Biopsy Or Not?

[JonnyD]

Hello,

Here's my first post... thanks for reading!

Last week, my blood test for Celiac came back positive. My results were as follows:

Tissue Transglutimainase (tTG) reading: 96

Gliadin Peptide Antibody reading: 74

Celiac Disease Dual Antigen Screen: 131

For each case, the nominal range is 0-19 units. To add to this, my brother was diagnosed a little over a year ago as well as two of his kids. My brother actually had the biopsy to confirm his diagnosis. I also have an aunt on my father's side that was diagnosed with Celiac as well, not sure if she had a biopsy too.

I switched to gluten-free about a week ago and seem to feel better already. I'll turn 37 next week and can't believe I'm just finding this out now.

Do I really need to have a biopsy to confirm this? I've accepted the diagnosis based on my lab results but wonder about the necessity of a biopsy for confirmation purposes.

So, any insights on the utility of biopsy with all this in mind are appreciated. Thanks.

Jonny

[jeslk]

Hi,

I was in a similar position in that both by primary doctor and the gastroenterolotist agreed that the blood work was conclusive for celiac. They wanted the biopsy done, though, and I'm glad I did it. It just made everything official for me (I didn't have any outward symptoms, so it was a big shock to find out about the diagnosis), and I think that will help me get started on the gluten free lifestyle AND will make it more real for family and friends. I've heard that it can be hard to get people to take celiac disease seriously, so I wanted all of the backup I could get.

If those aren't concerns for you, then I wouldn't really worry about it. Someone mentioned to me that the biopsy is important for children in terms of getting schools to accomodate for diet issues, but I can't think of how that would affect an adult.

Hope this helps - good luck!

[love2travel]

Hi,

I was in a similar position in that both by primary doctor and the gastroenterolotist agreed that the blood work was conclusive for celiac. They wanted the biopsy done, though, and I'm glad I did it. It just made everything official for me (I didn't have any outward symptoms, so it was a big shock to find out about the diagnosis), and I think that will help me get started on the gluten free lifestyle AND will make it more real for family and friends. I've heard that it can be hard to get people to take celiac disease seriously, so I wanted all of the backup I could get.

If those aren't concerns for you, then I wouldn't really worry about it. Someone mentioned to me that the biopsy is important for children in terms of getting schools to accomodate for diet issues, but I can't think of how that would affect an adult.

Hope this helps - good luck!

This is exactly my story. My bloodwork revealed it was highly likely but I wanted to be certain as I did not feel ill or anything at all - loads of energy, not anemic and so on. But the biopsies did definitively show celiac disease. Whilst it was a huge shock two weeks ago I am well into my gluten-free lifestyle now. I am very glad I had the biopsies both as proof and to see whether there was any other damage (I had both gastroscopy and colonoscopy).

[ravenwoodglass]

With blood work as strongly positive as yours and a family history of celiac it is really up to you whether you want to biopsy. Keep in mind that you could still have a false negative on the biopsy and will need to go strictly gluten free no matter what the biopsy results are. If you are going to biopsy you need to go back on gluten immediately. You can start the diet the day they do the biopsies you don't need to wait on the results. If you don't need the biopsy to be strict with the diet personally I would just skip it and continue healing.

[Lisa]

Hi Jonny and Welcome!

You have a strong family history and positive blood work. That's more than adequate for a diagnosis....in addition to positive dietary results.

I personally feel it's wise, for those of us with intestinal issues for many years to have, at the least a baseline endoscopy exam. It also can rule out more severe issues. But, it's not necessary for further support of a diagnosis.

Welcome to the Club!

[JonnyD]

Thanks for the insights and responses. Tomorrow will mark my first gluten-free week and I honestly don't see the utility of the biopsy, or going back to non-gluten-free foods for that matter. I found out by requesting the test with my (new) family medicine doc. My signs were mostly subtle over the years so it was a slight surprise. I've got an appt to see the GI on Monday afternoon and talk all this over as the family dr was only willing to admit that the test show that I have a gluten sensitivity and that a biopsy was necessary for an official diagnosis. I'll report back on all this soon. Thanks again.

[Stellar003]

It sounds like you have all the proof you need for sure, but I'd say if you have good insurance it can't hurt to have the biopsy. I just had one and it is a really simple procedure. The worst part for me was the anesthesia hangover feeling (closely followed by the pain of removing the tape from my arm where the had the iv in which is like a free wax job) good Luck to you!

[healinginprogress]

It just made everything official for me (I didn't have any outward symptoms, so it was a big shock to find out about the diagnosis), and I think that will help me get started on the gluten free lifestyle AND will make it more real for family and friends. I've heard that it can be hard to get people to take celiac disease seriously, so I wanted all of the backup I could get.

I feel like this, too!!! I had very positive blood test (ttg came back as >100!), yet, I feel like I can't say I have Celiac Disease until I get the biopsy!