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What Do You Say? How Do I Explain Celiac?

mamaupupup

By mamaupupup
in Coping with Celiac Disease

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mamaupupup Contributor
mamaupupup
Posted

I just had two of my best girlfriends over for a glass of wine tonight and to talk about our twin girls' Celiac diagnoses and the impact. I realized I have a LOT to do to clearly communicate the gravity of the situation. These are really good girlfriends--the kind of friends that are honest, fair, but are also good, critical thinkers -- the friends that keep you honest. Here are some of the comments they made during our discussion that I didn't have good explanations for:

Friend: "So having one crumb of gluten might make one of the girls have a bout of diarrhea"

Me: "Yes, but it's having a long term impact too. Any amount of gluten damages the villi and sets them up for long term issues like cancer."

Friend: "Yeah, but doesn't everyone respond differently and some are more sensitive than others."

Me: "Yes, and we don't know what is going on in thier guts. We have to treat gluten like a peanut allergy or like rat poison."

I still wasn't convincing. They didn't understand why I had given away the playdoh and replaced their play lipstick with gluten free lip gloss, etc.

Wow! I didn't realize this was going to be so difficult to explain!

Suggestions?

Thanks Thanks Thanks!

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zimmer Rookie
zimmer
Posted

I just had two of my best girlfriends over for a glass of wine tonight and to talk about our twin girls' Celiac diagnoses and the impact. I realized I have a LOT to do to clearly communicate the gravity of the situation. These are really good girlfriends--the kind of friends that are honest, fair, but are also good, critical thinkers -- the friends that keep you honest. Here are some of the comments they made during our discussion that I didn't have good explanations for:

Friend: "So having one crumb of gluten might make one of the girls have a bout of diarrhea"

Me: "Yes, but it's having a long term impact too. Any amount of gluten damages the villi and sets them up for long term issues like cancer."

Friend: "Yeah, but doesn't everyone respond differently and some are more sensitive than others."

Me: "Yes, and we don't know what is going on in thier guts. We have to treat gluten like a peanut allergy or like rat poison."

I still wasn't convincing. They didn't understand why I had given away the playdoh and replaced their play lipstick with gluten free lip gloss, etc.

Wow! I didn't realize this was going to be so difficult to explain!

Suggestions?

Thanks Thanks Thanks!

I'm sorry about your friends - maybe you've opened their eyes a little and given them something to think about. Time will tell!

I've discovered that "everyone responds differently" to the information about celiac and gluten intolerance. Some people take that "crumb" of information and are very interested to learn. To some people that same crumb of information results in a case of mental diarrhea (for example, my mother, my sister, my brother....). I've learned not to bring it up unless it's relevant. Then if it becomes relevant, I start with a little information. If someone's interested, I attempt a basic education, and go from there. If I see their brain begin to cramp and eyes glaze over, then I just stop.

Our house is gluten-free. No play-doh, no anything with gluten. I don't have to explain to anyone or defend my position. It just "is."

I hope your girls get feeling better!

mamaupupup Contributor
mamaupupup
Posted
  • Author

Thank you! I love the crumb, D, etc references! I'll be able to remember better to adjust to each person! :)

Skylark Collaborator
Skylark
Posted

I agree with Zimmer about the usefulness of being sensitive to how much information someone can absorb. A lot of people never really "get" the impact of celiac. Even my friends who are gluten-free for various non-celiac health reasons do not eat a celiac-safe diet.

The answer that I find easiest for people to understand is: "Your immune system is designed to kill a single virus. A crumb of gluten is enormous by comparison. My immune system won't miss a trace of gluten, and when my immune system finds gluten, it gets confused and damages my small intestine. Even if it isn't enough damage to cause malabsorption it is increasing my risk of cancer and other autoimmune diseases."

Ninja Contributor
Ninja
Posted

I think it is also important to differentiate between symptoms and the actual auto-immune response: even if your twins don't react (with symptoms; overtly or right away) to that crumb, as Skylark mentioned, their bodies will find it and react (silently).

melikamaui Explorer
melikamaui
Posted

I agree with Zimmer about the usefulness of being sensitive to how much information someone can absorb. A lot of people never really "get" the impact of celiac. Even my friends who are gluten-free for various non-celiac health reasons do not eat a celiac-safe diet.

The answer that I find easiest for people to understand is: "Your immune system is designed to kill a single virus. A crumb of gluten is enormous by comparison. My immune system won't miss a trace of gluten, and when my immune system finds gluten, it gets confused and damages my small intestine. Even if it isn't enough damage to cause malabsorption it is increasing my risk of cancer and other autoimmune diseases."

SKylark, this is GREAT! Really helpful. I've never thought of it that way before.

K8ling Enthusiast
K8ling
Posted

SKylark, this is GREAT! Really helpful. I've never thought of it that way before.

I love that as well!!! It makes so much sense,,

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dani nero Community Regular
dani nero
Posted

I agree with Zimmer about the usefulness of being sensitive to how much information someone can absorb. A lot of people never really "get" the impact of celiac. Even my friends who are gluten-free for various non-celiac health reasons do not eat a celiac-safe diet.

The answer that I find easiest for people to understand is: "Your immune system is designed to kill a single virus. A crumb of gluten is enormous by comparison. My immune system won't miss a trace of gluten, and when my immune system finds gluten, it gets confused and damages my small intestine. Even if it isn't enough damage to cause malabsorption it is increasing my risk of cancer and other autoimmune diseases."

Love the explanation!

lucia Enthusiast
lucia
Posted

I tend to tell stories. People seem to get it that way. They can relate, I guess. I usually tell about accidentally putting a piece of my gluten-free bread in the toaster after being gluten-free for many months. It made me really sick. I emphasize, "Just the crumbs set off the autoimmune reaction!"

cavernio Enthusiast
cavernio
Posted

You should explain that even though someone's symptoms may be more or less severe, the immune reaction is still there, the physical damage to the intestines is still there. Geez, for a kid it's even more important to make sure they get all the nutrients they can get...it's almost scary how much of an effect what happens to us as kids has longterm effects on us as adults. Furthermore, the damage it causes can potentially last for years. It's not 'you either get diarrhea or you don't', it's 'you get damaged and it takes a long time to heal, AND you may get diarrhea'.

The fact that they may not have a heightened response to the gluten like vomitting and migraines is really just something to be thankful for.

Try a comparison like, oh...it's like not letting your kid play with knives because whenever they do, they always end up cutting their hands. Sure, your kid's not stabbing themselves in the eye with the knife, even though some kids who play with knives end up doing that, but the fact that they stab their hand is enough of a reason to never give your kid a knife.

Ok, that's not a great example because you never want to give your kid a knife, but you get the point.

jinkywilliams Newbie
jinkywilliams
Posted

My girlfriend has Celiac (as well as being casein-intolerant, a Type 1 diabetic and having kidney disease), and I find myself being afforded the position of explaining why she's not eating X food, occasionally. Conversation might go:

"So, why doesn't she eat x ?"

"She has Celiac ."

"What is Celiac?"

"She can't eat gluten. Twenty parts per million is what has been kinda defined as 'gluten-free', even though really that's twenty parts too much. At that level, it's like if someone makes her a salad and they accidentally put croutons on, they have to make a new salad because the residual crumbs are way too much. She can't walk into bakeries because of the residual flour in the air."

"Wow. What does gluten do to her?"

"It's like ninja stars to her intestines."

"Ow."

"Yeah."

This *appears* to provide the listener with both an understanding of the severity of the condition as well as some insight as to the lifestyle impact.

Hopefully as more documented success stories are accumulated, we can create a repository of methods that can be read and applied in different situations.

Skylark Collaborator
Skylark
Posted

"It's like ninja stars to her intestines."

I'm totally stealing this! B)

aeraen Apprentice
aeraen
Posted

Consider yourself lucky that you have friends that ask YOU, rather than talk about it among themselves. They are giving you the opportunity to educate them, rather than gossiping behind your back. Thank them for that, next time you talk. It will open their minds and keep you from appearing defensive in their eyes.

I love the explanations offered by others here. As an early gluten-free-er, I felt happy that I was not one of those "crumb people" who was sensitive to minute particles of gluten. Yeah, laugh at me now, but that was in the early stages of my education. I've learned since. So, if those directly affected can be so mis-informed, we have to forgive those who have never been affected by it.

Pandoranitemare Apprentice
Pandoranitemare
Posted

"It's like ninja stars to her intestines."

That is the best thing ever!!! :ph34r:

Your girlfriend is very lucky to have someone who is so supportive and well informed, who can also speak up with humor and eloquence to explain the severity of the condition so well.

Oh...and I am also stealing that line :)

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