Blood Positive, No Visual Signs, Biopsy?

[natalie23]

Hi!

My blood tested highly positive for celiacs (IgG and IgA anti-transglutimase) so I went in to have an EGD and biopsy this morning. The GI told me that there were no visual signs of celiac disease and that everything looked healthy. He said that the biopsies would be more accurate though. Did any of you have this happen? Is it less likely that I have celiacs? Because that would be great!

Anyway, now he wants to do a colonscopy to check for a variety of colon issues that may be causing my diarrhea. I'd like to slow down a little bit and get this out of the way first. ...And I don't want to have a colonscopy.

I also have type 1 diabetes, if that information is useful.

Thanks in advance!

[leadmeastray88]

Hi!

My blood tested highly positive for celiacs (IgG and IgA anti-transglutimase) so I went in to have an EGD and biopsy this morning. The GI told me that there were no visual signs of celiac disease and that everything looked healthy. He said that the biopsies would be more accurate though. Did any of you have this happen? Is it less likely that I have celiacs? Because that would be great!

Anyway, now he wants to do a colonscopy to check for a variety of colon issues that may be causing my diarrhea. I'd like to slow down a little bit and get this out of the way first. ...And I don't want to have a colonscopy.

I also have type 1 diabetes, if that information is useful.

Thanks in advance!

Hi there,

First off, it is highly unlikely that you don't have Celiac disease - the bloodwork is very definitive when it is positive - there are almost never false positives.

The damage in your intestine can't always be seen with the naked eye. Wait and see what they say once they take a closer look at the biopsy. You can also have elevated levels of IgA and IgG but have no visible damage to the intestine - many people here have had this happened to them.

Also, the fact that you have type 1 diabetes raises a huge red flag - many people with type 1 diabetes also have Celiac.

Either way, I would say that you most probably have Celiac. I'm sure others here would agree. This forum is an amazing support system as well as a valuable resource.

Welcome to the board!

and P.S...if it is Celiac, you're lucky it didn't take you longer to figure it out - it takes, on average, 11 years to get diagnosed. So don't be too down on yourself!

[ShayFL]

If you have positive blood...then yes you are Celiac. You should also request genetic testing to see if you have Celiac genes. Just one more piece to the puzzle.

[natalie23]

Thank you for your prompt responses! I should have the biopsy results in about a week so I will let you all know what they find!

Thanks again!

[tarnalberry]

ditto from me. your blood test says that your immune system is producing antibodies against your own intestines when it sees gluten. that means you have celiac, and shouldn't be eating gluten.

[gfp]

ditto from me. your blood test says that your immune system is producing antibodies against your own intestines when it sees gluten. that means you have celiac, and shouldn't be eating gluten.

and ditto from me ....

If you want to get a positive diagnosis, I would ask the GI to explain the positive blood tests !!!

Listen to whatever they say ..then ask if its possible the biopsies were taken from a poor area to sample...

There are 1001 reasons why a biopsy might be wrong from the tech having a hangover that day to the samples in the wrong place

or simply the samples got mixed up ....

Perhaps you are still in a stage where the villi are being replaced as fast as they disappear?

I would say mostly it doesn't matter .. if your body is producing antigens then gluten is causing a problem..

[Tim-n-VA]

On the other hand, false positives in the blood tests are associated with other auto-immune issues and diabetes is an auto-immune disease.

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[ShayFL]

And auto-immune diabetes goes hand and hand with Celiac. If it were me, I would stop eating gluten.

[natalie23]

Let me start by saying that I am very angry.

I went in for the Bx on July 17, over two weeks ago. I kept calling my doctor's office for the results -- once a day since Monday. Each day they told me that they would have the doc's medical assistant call me back. She never did. Today I called and said that I wanted to her to call me back so I could know before the weekend. I was quite nervous about the biopsy and it would mean a lot to me if she would call.

Thirty minutes later, she did. She told me that she didn't know what I was talking about, they didn't do a biopsy.

On my discharge instructions, it says "Bx of small bowel pending," "call in 7-10 days for biopsy results," "may need to schedule a colonoscopy if biopsy is negative..." Under procedure it says, "EGD/Bx." She said that the EGD looked normal so they didn't do a biopsy. I told her that I had specific instructions for him to do the biopsy because my blood was positive for Celiacs. She said there was no record of it and no pathology report.

I got the bill from the hospital for the biospy. I called the billing department to ask them how I could find out if the biopsy was actually done and they gave me a number to call for my medical records. I called them and they said they had no record of a biopsy being done and that there was a strange code for pathology.

So I guess that they did the biopsy but coded it wrong and now it is lost? Or maybe they didn't do one at all because this guy knows nothing about Celiacs and decided to go against my and my primary care physician's wishes.

The MA told me she would get back to me soon after she talked to the doc. Well, they didn't get back to me today, so it definitely wont hear for another few days, if I ever hear back.

So what do you all think? Should I just find another doctor or wait a few more weeks/months. I must say I'm not really feeling well...but who knows if my insurance will let me have another (or a) biopsy.

Sigh.

[ShayFL]

How Awful for you. But a positive blood test is diagnostic for Celiac. Dear. You need to go on a gluten-free diet. And if it were me, I would start it ASAP!!!

[Fiddle-Faddle]

I have nothing helpful to suggest, but just wanted to offer sympathy.

I'd be madder than a hornet in your shoes, and would consider contacting the health writer of the nearest large newspaper.

If you want a biopsy, the hospital should do one free of charge, since they screwed up the other one (and dared to bill you for it!!!!! ). You might also contact a malpractice attorney.

On the other hand, life might be a whole lot easier if you just go off gluten and not have the added stress of another surgical procedure, lawyers, health insurance people, etc.

[natalie23]

I have nothing helpful to suggest, but just wanted to offer sympathy.

I'd be madder than a hornet in your shoes, and would consider contacting the health writer of the nearest large newspaper.

If you want a biopsy, the hospital should do one free of charge, since they screwed up the other one (and dared to bill you for it!!!!! ). You might also contact a malpractice attorney.

On the other hand, life might be a whole lot easier if you just go off gluten and not have the added stress of another surgical procedure, lawyers, health insurance people, etc.

True, true. I guess I'll see what next week brings.

[*lee-lee*]

Natalie - i'm so sorry for what you've been through.

i also got positive blood results but the doctor remarked after he performed the biopsy how normal everything looked. of course, i got a negative result which confused me beyond belief.

then i came on this forum and after much reading and a couple of questions, i've learned that most doctors don't know what the heck they're taking about and the only true diagnosis is a positive reaction to the gluten free diet. my belief is that i have Celiac (proven by the positive blood test and positive reaction to the diet) and the negative biopsy was just because i caught this early enough and haven't done significant damage to my intestines yet.

i understand your need to know for sure (i'm the same way, which is why i am now awaiting the results of genetic testing) - if it will make you feel better to find another GI you can trust to actually perform the biopsy, then i say do it. gather the necessary info from the hospital that shows the biopsy wasn't actually done and present that to your insurance company. get pre-approval (in writing) for another one to be done by another doctor. you might even consider going to an entirely different hospital, if that's a possibility.

as others have said, another option is to start the diet and see how you react...but don't do that if you intend on having another biopsy.

i wish you the best...keep us updated!

[Fiddle-Faddle]

I love Bread--If you are counting on genetic testing for answers, please be aware that Europe and Asia recognize 7 different genes as being linked with celiac, while the US only recognizes 2.

Go figure.

[*lee-lee*]

thanks Fiddle-Faddle...i didn't know that. this is the end of the testing for me anyhow. i just didn't want to leave the option open because i'd question it forever! i'm slowly starting to accept that i may never get an official diagnosis from an MD.

[Fiddle-Faddle]

MD stands for "More Drugs!"

[natalie23]

Hi all!

Well, I called today as I didn't hear back on Friday. It turns out the doctor who did the EGD and biopsy wont be back in until August 20. I don't know why they couldn't get back to me about this before he left on Saturday, but, well, whatever. Anyway, at some point I should find out what is going on, as soon as he decides to get back to them, and they decide to give me a call. I gave them until Friday to get back to me. If they don't, I will fire him and let my very trustworthy primary care physician know what happened and I'm sure he won't refer another patient to him.

The staff at his office obviously don't care about me, and I have a feeling that he doesn't either. They scheduled me for a breath test on Wednesday (knowing he's out of town?) but I have canceled that, as I wont know my biopsy results by then. It seems like they want me to go through every procedure possible so that he will make some money before they tell me anything (I have something, or I don't).

I asked them if there was anyone else I could talk to, like a fellow gastroenterologist who was handling his patients. The woman told me that he wouldn't know anything, and that they have to talk to Boschert first. I am very surprised that a doctor affiliated with a hospital wouldn't assign another physician to his patients while he is out of town for three weeks. My primary care physician, dermatologist, and endocrinologist all do this.

The woman I talked to developed an attitude issue near the end. I'm sure she was frustrated with my irritability and pure sadness towards this entire situation. I feel like I am not being respected and that they are trying to cover something up, all while not caring how I feel. It's surprising.

My primary care physician is out of town until the 8th, but I'm going to have a doctor I know call them on Thursday if I haven't heard yet.

I would be a happy patient if he would call and say, "We screwed up, big time. I apologize and will have the bill taken care of. I think we should schedule another biopsy." Or something like that. But instead, a lot of dishonesty. Fortunately, depending on what happens, my sister works for a local TV station that loves doing stories on the particular hospital I had this done at (they have had a lot of issues) and both of my parents are attorneys.

I think there is a patient's rights statement that says I have the right to know and understand what is on my medical record. I do believe it is fraud to not do a biopsy and bill me for it, negligence to knock me out to do a biopsy and not do it, and there has to be something illegal about withholding medical information from me.

*Sigh* Sorry this was a bit of a ramble.

[natalie23]

Well, I heard from the doctor (I think I definitely did the right thing!) from his vacation spot. The first call: he took the biopsies, but he doesn't think I have it because there's a lot of false positives from blood work and my symptoms don't match up (?) but he'll try to track them down. The second call: he just called the lab, they got them, they did the testing, will hear soon what they show. The third call: the biopsies show mild-to-moderate damage of sprue, I need to make an appointment with a dietitian, and go on a gluten-free diet.

So there you have it! Thanks for being here! The advice has been and will be great. It's nice that there are great resources for this!

[tipnpat]

Well, I heard from the doctor (I think I definitely did the right thing!) from his vacation spot. The first call: he took the biopsies, but he doesn't think I have it because there's a lot of false positives from blood work and my symptoms don't match up (?) but he'll try to track them down. The second call: he just called the lab, they got them, they did the testing, will hear soon what they show. The third call: the biopsies show mild-to-moderate damage of sprue, I need to make an appointment with a dietitian, and go on a gluten-free diet.

So there you have it! Thanks for being here! The advice has been and will be great. It's nice that there are great resources for this!

What a horrible ordeal for you! At least you have a concrete answer now and they can't dismiss you anymore (that isn't to say that they won't), but their tails are between their legs, I'm sure.

[hawaiimama]

I think I'd get a new GI after all of that!

I'm waiting too for my results although I read the report on my stomach after the biopsy that said "scalloping" so I'm guessing the biopsy will be positive.

At least you have your answer!