Negative Blood Test, Now What?

[IMWalt]

Afetr years of having abdominal bloating, cramps, and gas, I decided to find out why. My daughter was recently diagnosed with Celiac, so I went on a strict gluten-free diet. My symptoms disappeard instantly. I went to her GI doc, and was told that it sure sounded like Celiac, but she said I had to eat Gluten for 1 month in order for any tests to work properly. Within days after eating gluten again my symptoms were back, and seemed to get worse as time passed. I had the blood work done and the celiac anti-body tests were negative as well as some inflamation indicators. They want me to have the endoscopy done, which I'm not really excited about. My wife says I have self-confirmed that I have celiac disease, but I am the kind of person who wants a black or white answer, not a gray one. All I know is that when I eat gluten during the day, my insides just churn, and if I don't eat any, I am fine.

Does anybody have a similar experience, and how did you resolve it? My daughter was diagnosed via the blood tests, and her biopsy was negative. I am concerened that if my biopsy is negative, then what?

Thanks

Walt

[Lisa]

Hi Walt and Welcome this site.

Celiac is an inherited disease. Your daughter got it from somewhere, you or your wife.

Blood work can be highly unreliable and it always would depend on how long you have been consuming gluten. And endoscopy/biopsy can also be unreliable. These tests can rule Celiac in, but the cannot rule it out.

Positive dietary response is also a diagnosis. But, if you are the doubting Thomas type (and there are many here) you can have some gene testing if you do not want to pursue the endoscopy (which would mean that you would have to consume gluten again and create additional damage should you have Celiac).

Many, many people here are self diagnosed and quite please with their decision. I have found that those who would like a defined answer, also have grave misgivings about giving up gluten for the rest of their lives. Once you learn to master the diet, it really is no big deal and quite easily adjusted to as time goes on.