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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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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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