17 replies to this topic

[2Boys4Me]

My son usually says he has celiac. Once, though, an adult he didn't know very well asked him (snidely) if he was too good to eat the pizza being served at the party. My son had been eating a bunless hamburger and a baked potato. His response, and in a somewhat rude tone of voice, was "I have a disease". I admit I was proud of him, even though he used a snotty tone of voice it was exactly what that adult needed to hear...put him in his place a bit.

[gf_soph]

I had positive blood work but a negative biopsy. In my own mind it is gluten intolerance, but one that is a subset of celiac as it resulted in severe illness and nutritional malabsorption. I also consider it possible that I would have ended up with a positive biopsy if I had left it a couple of years.

When the topic comes up with someone, I say 'have you heard of celiac disease?'
If they haven't, I just say that I get very sick if I eat gluten, which is the protein in wheat, rye and barley.
If they do know what celiac is, or are very interested, I might go in to more detail. Often they mention someone else they know with a gluten problem, and if they're interested I will explain that technically I have gluten intolerance, but that it makes me just as sick as a person with celiac. I've even gone so far as to discuss the state of research etc with some people, it just depends on the person.

I've had a lot of positive discussions with people by approaching it in this way, you can make it as brief or as detailed as you like and tailor it to their understanding.

[sb2178]

"gluten sensitivity"

same boat of negative biopsy, so I can't claim full-blown celiac although blood work pointed in that direction and the diet solved lotsa problems. gluten challenged brought 'em back.