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Telling Your Friends

TrillumHunter

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TrillumHunter Enthusiast
TrillumHunter
Posted

I have a good friend who lives across the state. She called me from work because we are going to see her soon. So I told her about the celiac like this-- it's a genetic disorder that causes an intolerance to the gluten in wheat, rye, barley. I told her all the problems I've had with anemia are caused by it and the fatigue and so on. So at the end of our conversation she says, "that's ok, you can just have it when you know your going to be home for a few days." She had to go so it stopped there. Obviously I missed something in my explanation. She's super smart so I'm sure she'll do some reading on her own. But I'm curious to know if others have a short, clear canned answer they use for everyone?

I'm not upset with her but myself. I think I just wanted her to know I was okay and actually doing better. But I don't want her to think it isn't serious and crucial that I avoid gluten.

Help me, o wise ones!

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Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

I'm not necessarily a wise one, but is it possible she was joking? Or maybe "intolerance" sounds mild, not at as severe as an allergy. My immediate question to her would be, "why on earth would I want to waste a few days at home with anemia and fatique?"

You might want to mention that unchecked, it it is linked to all kinds of other autoimmune disorders: lupus, fibromyalgia, IBS, MS, autoimmune thyroid diseases, diabetes, not to mention lymphoma. And because of that, it is a lifelong strict adherence to the diet, just like those with peanut allergies stay away from peanuts for a lifetime.

Canadian Karen Community Regular
Canadian Karen
Posted

I find that when you use the words "toxic" or "poison", it gets the point across better. After all, to celiacs, that's exactly what gluten is. Would you knowingly ingest rat poison or any other toxic substance? Nope.

Karen

2kids4me Contributor
2kids4me
Posted

Remember the KIS rule - Keep it simple.

When I tell people about the kid's celiac - I start with - we found out why the kids were so sick. They have celiac disease and cannot have gluten - which comes from wheat, rye, barley and oats. I leave the floor open for questions. I found that most people tuned out - unless they were the ones asking questions.

We are in charge of what goes in our mouths. If someone else doesnt quite get it - oh well. As long as we "get it".

If it is important that this friend truly uderstand what celiac is and how it impacts our health and our diet choices (in or out of the house)..then print off one of the descriptions from a celiac website. and send it to her - via email, fax or old fashioned mail. Let your friend know that you are sending it so that there wont be a misunderstanding when you turn down a food dish if you are woried about cross contamination.

see: https://www.celiac.com/st_main.html?p_catid...-08107164766.75

Sandy

zansu Rookie
zansu
Posted

I tell people that celiac means my body thinks wheat, rye, and barley are poison and has an autoimmune reaction to them, much the same way it would to poison. (when pressed, sometimes I add that my body seeks to rid itself ofg the offending substance as quickly as possible. They stop there.... :rolleyes: )

It is technically fairly correct, and it takes care of both the severity issue and the "as long as I stay away from it I'm fine" part.

People's subconcious reaction to the word poison is appropriate, auto-immune brings in some more concepts, and I think several people on the board have pointed out that subconcious reaction to "intolerance" is to equate it with common lactose intolerance (so you get a little gassy...; if only they knew :lol: )

Nancym Enthusiast
Nancym
Posted

You really have to keep it simple because people don't understand. Call it an allergy if that makes it more understandable, if they're curious, they you can go into the details. But most of the their eyes glaze over if you get too technical.

Phyllis28 Apprentice
Phyllis28
Posted

I keep it real simple. I explain that if I eat any food containing wheat, oats, rye or barley I will get very sick. After this explanation, I answer any questions that may arise.

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blueeyedmanda Community Regular
blueeyedmanda
Posted
I find that when you use the words "toxic" or "poison", it gets the point across better. After all, to celiacs, that's exactly what gluten is. Would you knowingly ingest rat poison or any other toxic substance? Nope.

Karen

I like the idea of using toxic and posion, those are always eye opening words :)

Nantzie Collaborator
Nantzie
Posted

I tell people it's kind of like having a hangover and food poisoning at the same time on the day after you way overdid a workout (I get nerve pain and mobility issues too).

"At the same time" gets their wheels turning on their own personal experiences because most people have experienced each one of those at least once. And the idea of having all of that all at once brings it into perspective a little more clearly for them.

Nancy

mftnchn Explorer
mftnchn
Posted

What if you are not a highly symptomatic celiac? If people ask further questions I can't in all honesty say that I immediately get really sick if I eat gluten.

Perhaps after I have been gluten-free long enough I can be more clear.

2kids4me Contributor
2kids4me
Posted

If people ask further questions - depending on who asks - you can simply describe celiac disease in general. We dont have to reveal all the details about how sick we get. We can't have gluten - plain and simple. It makes me sick. If you dont get sick for days - does that part matter?? You get sick, it destroys your small intestine. When and how are irrelavent.

People asking questions is a good thing, offer to get a pamphlet for them or tell them how to go about finding more details. If they are asking so they know what to feed you - have a sheet done up on the computer that you can print off as you need it - a list of favorite foods, brand names.

Food for thought anyway ...... :rolleyes:

Sandy

TrillumHunter Enthusiast
TrillumHunter
Posted
  • Author

Thanks, you guys. I've thought about it alot today. I think, despite having different problems for 13 years, she would have never have thought of me as having anything serious, genetic or chronic. I was a high functioning celiac. :rolleyes: I went to college, had three kids, homeschool, church yadayayada... When I told another friend she was really surprised that I would have any "sickness" at all. So, from their perspective, it must seem odd to think of me as getting better when they wouldn't have thought of me as sick. Clear as mud? She is a good friend and will take the time to learn about it I'm sure. She would be the first person to make sure there was something gluten free and yummy for me at a party! :lol:

Thanks for all your help!

Monica

2Boys4Me Enthusiast
2Boys4Me
Posted
What if you are not a highly symptomatic celiac? If people ask further questions I can't in all honesty say that I immediately get really sick if I eat gluten.

Perhaps after I have been gluten-free long enough I can be more clear.

My son is asymptomatic, so we relate it to smoking. Just because you can't see a smoker's lungs turning black doesn't mean they aren't.

We cannot see my son getting sick, but when he ingests gluten, his intestines are getting damaged whether we have any obvious evidence of that or not.

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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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