What associated tests are worth requesting post-diagnosis?

[celioops]

Hey all,

Got biopsied and the gastroenterologist sent a short, informal note letting me know I have celiac and to avoid gluten. Yay! But I have questions...

He didn't even give me a Marsh score, which seems weird given that most formally diagnosed people on here have one. In my post-procedure notes from the endoscopy (had to request them myself from the doctor's office) he wrote there was visible scalloping in my duodenum. Google seems to conclude that visible damage means my villi damage was probably pretty severe. Why wouldn't he tell me a Marsh score? I was biopsied and everything.

I had asked him previously about vitamin/mineral deficiency testing since I had very low iron for years (now explained with the celiac diagnosis). He told me to take a multivitamin and we could think about deficiency testing after the biopsy. Well, I'm biopsied... and he told me to just keep taking a multivitamin for eternity. Is it worth it to push him or my primary doctor for vitamin/mineral testing? 

Low bone density runs in both sides of my family. That combined with the risk of osteoporosis from celiac makes it seem like common sense to ask for a bone scan. I doubt my primary doc or my gastroenterologist will be inclined to order one if I ask, though. They don't seem to want to order anything, not even a celiac test for my mom (a first-degree relative, come on!)

What testing is worth pushing for? I'm in my early 20s and female. 

[Scott Adams]

Welcome to the forum and hopefully you're glad to know about having celiac disease so you can treat it and avoid the many potential health issues that can come with untreated celiac disease.

It's possible your doctor didn't go to the trouble of doing an official Marsh score simply because the damage was very obvious in your case. To me it sounds pretty definitive, but if you also got a blood screening for CD feel free to share those results. With tTG blood tests scores that are 10x normal or higher a biopsy may not even be necessary to make the diagnosis.

A multivitamin is a good idea, and at the bottom of this article are some common deficiencies that you may want to be screened for:

This may also be helpful:

 

[celioops]

1 hour ago, Scott Adams said:

It's possible your doctor didn't go to the trouble of doing an official Marsh score simply because the damage was very obvious in your case. To me it sounds pretty definitive, but if you also got a blood screening for celiac disease feel free to share those results. With tTG blood tests scores that are 10x normal or higher a biopsy may not even be necessary to make the diagnosis.

 

Thanks for the warm welcome, Scott. My TTG and other bloodwork was really high (20x the diagnostic minimum). It's totally possible that they didn't bother with a Marsh score. I see them mentioned so often online I thought it was just a default to get one!

[Scott Adams]

I also thought it was the standard of practice when doing a biopsy for celiac disease, however, we've seen a lot of strange things in this forum that doctors are doing that can't be explained, for example not telling patients to eat gluten for at least two weeks before a biopsy, or for 6-8 weeks before a blood test. Many doctors, don't know the protocol for celiac disease screening, which includes NOT going gluten-free until all tests are finished.

If you were 20x normal for tTG, there is no doubt about your diagnosis. In Europe they won't even do biopsy, and diagnose it if your results are 10x normal.