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How Do I Explain Celiac To Others?

misgiss

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misgiss Apprentice
misgiss
Posted

We are still waiting for some test results so not sure if he (3 y/o son) is positive for celiac but I'm having trouble explaining what celiac is to other people. I know that it's NOT an allergy to wheat but to get people to understand that's the only way I can expalin it. Plus, my FIL keeps saying that if we just "power through" his body will learn to deal with it and he'll be fine. "Can't you just give him milk and peanut butter and everything else he's allergic to? His body will learn how to deal with it." It was all I could do not to snarl and bite his head off. Are you kidding me? He really pisses me off some times.

Sorry, I'm getting myself all fired up. Anyone have any suggestions? TIA

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flagbabyds Collaborator
flagbabyds
Posted

You can explain it as an allergy to gluten, because people think that allergies are worse than intolerances, and they take them more seriously. Explain it like a peanut allergy, that nothing can touch the food and stuff, i feel that this is the way to get people to respond, because they can understand and allergy.

TCA Contributor
TCA
Posted

Another approach is to explain it for what it is - A genetic autoimmune disorder where the body mistakes gluten for a toxin. The toxin (gluten) damages the body causing multiple health issues, leading to premature death.

Someone on here once said to insert the word arsenic for gluten when explaining it to people, Will a little arsenic hurt anything??????

It took me a while to convince my inlaws as to how sensitive my son was, but once they saw how much healthier he is on the diet, I didn't have to say anything else. The first couple times he spent the night with them he got really sick from CC, but now that they see first hand how sensitive he is, they are making the extra efforts to be careful - he didn't get sick last time!!! :) I thank them every opportunity for how hard they are trying now.

sarahjo Newbie
sarahjo
Posted

i know how you feel. it took my aunts over a year to even consider that katarah could have celiac, i stuck to my guns with the idea and now that she does they are trying hard to understand. my one aunt even thinks she has it. (I laugh to myself because she gave me the hardest time, she complains about it, but yets eats bread....) i have said that gluten is poison to her and will eventually kill her if she doesn't avoid it. my daughters blood work was take to soon after returining to gluten, and they came back negative. so also trust you instincts. good luck.

VydorScope Proficient
VydorScope
Posted

When its strangers, I just say "my son has lots of food alergies" and thats it. 99% of the time they do not want to know more. Thats nly if it comes up in convo like, "Do you mind if I giv ehim some cookies?". I wnat to scream "OMG YOU FREAKING NUTS? GET BEHIND ME SATAN!" LOL, but I magange not to. Most times. :) Offering cookies to a toddler that I have to take from him! Sheesh!

With very close family like my Mom/etc, I spent time educating them. My family was very open to it, I did not face the problems some here did, though my mom keeps saying "its so hard to get my head around it". heh.

shayesmom Rookie
shayesmom
Posted
We are still waiting for some test results so not sure if he (3 y/o son) is positive for celiac but I'm having trouble explaining what celiac is to other people. I know that it's NOT an allergy to wheat but to get people to understand that's the only way I can expalin it. Plus, my FIL keeps saying that if we just "power through" his body will learn to deal with it and he'll be fine. "Can't you just give him milk and peanut butter and everything else he's allergic to? His body will learn how to deal with it." It was all I could do not to snarl and bite his head off. Are you kidding me? He really pisses me off some times.

Sorry, I'm getting myself all fired up. Anyone have any suggestions? TIA

I think that sometimes parents are the hardest people to convince as they always look at you as the kid who hasn't been around as long as them to be able to know more about ANYTHING. lol!! I hope that I never reach that point but odds are it will happen someday. :)

In some cases, explaining Celiac's as an allergy works. However, with relatives, I have found that that analogy doesn't hold water for long. Relatives see and interact with your child in more than a "passing" way. They eventually will run across another parent or friend of theirs whose child had food allergies and outgrew them and then you'll be faced with an all-out battle of trying to explain to them that their friend's scenario isn't applicable to yours. This is not an allergy that can be outgrown.

I've taken to explaining to them that Celiac is a genetic immune system disorder. Each time that a tiny amount of gluten in ingested, the body attacks itself and it causes painful lesions inside the intestines which can take days or over a week to recover from. Even a miniscule amount can have a person with this disorder writhing in pain for hours. Most relatives do not want to cause any pain to a child and so I have found that this explanation seems to convey the seriousness of the disease without invoking further conflict and assumptions that this will be outgrown. Of course, you'll still get the well-meaning response of "Can't he/she just take a pill for that?". :angry: "Ummm....NO. There is no pill for that nor do we need any when we stick to the diet."

Hopefully your family will get on board and be supportive. It's hard enough coping with the lifestyle change in the beginning without having to drag family members along behind you kicking and screaming. And as for the comment you got about the body "learning to deal with it".....no it doesn't. Almost every chronic and degenerative disease out there can be traced back to people ingesting things that their body cannot handle. It just hits different people at different times.

tarnalberry Community Regular
tarnalberry
Posted

People don't really need to 'get it', they just need to not give her gluten. Understanding... that's bonus points. Following your orders (you're the mom, after all), is all that's needed.

In the case of your FIL, a simple "It doesn't matter if you don't believe me, you can go do the research on the biomechanics of this disorder on your own then. Just don't give her any gluten, period."

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  • 2 weeks later...
mac3 Apprentice
mac3
Posted

My mother is an R.N. and has worked with celiac kids in the hospitals so I didn't have to explain anything to her. She was horrified yet very encouraging when my daughter, 9, was diagnosed in March. My mother-in-law, however, didn't know what it was. When my husband described it as an allergy to gluten she recommended that we take her to an allergist to have her "de-sensitized." I'm still very new at this and so to describe it to friends and family as an allergy...I've discovered...that they just don't take it very seriously.

Smunkeemom Enthusiast
Smunkeemom
Posted

I agree with Tarnalberry.

However, when I explain it, I go with the "her body doesn't think it's food" explaination. It goes like this.

"My girls have Celiac disease, so they can't have gluten"

"what's that?"

"Gluten is a protien found in grains, like wheat, rye, barley, and oats. Their body doesn't think it's food, so when they eat it, their body starts acting like it's been poisoned"

I try to throw in the words "poison" and "toxic" as much as I can.

If someone really is being an ass about it though, I just don't let them hang out with my kids anymore. It's like my 4 year old said "If you don't care enough to keep me healthy, I don't care to be around you"

We veiw it the same as if someone was hitting them in the head with a baseball bat everytime they see them, basically they are trying to hurt them for no reason.

(a little extreme, but hey we are healthy)

2Boys4Me Enthusiast
2Boys4Me
Posted

We say to please not feed Ty unless they check with us or have Ty or Walker (big brother) read the label first. My kids are 6 and 8 and they know the "friendly" companies and for the most part what Ty is/isn't allowed to eat. If he doesn't know, he doesn't take it and walks away. He's been gluten-free for 8 months and always asks if something is gluten-free (including stuff I give him sometimes).

We say: Ty has Celiac Disease. It's an autoimmune disease that makes his body unable to eat anything with wheat, rye, oats, barley or malt. It damages his intestines. Usually people will ask what happens if he eats it and then because his symptom is anemia - he doesn't get sick or anything, we say: It's like smoking. You can't see the damage taking place, but it damages his insides.

So far, almost everyone has been great. I rarely run across someone who doesn't ask what he can have or say to me that they're having - insert food item here - at the birthday, and can Ty have that. I always say that I will provide something for him and he has a great time. The two times we've run into trouble was with a lady who spoke very little English, she asked if he could have a cookie and I said that he could have an apple or a banana and told him not to eat anything other than that (he was at a friend's house, and the nanny mostly spoke Russian). The other time was a Mom at soccer who didn't read the suggested gluten-free/nut-free snack list, so two kids ended up not having a snack after soccer.

i canary Rookie
i canary
Posted
It's like my 4 year old said "If you don't care enough to keep me healthy, I don't care to be around you"

What a smart child!!!

Nancym Enthusiast
Nancym
Posted

It's tough because people are all different in their ability to comprehend. Most don't even know what "gluten" is and wouldn't realize it is a part of wheat or other grains. Then they might have heard that gluten intolerance is in fashion at their latest cocktail party and they instantly think you're a neurotic parent. :P

I'd probably say my child had Celiac disease which means they must not eat anything with wheat or other grains. I'd probably just ask them to not feed my child. If they wanted to know more, I'd give them a more technical description, but really, if you want to get the desired results you might say your child develops projectile vomiting and immediate explosive diarrhea... that'd proabbly serve as a deterrent.... :D Of course, this is assuming that your child isn't old enough to correct you. :P

penguin Community Regular
penguin
Posted
I'd give them a more technical description, but really, if you want to get the desired results you might say your child develops projectile vomiting and immediate explosive diarrhea... that'd proabbly serve as a deterrent.... :D Of course, this is assuming that your child isn't old enough to correct you. :P

LOL :lol:

If the kids do correct you, say "Oh, you never remember dear because gluten poisioning makes you have amnesia(or seizure, out of body experience, demonic possession, or what ever tickles your fancy that way)" :P

(obviously a joke)

mac3 Apprentice
mac3
Posted

I'm new at this...as I'll admit over and over :) ...but one of the cooks where my daughter will be attending camp (I, of course, am sending my daughter's own food) commented that "such-n-such-a-food won't hurt her 'cause it's only so-many parts per million of gluten in it." I can't keep all of the information that I've read straight and I'm not sure what my retort to this gal ought to be...

Mango04 Enthusiast
Mango04
Posted
I'm new at this...as I'll admit over and over :) ...but one of the cooks where my daughter will be attending camp (I, of course, am sending my daughter's own food) commented that "such-n-such-a-food won't hurt her 'cause it's only so-many parts per million of gluten in it." I can't keep all of the information that I've read straight and I'm not sure what my retort to this gal ought to be...

This is just my opinion, but in order to keep your daughter safe at camp, I would tell the cook that she can only eat food that contains zero parts per million of gluten.

Smunkeemom Enthusiast
Smunkeemom
Posted
I'm new at this...as I'll admit over and over :) ...but one of the cooks where my daughter will be attending camp (I, of course, am sending my daughter's own food) commented that "such-n-such-a-food won't hurt her 'cause it's only so-many parts per million of gluten in it." I can't keep all of the information that I've read straight and I'm not sure what my retort to this gal ought to be...

I would say NO GLUTEN!

I read somewhere (I have no clue if it's true) that there is enough gluten in 1/48th of a slice of bread to do severe damage to a celiac patients intestines, so I go with the "100% absolutely no gluten at all anywhere near my kid" rule.

Gluten is toxic to your kid, even a little bit is still super bad.

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