[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.

[janetw]

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]

ciaorio, on Mar 3 2009, 08:38 PM, said:

- 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]

Beloved, on Mar 4 2009, 08:23 PM, said:

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]

Beloved, on Mar 4 2009, 09:23 PM, said:

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]

Beloved, on Mar 4 2009, 06:23 PM, said:

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]

Fiddle-Faddle, on Mar 3 2009, 09:45 PM, said:

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.

kitty kermit, on Mar 30 2009, 05:14 PM, said:

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