Once You Have The Diagnosis, How Often Do You Go For Checkups?

[SaraKat]

Now that I have been diagnosed by blood and biopsy, how often do I need to go to get blood drawn/checkup? What has your experience been? I have an appt 9/17 to go over the full results, but I doubt he will do more blood then. Do you go a couple times a year? What blood tests (aside from celiac and iron levels) should I have tested?

Thanks!

[ravenwoodglass]

Most doctors will wait at least 6 months to retest. Since I didn't show up in blood work retesting with panels is useless for me. My GI wanted to do an endo at that 6 month point also. Since I was doing great I skipped it but did have the endo done when I had my routine colonoscopy a few years later.

[Kim27]

I was diagnosed in April. After the biopsy my doc communicated with me a lot via phone or email. I haven't actually been back to see her (going to tomorrow). She sent me for some vitamin/mineral tests right after the biopsy, to see a dietitian, and for a bone scan. I just got some more vitamin/TTG tests run last week in anticipation of the appointment tomorrow. She has made no mention of another biopsy.

[T.H.]

My GI doc saw me at 6 months to get another blood test, and seems to make appointments every 6-12 months after that, depending on how people were doing.

When I was first diagnosed, I was tested for a whole host of vitamins and such, especially vitamin D levels, calcium levels, and vitamin B levels - often a problem for celiacs. I think vitamin A, zinc and a few other vitamins too. He had an ultrasound scan done to check some of the most common organs that can be damaged by nutrient deficiencies. He had me tested for food allergies, too.

I believe their were a few others, like a test for rheumatoid arthritis, testing my thyroid levels, and...whatever tests for diabetes? Mostly because these can cluster with celiac disease. And...I think he checked me for H. pylori, as well, which is a bacterial infection of the gut that celiacs can get more than others, I think?

My father, me, and my brother all tested positive for H. pylori, at least.

[gf-soph]

I think it will depend a bit on your general health as to how frequently you get checkups. To monitor the celiac, my Dr has used repeat blood tests to help see how the diet has gone, and it helped me to identify my glutening symptoms. I have been told that it can take 6 months for antibodies to reduce, and that was the recommended time to get those levels checked.

When I was diagnosed I was already very B12 and iron deficient, I was getting those levels checked at least monthly as they crashed quickly. I was sent for a bone density test as I have a family history of osteoporosis. I have also had thyroid, cholesterol, Vit D, folate and hormone levels checked, but I have had a lot of other health problems to try and work out.