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Who Do I Go To To Get Diagnosed?

Random Guy

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Random Guy Apprentice
Random Guy
Posted

hey everyone,

this is my first post.

my mom recently was diagnosed with celiac. This prompted me to ask for the celiac panel tests to get run the last time I was at the Dr's office anyway. The Physicians asst drew blood. He said something about celiac being an unpleasant way to lose weight. (i don't need to lose weight. that was just his bedside manner.

after a week, the Dr's office clerical person told me that the blood results were positive, although that doesn't mean that I have Celiac. She said that I need to talk to the doctor.

that Dr is never available to talk to. ever. she's kind of like the wizard of oz. i hear she's wonderful and knows everything, but i never actually see her.

so anyway...

I have an endocronologist because I have Grave's disease, which I know often co-exists with Celiac. But is a gastroenteroligist the right person to see?

FYI, I have a million questions.

For all of everyone's here sake, i hope the search function works well so i can find some answers. otherwise, you all might be sick of me pretty quickly.

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VydorScope Proficient
VydorScope
Posted

Basicly in American the Bisopy via Endoscopy is the "gold standard' for the test. So if you want an offical DX of celiac disease, you need to see a GI doc and get an Endoscopey.

Canadian Karen Community Regular
Canadian Karen
Posted

Hi!

Welcome to the board!

Vincent is right - for the official diagnosis, nothing less than the positive biopsy will be accepted.

Don't worry about asking too many questions, that's what we are here for! Also, if you have a question but think it is too stupid or silly to ask, don't worry about that either. The only stupid question is the one that is not asked.....

There are lots of really helpful and knowledgeable people here on the board to help you navigate through the gluten free world!!!! It may be overwhelming at first, but trust me, it does become easier......

Welcome!

Karen

KaitiUSA Enthusiast
KaitiUSA
Posted

Well, I was diagnosed by blood tests alone and was able to get an official diagnosis that way without getting a biopsy.I had the full panel and a gene test done and the results came back positive and I have one of the main celiac genes (DQ2) so the GI doc. didn't even want to do a biopsy.Biopsies have been considered the "gold standard" however that can only rule celiac in and not out. If you have beginning stages or sporadic damage they can easily miss it. So you can't go by that alone.

Do you know which blood tests you had done? Some are very accurate. Some doctors are using certain blood tests in te place of biopsies.You probably need to see a good GI doctor and have him look at your results and discuss them with him/her. Alot of doctors are not up to speed about celiac though so you need to do some research or ask for suggestions on good celiac doctors in your area.

I also have Graves Disease and yes thyroid problems are common with celiac.

Don't worry about asking too many questions...we are here to help. Feel free to email me anytime as well :)

danikali Enthusiast
danikali
Posted

Random Guy,

may I ask what your symptoms were? Besides Graves disease...........and did you just get tested because your mom came up positive?

Thanks!

Dani

Random Guy Apprentice
Random Guy
Posted
  • Author

thanks.

i need an 'official diagnosis' because i have no symptoms, so it's the only way i'll know if i need to do anything.

but if my celiac panel suggests celiac, then what's the chances of it NOT being celiac?

thanks much

-rg

tarnalberry Community Regular
tarnalberry
Posted

Well... You can be a bit pushy at the office and note that you want to schedule a followup WITH THE DOCTOR, as you are, after all, PAYING HER. I would also encourage you to get a copy of the records sent to you, so you can see the results themselves. Some doctors will DX on bloodwork and response to the diet along, not needing a biopsy, but many require the biopsy to prove intestinal damage. Either way, in order to be a responsible physician, she needs to follow up on the positive diagnosis - not "prescribing treatment" (which is just telling you to be gluten-free, but still) would be medically very irresponsible of her.

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VydorScope Proficient
VydorScope
Posted
thanks.

i need an 'official diagnosis'  because i have no symptoms, so it's the only way i'll know if i need to do anything.

but if my celiac panel suggests celiac, then what's the chances of it NOT being celiac?

thanks much

-rg

<{POST_SNAPBACK}>

Depends on which tests you had, and what score you got... can you post them? If you do KatiUSA can tell you the answer... cuase I always forget which is which :huh:

KaitiUSA Enthusiast
KaitiUSA
Posted
thanks.

i need an 'official diagnosis'  because i have no symptoms, so it's the only way i'll know if i need to do anything.

but if my celiac panel suggests celiac, then what's the chances of it NOT being celiac?

thanks much

-rg

<{POST_SNAPBACK}>

Which tests were run...was the whole panel with 5 tests run(tTG,EMA,IgA,IgG, Total Serum IgA)? Do you know which ones came back positive?

P.S:Oops guess I posted a few minutes too late...Vydor looks like we think alike lol...you beat me to it

Random Guy Apprentice
Random Guy
Posted
  • Author

Danikali,

i have no symptoms, at least not that i know of.

i got tested because my mom was diagnosed (also without symptoms), and becuase I have graves.

My mom got tested because her brother (my uncle) got stomach cancer, a bad one, unoperable, I can't remember the name. it was suggested that his siblings and kids get tested. Sadly, he passed away from the cancer 2 weeks ago. RIP Uncle Jack.

But who knows, maybe my headaches are caused by Celiac, and i've just been living with them.

or not.

so many many questions, but I'm trying to take it one step at a time.

step one: diagnosis

step two (depending on step one, of course), education.

thanks

-rg

Rachel--24 Collaborator
Rachel--24
Posted

Hi,

I have Graves Disease too. I never got an "official" diagnosis because I started the diet before any tests were run. I can see why an official diagnosis would be important in your case. I get bad symptoms so I guess it wasnt necessary for me to know "for sure". Good luck to you. :)

Random Guy Apprentice
Random Guy
Posted
  • Author

i wish i knew what tests were done, but, as of this minute, I don't

yesterday, when i spoke to the dr's office person who was not the dr, i did ask to have the results sent to me. years of graves disease tests has taught me something :P

If I have a disease, it's MY disease. I own it, not my Dr.

once i see what tests they ran, and how i scored, i'll post the results.

i was planning on waiting for those results prior to calling for an appt with a GI.

thanks for all the responses.

too bad i actually have to work at work today. i'd so much rather be researching this.

-rg

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