why are people still getting biopsies? They're risky, it's surgery, and inconclusive. Why would you put yourself through that when you can just have Enterolab do a noninvasive stool test? Are you just looking for a diagnosis of Celiac? Celiac's can't get insurance. I trust Enterolab (though I was in denial the first day I admit, I mean who wants to give up wheat?).

I would just like to ask the people who are back to eating gluton, destroying their intestines and immune system JUST so they can have a surgical procedure to tell them they're a celiac? I fail to see the logic here. Someone please explain it to me.

Please don't let doctors make money off of you. I don't wish to anger anyone. I just felt I have to tell you what I know. I work in a Medical school. Surgical tests make a lot of money for a doctor.

Diana

[jayhawkmom]

Hello! I've wondered about this too. I am now gluten-free, along with my daughter and my son.... and I'm scheduled to see a GI on the 22nd. If he tells me that I have to start consuming gluten again in order to have a biopsy, I'm going to tell him that I'd really rather not eat it. Honestly, I know how it makes me feel... my blood test results were questionable - and I'm having a positive dietary response. I really don't want to go through the difficulty of eating "poison" again in order to prep for the procedure.

I know that a lot of people might disagree with me, and feel that it's necessary. But, really... I'm 36 years old and very much in charge of my own diet. I don't need a diagnosis of anything to be gluten-free.

I did, however, put my daughter thru the biopsy and I'm glad I did. It revealed ulcers that would not have been discovered any other way. Her stomach pain was just SOOOOOO terrible, and her blood test results were very questionable, so we went ahead with it. We got our answers.... and will move on.

[Mayflowers]

Hi

Thanks for the response. I was wondering...If your daughter was celiac, or intolerant, and you suspected and or the doctor suspected damage. Would just going gluten free heal her intestinal damage (ulcers) without an invasive procedure? Unless of course maybe you were completely in the dark about gluten intolerance at the time and didn't know what to do. That's understandable.

[VydorScope]

I think (as was the case in my case) most ppl get the endoscopey to check for OTHER issues in addtion to celiac disease. I personaly always recomend that if s person is ONLY checking for celiac disease that they skip the bisopy. It is an outdated test that gives no addtional information over a simple blood test and/or diet challenge but adds a level of risk. It is still considered the "gold standard" here in America, but not world wide as ppl are slowly moving off that standard....

[happygirl]

please define "can't get insurance." Personal health insurance or insurance through, say, a company or the government (i.e., through your job).

[jayhawkmom]

Unless of course maybe you were completely in the dark about gluten intolerance at the time and didn't know what to do. That's understandable.

Ummm, that's pretty much the boat we were in. My daughter had been pretty sick for a while... with no "real or obvious" reasons. When the blood tests came back (negative as far as our allergist was concerned) I went ahead and scheduled the appointment with the GI. Little did I know that her bt results were NOT anywhere near as negative as the allergist said they were.

In fact, the GI said that her bt results were VERY suspect - and he wanted to do the endoscopy to verify his suspicions. I was still very much new to the whole concept and wasn't sure what was going on.

In the short time SINCE her endoscopy, I've learned SOOOOOOOOOOOOOOOOOO much!! I'm glad we had it done for her..... but I won't put my other children, or myself, throught that.

Unless of course, like Vydorscope suggests...they are looking for something "other" than Celiac. But, if Celiac is the main suspicion and they are just looking for villi damage... no thanks.

With regards to insurance.... I've read about people being denied life insurance due to a Celiac diagnosis. Or, making personal health insurance unattainable to do the financial aspects and added costs due to a Celiac diagnosis.

[BostonCeliac]

I understand what you're saying, and I'm questioning my biopsy at this point due to what you are saying -- but 4 different doctors have recommended the biopsy to be ABSOLUTELY sure, and to make sure it's not something else....

It's hard to ignore 4 doctors (and trust people I don't know online) & as much as I research online, there isn't much conclusive evidence to go either way... so what to do? Also -- regarding the endo, my insurance covers it, and I already pay an arm & leg for it - so they might as well pay for this procedure...

Again, the majority of things i have read/seen/heard recommend the endo... that is why I'm doing it.

If you can give me any research you have, that would be great -- may call my GI doc to discuss this..

Thanks!

[Guest nini]

I've wondered the same thing myself. I think the biopsy as the gold standard is archaic and outdated and it misses entirely too many early stage (or even late stage) celiacs and doesn't account for non celiac, gluten intolerance. Personally I didn't do it, my Dr. said I didn't need to since my blood tests were highly conclusive, and I wouldn't put my daughter through that at all. Not when she responded so magnificently to the diet.

I can understand if they are looking for other things, but if only suspecting Celiac, then no, don't do it... it's a waste of time and money and entirely too risky IMHO.

As far as insurance goes, even without the biopsy, my dx was Celiac based on my blood tests, and when my previous employer stopped carrying insurance for his employees and I had to get other insurance, I was denied covereage by several companies. I ended up having to pay more money to get insurance through the same company I had previously been insured by, only instead of a group policy I now had to have a individual policy.

I would think most group policies have to accept members regardless of pre existing conditions, but if you have to get individual coverage, therein lies the problem. You have to disclose medical history and they do check it and they can deny coverage or attach a waiver to not cover anything Celiac related.

[VydorScope]

It's hard to ignore 4 doctors (and trust people I don't know online) & as much as I research online, there isn't much conclusive evidence to go either way... so what to do? Also -- regarding the endo, my insurance covers it, and I already pay an arm & leg for it - so they might as well pay for this procedure...

Again, the majority of things i have read/seen/heard recommend the endo... that is why I'm doing it.

If you can give me any research you have, that would be great -- may call my GI doc to discuss this..

Thanks!

How about a little logic then?

This post may sound picky, but in the day and age we live in, everyone realy kind of needs to understand this. A bisopy for celiac disease can never be negative, and can never disprove celiac disease. Let me explain...

Do you have some dice? Pick up one, assuming its a fiar 6 sided die, role it couple of times. Your goal is to get as many 1 or 2's as you can. Roll it say 5 times. I got 4,3,6,3,5 . In 5 rolls I did not score a single 1 or a 2. If I roll enough times I should evenutally get a 1 or a 2, but theres no mathmaticly way to define enough, with precison. Took me THREE sets of 5 rolls to get my first 1 or 2, it was a one actully. So what does that have to do with celiac disease? Easy...

When they do a bisopy for celiac disease they take a random part of your small intestin and check it to see if there is evidence. Most docs will take 4 or 5 samples. If say 1/3rd (pretty advanced case of celiac disease) of your instenice is damaged, then finding damage is the same as rolling a 1 or a 2 on a 6 sided die. The more rolls you make, the better your chances of getting a 1 or a 2, but you literly could roll a million times and never get a 1 or a 2, or you might roll 5 1's in a row. In my example, it would take THREE endoscopy's to diag celiac disease successfully.

You see, the english term "negative" in this use REALY means "not postive". That sounds picky, but its an important fact.

So what does that mean for any of us? Just this, the biopsy is only conclusive IF IT IS POSTIVE. Anything else is not conclusive, just merely non-postive.

Stop think about it... get a bisopy and iut has 2 possible outcomes..

1) Postive - Congrats you just went through a invasive medical procedure to discover what you can find out by a simple and safe dietary challange at home...

2) NON-Postive aka Negative - Congrats you just went through a invasive medical procedure to discover ABSOLUTLY NOTHING! you will in most cases now be told to try the diet challenge....

NOTE: I am not a doctor, nor do I play one on the internet, but one of my degrees is in statisitics, so I do have a better then average understanding of testing methodogly, but claim no medical expertise of any kind.

[gfp]

I understand what you're saying, and I'm questioning my biopsy at this point due to what you are saying -- but 4 different doctors have recommended the biopsy to be ABSOLUTELY sure, and to make sure it's not something else....

It's hard to ignore 4 doctors (and trust people I don't know online) & as much as I research online, there isn't much conclusive evidence to go either way... so what to do? Also -- regarding the endo, my insurance covers it, and I already pay an arm & leg for it - so they might as well pay for this procedure...

Again, the majority of things i have read/seen/heard recommend the endo... that is why I'm doing it.

If you can give me any research you have, that would be great -- may call my GI doc to discuss this..

Thanks!

You can start here:

Open Original Shared Link

This hows why biopsy is ineffective as a diagnostic

Open Original Shared Link

[Chelle15]

My answer to this question is:

I came back with positive blood work, but I was positive on the very unspecific markers. The doctor I am seeing does not believe I have it. I must have a confirmed diagnosis for my peace of mind. I have gone years and years with these symptoms and have gotten used to people and doctors telling me that nothing it wrong. I have come to see myself as a hypocondriac(sp?). I really dont' think I am, but I would feel so much better if someone could say here is the scientific evidence that something is wrong and that it has not been in my head for all of these years. If it comes back negative I will probably still try the gluten free diet, but I don't have $ to be throwing around on an expensive diet if it is not what is causing my problems. I want a biopsy for myself. I want to know.

[VydorScope]

My answer to this question is:

I came back with positive blood work, but I was positive on the very unspecific markers. The doctor I am seeing does not believe I have it. I must have a confirmed diagnosis for my peace of mind. I have gone years and years with these symptoms and have gotten used to people and doctors telling me that nothing it wrong. I have come to see myself as a hypocondriac(sp?). I really dont' think I am, but I would feel so much better if someone could say here is the scientific evidence that something is wrong and that it has not been in my head for all of these years. If it comes back negative I will probably still try the gluten free diet, but I don't have $ to be throwing around on an expensive diet if it is not what is causing my problems. I want a biopsy for myself. I want to know.

And if it comes back non-postive? You still wont know. You do what you think is best for you, but I just want to make sure you understand that its FAR from a sure thing, and far from a definitive answer.

[Chelle15]

And if it comes back non-postive? You still wont know. You do what you think is best for you, but I just want to make sure you understand that its FAR from a sure thing, and far from a definitive answer.

Yeah I understand, I am willing to risk it for a positive. In addition, I am getting a colonoscopy to check for all other possible causes of my problems. If I find out it is "IBS" (they don't know what it is) I will try everything I can to help myself (including a gluten free diet). But I must rule out anything and everything else I can. Again, for my own peace of mind.

[VydorScope]

Yeah I understand, I am willing to risk it for a positive. In addition, I am getting a colonoscopy to check for all other possible causes of my problems. If I find out it is "IBS" (they don't know what it is) I will try everything I can to help myself (including a gluten free diet). But I must rule out anything and everything else I can. Again, for my own peace of mind.

I have had 2 endoscopes and 1 colonoscopy for the same reason, if they are looking for things IN ADDTION to celiac disease, then it makes perfect sense to get the biosopy while your there.

[Chelle15]

I have had 2 endoscopes and 1 colonoscopy for the same reason, if they are looking for things IN ADDTION to celiac disease, then it makes perfect sense to get the biosopy while your there.

Yeah, might as well. I had a small bought(sp?) w/ a lot of blood in my stool, so it is worth it to me and Crohns runs in the family. It is just very worth it to me.

[Michi8]

I'm having an endoscopy to invesitgate what the problem is. Celiac is one suspected diagnosis. My blood work came back negative, so we've decided that further investigation is warranted based on my symptoms. After the test is done, I will be trying the diet regardless of the result. If it is positive, though, I would like to know for my own peace of mind, to know if it's worth testing my kids, and to encourage symptomatic family members to test as well.

Because I live in Canada, I have no risk of losing my health coverage and the test is not costing me out of pocket, but I do stand to gain a least a bit of help to finance the diet...and that tax write off is only allowed with a medical diagnosis of Celiac.

Besides, biopsies are far from the only way medical practioners make money off of patients. There are all sorts of unnecessary procedures, drugs, diets that make the medical establishment money. Personally, I think the high c-section rate (a good percentage of which are unnecessary) in North America is a bigger issue than the number of biopsies done to test for Celiac.

Michelle

[lindalee]

And if it comes back non-postive? You still wont know. You do what you think is best for you, but I just want to make sure you understand that its FAR from a sure thing, and far from a definitive answer.

Thank you for all this info. I was diagnosed as a baby as celiac don't ask me how as I don't have any records from John Hopkins and my mother has passed away. I have wondered about the vili, etc. since she was told I only had to be on the diet 2 years.

I realized in Feb it must be celiac back. I think my brother may have it. He is going in the hospital next Fri. to get a polp removed off his vocal chords, what do you think would be the best way for him to see if he has it? Thanks, LL

[VydorScope]

Thank you for all this info. I was diagnosed as a baby as celiac don't ask me how as I don't have any records from John Hopkins and my mother has passed away. I have wondered about the vili, etc. since she was told I only had to be on the diet 2 years.

I realized in Feb it must be celiac back. I think my brother may have it. He is going in the hospital next Fri. to get a polp removed off his vocal chords, what do you think would be the best way for him to see if he has it? Thanks, LL

WEll does he have symptons? Do they seem at all to be related to food? Is he presently eating gluten, in decent quanties daily? If yes then I would say teh full blood test is a good place to start, takes like 5 mins in the office. Once htey have drawn the blood and sent it off, try the gluten-free diet, and be ectremly strict, no mistakes at all for a while and see if symptons improve. If they do then reintroduce gluten and see if htey come back if htey do , and/or the blood test is postive, then you can be sure he has celiac disease.

Thats my adivce, but I am not a doctor and I want to be clear on that.

[lindalee]

WEll does he have symptons? Do they seem at all to be related to food? Is he presently eating gluten, in decent quanties daily? If yes then I would say teh full blood test is a good place to start, takes like 5 mins in the office. Once htey have drawn the blood and sent it off, try the gluten-free diet, and be ectremly strict, no mistakes at all for a while and see if symptons improve. If they do then reintroduce gluten and see if htey come back if htey do , and/or the blood test is postive, then you can be sure he has celiac disease.

Thats my adivce, but I am not a doctor and I want to be clear on that.

Thanks, I know. He eats alot of gluten. Bread, etc. Has some symptoms. If the dr. says he is he will stop it. Thanks again, LL

[2kids4me]

I think the choice of biopsy / no biopsy should be made on an individual basis. If a patient has GI symptoms and blood work is inconclusive then the point of the endoscopy is to have look at the small intestine, biopsy several sites and go from there.

In our family, we chose the biopsy - the GI explained his reasons and the endocrinologist also recommended it. Why? Because the initial blood work was borderline, daughter had other autoimmune disease (as did brother) and it was important for the management of co-morbid conditions to confirm celiac. Six biopsies were taken on the daughter, 4 on our son because it was evident on visual that the villi were flat - son had heartburn and a biopsy was taken from the area near the esophagus to rule out acid reflux damage or a secondary issue causing heartburn.

In someone with no other conditions, positive bloodwork, and favorable response to diet - then a biopsy would not be necessary (IMHO).

Informed choice/consent and individual case by case assessment should be the rule. We have a very knowledgable GI dcotor who is on the board for the Canadian celiac association. The biopsy was explained and the choice was ours.

(EDIT- add on) There are number of conditions that could cause similar symptoms to celiac, especially considering the wide range of symptoms. In babies or young children, inborn errors of metabolism and genetic condition have to be ruled out. A child in our town had failure to thrive and many symptoms that could have been celiac - turned out he had rare inborn error of metabolism called cystinosis.

That is why individual cases have to be treated individually and I dont think anyone can make a blanket rule about what tests should or should not be done.... but doctors should be willing to listen to the patient or the patient's parent and address concerns and work with the family. That is the hard part - finding a doctor like that.

[2kids4me]

I just wish more doctors would be up front and explain that a negative biopsy result doesn´t automatically mean you don´t have coeliac. Also, i think someone else mentioned that a biopsy doesn´t show gluten intolerance.

Absolutely agree! The Gi doctor even told us, if the biopsy is negative and the daughter felt better off gluten, he would make sure the dietcian sat down with me and that I still join the celiac association for support.

[penguin]

My answer to this question is:

I came back with positive blood work, but I was positive on the very unspecific markers. The doctor I am seeing does not believe I have it. I must have a confirmed diagnosis for my peace of mind. I have gone years and years with these symptoms and have gotten used to people and doctors telling me that nothing it wrong. I have come to see myself as a hypocondriac(sp?). I really dont' think I am, but I would feel so much better if someone could say here is the scientific evidence that something is wrong and that it has not been in my head for all of these years. If it comes back negative I will probably still try the gluten free diet, but I don't have $ to be throwing around on an expensive diet if it is not what is causing my problems. I want a biopsy for myself. I want to know.

Ditto. I had inconclusive bloodwork too, and I already know the gluten-free diet helps me, but I need to know that I did every test possible to know that's what I had, or I'd always doubt it. None of my doctors think I should be eating gluten, but I want to see what kind of damage, if any, there is. I'm lucky to have a fabulous primary doc, and a fabulous GI doc. He said that even if the biopsy is non-positive, they could have missed the damage because either it's further down the intestine, or none of the 8 or so grabs they made caught patchy damage. Either way it's gluten-free for me after the biopsy. I have to do it for me. I'll tell you all about it monday

[2kids4me]

That´s the sort of doctors we need - can he be cloned?

I hope so - he's at a teaching hospital (a Childrens' hosp) and educates every resident that comes in... bonus is that he has a wonderful way with children, very patient and talks in their terms. It was kinda neat really - when the diagnosis was confirmed.... he sat down right across from Kathryn and talked to her about everything - saying " Now your mom can listen in, but this is about you - so I want to answer any questions you have about this and explain it to you" ........then he looked at me and said: "Mom, if you have any questions, I'll be happy to answer them too - AFTER I speak to Kathryn." That's why I love the GI doc!

[eKatherine]

Ditto. I had inconclusive bloodwork too, and I already know the gluten-free diet helps me, but I need to know that I did every test possible to know that's what I had, or I'd always doubt it.

Does this mean that if it comes back non-positive that you will still have doubts?

[penguin]

Does this mean that if it comes back non-positive that you will still have doubts?

Nope.