Testing and biopsy

[KathleenH]

Hello everyone! I am new to this so bare with me if I mess something up I've never posted on a forum. So on Friday I will be getting a biopsy done to confirm celiac disease. I'm wondering if I had a positive blood test what are the chances that the biopsy will come back positive showing blunted villi. I know its hard to say if you aren't a doctor but I'm curious. I guess I'm just looking for reassurance that I'll get a positive result. I know that sounds weird, like "wait you want celiac disease?" but I'm only 21 and I've been sick for so long and been to countless doctors and no one knows whats wrong with me. I finally think this can be the "thing" and maybe I can start to feel like a human instead of a zombie. Thanks for the input in advance! 

[cyclinglady]

Welcome!  No one can say for sure that a positive celiac blood test is going to confirm celiac disease.  Some folks skip the endoscopy for various reasons (health, financial, long wait times in some countries, etc.), but help to confirm with a trial Gluten free diet.  The endoscopy remains the "gold standard" by most celiac experts.  

Note that your test may be negative if you stopped eating gluten.  You must be eating it daily two to four weeks prior to the endoscopy.  If you stopped, you might need to postpone the procedure. Ask your GI to take four or more intestinal tissue samples.   Damage from celiac disease can be spotty.  

Good luck!  Keep us posted.  We are here to help.  ?

 

 

 

[KathleenH]

1 minute ago, cyclinglady said:

Welcome!  No one can say for sure that a positive celiac blood test is going to confirm celiac disease.  Some folks skip the endoscopy for various reasons (health, financial, long wait times in some countries, etc.), but help to confirm with a trial Gluten free diet.  The endoscopy remains the "gold standard" by most celiac experts.  

Note that your test may be negative if you stopped eating gluten.  You must be eating it daily two to four weeks prior to the endoscopy.  If you stopped, you might need to postpone the procedure. Ask your GI to take four or more intestinal tissue samples.   Damage from celiac disease can be spotty.  

Good luck!  Keep us posted.  We are here to help.  ?

 

 

 

Thanks for the reply. Yes I have been eating it everyday since they said it was a possibility but I hope its enough because I do prefer to eat fresh stuff. Like for example today I ate mainly gluten free stuff (as I normally do) but I had pasta to make sure I got something with gluten. Also do you know how long it takes for the biopsy to come back? Can they tell anything from the naked eye while doing the endoscopy? 

[Jmg]

Welcome Kathleen

32 minutes ago, KathleenH said:

Also do you know how long it takes for the biopsy to come back? Can they tell anything from the naked eye while doing the endoscopy? 

You will probably get some instant feedback on what they've seen with the naked eye, I got a sheet with the initial observations of the person that did the endoscopy, but the analysis of the villi happened later in the lab via the biopsies taken. So you'll have to wait till you speak to your GI before you get the full picture.

1 hour ago, KathleenH said:

. I know that sounds weird, like "wait you want celiac disease?"

No it doesn't feel weird at all! You're lucky you've found one of the few places where almost everyone will know exactly what you mean. I found myself very conflicted when my biopsy failed to find evidence of celiac because by then I'd established exactly what gluten did to me. So, even if the results are negative, bear in mind that you may be like me and others, and give the gluten free diet a try regardless.

Best of luck. You've found a great site here, hope it's as useful to you as it's been for me.

 

[KathleenH]

1 minute ago, Jmg said:

Welcome Kathleen

You will probably get some instant feedback on what they've seen with the naked eye, I got a sheet with the initial observations of the person that did the endoscopy, but the analysis of the villi happened later in the lab via the biopsies taken. So you'll have to wait till you speak to your GI before you get the full picture.

No it doesn't feel weird at all! You're lucky you've found one of the few places where almost everyone will know exactly what you mean. I found myself very conflicted when my biopsy failed to find evidence of celiac because by then I'd established exactly what gluten did to me. So, even if the results are negative, bear in mind that you may be like me and others, and give the gluten free diet a try regardless.

Best of luck. You've found a great site here, hope it's as useful to you as it's been for me.

 

Yes, I plan on going gluten free regardless of what the biopsy said because my doctor said there could be a chance I'm gluten intolerant. I was feeling anxious about what my lab results said because they didn't fully explain them to me so I actually called them today and they said my Ig-A was very high. But as I was hanging up the phone and confirming my endoscopy with the nurse I could of sworn she said their is no biopsy. Like what? I thought that was the entire point. To look at the villi? 

[cyclinglady]

It takes 7 to 10 days (depending on where you live).  My GI told me that everything looked great when he looked (no stomach ulcers, etc), but my biopsies revealed moderate to severe damage.  So, you need to wait for the pathologist's report.  I know, waiting is hard!  And speaking of reports, it is a good idea to maintain all your medical records.  Good habit to get into.  When I walk into a new doctor's office, I have proof of my celiac disease diagnosis and all my other ailments!  ?

Today  is the day to eat your most favorite gluten food!  I only miss good sourdough bread.  Luckily, I have been able to recreate gluten-free versions of everything else that I like.  

[KathleenH]

Hahah yes. I took all my spring break as time to eat/try all the food I wont be able to have. It was worth the pain I think =b.. but I'm perfectly happy to get rid of it and get healthy. =] 

[cyclinglady]

Call back and confirm.  I would even ask the GI on Friday to show the lab order.  Intestinal damage is not always seen visually.  Your GI should be following leading celiac research center's guidelines like this one: 

Open Original Shared Link

(I often refer to the University of Chicago's website because it is the most well written and easy to nagivate.). 

Be your own health advocate.  Doctors can and do make mistakes!  

[cyclinglady]

I had seven weeks after my positive blood test to consume gluten.  (I waited due to work contraints).  I ate gluten like a fiend.  Bought everything and sample a few and gave away the rest.  It was a fond farewell.  Even ate a loaf of sourdough bread a day.  I kid you not!  Anemia was my only symptom.  By the end of seven weeks, I had all the classic gut issues.  I knew even before my biopsy that gluten was not for me.  ?

[KathleenH]

2 minutes ago, cyclinglady said:

Call back and confirm.  I would even ask the GI on Friday to show the lab order.  Intestinal damage is not always seen visually.  Your GI should be following leading celiac research center's guidelines like this one: 

Open Original Shared Link

(I often refer to the University of Chicago's website because it is the most well written and easy to nagivate.). 

Be your own health advocate.  Doctors can and do make mistakes!  

They unfortunately closed so I will have to call back tomorrow. What if they say they aren't doing a biopsy, what do I do? My mom is traveling from far away to come with me so I cant really reschedule.  

[cyclinglady]

Do not worry.  Didn't you say you talked to a nurse?  She might not even know the procedure for obtaining biopsies for celiac disease.  She might just be thinking endoscopy.  She might even be new to the practice.  Who knows?  Print off the U of Chicago's info and call or email tomorrow with your questions.  If you do not get an answer, then talk to the GI when you see him on Friday. But you need the biopsies.  Villi damage is too small to see!  There are some other signs....but biopsies are key.  

[GFinDC]

Hi Kathleen,

There is a standard called the Marsh Scale that is used to rate the various levels of damage to the gut.  While the lighter damage levels might not show up to the naked eye, the worst damage levels are obviously visible.  The worst levels result in what they call "scalloping" referring to the appearance of the gut lining.

Isn't this great, you are learning new stuff already!

Welcome to the forum Kathleen!

[KathleenH]

Thanks everyone for the advice and info! I've never really considered joining a support group before but its pretty cool to get intouch with people who understand what you're experiencing. For years everyone would just tell me I was a  hypochondriac but after I learned that I might have this disease and researching it these are all the symptoms I've been having! I finally don't feel crazy anymore! 

[cyclinglady]

You are not crazy!  There is something wrong.  Keep advocating for your health.  I am glad your Mom will be with you.  

[KathleenH]

Hey guys so I had the endoscopy today. When my doctor was going into it he made it sound like all of a sudden he didnt think I had celiacs. He said my antigen levels were elevated but not super high.  When I woke up he told me that he didnt see anything that indicated celiacs with the naked eye. So he took like 5-6  biopsies  and he will see how those look. He said if it comes back negative they are going to do a DNA test to see how predisposed my DNA is. Why would he all of a sudden think I dont have it? I feel so sad today. I just want to feel better. :'( did any of you have a normal looking intestine but your biopsy was positive?

[cyclinglady]

Me.  Only one positive on the celiac panel and visually, my GI said everything looked great.  My biopsies revealed moderate to severe patches of intestinal damage.  You just have to wait for the pathologist's report.  The wait is hard!  ?

[KathleenH]

29 minutes ago, cyclinglady said:

Me.  Only one positive on the celiac panel and visually, my GI said everything looked great.  My biopsies revealed moderate to severe patches of intestinal damage.  You just have to wait for the pathologist's report.  The wait is hard!  ?

Yes it is! 10-12 days they said. I hope Thats what mine is like. I really dont want to be left again with no answers as to why Im so sick. 

[Washingtonmama]

7 hours ago, cyclinglady said:

Me.  Only one positive on the celiac panel and visually, my GI said everything looked great.  My biopsies revealed moderate to severe patches of intestinal damage.  You just have to wait for the pathologist's report.  The wait is hard!  ?

My daughter just had hers done. They said everything looked normal during the procedure, but her biopsies showed otherwise. 

[ironictruth]

I do not have a diagnosis. But I do know that I had an EUS in late July to rule out duct issues and an endoscopy in late August and both doctors said visually everything was fine. In fact, one of them (was referred to him for the procedure only) sternly said, "there is nothing wrong with your duodenum!" But never asked me a single question about symptoms nor did he introduce himself. 

Nausea was one of the main symptoms at the time. 

The pathology report read "marked focal duodenitis", which is basically inflammation without villi blunting. My GI commented on the language the pathologist used. 

So yup. They can miss a lot visually during the scope.