How Did You Tell Your Friends/family?

[Suezboss]

I keep trying to explain this to my friends and family and they don't get it, adn I feel like i'm repeating the SAME story 100000000 times.

with the exception of my mother (who had celiac as a baby) nobody understands that this is a serious disease, and that I CAN'T contaminate food... (oh, c'mon, you can use the same knife, it woul't be on it.. )AHHHHHHH so of course they know that b/c it's new to me, that I don't really know what i'm talkign abou teither...

What did you guys say to explain??

[pixiegirl]

Oh I'm not sure its about how you explain it but to whom you are explaining it.

I think they fall into a few groups:

Those that listen and understand.

Those that listen and for whatever reason, just don't/can't get it.

Those that don't care.

In my experience I have 3 in the first group (my mom, my boyfriend, and my best friend)

Most everyone else falls into the second catagory for various reasons: they are mildly self involved so they didn't listen that well, those that just don't have any knowledge about nutrition (now this isn't a friend but I had a sales woman in Trader Joe's tell me gluten is only found in white bread and I can eat any other sort of bread... wheat, corn... I tried to explain that wheat flour is wheat flour but she stuck to her guns and said I needed far more education) and those that just aren't that bright. I know a ton of people in this group and I just don't let them cook for me or I oversee everything, the entire prep process, period.

This last group I actually still have a few people in it... however I consider them aquaintenances.... they know someone I know so I'd never eat at their homes.

I do think if you can find a short article (lots of people in the second and third have short attention spans) that points out the severe damage that Celiac can cause and gives examples of how it hides in food, that might help some in the second group slide into the first group.

It did with my best friend... she was firmly in the second group until I showed her something about how gluten can hide in spices, and by other names... that its in salad dressings, sauces, corn cerals, etc.... well she immediately moved into the first group... I was down at her house for a week and she and I went shopping the first day I got there so she would be sure to have gluten-free ingredients and snacks for me.

But by and large I think we have to just live with this.

Good luck, Susan

[angel-jd1]

with the exception of my mother (who had celiac as a baby)

Celiac Disease isn't something that goes away. Doctors used to THINK it went away, but it doesn't. If she had it as a baby, she STILL has it. Convince her to go gluten free with you, otherwise she is doing terrible damage to her body!!!

On the topic of the question. It wasn't really something I had to tell my family, they already knew. I was sick , very very very sick. They knew that this was going to make me feel better so they are supportive.

It takes time to learn all the "tricks of the trade". Sooner or later they will get the hang of it, in the meantime you have to keep reminding them.

-Jessica

[KaitiUSA]

Yes, if your mom had celiac as a baby she still has it. It will not go away. You may not have symptoms but your body still gets damage after gluten. She needs to be gluten free if she was diagnosed.

My parents knew already because they knew how sick i was so they were very helpful. My extended family did not get it and still does not. Some are more helpful then others.

If you tell them that celiac is an autoimmune genetic disease that will attack your intestines in response to gluten so you have to follow a gluten free diet then that should get them to realize how bad it can be.

Maybe showing them some articles about what celiac can do if ignored would also help. Good luck Remember though...some people will get it and help and others will look at you like your not from earth

[Carriefaith]

I think you just need to be firm with them. Say that even crumbs can make you sick and cause intestinal damage and then be very strict about it even if they roll their eyes, huff, or get annoyed. I've been in similar situations before with people and they are not fun.

I think Susan is right about this

I think they fall into a few groups:

Those that listen and understand.

Those that listen and for whatever reason, just don't/can't get it.

Those that don't care.

From my experience, people I know well mainly fall into the first two groups.

[Suezboss]

Thanks Everyone!!!

I will also mention this to my mom... thanks for the info.

[mouse]

I agree with everyone. People do seem to fall in three catagories. The first catagory includes the people who were trying to help prevent me from dying and I truly was that sick. They are easy to deal with and also to eat anything in their homes. They always tell me the ingreds. if I see something yummy (and the brand names). Then I know if I can touch it. They know about cross contamination. The second group is harder because some are friends and I won't eat in their homes, unless I bring something for me to eat. The third group I don't bother with. I am 63 and I don't have the energy to deal with their stupidity. I explain once and since they are not listening or what to argue. I am rude and walk away. I have lunch or sometimes breakfast with someone in the first group and before I can speak up in a restaurent, she is telling the waitress what I can't have and about cross contamination. She then asks what they suggest. I get a charge out of that. She has not done any research, but has listened to every word I have said. Ahh, if only everyone would do that, how great that would be for all of us.

Armetta

[swittenauer]

So far my parents & my husbands parents seem to understand what is happening with him & celiac. My husbands brother in law has the skin type of the disease so he understands. A LOT of people just don't get it & a few people have even said they wish they could have it for a while to lose some weight. I need one reliable source on the internet that I can just print out & show them the severity of the disease. Any suggestions?

[tarnalberry]

At some point you stop explaining, and you just do what you have to do. When they say "you can use the same knife", you just say "no" - no explanations needed. In the end, it doesn't matter if they understand, only that you do what you need to do.

[printmaker81]

The first time I explain it to someone, I break it down as simply as possible. I tell them it is a genetic autoimmune disease. When I eat anything containing the protein found in wheat, barley or rye, my immune system reacts to it as if it were poison. The big problem is that when my immune system goes to attack this protein, it can't tell the difference between my body's healthy cells and the cells of the wheat protein (gliadin, sp?), so it destorys my small intestine right along with the wheat. This weakens my body and immune system, so it causes all kinds of problems just like any other autoimmune disease. It's a simplification, but it usually works. I also like to through in that studies have shown less than .1 g of wheat causes this reaction, so even the slightest bit of contamination is a problem. If I have the time, I then explain that in 6 months to a year the damage that was done to my intestines should be healed up for the most part, but the reaction I get from eating gluten will always be with me.

If they, don't get it after explaining it a couple of times, I just let it go and make sure I don't get glutened because of it. (Except with my family, they will all be pestered with statistics until they get test!!)

[kabowman]

I have one more category to add:

Those that listen but don't really believe or think you are crazy/making it up

My immediate family, those that live in my house, all fall into the fully believe and listen category, everyone else, including my parents and in-laws, seem to fall somewhere else, with a few exceptions.

[watkinson]

The problem is that most people just have never heard of such a thing. Maybe it sounds to them like we made a choice, like being a vegetarian or vegan.

I always start with something most people know about. Multiple sclerosis. Everyone has heard of MS but they don't really know what that is either. Any autoimmune disease is basically the same in one regard...Our immune systems are screwed up. A healthy immune system is supposed to attack bad bacteria, viruses, poisons, ect. In MS The immune system cannot distiguish between a virus, bad bacteria ect. and our own nervous system. The immune system thinks our nervouse system is the enemy and starts to kill it off. The symptoms start with numbness in the hands and feet and progresses until the person is crippled, can't use their hands, can't see, can't hear, eventually killing the brain and they die.

With Celiacs, the immune system confuses the gluten protien with our bodies own cells. Staring with the intestine. As the intestine is destoyed we can no longer absorb nutriets, causing huge malnutrition problems along with a miriad of other diseases and syndromes.... Diabetes, thyroid disease, fibromyalgia, chronic fatigue, peripheral neuropothy, (nerve damage) depression, iron, vitamin B and K deficienties and cancer only to name a few. We eventually get leaky gut (holes in the intestine) causing the protiens to leave the intestine and enter the bloodstream sending the protiens all over our bodies, causing the antibodies to attack everywhere. The end result for an untreated celiac is a completely compromised immune system leaving the door open for every disease, and early death (caused by problems to do with malnutrtion) and probably Cancer!!

The question of how much gluten causes the reation? Whether it's a whole bucket full or a small crumb, our bodies do not distiguish the amount. A speck of gluten will send out the same number of antibodies as that bucket.

Others have told you to print out articles for people to read, great idea, also maybe print out this thread. Those who love you will want to be the most understanding and helpful. When they see it as the disease it is, they will understand.

Wendy

[watkinson]

Oh also...

I was so sick that not eating gluten was the obvious "cure" to every one around me. Anyone who knew me knew it was a miracle, so they had no difficulty understanding. But some people don't actually show any symptoms. So the people around them don't get it when they say they have to drastically change thier diet because they are sick. "What do you mean sick? you look completley healthy to me!" They don't understand that the same amount of damage is being done wether you are sick right now or not. And that eventually you WILL be sick.

The earlier you start being gluten-free, the sooner your body heals so that you don't end up with any of these diseases.

Wendy

[Carriefaith]

At some point you stop explaining, and you just do what you have to do. When they say "you can use the same knife", you just say "no" - no explanations needed. In the end, it doesn't matter if they understand, only that you do what you need to do.

I totally agree. Some people will never get it no matter how much you explain. When I am around people like that I am extra cautious and watch my food like a hawk, even then there are mistakes In my experience, things can go bad if you leave food unattended around those that easily forget or who don't get it. If you are nervous, make sure that you clearly label everything and stay in the kitchen when you are cooking something.

[Merika]

Did anyone here read those VC Andrews books in the 1980s? Then you'll know what I'm referring to here

Sometimes when telling an acquaintance who asks what is celiac, or what's it like, or what does it mean...and the situation doesn't call for a lengthy accurate medical description, I say that I have a genetic disorder that makes my body read gluten as poison, and that eating it for me is like eating a little bit of arsenic every day. It won't kill me immediately, and I can recover from it, but it is VERY VERY bad for me.

That usually gets the point across, short and sweet

Merika

[ianm]

I was so sick for so long that when I finally figuired out what was wrong the improvement was so dramatic that most people got it. Some don't completely understand it but they can see that was the problem. My wife didn't get it all so she became my ex-wife.

Some people still can't believe that food intolerances and allergies exist but they are idiots and are not allowed to be a part of my life, even if they are family.

[Suezboss]

Wendy

<{POST_SNAPBACK}>

Thanks Wendy,

Good ideas!!

-sue

[watkinson]

Hi sue,

hope we helped!

Merika,

O...MY...GOODNESS...I loved those books!! The Dollanganger family right? Wow I never thought of that, but yeah just like those kids, dying a little each day!

Hmmmm... You know...the grandma also gave them donuts every morning for

breakfast... Hmmmmm

Wendy

[Merika]

O...MY...GOODNESS...I loved those books!! The Dollanganger family right?  Wow I never thought of that, but yeah just like those kids, dying a little each day!

Hmmmm...  You know...the grandma also gave them donuts every morning for

breakfast... Hmmmmm 

Hi Wendy

Hmmmmm....maybe it wasn't the arsenic, it was THE DONUTS!!!!

Merika