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What Follow-up Should I Receive Post-diagnosis?

CCR

By CCR
in Doctors

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CCR Newbie
CCR
Posted

After my endoscopy and diagnosis, the gastroenterologist basically said "Bye. Go gluten-free. See you in a few years. You might want to find a nutritionist through your primary care provider."

So now, 3 months later, I am having my first appointment with my primary care provider and I don't know how savvy she'll be about celiac (not very, I fear, since she resisted authorizing bloodwork for my sister after my diagnosis). I need to take charge of my care, right? So I want to know what I should ask for when I see her on Monday.

I was anemic (the symptom that led to the endoscopy) so I know to ask her to check my iron levels. Anything else? Specific vitamin deficiencies, maybe?

A celiac center opened at a hospital about 30 minutes away (at Saint Barnabus in NJ) so if this doesn't go so well, I may head there next. But I like my doctor and I want to give her a chance first.

Any tips?

Carin

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mamabear Explorer
mamabear
Posted
After my endoscopy and diagnosis, the gastroenterologist basically said "Bye. Go gluten-free. See you in a few years. You might want to find a nutritionist through your primary care provider."

So now, 3 months later, I am having my first appointment with my primary care provider and I don't know how savvy she'll be about celiac (not very, I fear, since she resisted authorizing bloodwork for my sister after my diagnosis). I need to take charge of my care, right? So I want to know what I should ask for when I see her on Monday.

I was anemic (the symptom that led to the endoscopy) so I know to ask her to check my iron levels. Anything else? Specific vitamin deficiencies, maybe?

A celiac center opened at a hospital about 30 minutes away (at Saint Barnabus in NJ) so if this doesn't go so well, I may head there next. But I like my doctor and I want to give her a chance first.

Any tips?

Carin

Since she was so ill informed in not wanting to authorize your sister's testing, and your sig shows 2 other family members with celiac....I would opt for the celiac center, and use the FP for generic problems, reminding her to write "gluten free" on all prescribed meds. Be sure the center is in your insurance plan though!!

I doubt she will be able to monitor the basics(vitamin levels, minerals,bone densities, CT scans when indicated,etc..) for you, and be able to prod the GI's into repeat scopes when needed. It takes time and energy to spend with celiac patients...a lot of thought process goes into it, and if you don't know much about the disease, you can miss way too much.

I could be wrong, and you could energize her into learning, but do you think she has the guts(sorry, bad pun) to do so?

mamabear Explorer
mamabear
Posted

Sorry, 2 total family members including you......I'm so tired I'm not reading right!

CCR Newbie
CCR
Posted
  • Author

You're probably right. Maybe I will just do the basic iron bloodwork with her (she's the one who originally spotted the anemia) and take the rest elsewhere. Good point about the insurance. I'll check that first.

Thanks,

Carin

greeneyes33 Newbie
greeneyes33
Posted

The Celiac Center at St Barnabas doesn't accept insurance, but they will give you all the information and stuff to submit to your insurance company to reimburse you. You might have to do some time on the phone with your insurance company, I did, quite a long time too, but I did get them to say that they will cover it.

I dont have out of network coverage, so I had that issue to contend with. I had to go back and forth with them for awhile and get different codes for things, but all is ok.

Good luck. I posted on the other post about the center that I loved it and it was totally worth it even if the insurance company wouldn't pay for it.

I'm not sure about the screening for celiac and all other related tests. I'm assuming that it would be covered like any other medical thing. St Barnabas is in my insurance plan, so I guess thats how that would go.

Good luck with it all. Just call the Celiac Center and talk to then. They will point you in the right direction. I wouldn't worry about your PCP. In my experience, they have never done much good for me, ever. A cold, strep throat etc, yeah, but for everything else, I'm off to a specialist.

  • 3 weeks later...
ek327 Newbie
ek327
Posted

for evaluation, due to intestinal malabsorption (they can use celiac or the malapsorption as the diagnosis code when they order the labs) you need to have:

iron studies

ferritin

folic acid

magnesium

calcium

vitamin d

vitamin k

vitamin a

you also should have a bone density done. same codes apply.

don't write off your primary care provider. as generalists, there is alot that they have to know. sometimes they want to know things and are very willing to learn and do the research. if they aren't willing, then you need to find someone who is.

After my endoscopy and diagnosis, the gastroenterologist basically said "Bye. Go gluten-free. See you in a few years. You might want to find a nutritionist through your primary care provider."

So now, 3 months later, I am having my first appointment with my primary care provider and I don't know how savvy she'll be about celiac (not very, I fear, since she resisted authorizing bloodwork for my sister after my diagnosis). I need to take charge of my care, right? So I want to know what I should ask for when I see her on Monday.

I was anemic (the symptom that led to the endoscopy) so I know to ask her to check my iron levels. Anything else? Specific vitamin deficiencies, maybe?

A celiac center opened at a hospital about 30 minutes away (at Saint Barnabus in NJ) so if this doesn't go so well, I may head there next. But I like my doctor and I want to give her a chance first.

Any tips?

Carin

CCR Newbie
CCR
Posted
  • Author

Thank you for the info. I had the appointment last week and asked for some of those tests, plus a celiac panel (which I never had done before) but I will see her again in a few months and I'll ask for the rest.

I am going to start to ask for copies of these tests, I think. It seems many people on the forum do that, and it sounds like a good idea.

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