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No Re-testing/follow Ups Needed For Celiacs?

Veronica

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Veronica Rookie
Veronica
Posted

I was diagnosed with Celiac last year. Wow this is hard...espeacially when you LOVE food!!

I have not been back to my dr's office...although I did call my gastro dr's office they told me there was no need for a follow up. I was told when I was diagnosed that I needed another endoscopy(sp) after 6 months. Well it's been over a year...still suffering...and my dr told me to stay gluten-free and there's no need for any other appts.

Is that right? I've read alot of people having tests to see where their vitamin/protien levels are. I have no idea if my levels are ok or not.

Thanks in advance for any thoughts.

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ravenwoodglass Mentor
ravenwoodglass
Posted
  Veronica said:
I was diagnosed with Celiac last year. Wow this is hard...espeacially when you LOVE food!!

I have not been back to my dr's office...although I did call my gastro dr's office they told me there was no need for a follow up. I was told when I was diagnosed that I needed another endoscopy(sp) after 6 months. Well it's been over a year...still suffering...and my dr told me to stay gluten-free and there's no need for any other appts.

Is that right? I've read alot of people having tests to see where their vitamin/protien levels are. I have no idea if my levels are ok or not.

Thanks in advance for any thoughts.

Your regular Doc can order the tests for you. If you call the office they may even just give you a lab slip. It is a good idea to get your vitamin and mineral levels, at a minimum B12, iron, potassium, and folate. If you were diagnosed with a positive blood test it is also a good idea to run the panel again to make sure you are as gluten-free as you think you are. It is often hard in the first year or so to ferret out all the sources of CC and outright gluten. Have you eliminated gluten sources from your toiletries and makeup, pet foods, CC issues like sharing toasters, how much do you eat out, are you into arts and crafts? Gluten can hide in places you would never think about. It was 3 years before I figured out sharing the can opener with gluten pet food was getting me. Call your regular doctor and see if he will order the tests for you.

eKatherine Apprentice
eKatherine
Posted
  Veronica said:
I was diagnosed with Celiac last year. Wow this is hard...espeacially when you LOVE food!!

I have not been back to my dr's office...although I did call my gastro dr's office they told me there was no need for a follow up. I was told when I was diagnosed that I needed another endoscopy(sp) after 6 months. Well it's been over a year...still suffering...and my dr told me to stay gluten-free and there's no need for any other appts.

Is that right? I've read alot of people having tests to see where their vitamin/protien levels are. I have no idea if my levels are ok or not.

Thanks in advance for any thoughts.

As long as you're clearly recovering, you definitely don't need another endoscopy. Don't worry about that.

jenvan Collaborator
jenvan
Posted

If you are recovering and your blood work is okay, you don't have to have an endoscopy. I choose to. I do recommend follow-up bloodwork each year indefinitely though.

Veronica Rookie
Veronica
Posted
  • Author

Thanks for your replies. There's alot of support on this site. What a great place to be! I don't feel out of place here.

I was diagnosed last year by having an endoscopy and colonoscopy at the same time. My Celiac was confirmed by a biopsy. I have not had any blood tests. Just before my tests because the dr didn't know what was wrong with me. I lost 90 lbs...not intentionally, but glad it's gone! I have not been able to gain any weight yet. I just keep loosing.

I don't want another endoscopy believe me!! I just need to know if I'm ok. Thanks for the advice, I will take it.

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