Doctor Shocked At My Refusal For Biopsy

[foodiegurl]

I was told by my GP's nurse that I tested positive for Celiac 2 weeks ago, so this past Friday, I met with a GI Dr. Basically, I paid him my co-pay to be told what I already knew. And then he told me I *need* to have a biopsy, even though all the blood work was positive (I need to ask for exact numbers, but I know that all tests were positive - though he said they were "mild"). I told him, I really didn't want the biopsy. He asked why. I said, because I felt it was invasive, and not even 100% accurate, so I didn't see the point.

He went on to tell me, and I quote, "It is the gold standard..." I still said, that at this time, I would rather do a gluten-free diet (even though I don't really have any symptoms to begin with). Finally, we agreed, I would do that and come back in a month or 2.

I asked him if other people refuse the biopsy, and he told me no, I was the first one. I have a difficult time believing this.

What really got me though, was when I would ask him questions about Celiac, he would respond that he can't really answer anything "until I have the biopsy"...even general questions about the disease. I was so annoyed.

And then he goes on to tell me how since I am a vegetarian, I am going to have a really tough time, and walks out the door. Oh gee, thanks Dr...way to give me confidence and be supportive. Personally, I am pretty proud of the fact that I am a vegetarian (who occasionally eats fish, so really a pescatarian if you want to get technical =)

Anyway..has anyone else experiences this...a Dr who basically doesn't want much to do with you until you get the biopsy so you can become a bona-fide statistic??

I am just outside of Chicago, and moving back into the city this year. I know University of Chicago has good Celiac Drs, so I was thinking maybe I will find one here, but then I am thinking..they may not want anything to do with me either, until I agree to the biopsy

[rinne]

Some doctors are fine with the blood test and diet as diagnostic tools, perhaps there is even someone on this board that knows of someone in your area.

As for their "gold standard".

Trust yourself.

[Sweetfudge]

I've known people with the opposite problem, where their Dr doesn't think they need the biopsy, and they do. It's kind of funny how some Dr's think their word is gold, and we should all take it for law. That bugs me! I think you need to do what you feel is best. Getting a second opinion is always good as well. Not all Dr's think alike.

[mindiloo]

i didn't want to get the biopsy either for the same reasons and I told my doctor that, he was nice about it but told me that i had to get one because my blood work levels were so high (200 when normal is 3). his main reason for having me get the biopsy was to make sure there was nothing else wrong, like stomach ulcers created by the celiac, and that's the only reason i agreed. if he doesnt think there's anything wrong other than the celiac i don't see any harm in not getting the biopsy and just going on the diet.

i was really nervous before the procedure but it wasn't as bad as i thought it would be. they gave me an IV which knocked me out pretty quickly, then next thing I knew i was in the recovery room and they gave me fruit, juice, and peanut butter. i was drugged up for the next few hours which my roommates found hilarious, but my throat didnt even hurt or anything. they let me keep some pictures of my stomach and intestine too.

[MaryJones2]

False negatives on the bloodwork are pretty common. False positives aren't. If your bloodwork was positive then that is a formal diagnosis. I don't know that I would pursue a biopsy either unless there is concern that something else is going on too. Perhaps your new GI just wanted to make sure he was being thorough but that doesn't excuse his vegetarian comment. There are many gluten-free vegetarians (myself included) who aren't starving

[ciaorio]

My mom's a doctor (pathologist, not gasteroenterologist) and is really *very* opposed to any kind of surgery unless absolutely necessary. As a result I was on the fence about the biopsy, but my Celiac doctor was strongly urging me to get the biopsy, and seemed to have a singular focus on it. I questioned him extensively about the benefits of knowing definitively whether I had Celiac Disease (it was very obvious I had a gluten intolerance).

What I gleaned from him was the following....

- If you go on a gluten-free diet and continue to have long-term problems, knowing you have Celiac (thru biopsy) as opposed to Intolerance can inform a doctor's treatment going forward.

- Getting the biopsy helps the doctor assess the degree of damage to the intestine, which can also inform a doctor's recommendations on how to best recover.

- You can always have a biopsy in the future, anytime. It does however require going on gluten for a few weeks (suggested 6 weeks) beforehand.

My take away....

Since I very clearly had a negative reaction to gluten (I've played enough with my diet to figure this one out), I was going to have to go on a gluten-free diet regardless of whether or not I did the biopsy. My decision is to see how well I respond to the gluten-free diet, and if after a few months or a year, if I'm not sufficiently recovered, to revisit the biopsy option with my doctor. Needless to say my mom's very happy with this decision.

I have to say I was really surprised by the way my doctor handled the issue of the biopsy. I just got the sense that everyone pretty much goes with whatever he says, and few really question him or push back. He's not used to and does not appreciate patients who educate themselves on the issues and think for themselves. This is just one doctor, but perhaps he's indicative of the others out there.

[Fiddle-Faddle]

- If you go on a gluten-free diet and continue to have long-term problems, knowing you have Celiac (thru biopsy) as opposed to Intolerance can inform a doctor's treatment going forward.

The problem with this line of thought is that there are some people, perhaps quite a lot (some people think all with gluten problems) who are diagnosed as having "just gluten intolerance" who actually have early stage celiac, but do not YET have enough villi damage to be seen in an endoscopy. Keep in mind that the endoscopy/biopsy was considered the "gold standard" of diagnosis 50 years ago--long before the blood work used today was developed. Also keep in mind that, with 22 feet of intestines, patchy villi damage, and only a few 1/4 inch samples taken (out of 22 FEET!), there are obviously going to be false negatives.

So that group of people could very well end up being "mishandled" by well-meaning doctors who think that those patients have "just" gluten intolerance. Also , those patients could come away with the misunderstanding that it's okay to cheat because they have "just" gluten intolerance.

[Beloved]

I have not had a biopsy, I went straight from the anti-body test to the diet. I never wanted one, I know when I eat gluten I feel sick as a dog, and when I don't I get better. It seems stupid to risk getting fired from my job by taking off a week because I'm so sick from force feeding myself gluten just so my doctor can confirm for his own satisfaction what I already know.

I am going to a GI appointment on Tuesday, but that is just a consultation because I am concerned about what complications celiac can cause. I have no plans to eat gluten on purpose for a challenge or anything, and if they ask me again I will refuse again. It just seems incredibly stupid considering how high the failure rate of their "gold" standard is, and plus, some ppl get diagnosed as celiac even with negative biopsies because nothing else fits them, so why should I?

Now, I mean, if the doctor is concerned I might be growing a tumor in my intestines, then I have no problem with them taking a look. But if I'm not complaining or having problems then don't bother me with stuff that will just cause me loads of stress, I already have anxiety issues, you know? lol

On a side note: Does anyone know if they do an endoscopy or a colonoscopy for a biopsy? Just wondering.

[foodiegurl]

On a side note: Does anyone know if they do an endoscopy or a colonoscopy for a biopsy? Just wondering.

gosh, i am pretty sure it is endoscopy, that is what my GI dr said. eeks, a colonoscopy would have me even more stressed. like you i already have major anxiety issues, and this is not one i need to take on if i don't need to.

[jerseyangel]

On a side note: Does anyone know if they do an endoscopy or a colonoscopy for a biopsy? Just wondering.

To check for Celiac Disease, they take samples from the small intestine during an endoscopy.

[ravenwoodglass]

I have not had a biopsy, I went straight from the anti-body test to the diet. I never wanted one, I know when I eat gluten I feel sick as a dog, and when I don't I get better. It seems stupid to risk getting fired from my job by taking off a week because I'm so sick from force feeding myself gluten just so my doctor can confirm for his own satisfaction what I already know.

I am going to a GI appointment on Tuesday, but that is just a consultation because I am concerned about what complications celiac can cause. I have no plans to eat gluten on purpose for a challenge or anything, and if they ask me again I will refuse again. It just seems incredibly stupid considering how high the failure rate of their "gold" standard is, and plus, some ppl get diagnosed as celiac even with negative biopsies because nothing else fits them, so why should I?

Now, I mean, if the doctor is concerned I might be growing a tumor in my intestines, then I have no problem with them taking a look. But if I'm not complaining or having problems then don't bother me with stuff that will just cause me loads of stress, I already have anxiety issues, you know? lol

On a side note: Does anyone know if they do an endoscopy or a colonoscopy for a biopsy? Just wondering.

Don't be surprised if he wants to scope both ends. If this is case you could always tell him that if a couple months on the diet doesn't help that you will be back. We can have other conditions going on other than just celiac disease and if relief isn't found soon with the diet do keep looking for any other issues that may be present.

[Firegirl43]

I was told it was totally my decision. I did not have to have one. So I didnt. All of my other test results showed very strongly that I was a celiac. I felt better on the diet.So the gastro doc said me not haveing one was ok. But if I didnt get better then I had to get one

[kitty kermit]

Wow this is interesting. I tested positive to iga and some other flag a month ago. My GP referred me to hospital. Saw a moody registrar on friday last week after 2 hr + wait. She wasn;t interested in me or my history -just kept saying you must have an endo "gold standard" blah blah. When I then said well what else could the flag on the blood test indicate then she admitted there's nothing else that it could indicate so I said I didn't fancy the endo. She then ranted that the primary care trust and her wouldn't pay / treat me unless i had the endo too!

All very harsh and odd. I'd been reducing gluten in my diet (and had done 2 yrs ago) and felt much better. SO I'm sure I have celiac. But i have bowed to pressure and have the endo booked in this thurs and am a bit nervous - but as my mum and dad have had it with sedation too and seemed to find it ok am hoping it will be the same.

Amazing to hear that some Drs are ok with not having it. And sad to see how harsh they are in talking to us!

Like we're 2nd class citizen's and it's all in our minds until they do biopsys.

Madness.

K

[krystal]

So that group of people could very well end up being "mishandled" by well-meaning doctors who think that those patients have "just" gluten intolerance. Also , those patients could come away with the misunderstanding that it's okay to cheat because they have "just" gluten intolerance.

I was worried about not having a diagnosis and the cheat-factor. I finally decided that if I didn't pursue the diagnosis, I had to proceed like I had received a positive diagnosis. Anything else would be risky to my health. I may not have passed the "gold standard" test if I had done the test, but this way I feel better and am ensuring I am being responsible in dealing with my health.

Wow this is interesting. I tested positive to iga and some other flag a month ago. My GP referred me to hospital. Saw a moody registrar on friday last week after 2 hr + wait. She wasn;t interested in me or my history -just kept saying you must have an endo "gold standard" blah blah. When I then said well what else could the flag on the blood test indicate then she admitted there's nothing else that it could indicate so I said I didn't fancy the endo. She then ranted that the primary care trust and her wouldn't pay / treat me unless i had the endo too!

All very harsh and odd. I'd been reducing gluten in my diet (and had done 2 yrs ago) and felt much better. SO I'm sure I have celiac. But i have bowed to pressure and have the endo booked in this thurs and am a bit nervous - but as my mum and dad have had it with sedation too and seemed to find it ok am hoping it will be the same.

Amazing to hear that some Drs are ok with not having it. And sad to see how harsh they are in talking to us!

Like we're 2nd class citizen's and it's all in our minds until they do biopsys.

Madness.

K

Most of my doctors just called me crazy and refused to do any tests because I didn't have D.

[pixiegirl]

First of all I think I might start looking for a new doctor, regardless of your decision about getting scoped. For a doctor to be so dismissive and such, not good.

I didn't have a biopsy at first. I had a dna test, mild blood test and the diet helped me immediately. However, some years later I was still having very minor GI issues... I was 99% better but not entirely. So I go to see a GI doctor and they recommend scoping both ends, which I did. I'm glad I did.

First off I'm older so this counted as my first colonoscopy and when they went in they took biopsies and found out I had another potentially serious issue, eosinophilic gastroenteritis. I had 8 raw open sores in my stomach and also some in my intestines.

The good news was there were no signs of Celiac so I was managing that well.

Now I'm treating the EG issues and I'm feeling a lot better.

So maybe my advice would be, try the diet for a few months, get another blood test to see how your doing and if you're having any GI issues after being totally gluten-free for a while then I'd consider the scoping.

Just so you know, mine were easy, actually the worst part was that ghastly stuff you drink to clean yourself out, tastes terrible. But I was completely out for the scoping and was fine about an hour after, I went home and did laundry.

Susan

[watssup1]

There are different kinds of celiac disease. There is Celiac Sprue and Refractory Sprue. You should have the EGD so that the doctor can take a biopsy of the small intestine. You will also have to have a follow up biopsy 6 months after you begin the diet to make sure that the diet is working. They can tell my the "finger like" villi in your small intestine. This procedure is a piece of cake and there is no prep.

[spikerrr]

I was diagnosed because of my DH. My doctor insisted on an egd even though I had been gluten free for 2 months because he said other digestive system problems could result from the celiac disease.The biopsies showed extensive damage.He also found Class 3 erosive esophagitis and several ulcers. For me the EGD was worth it and it is not a big deal.I had a colonoscopy at age 38 because I was having problems (I had not been diagnosed with celiac yet) and they found 10 polyps several pre-cancerous so dont think they just want your money.You may have other problems as a result of the celiac disease.I dont know how long Ive had celiac but I was well on my way to esophagas cancer and colon cancer.Just something to consider.

[ering917]

I had a similar experience with getting my son's diagnosis. That same term, "the gold standard" was used. I felt like they were trying to sell me a luxury car, as opposed to an invasive procedure during which my 4 year old would be put under general anesthesia - scary! The doctor was also rude, and blew me off when I asked questions. She had no interest in discussing other options.

We had a second blood test done, as well as a genetic test, and a second opinion from a different pediatric GI. the general consensus was that all tests pointed to celiac, the only way we could know for sure would be to do the biopsy, and we didn't need to unecessarily restrict his diet. The real kicker for me was that my son's dad refused to even try a gluten free diet without the diagnosis (and he was also opposed to the biopsy - go figure)

I decided in the end to go ahead with it. It went very smoothly, and we found out that my son does indeed have celiac. His symptoms are also very mild, but I am guessing they would have worsened with time if we hadn't caught it so early. And when we saw the doctor that second time she was great. Very warm and answered all of our questions.

Whatever you decide to do, good luck with it. I personally am feeling very overwhelmed by the diet restrictions (so many seemingly harmless products have small amounts of gluten in them!) If it were me in your position, I would do the biopsy again to be absolutely sure I needed to be so vigilant with my label reading, though I do understand your reluctance.

[FMcGee]

I had the endoscopy and colonoscopy a couple of weeks ago. It isn't a big deal, and my mom (also a doctor, not a GI) told me it would be a good thing to do because a lot of times - as has been demonstrated here - celiac is not the only problem. It's up to you, of course, but I feel better having had it done because I know I don't also have any other problems, and my doctor can better help me figure out what supplements I might need, etc. Also, I don't know what your insurance is like, but mine will now authorize other tests, like thyroid and bone density, that it would not have without the endoscopy. I tend to lean toward science/medicine in general, because I was raised in a very scientific household, so that's my bias, but I (and my physician mother and the other scientific types I know) all recognize that medicine has its limitations and shortcomings. That's pretty clear given how long it took most of us to be diagnosed! So, the endoscopy might not be necessary for everyone, but it's not pointless, either.

[teitei]

I was told by my GP's nurse that I tested positive for Celiac 2 weeks ago, so this past Friday, I met with a GI Dr. Basically, I paid him my co-pay to be told what I already knew. And then he told me I *need* to have a biopsy, even though all the blood work was positive (I need to ask for exact numbers, but I know that all tests were positive - though he said they were "mild"). I told him, I really didn't want the biopsy. He asked why. I said, because I felt it was invasive, and not even 100% accurate, so I didn't see the point.

He went on to tell me, and I quote, "It is the gold standard..." I still said, that at this time, I would rather do a gluten-free diet (even though I don't really have any symptoms to begin with). Finally, we agreed, I would do that and come back in a month or 2.

I asked him if other people refuse the biopsy, and he told me no, I was the first one. I have a difficult time believing this.

What really got me though, was when I would ask him questions about Celiac, he would respond that he can't really answer anything "until I have the biopsy"...even general questions about the disease. I was so annoyed.

And then he goes on to tell me how since I am a vegetarian, I am going to have a really tough time, and walks out the door. Oh gee, thanks Dr...way to give me confidence and be supportive. Personally, I am pretty proud of the fact that I am a vegetarian (who occasionally eats fish, so really a pescatarian if you want to get technical =)

Anyway..has anyone else experiences this...a Dr who basically doesn't want much to do with you until you get the biopsy so you can become a bona-fide statistic??

I am just outside of Chicago, and moving back into the city this year. I know University of Chicago has good Celiac Drs, so I was thinking maybe I will find one here, but then I am thinking..they may not want anything to do with me either, until I agree to the biopsy

Hi. My 6 yr old son had 2 blood tests done indicating Celiac and my husband and I are thinking along the exact same lines as you although I do not know if it is different for a child. How are you doing by now?

Tracey

[runningcrazy]

My doctor said it was pointless to do further testing for me.

I had negative blood work and he said he'd run another panel, the panel he ran was for inflammation, not the celiac panel.

Also, since I am a vegetarian, he told me my constant bloating is from eating beans and vegetables! He said get beano and you'll be fine!

He's like, some people are just born with the tendency to have stomach aches. I dont believe this, because pain is a sign that something is wrong. I dont know why pain wouldnt alarm the doctor since it had been months and even a trip to the ER. I was not about to accept that i was born with the pain tendency!

Anyways if I were you i would know that if your that far into the disease to the point where you actually do show up on a blood test, the endoscopy would just be a procedure for your GI do get more money possibily? I think a positive blood test is more then adequate.

[teitei]

I had a similar experience with getting my son's diagnosis. That same term, "the gold standard" was used. I felt like they were trying to sell me a luxury car, as opposed to an invasive procedure during which my 4 year old would be put under general anesthesia - scary! The doctor was also rude, and blew me off when I asked questions. She had no interest in discussing other options.

We had a second blood test done, as well as a genetic test, and a second opinion from a different pediatric GI. the general consensus was that all tests pointed to celiac, the only way we could know for sure would be to do the biopsy, and we didn't need to unecessarily restrict his diet. The real kicker for me was that my son's dad refused to even try a gluten free diet without the diagnosis (and he was also opposed to the biopsy - go figure)

I decided in the end to go ahead with it. It went very smoothly, and we found out that my son does indeed have celiac. His symptoms are also very mild, but I am guessing they would have worsened with time if we hadn't caught it so early. And when we saw the doctor that second time she was great. Very warm and answered all of our questions.

Whatever you decide to do, good luck with it. I personally am feeling very overwhelmed by the diet restrictions (so many seemingly harmless products have small amounts of gluten in them!) If it were me in your position, I would do the biopsy again to be absolutely sure I needed to be so vigilant with my label reading, though I do understand your reluctance.

Hi. I would love to corresond with you regarding this as my 6 yr old son (who also has Down syndrome) has had 2 positive blood tests and I am leery of the endoscopy. I too, heard the "Gold Standard" term used frequently but no one would ever elaborate when I asked questions! Was your son put under general anesthesia or the other kind where they're only half out of it? Thanks!

Tracey, a very nervous mom

[Gemini]

Hi. I would love to corresond with you regarding this as my 6 yr old son (who also has Down syndrome) has had 2 positive blood tests and I am leery of the endoscopy. I too, heard the "Gold Standard" term used frequently but no one would ever elaborate when I asked questions! Was your son put under general anesthesia or the other kind where they're only half out of it? Thanks!

Tracey, a very nervous mom

Tracey...I cannot help you with your original question but wanted to let you know that children born with Down's are in the high risk group for Celiac Disease.

It tends to afflict more of these kids than others. One of the women who works at my eye doctor's office has a Down's brother and he went for a long time with severe symptoms before the doctor considered Celiac. He actually apologized to the family because he has since learned more about Celiac and didn't know himself that kids with Down's are much more likely to develop celiac disease. If you are nervous about having an endo done on your 6 year old, then a dietary trial to back up the blood work would work also but the decision is up to you. Good luck!

[bpyner]

I was told by my GP's nurse that I tested positive for Celiac 2 weeks ago, so this past Friday, I met with a GI Dr. Basically, I paid him my co-pay to be told what I already knew. And then he told me I *need* to have a biopsy, even though all the blood work was positive (I need to ask for exact numbers, but I know that all tests were positive - though he said they were "mild"). I told him, I really didn't want the biopsy. He asked why. I said, because I felt it was invasive, and not even 100% accurate, so I didn't see the point.

He went on to tell me, and I quote, "It is the gold standard..." I still said, that at this time, I would rather do a gluten-free diet (even though I don't really have any symptoms to begin with). Finally, we agreed, I would do that and come back in a month or 2.

I asked him if other people refuse the biopsy, and he told me no, I was the first one. I have a difficult time believing this.

What really got me though, was when I would ask him questions about Celiac, he would respond that he can't really answer anything "until I have the biopsy"...even general questions about the disease. I was so annoyed.

And then he goes on to tell me how since I am a vegetarian, I am going to have a really tough time, and walks out the door. Oh gee, thanks Dr...way to give me confidence and be supportive. Personally, I am pretty proud of the fact that I am a vegetarian (who occasionally eats fish, so really a pescatarian if you want to get technical =)

Anyway..has anyone else experiences this...a Dr who basically doesn't want much to do with you until you get the biopsy so you can become a bona-fide statistic??

I am just outside of Chicago, and moving back into the city this year. I know University of Chicago has good Celiac Drs, so I was thinking maybe I will find one here, but then I am thinking..they may not want anything to do with me either, until I agree to the biopsy

I was told that the blood test can be a false positive and that the only definitive test is the biopsy. It's worth it to know for sure before you have to start a strict, limiting diet. The test is very, very simple and over in 20 minutes. However, I live in Canada and do not have to pay for the test as we have coverage with our universal medical plan.

[ravenwoodglass]

I was told that the blood test can be a false positive and that the only definitive test is the biopsy. It's worth it to know for sure before you have to start a strict, limiting diet. The test is very, very simple and over in 20 minutes. However, I live in Canada and do not have to pay for the test as we have coverage with our universal medical plan.

Actually false postives are very rare, false negatives however are common on both blood test and biopsy. No matter what the test results are a strict trial of the gluten free diet should be done after all testing is finished even if the results are thought to be negative. Also doctors tend to think the diet is much worse than it is in reality. It does take a bit of getting used to but it is very doable and once someone is familiar with it it is not as hard as it would seem at first. We still can eat pizza, bread and all kinds of other 'gluteny type' foods they are just made with different flours. I have a chocolate cake baking right now that even the gluten eaters I know would be happy to enjoy.