Follow-up Testing - What Should Be Done?

[GeneC]

First, my apologies for not doing a thorough search on this section of the forum, but I didn't find an answer with a quick scan. Hope this is the right forum.

I've been diagnosed for almost 7 years. It was done via upper endoscopy w/ biopsy and a couple of blood tests (don't remember what they were). I've adhered to the gluten-free diet as best I could and never intentionally cheated. Lately I've been having abdominal/GI issues and wondering if I'm being secretly Gluten'ed. There's been no follow-up testing done in all of that time and was wondering if some testing now might at least reveal if I was getting gluten somewhere and perhaps be the cause of current issues, but I'm unsure of the right tests to ask my doc about. Suggestions or links to proper post DX follow-up care?

Thanks in advance.

[larry mac]

gc,

Have you changed doctors?

best regards, lm

[Jestgar]

You could consider having the blood tests redone, or another endoscopy. Or you might want to pursue other food allergies. Or maybe all of the above...

[AmandaD]

Hi there!

I know how frustrating all this Celiac junk can be, but I have such a great doc and she does a wonderful job of follow-up testing (without me having to say anything about it).

Here's what they did to me: I was diagnosed almost two years ago with blood and biopsy. She saw me first at 6 weeks where she required me to have a CBC (to look at anemia issues), a vit D blood draw (this is important because Celiacs don't absorb A,D,E or K well), and a bone dexascan to look for osteoporosis. My vitamin D was very low so she put me on prescription supplements and has seen me at 6-month intervals for the last two years - always rechecking my CBC and vitamin D level and my TTG level to make sure I'm diet-compliant. She also checks my thyroid or TSH level to make sure it's okay.

Whenever I have symptoms or concerns I get to talk with her or her nurse personally and she also allows me to talk with the nutritionist who initially saw me after my diagnosis. They also keep track of my mental health - making sure I'm not having too much anxiety about the diet, the stress of dealing with all the cooking, etc.

I go to the Univ. of Wisconsin hospital and they are very thorough with their Celiac patients. As of right now, they feel I can move to 1-year follow-up appointments where they will keep track of my bone density and any reoccurring or new symptoms.

Feel free to PM me if you need any more info.

-A

[happygirl]

from celiacdiseasecenter.columbia.edu:

7. Monitor serum antibody levels

Patients are advised to have follow-up antibody levels measured at 6 and 12 months. Most patients have normal levels by that time though it may take up to 3 years to normalize in some individuals. It is reasonable to assess antibody levels annually. This will serve to monitor adherence to the diet though is not sensitive for minor dietary indiscretions

Have you been eating out lately? Have you changed medications?

Keeping a food diary with symptoms might help pinpoint your problems, if they are gluten related.

Best of luck!

[GeneC]

Thanks all. Found specifics of what I was looking for at a university of chicago celiac program web site Open Original Shared Link