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What Do You Say? How Do I Explain Celiac?
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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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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!

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

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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."

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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).

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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.

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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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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!

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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!"

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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.

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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.

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

I'm totally stealing this! B)

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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.

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"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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    • Oh, Trish at the GlutenFreeWatchDog tested Planter's honey roasted peanuts three years ago.  The can did not state gluten-free, but showed no gluten ingrediants (per Kraft policy).  Test result: less than 5 part per million which is pretty much gluten-free.  
    • What if it were something else that glutened you?  Maybe you ate too much of a good thing?  I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process.  Paramedics, ER doc and Cardio all thought I was having a heart attack.   No.  It was sheer gluttony and bad bones.  Not good to overload with a damaged gut.    Maybe you did get some contaminated nuts.  Afterall, anything processed is suspect.  What might be well tolerated by some, might be too much for others.  We all have our various levels of gluten intolerance.   The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?)  My hubby has been gluten-free for 15 years.  When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him.   Problem was he was healed and I was not.  Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance.  So no bread for me unless I make it myself using a different gum.   Too lazy, so I do without.   so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut.  I wish this was easier!    
    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
    • I react to both wheat and barley.  I've opted to just go completely gluten free, for the sake of simplicity and my sanity.  I don't have a diagnosis of celiac disease, but I strongly suspect it.  Unfortunately, I'm not willing to endure the misery of staying on gluten long enough to pursue further testing.  I just know I need to avoid the gluten grains, so I do.  
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