Talking About Coeliac

[Kaycee]

This feels in some way like a religion. There are those of us who know all about coeliac, and then there are the others who do not know much or anything. I feel at times I am trying to preach a new religion, when all I want people to do is understand where I am at, and how gluten impacts on my life.

I will be staying with my parents for a couple of weeks soon, and since they are elderly, and coeliac has only hit me out of the blue and with no inkling of where it came from. There must be more in my family with it, as it is quite a large family, but so far I am the only one with it. Only about three of the immediate family have been tested and that was negative.

What I am asking is how do you explain the disease to other people, and how much do I need to say. My parents have no access to the internet, well even if they did, they would not, so I guess it is up to me to explain it for them. Any help out there?

[Guest Evelyn&Ric]

I just read a new book Celiac Disease a hidden epidemic by Peter Green, M.D. and found it very informative. The book covers the digestive tract, diagnosis, related conditions, medical management, and “coping with” topics. You may want to take the book with you and leave it lying around which may encourage family members to ask questions.

If you parents have a library near by, they can get free internet access with a library card. The staff at most libraries also helps people with the computers and internet. Best way to get them started is to get an email address so they can write to family and friends and it snow balls from there.

Hope this helps.

Evelyn

[Guest cassidy]

I have been on several business group trips where I'm have to eat with strangers. If they ask why I have different food I say I have a food allergy (I realize it isn't). Some people just leave it at that and don't ask anymore.

If they start asking more questions, then I answer them. If they ask what I'm allergic to I say gluten. If they ask more I say it is a genetic autoimmune disease and tell them what contains gluten.

This has worked with all sorts of people. If they are interested, I'll tell them all they want to know about it, but if they are just curious as to why I have different food, then I will leave it at that. I don't think celiac is that interesting to non-celiacs so I try to keep that in mind. However, people that care about you, may want to know more.

If they end up wanting to know a lot you could always go to the local library and get online and print some stuff off. This site has a lot of a good explanation.

[cgilsing]

I do the same thing and usually just tell people I have a food allergy to start out with. Most people understand that food allergies are serious and a lot of times that is the end of the conversation. If they want to know more than sometimes I explain that celiac disease isn't actually an allergy, but rather an auto-immune disorder that acts like an allergy. When my body has gluten, it falsely reacts as though the gluten is something harmful. Not everyone with celiac disease has exactly the same symptoms. For me the most obvious symptoms are flu like, but it also affects my skin, sleep paterns, and over time depression and hair loss. That's usually as much as people want to know....I feel like it's not too detailed, but if they have more questions I answer them. After that I just play it by ear..

[lorka150]

hi Kaycee,

why don't you ask your parents to take a book (perhaps Gluten Free For Dummies... it is very basic and easy to follow and was the ONLY book that helped my dad understand) and glance it over before you head there? or can you make them a pseudo info pack and send it to them?