How has Celiac Disease affected you?

Question

my younger cousin was recently diagnosed with Celiac Disease, and now she is required to have a gluten-free diet.

i'm looking for ppl who have this disease to tell me more about themselves:

when did you find out you had it?

how has it affected your life?

Answer 1

I started getting very sick about 3 years ago (35yrs old), hunted for answers but didn't find any. CD is in my family but doctors laughed at me. A lot of doctors still don't understand this disease.

After ending up in hospital I gave up on doctors and went gluten free myself. I have finally found a doctor who supports me and given me an official diagnosis.

My life changed dramatically once I got all of the gluten out of my system (about 4 weeks). I felt human again and it was so wonderful not to be rushing to the toilet all day.

The diet is a bit hard at first, and can be tricky because gluten is in all kinds of things that you wouldn't necessarily think of - like soy sauce, lipstick and even the glue on the back of envelopes.

But when you feel so much better on the diet it makes it worthwhile.

The hardest things are dining out - you have to check that restaurants and cafes understand about gluten free and contamination issues.

It's also hard eating at friends places, as they may not understand just how sick it can make you and don't understand the care you need to take. Good friends will care though and do their best to make sure food is safe for you.

Answer 2

At first it is a real shocker of a life change, but as you start to feel better and you can return to feeling normal physically, it more than makes up for the loss of some of your fav. dishes (unitl you can learn to make them gluten free, so even that is temporary).

You have to change the way you eat, and especially the way you cook. Your cousin will have to re-learn how to cook, learn to read labels, and develop the will power not to eat what will get her ill.

The hardest part is getting other people to take you seriously or to begin to even understand how careful you must be. Gluten is hidden in a lot of unexpected places, and she will probably need to spend quite a bit of time learning how to keep herself safe in a world full of gluten and gluten eaters. Some people simply do not care if they accidently get you ill or think that you are exaggerating how careful you need to be. Others actually get annoyed that you need a special diet because it resticts them in certain situations. It is hard not to get angry at people like that at times.

Parties and gatherings can be hard because you have to plan ahead and bring your own food a lot of the time, So, it can be awkward at times.

You have to constantly be on alert, even my own GI doc sometimes forgets to write "gluten / lactose free on my prescriptions , lol!

Here is a good link to a very helpful site, if your cousin goes to forums, there are links for everyone! There is also good info for people who have friends and relatives with the disease.

http://www.celiac.com/

Since this is an genetic disease, you need to be on the lookout for symptoms yourself. Unless one of her parents are also diagnosed, there is no way of telling which side of the family the genes are carried on. I do hope all members of her family have been tested as well!