Routines With celiac disease

[racer73u]

I was diagnoised about 6 yrs ago with celiac disease. I started after DX using organic products. Then stopped, I have not ever been gluten free. I looked online when I was DX and didn't find much info so being young and dumb I figured eh must not be to big of a deal and would just deal with the symptoms. Well now I have learned is a big deal and so many things can happen from celiac disease. I am wondering what is considered routine on health checks and what I should be doing to moniter celiac disease. I have not been to a GI since DX I am not big on going to Dr's, I only go for my yearly health exam and the occasional strep/cold issues (severe). So as you can tell not big on Dr's. Just wondering if you all could give me some advice.

Thanks so much.

[ravenwoodglass]

The first thing you need to do is to get on the diet strictly.

You should have your doctor do vitamin and mineral panels so you can supplement any that need to be supplemented. It is not uncommon for us to have thyroid issues so if you have symptoms that may suggest a problem with that also have that checked.

Some doctors will want to do another endo after 6 months to a year to see how your healing is progressing. If you were diagnosed with positive blood work then have them run the bloodwork again if you want after a few months to see if your levels have gone down.

I sure others will have more to add to this. Read as much as you can here to know what you have to do to keep yourself safe and ask any questions you need to.

[MitziG]

And dont be too hard on yourself. It was your doctor's job to educate you about the seriousness of the disease and the importance of being gluten free! But they often don't. My mom had her gallbladder out ten years ago, the doctor had his nurse call her after the surgery. She left a voicemail- "doctor says celiac sprue is evident, so eat a rice diet." That was it. Like you, mom blew it off- not even realizing that she had a DISEASE, and thinking that since her gallbladder was gone she would be fine now. It wasnt until ten years later when the rest of us were diagnosed that she even remembered!

[Celtic Queen]

I second what Ravenwoodglass said. A full blood panel with testing for vitamin and mineral deficiencies is important. Because our bodies do not absorb things as well as regular people, we're more prone to be vitamin deficient and iron deficient. I've also heard people recommend a bone density scan due to possible calcium deficiency.