Explaining Celiac To People

[Breila]

How do you do it? I'm primarily talking about people who enter your child's life who need to know. Waitresses, teachers, caregivers, whatever.

The topic came up last night because I told a waitress that he had a wheat allergy, so it was vital that he get his burger with NO BUN. My son questioned my choice of words because he's heard me explain to other people the difference between celiac and an allergy. He basically made me feel like I was lying by saying he has an allergy, but I told him it just seemed like the easiest way to explain it to someone that will probably only need to know once, yk?

His teachers have gotten much more detailed explanations of celiac, btw. But I also wonder about other parents, like if he is invited to a b'day party or a playdate. It seems so much easier to just say allergy, most people get allergies, yk? But it isn't accurate.

What do you do?

[RiceGuy]

Even with nasty viruses like AIDS, Open Original Shared Link. Well, with Celiac, it is just the opposite. That is, some people are not immune. It's a bit like when the Europeans came to the new world, they brought all sorts of diseases with them, but they were more or less immune. So the natives got sick, not the white man.

That's the best I can think of. I'm sure others will be quite helpful.

[holiday16]

Well, when we're in eating places I use the term allergy because it immediately gets their attention and they take it more seriously. Also, at some chick-fil-a restaurants when I've said allergy they flag it where if I said anything else to describe it they would not have done that. If I want to be totally upfront I tell them we have a gluten intolerance and if we get even the tiniest bit we have a reaction and that mine lasts for 3 weeks. The 3 weeks gets their attention )

My husband had to call a camp my son will be attending to try and figure out how food is handled and he had a hard time getting through to them until he compared it to an allergy and that if it comes in contact with anything with gluten in it's ruined. I have to call a place that he will be going this week to make sure they don't ruin the food I send and that's how I'll describe it plus adding on that it makes his body attack itself and that usually gets their attention as well.

We've learned over the years that even when you are as direct as possible unless you really lay out worse case scenarios it tends to get downplayed. My son has a serious heart defect and from the time he was in Kindergarden we've informed every teacher, principal and anyone who comes in contact with him about his condition. He did Make a Wish last year and that was pretty eye opening as we found out that even though we had educated the school they still did not understand how serious his condition was until he did his wish. We had so many people at the school tell us they did not realize he was serious enough to qualify for something like that including the current teacher who we had educated on it that year. You would think saying he essentially has half a heart would make people realize his defect is pretty extensive...

Taking what I've learned from that, with the celiac thing I don't sugar coat it and lay out what the worst case scenario would be and so far it's gone pretty well. The heart thing is much harder to communicate because if you make it sound too bad they limit him when they shouldn't and if you don't make them understand the seriousness they can push him when they shouldn't. We've been through both and communicating celiac is a ton easier.

Just wanted to add that for birthday parties I call ahead and speak to the parent and in that case I give more of an explanation and explain every single thing needs to be checked and how it can be hidden, but I still compare it to an allergy. When I drop them off at the party alot of times I can go through what they're serving and double check and parents are fine with that. What I generally find is their child has other issues and they're very understanding.

[ryebaby0]

For restaurants, we say "he has celiac disease, which means he reacts to wheat like an allergy" and then we give them a GIG restaurant card. (But honestly, we eat out soooo infrequently this isn't a problem) Or I'll say "he can't have the bun" at McDonalds "he'll react right here in the store". That last part ALWAYS gets a waiter's attention

For new friends, we just say "he can't have gluten, which means wheat, rye, oats or barley" and leave it at that.

For old friends, we say "do you want us to send the food, or were you going to buy Lays Stax (or fill in with whatever else is appropriate)

[dandelionmom]

It all depends:

-When eating out in a fast food place I say she has a severe allergy to wheat and bread (in case they don't get that bread is made of wheat).

-When eating out in a restaurant that has a gluten-free menu (like PF Changs and Outback) I explain that she has celiac disease and is very sensitive to gluten

-When we're dealing with friends, I pretty much say what I'd say at a gluten-free friendly restaurant (and most of her friends already know that she has to be gluten-free so the parents ask me about it)

-For school, the teachers have gotten a packet of info and I sat down with them to talk about celiac and how sensitive my daughter is

[kbtoyssni]

I say I have an allergy when talking to people I don't know well. It's not necessary to get into the technical difference between how my body reacts to gluten versus an allergic reaction, either way it makes me sick. And everyone knows what an allergy is. If people start asking questions I'll mention it's auto-immune and that my body starts attacking itself. Again, I don't think most people understand the technical difference between allergy and autoimmune so most probably think my allergic reaction is that my body starts attacking itself.

[Kibbie]

When I need a quick clear cut reason for someone like a waitress (a person I probably will never run into again) I always use the term "Sever Allergy" because that gets my point that it has to be gluten free across most effectively.

For someone who would see my daughter regularly I give them this "lecture" (for lack of a better term) *most o the info I got from Gluten Free Living for Dummies

When anyone (even people without Celiac disease) eats gluten containing products it causes our bodies to produce an excess amount of zonulin. (A protein found in our small intestine that basically works as a doorman allowing the nutrients of our food to pass into the bloodstream) You heard me right.. EVERY person on earth produces too much zonulin when they eat gluten! Having too much zonulin opens so many ..doors.. that toxins (gluten fragments) get into our blood stream that normally wouldn't have been allowed in.

This is where my daughter's body acts differently than ours does. Her body sees these gluten fragments as invaders and it launches and attack against them.. the problem is her body also attacks itself (the autoimmune part of this Celiac) She produces antibodies ant react against normal, healthy tissue rather than the bad stuff.

Her body attacks the villi (the little finger things on our intestines that help absorb nutrients) on the lining of the small intestine causing them to flatten (really they are chopped down like a tree). If they have been chopped they are no longer able to absorb nutrients from her food. The damage always happens at the top of the intestine first.

Remember that her small intestine is about 3.5 times longer than she is (so about 10+ feet) So by the time she was showing symptoms and losing weight, her entire intestine had been damaged.

Anyhow the villi do repair themselves once you have switched to a gluten free diet. It takes 1-12 months for adults and with kids it..s a much faster recovery. Needless to say this needs to be treated as if it were a life threatening allergy because the effects of a glutenning can lead to sever and debilitating diseases including but not limited to an array of other autoimmune disorders and lymphoma.

[Phyllis28]

I usually start with "I can not eat wheat, oats, rye or barley. These foods will make me very sick". In dealing with food service I let them draw there own conclusions which is generally allergy. People who I will be dealing with on a regular basis get a basic explanation of celiac and and gluten intolerance.

[strawberrygm]

When I need a quick clear cut reason for someone like a waitress (a person I probably will never run into again) I always use the term "Sever Allergy" because that gets my point that it has to be gluten free across most effectively.

For someone who would see my daughter regularly I give them this "lecture" (for lack of a better term) *most o the info I got from Gluten Free Living for Dummies

When anyone (even people without Celiac disease) eats gluten containing products it causes our bodies to produce an excess amount of zonulin. (A protein found in our small intestine that basically works as a doorman allowing the nutrients of our food to pass into the bloodstream) You heard me right.. EVERY person on earth produces too much zonulin when they eat gluten! Having too much zonulin opens so many ..doors.. that toxins (gluten fragments) get into our blood stream that normally wouldn't have been allowed in.

This is where my daughter's body acts differently than ours does. Her body sees these gluten fragments as invaders and it launches and attack against them.. the problem is her body also attacks itself (the autoimmune part of this Celiac) She produces antibodies ant react against normal, healthy tissue rather than the bad stuff.

Her body attacks the villi (the little finger things on our intestines that help absorb nutrients) on the lining of the small intestine causing them to flatten (really they are chopped down like a tree). If they have been chopped they are no longer able to absorb nutrients from her food. The damage always happens at the top of the intestine first.

Remember that her small intestine is about 3.5 times longer than she is (so about 10+ feet) So by the time she was showing symptoms and losing weight, her entire intestine had been damaged.

Anyhow the villi do repair themselves once you have switched to a gluten free diet. It takes 1-12 months for adults and with kids it..s a much faster recovery. Needless to say this needs to be treated as if it were a life threatening allergy because the effects of a glutenning can lead to sever and debilitating diseases including but not limited to an array of other autoimmune disorders and lymphoma.

i too just use the word allergy to people as well. they get that so much better.

love this description though, and have emailed it to those that need it, and posted it to my blog as well. thanks so much!!

[gfp]

I have done a lot of public speaking and presentations in my life (mostly scientific) and I am meant to be quite good at it ...

The 'secrets' (if you can call them that) is really not hard ... and it amazes me so many people don't ....

Getting the point about celiac disease across is a presentation or a sales pitch ... if you want to look at it that way.

1/ Each audience has its own 'presentation' or ptich.

Each audience needs to be judged seperately. The same 'presentation' can't be used un modified for different audiences. You might use the same slides or in the case of a resto 'cue cards' but the delivery needs to be targetted.

A waiter or waitress can come from vastly different backgrounds. How you get the attention of and subsequent care of attention matters.

A waiter/ress who is a pre-med student working tables to pay for tuition is different to a single mom working tables to put food in their childs mouth.

For a college student working tables a scientific "serious auto immune disease" puts it ona level where they don't think youare talking down to them because they are a waitress ... for the mom working tables telling them your kid will be sick for weeks is probably far more effective.

What you need is for that waiter/ress to take extra time, check with the kitchen etc. so this is your goal. I am not adverse to an extra level of tipping for this... so I mention this in a service context and make it clear their tip is dependent upon it (without being too blunt).

This is why I never eat at fast food places because this brings in too many of a different type of 'don't give a damn' servers and kitchen staff.

2/ The waiting staff are not your final goal. You need this information to be transferred to the kitchen. Give them too much verbal info and they will get confused when they 'present' your problem to the kitchen. This is where visual aids come in. The dining cards or just your own printed documentation will make it easy to transfer this info and also give them prompts and make sure they don't miss things out like CC, that barley and rye also contain gluten etc.

Phoning ahead is good, popping in ahead is better but these are not always possible.

Hope this helps

[Respira]

I got tired of blank expressions when trying to explain gluten intolerance, it was always as if I were speaking a foreign language. I now just say "Severe wheat allergy" which gets an immediate response. Since rye and barley are not as common and more readily spotted by myself I do not complicate matters by mentioning them.

Restaurants that have gluten free options I simply say I am a celiac.

Long term relationships like teachers, fellow workers or while on a cruise I go into the full explanation.

[babysteps]

I told a waitress that he had a wheat allergy,

My son questioned my choice of words because he's heard me explain to other people the difference between celiac and an allergy.

He basically made me feel like I was lying by saying he has an allergy

Maybe your son would understand the difference between explaining-his-medical-condition vs. making-sure-he-doesn't-get-glutened?

They are 2 different things, although related.

The medical condition is not an allergy - and that's important to understanding it fully

To avoid getting glutened, using the term "allergy" is pretty effective - the server doesn't have to understand the medical condition

Kind of like the difference between using the term "kleenex" to mean that specific brand (on a shopping list) and "kleenex" to mean any facial tissue (asking for one pre-nose-blow)?

Usually I just say "I can't eat wheat, barley or rye, which also means nothing containing them like bread, pasta, most soy sauce or miso" - if the server gets it, great. If not I explain more. If the server says "oh, you have an allergy" I say "yes". Sometimes I don't even mention the term "gluten".