Do I Really Need A Biopsy?

[BlueBridie]

Hi There,

I'm new, but have posted a few replies already. I do however have some questions regarding my diagnosis.

My doctor ran many food allergy tests, and when the results came back he told me everything was normal except I had high protein levels indicating inflammation, and the test for Celiac Disease was positive. He did mention that Drs usually send patients with positive results to a specialist to get a biopsy, but he suggested I just 'google Celiac and start a Gluten Free diet immediately'. So I did. That was 8 days ago, and although I'm still having some trouble, I actually feel better (and have discovered what 'normal' poop is!!)

My husband, bless him, was very upset to hear that I won't be eating Gluten any more, particularly as I've been lactose intolerant for years (although I'm told this may go away) and has suggested that I should ask to see a specialist to get a proper definite diagnosis.

What should I do? I trust my Dr and if he tells be he's certain I have it, I'm happy. But I would hate to find out after several years of being Gluten free that I'm actually not, or worse, having to do a 'gluten challenge' which sound very unpleasant!

If I do request to see a specialist, and if I get a biopsy quickly, surely being gluten free for a week or two wouldn't make that much difference to the results? Would it?

[LDJofDenver]

Hi There,

I'm new, but have posted a few replies already. I do however have some questions regarding my diagnosis.

My doctor ran many food allergy tests, and when the results came back he told me everything was normal except I had high protein levels indicating inflammation, and the test for Celiac Disease was positive. He did mention that Drs usually send patients with positive results to a specialist to get a biopsy, but he suggested I just 'google Celiac and start a Gluten Free diet immediately'. So I did. That was 8 days ago, and although I'm still having some trouble, I actually feel better (and have discovered what 'normal' poop is!!)

My husband, bless him, was very upset to hear that I won't be eating Gluten any more, particularly as I've been lactose intolerant for years (although I'm told this may go away) and has suggested that I should ask to see a specialist to get a proper definite diagnosis.

What should I do? I trust my Dr and if he tells be he's certain I have it, I'm happy. But I would hate to find out after several years of being Gluten free that I'm actually not, or worse, having to do a 'gluten challenge' which sound very unpleasant!

If I do request to see a specialist, and if I get a biopsy quickly, surely being gluten free for a week or two wouldn't make that much difference to the results? Would it?

My doctor also told me that I did not need the small bowel biopsy. He said all my bloodwork was positive for it, plus I had a first-degree relative with it, so he said it was unnecessary (at least in terms of using it as a diagnostic tool).

However, a few months later I referred myself to a GI doc, just for a consultation and the first thing out of their mouths was that I needed to have an endoscopy!

They said it is not just for diagnostic purposes, that they biopsy for specific markers, and level of damage to villi. Plus, you may have some related esophageal issues if you've suffered with celiac disease long enough, have had acid reflux because of it, or many years of being sick (vomiting). I did, and was unaware and am now on prescription Prilosec.

I'd suggest a consultation with a G.I. doc and go from there, on their recommendation (GI docs often have a different take on things than your GP). Unlike blood tests, you most likely will not have to eat gluten again for your endoscopy, as the damage doesn't heal very quickly in the small intestine.

[Skylark]

Hi, there.

If you had anti-endomysial antibodies in your blood, you need to be off gluten no matter what. Even if you have a normal biopsy, people with those antibodies usually eventually end up with intestinal damage. The celiac blood tests should fall to normal in six months to a year of eating gluten-free, so you can follow it up that way with your normal doctor.

If you want to go with the GI specialist he will almost certainly want to scope you and biopsy. They like to have a look around and check for other kinds of damage. A couple weeks gluten-free won't reverse any celiac damage, but you really should go back on gluten if you feel like you need positive results to convince your husband.

By the way, a lot of celiacs are lactose intolerant and find they can digest lactose again once their villi heal.