Positive Blood Test, Negative Biopsy- Now What?

[JRPradio09]

Hey, I'm Jamie. Long time reader, first time poster.

 

I'm so frustrated right now. When I first started learning about gluten sensitivity and Celiac disease months ago, I felt like this could be the answer to what is wrong with me and all of the health problems I've suffered since I was a child; from ADHD, to PCOS, to all of the gastrointestinal issues. I'm 25F and feel awful, the list of ailments goes on and on. I've done a lot of reading online about gluten and perhaps that's a bad thing.

 

Around the beginning of the year, I began eating strictly gluten free and noticed a few changes, and I even lost weight. But, perhaps, the most notable change was how badly I felt after eating gluten! After a month gluten-free, I had a large sub sandwich, followed by pizza the next day that wrecked havoc on my body. Not only gastro symptoms, but brain fog that I could not believe. I knew it was gluten because I felt like I was punched in stomach not long after ingesting.

 

I went in to see another doctor different than my primary, and he tested me for a bunch of inflammatory bowel diseases. In fact, he stated that he was surprised that I hadn't already been tested, given my medical history. Tests for everything were in the normal ranges, except tests for 'gluten diseases were elevated'. From what I've read, the IGA is quite indicative of Celiac disease and normal people don't test positive unless they have another autoimmune disease. And this was after avoiding gluten. (With the exception of the sub and pizza)

 

Component Standard Range Your Value IGG TISSUE TRANSGLUTAMINASE AB <6.0 U/mL 1.5 IGA TISSUE TRANSGLUTAMINASE AB <4.0 U/mL 5.6

 

 

At first, they seemed to take this seriously. My primary MD told me to eat at least 4 pieces of whole wheat bread, or more, per day, for a month in preparation for an endoscopy. She also stated that they'd do more than one biopsy. Which was good from what I've read, since Celiac is a spotty disease.

 

Fast forward to now, I've had the endoscopy, with ONE biopsy. It was negative for Celiac sprue. And now they state that the blood test was a false positive! 

 

Since I'm still eating gluten, I simply asked my doctor if I could do the blood test once more to see my levels. She said that the biopsy is the ultimate test, and that I wasn't "allergic" to gluten and another blood test isn't necessary. She does agree that I may be sensitive, however.

 

So that's it? I just trust I don't have it? I think that because I'm 60lbs overweight that they're not taking me seriously. Never mind the fact that I was underweight AND malnourished as a child, and my endocrinologist says I'm carrying water weight from inflammation. Plus, I feel like the ultimate hypochondriac sometimes.

 

I'm not sure what to do next. I want to stop eating gluten, but I think I should get an unbiased second opinion. I have an appointment with my endo about my PCOS and I'm wondering if I should bring it up to him? I'm sick and tired of being sick and tired. Many thanks in advance.

[Gemini]

This is when you have to ignore the doctor and maybe just go gluten-free on your own for the rest of your life.    Here's what's wrong with what they did to you......

 

1.) They did only one measly biopsy, which is a joke.  Damage can be so spotty, especially in a younger person, that doing only 1 is almost a waste of time.  Did you receive the biopsy report because if so, you could post what it said and let some of the experts on this site see if there isn't anything else that would add credence to a Celiac diagnosis.  There are other markers to look for that most doctors never mention.  If they do not see flattened/blunted villi, then they will not give a diagnosis...even if you do have it.

 

2.) There really aren't any "false positives" in Celiac testing.  Yes, IgA/tTg testing, without any other testing done on the Celiac panel, can mean other autoimmune issues but having an out of range tTg should warrant further blood work....like a full Celiac panel, for starters.  You could also be tested for vitamin deficiencies and anemia.  You do have symptoms that lean heavily towards a gluten problem and had a very positive result with the dietary trial so I would ask your endo about it and tell them you need a full Celiac panel done.

 

It is very common for this to happen to people and you cannot ignore the elevated tTg or the dietary trial you did. You will have to be very assertive to get what you want from the medical profession and if they do not respond, which I personally would not accept for an answer, would you be able to go strictly gluten-free for the rest of your life without a diagnosis, if you felt that much better off of gluten?  Some people can and some cannot so this is something you will have to decide. 

 

Good luck and be polite but pushy with your endo and see where that gets you! 

[Fenrir]

They needed to do 4-6 biopsies in order to be sure they cover enough possible areas that could be affected.

 

So, I would say it is a lot more likely that the biopsy was a false negative than the tTG IgA was a false positive.

[notme]

ONE biopsy - that is insane.  maybe time to get a new doctor   they also should have told you that you need to be eating gluten prior to the test.  now that you have already been gluten free, if gluten is your problem, it is going to be very painful if not impossible to re-introduce gluten for (what is it, 6-8 weeks?  I can never remember..)  for a gluten challenge before testing.  and gem is right (ok, gem is usually right lolz)  - positive is positive.   smh....  I feel ya, kiddo, I spent many years getting the runaround from the medical professionals - "here's a pill.  you have ibs, colitis, blah, blah, ok we don't know what's wrong with you" 

[NoGlutenCooties]

She said that the biopsy is the ultimate test, and that I wasn't "allergic" to gluten and another blood test isn't necessary. She does agree that I may be sensitive, however.

 

So that's it? I just trust I don't have it?

 

Hi Jamie and Welcome!

 

Your doctor isn't very knowledgable about Celiac.  Yes, most doctors prefer to confirm the diagnosis via a biopsy but then they also typically take more than one.  You can have a negative blood test and still have Celiac.  You can have a negative biopsy and still have Celiac.  One can be positive and the other negative, etc.

And if it's non-Celiac Gluten Intolerance than the tests would all be negative and you'd only know you had it by eliminating it from your diet and getting better as a result.

 

What if you printed out some of the scientific research that has been done and took it to your doctor?

[SkyBlue4]

I think if your labs are positive AND you know you feel better gluten-free, the single biopsy was simply not enough to provide an accurate diagnosis.

 

My blood work was positive and 2 doctors diagnosed me with celiac disease. I was actually the one that insisted on pursuing an endoscopy. I was not happy that in the end he only took one biopsy though (and it was negative) but he still diagnosed me with celiac disease based on my blood work. I have been gluten-free for 4.5 months and plan to have my labs repeated at the 6 month mark to see if my antibodies are dropping.

 

This process can be quite frustrating if your doctors are not hearing your concerns. We've all experienced that at one point or another. Hang in there.

 

 

 

[JRPradio09]

Thank you all for the encouragement and the advice!  I think my family and some friends are getting sick of hearing about it. No one has expressed that, but I can just tell. It's pretty much all I've been thinking about for months lol.   Every time I eat gluten, it upsets me. It's another day I'm kept being sick.

 

I would be able to go gluten free without a diagnosis, and I will if I'm not celiac. The reason I want a diagnosis is mainly because I believe I have family who are suffering with gluten intolerance also, and someone has to be diagnosed first. Also, a lot of people I know think it's bunk. And I'm not going to do a gluten challenge again! That's a biggie.

 

You are all reiterating what I've read online. I should've had more biopsies taken. My biopsy didn't even make it to a pathologist because the GI doctor who did the endoscopy apparently looked at the sample the same day. I'm not sure if she's the pathologist or what; but all my questioning after the fact has been met with a certain amount of hostility. They just want me to trust them.

 

I just don't understand why they can't appease me and do a full celiac panel and gene test? I'd like to have a baseline that I can compare in the future. I have insurance and my bills get paid. I don't get it.

 

I am going to do what some of you suggested and bring in some medical research to back me up on this. My appointment with the endocrinologist is next Monday so I'll do "battle" then. I've actually been told in the past NOT to look things up online so I don't "scare myself"! But then I never would've gotten my PCOS diagnosis or found out all the allergies I have! I have some hope of the endo leading me in the right direction though. Specialists seem to be more interested in finding out the cause, instead of just trying to treat the symptoms. 

 

Does anyone have any links they could share to some research? I've seen plenty of stuff online, but as I'm new to this, I haven't a clue as to what will get a doctors' attention.

 

Thanks!

[nvsmom]

This report has some good info about testing. Open Original Shared Link

[spirit22]

Hey, I'm Jamie. Long time reader, first time poster.

 

I'm so frustrated right now. When I first started learning about gluten sensitivity and Celiac disease months ago, I felt like this could be the answer to what is wrong with me and all of the health problems I've suffered since I was a child; from ADHD, to PCOS, to all of the gastrointestinal issues. I'm 25F and feel awful, the list of ailments goes on and on. I've done a lot of reading online about gluten and perhaps that's a bad thing.

 

Around the beginning of the year, I began eating strictly gluten free and noticed a few changes, and I even lost weight. But, perhaps, the most notable change was how badly I felt after eating gluten! After a month gluten-free, I had a large sub sandwich, followed by pizza the next day that wrecked havoc on my body. Not only gastro symptoms, but brain fog that I could not believe. I knew it was gluten because I felt like I was punched in stomach not long after ingesting.

 

I went in to see another doctor different than my primary, and he tested me for a bunch of inflammatory bowel diseases. In fact, he stated that he was surprised that I hadn't already been tested, given my medical history. Tests for everything were in the normal ranges, except tests for 'gluten diseases were elevated'. From what I've read, the IGA is quite indicative of Celiac disease and normal people don't test positive unless they have another autoimmune disease. And this was after avoiding gluten. (With the exception of the sub and pizza)

 

Component Standard Range Your Value IGG TISSUE TRANSGLUTAMINASE AB <6.0 U/mL 1.5 IGA TISSUE TRANSGLUTAMINASE AB <4.0 U/mL 5.6

 

 

At first, they seemed to take this seriously. My primary MD told me to eat at least 4 pieces of whole wheat bread, or more, per day, for a month in preparation for an endoscopy. She also stated that they'd do more than one biopsy. Which was good from what I've read, since Celiac is a spotty disease.

 

Fast forward to now, I've had the endoscopy, with ONE biopsy. It was negative for Celiac sprue. And now they state that the blood test was a false positive! 

 

Since I'm still eating gluten, I simply asked my doctor if I could do the blood test once more to see my levels. She said that the biopsy is the ultimate test, and that I wasn't "allergic" to gluten and another blood test isn't necessary. She does agree that I may be sensitive, however.

 

So that's it? I just trust I don't have it? I think that because I'm 60lbs overweight that they're not taking me seriously. Never mind the fact that I was underweight AND malnourished as a child, and my endocrinologist says I'm carrying water weight from inflammation. Plus, I feel like the ultimate hypochondriac sometimes.

 

I'm not sure what to do next. I want to stop eating gluten, but I think I should get an unbiased second opinion. I have an appointment with my endo about my PCOS and I'm wondering if I should bring it up to him? I'm sick and tired of being sick and tired. Many thanks in advance.

Hi, I am new here. Please tell me what PCOS is. Thanks! I wish you well on getting the proper tests completed. I am going through this right now myself. It's not fun.

[LauraTX]

PCOS is Polycystic Ovary Syndrome.  First result on google is a good rundown of it:  Open Original Shared Link

[spirit22]

PCOS is Polycystic Ovary Syndrome.  First result on google is a good rundown of it:  Open Original Shared Link

Thank you so much, Laura!

[LauraTX]

No Problem, Spirit.

 

Jamie, if you need help finding a new doctor, you can browse through the doctors section and post if you don't see one for your area.  Also if your local area has a Gluten Intolerance group or something of the like, those people may be able to point you to who they went to.

[JRPradio09]

Thank you all for the posts! Great advice here!   I am going into the doctor's today armed with some medical research and I'm going to plead my case for a full celiac blood panel, and hopefully, gene test!

 

I'm at my absolute wits end, and if this fails, I'm just going to go gluten-free and move on with my life. Since starting this gluten challenge, I feel the worst physically I have ever felt. I have a vacation coming up in under two weeks, a 3-day music festival that i went to last year. I'm not even looking forward to it because I don't think I can handle it. 

 

This is an extremely frustrating process and I feel for anyone who has to go through it.

 

Wish me luck!

[JRPradio09]

I went to the Doctor yesterday and he doesn't believe I have Celiac, but agreed to do a blood test once again. I got the results this afternoon and my antibodies were negligible. Another blood test while eating gluten was all I wanted, and because of how much I was eating, I can believe this result. He and my primary did agree that I probably have an intolerance. I was instructed to not eat gluten for the next four months and see if it helps me (and I think it will).

 

In my case, I don't have celiac, but I think it's amazing how difficult the diagnostic process is. Thanks for the support and good luck to you all on your quest for health!