How Long Undetected?

[006]

I was diagnosed in 2008. I found it by persisting with my doctor on a very mild abnormal liver blood test result. The result actually went back to normal just before my diagnosis. Previously, my blood was always normal. When I had my first tTg-IGA in 2008, the results were off the charts - as in insanely high. It took close to a year to get back to "negative."

Will it be a mysery or can I get some sense as to how long I have been triggered? Could it have been since childhood? That thought scares the crap out of me due to the cancer concerns.

Thoughts?

[ravenwoodglass]

It was easy for me to figure out since I developed DH in childhood. For many of us it is going to be hard to figure out since the disease process can be rather insideous.

Try not to be too concerned about the cancer issue. Your chances of having cancer related to undiagnosed celiac decrease to normal levels once you are gluten free for a couple years. If your gluten free now, healing and haven't developed cancer before your diagnosis you have a good chance of not developing a celiac related cancer now.

[006]

I read your reply in my other topic and noted how you were also a long term victim prior to diagnosis and going gluten-free. I thought you had a really positive attitude. There's so much out there about the increased risk. The perfect analogy is the 25 year cigarette smoker who finally got the strength to quit and five years later, he gets lung cancer anyways due to the past abuse. I can't deny that I worried about being that guy with respect to Celiac damage over approx 45+ years. There were so many medical mysteries as a small boy that apparently have become solved a couple years ago.

Do you have any good references on the diminished cancer risk for those who were undiagnosed for as many years as us before going gluten-free?

How have your recent EGD's looked? About 1.5 years after going gluten-free, my villi was showing mild to moderate atrophy. That was a principle factor in my worrying RE cancer.

[006]

There's so much out there about the increased risk. The perfect analogy is the 25 year cigarette smoker who finally got the strength to quit and five years later, he gets lung cancer anyways due to the past abuse. I can't deny that I worried about being that guy with respect to Celiac damage over approx 45+ years. About 1.5 years after going gluten-free, my villi was showing mild to moderate atrophy. That was a principle factor in my worrying RE cancer.

Are there any others out there who were undiagnosed and "glutened" for many years with thoughts on this?

[ravenwoodglass]

I read your reply in my other topic and noted how you were also a long term victim prior to diagnosis and going gluten-free. I thought you had a really positive attitude. There's so much out there about the increased risk. The perfect analogy is the 25 year cigarette smoker who finally got the strength to quit and five years later, he gets lung cancer anyways due to the past abuse. I can't deny that I worried about being that guy with respect to Celiac damage over approx 45+ years. There were so many medical mysteries as a small boy that apparently have become solved a couple years ago.

Do you have any good references on the diminished cancer risk for those who were undiagnosed for as many years as us before going gluten-free?

How have your recent EGD's looked? About 1.5 years after going gluten-free, my villi was showing mild to moderate atrophy. That was a principle factor in my worrying RE cancer.

My last endo done about 5 years after I was diagnosed was normal. It can take us up to a couple of years to heal fully. Are you eating a mostly whole foods diet? That will help you heal the fastest. Also if you have been getting CC'd off and on that can slow down the healing a bit also.

I don't remember where I first saw the 5 year timeframe for decrease in cancer risk. It may have been the NIH but I am not sure. You could try doing a search with celiac and cancer risk and see what comes up. I'll see if I can find some research for you tomorrow when I have more time. Try not to worry about it too much as stress isn't going to help matters any.

[psawyer]

006, your example of the former smoker who developed lung cancer is a worst-case scenario. Yes, that can happen. You can drive carefully and still be injured or killed in a collision. The risk of smoking-related disease decreases dramatically when you quit and stay that way for a few years. It does not go to zero. I am a former smoker who quit almost 21 years ago. My risk for smoking-related disease today is almost the same as that of someone who never smoked.

Every day that you remain gluten-free reduces your risk of celiac disease-related collateral damage. Focus on the positive effect of being gluten-free. You cannot change the past.