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To Biopsy Or Not?

muffins

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muffins Newbie
muffins
Posted

Hello, everyone.

I need some advice about having a biopsy done. My bloodwork showed an antibody level (I think it was tTTG) of 99. My GP commented that my levels were "impressive" and referred me to a GI doctor. The specialist says the only way to know for certain is to get a scope in there to assess any damage. He also wants to do a colonscopy at the same time since I'll be in the hospital. I have no argument with the colonscopy given my age (52) and my family history (my father had polyps) but am uncertain about the biopsy. I had been attempting a gluten free diet at the urging of my GP but haven't completely eliminated all gluten yet. Now I wonder if I should continue with the diet if I decide to go ahead with a biopsy? I told the specialist I was trying to do the diet yet he never suggested that I put it on hold until the biopsy. He even wondered why I was referred to him because I hadn't reported any bowel complaints. I'm fairly asymptomatic. Had tummy trouble in the past but could usually attribute the symptoms to stress. Isn't the bloodwork on its own indicative of celiac? I feel a biopsy is unnecessary. Can anyone advise me of the merit of having this test done?

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ShayFL Enthusiast
ShayFL
Posted

Many opt for a biopsy so they can have a gold standard Dx. This can really help with compliance to the diet for some.

I opted to NOT have a biopsy because I am high risk for perforation. No thank you!!

So I am just doing the diet.

The choice is yours. But if you want the biopsy....keep eating gluten till you do.

leadmeastray88 Contributor
leadmeastray88
Posted

Hi there!

I myself have never had the endoscopy, not yet anyway.

Here's the thing about blood tests and biopsies:

Blood tests can have false negatives, but NO false positives. The reason being is that some Celiacs don't produce IgA antibodies, and are therefore IgA deficient. These antibodies also won't show up in the bloodstream if there isn't significant damage done to your intestines.

Biopsies are hit-and-miss. Who's to say your gastro will biopsy a damaged part of your intestine? Many people here get positive blood tests and negative biopsies, and vice versa. I personally don't believe the biopsy is necessary when your bloodwork was conclusive.

Some doctors believe that a biopsy is necessary for diagnosis, however. It's really your call. How badly do you want a diagnosis? You can always try the diet anyway, there's no harm in that, and if it works for you, then you have your answer.

Hope that helps! This forum is an amazing support group. You should come here often!

-Kim

muffins Newbie
muffins
Posted
  • Author
Many opt for a biopsy so they can have a gold standard Dx. This can really help with compliance to the diet for some.

I opted to NOT have a biopsy because I am high risk for perforation. No thank you!!

So I am just doing the diet.

The choice is yours. But if you want the biopsy....keep eating gluten till you do.

------------------------------------------------------------------------------------------------

The specialist did mention the risk of perforation. How do you know when you're at a higher risk? Were you warned about it by your doctor? I don't mean to pry. I just want to be aware of the risks should I agree to the procedure. I likely will because I was finding it a struggle to stick to the diet. I've been eating some gluten lately in case I go ahead with it.

muffins Newbie
muffins
Posted
  • Author
Hi there!

I myself have never had the endoscopy, not yet anyway.

Here's the thing about blood tests and biopsies:

Blood tests can have false negatives, but NO false positives. The reason being is that some Celiacs don't produce IgA antibodies, and are therefore IgA deficient. These antibodies also won't show up in the bloodstream if there isn't significant damage done to your intestines.

Biopsies are hit-and-miss. Who's to say your gastro will biopsy a damaged part of your intestine? Many people here get positive blood tests and negative biopsies, and vice versa. I personally don't believe the biopsy is necessary when your bloodwork was conclusive.

Some doctors believe that a biopsy is necessary for diagnosis, however. It's really your call. How badly do you want a diagnosis? You can always try the diet anyway, there's no harm in that, and if it works for you, then you have your answer.

Hope that helps! This forum is an amazing support group. You should come here often!

-Kim

Thank you both for your responses. I agree that the biopsy is probably unnecessary, but it will likely help me with the compliance issue. If the results turn up negative, well, I might need some convincing to continue with the diet. I didn't notice any major changes when I was following the diet more religiously. Maybe it hadn't been long enough. And yes, I will visit here often! I have lots of questions.

ShayFL Enthusiast
ShayFL
Posted

I am high risk for perforation because I had abdominal surgery in my teens which has left me with a lot of scar tissue which makes my intestines not "lay right" in my body. Just not a good idea for me.

aikiducky Apprentice
aikiducky
Posted

I'd say go for the biopsy unless you have very good reasons not to (like ShayFL has). The reason why I say this is that the diet is for LIFE. You might not feel like having a biopsy now, but how will you think about it in ten years time? It will be much more difficult if you start to doubt your diagnosis then and would like to have one after all.

At this moment a diagnosis by biopsy is the only one a lot of doctors will accept. You might not need it now but you might in the future, and now is the time that it can be done. After you have been gluten free for a while, the results of the endoscopy would be more uncertain. And then you end up in a situation where you don't know for sure where you're at.

If the biopsy turns out to be negative, there's no reason why you couldn't still try the diet to see if it helps afterwards.

Pauliina

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WW340 Rookie
WW340
Posted

Actually, a person can have a false positive tTG. However, it does not happen often. The endomysial antibody test is the test that is virtually 100%.

From the Celiac disease Center of Columbia University website: Open Original Shared Link

Causes of false positive celiac serologic tests

The endomysial antibody test is virtually 100% specific for celiac disease. However anti-tTG has been reported to be positive in the presence of liver disease, especially cirrhosis [33], diabetes [34, 35] and severe heart failure [36], as well as arthritis [37] and various autoimmune disorders [38]. The use of human tTG as the antigen in the test kit adds some greater specificity. Antigliadin antibodies may be present in inflammatory bowel disease [39], collagen vascular disease [40], and in many healthy people as well [41].

My antibodies were off the charts according to my GI. I opted for the full evaluation also. I certainly have never regretted it. I have seen those that have regretted not getting the biopsy while they could. I got a definitive diagnosis and I have never intentionally strayed from the diet. I also feel that the more of us that get fully diagnosed, the better. As our numbers grow, the more research will be done for a cure.

muffins Newbie
muffins
Posted
  • Author

I had extensive bloodwork done and according to my GP, the positive results were confirmed by more than one test. But I'm the kind of person who needs the evidence in my face so to speak, or I'll likely relapse and have a slice of gluten now and then. It took a couple of tries before I could quit smoking and I don't expect going totally gluten-free will be any easier. That would be a good topic for another thread. I've made up my mind to go ahead with the test and play the waiting game. Hoping for positive results? If that's not sick, or what?!

*lee-lee* Enthusiast
*lee-lee*
Posted

Muffins -

i debated the biopsy too but decided to go ahead with it and get it over with while i was still consuming gluten. i hated the thought of being gluten-free only to have to go back on gluten just for the biopsy. i was not nervous about it until i actually got to the hospital and they inserted the IV. but it went very well and the only thing i regret is not being able to take a good long nap when i got home! i don't remember a thing after they put the bite plate in my mouth and aside from a scratchy voice the next day, it was like nothing was done to me.

well actually...i say it went well except the results came back negative. i was really hoping for a positive result, just to have a definite diagnosis. My Endomysial Antibody (IgA) was 199 which the lab marked Positive Abnormal so i guess i just didn't have enough damage or the doctor didn't biopsy the right places or take enough samples.

i am one of those people who needs to have concrete answers so i'm struggling with just accepting the fact that i probably have Celiac and just get on with a gluten-free life. i'm currently debating genetic testing but started the diet 10 days ago and am responding quite well. so while it's just eating away at me that i don't have an official "stamp" on my medical charts, i'm slowly trying to focus on other things!

good luck with the biopsy...let us know your results when you get them!

muffins Newbie
muffins
Posted
  • Author

Thanks!!! I appreciate everyone's advice.

One question though: Would I be able to drive myself home afterwards (after having both an endoscopy and colonscopy)? Maybe not immediately, but an hour or two, later? I want to get this over with soon before I start enjoying my wheat bread again! but I can't swing a ride and the hospital is a half hour away by the freeway. I know what the secretary's answer will be if I ask her.

cruelshoes Enthusiast
cruelshoes
Posted
Thanks!!! I appreciate everyone's advice.

One question though: Would I be able to drive myself home afterwards (after having both an endoscopy and colonscopy)? Maybe not immediately, but an hour or two, later? I want to get this over with soon before I start enjoying my wheat bread again! but I can't swing a ride and the hospital is a half hour away by the freeway. I know what the secretary's answer will be if I ask her.

Everyone I have ever known to have the procedure was told to bring someone to drive them home. Grogginess is common for much of the day following the procedure. You will probably find that you do not remember much of the procedure, or much of the day you have it done.

WW340 Rookie
WW340
Posted

Muffins, they generally will not let you drive after one procedure, let alone both. You will probably need to have a driver with you or they will not do the procedure. That has been my experience anyway.

Good luck, I hope you can find someone.

*lee-lee* Enthusiast
*lee-lee*
Posted

yeah, you'll need to have someone with you. they wouldn't let me go until my grandma got there. aside from being a little groggy, i felt like could have driven but Grandma and the nurse both said no way!

Katsby Apprentice
Katsby
Posted

I think they only give you a half hour to recoup maybe and then they send you home. I don't remember getting dressed or anything so I don't think you'd be ok with driving home. I was just so groggy. I went home and pretty much went to sleep. I had both tests done on the same day.

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