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JonnyD

How To Describe Celiac Disease

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Hello,

I'm recently diagnosed and was wondering if anyone has a short/quick way of describing Celiac Disease to the average clueless person (of which I was a few weeks ago). Talking about 'gluten' is too hard to digest (pun intended) for the average person. I've thought about just saying I'm allergic to eating wheat and describing it better if they're really interested.

What do you say when the topic inevitably comes up?

Thanks.

Jonny

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If it's in the context of explaining that I can't eat something or can't order something, half the time I just say "I can't have wheat," especially if there's no chance that the item has rye, barley or oats. There's no point in complicating it.

A short way of explaining it in better detail, if you're going to use the words celiac disease, is to say it's an autoimmune disorder that means you can't digest a certain protein in wheat, rye, barley or oats and causes you to suffer damage to your intestines, and a lot of pain and illness, if you do eat it, even tiny amounts.

Those explanations are different that the kind you need to give to a waiter or restaurant manager of course, because then you need to cover cross contamination, etc.

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Well, the easiest way is to say you are allergic to wheat, even though that doesn't really tell the whole story.

That is the point really, when you want to just briefly state what the problem is.

However, in my experience, sometimes in spite of my best intentions, it leads to a more in depth description.

The first time I tried to be low key but order safely in a restaurant, I was on a first date.

I told the waitress I was allergic to wheat and chose safe foods to order.

She was aghast about it. She actually sat down next to me and said, "What? Were you really sick? Oh my God! You should be on Mystery Diagnosis! That is bizarre! Wheat is in everything!"

Sometimes when you wanna be low key, it just ends up being a big deal anyway.

I've learned to just go with it.

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I told the waitress I was allergic to wheat and chose safe foods to order.

She was aghast about it. She actually sat down next to me and said, "What? Were you really sick? Oh my God! You should be on Mystery Diagnosis! That is bizarre! Wheat is in everything!"

Wow. Truly awful!! I haven't done the restaurant thing, yet (but I'm lucky that where I live there are several celiac-aware restaurants in town for when I do), but I am still very awkward about bringing it up. I was buying hair product yesterday and said "um, this might be a weird question, but do you have any shampoos and stuff that don't have gluten in them?". He said, "without what?", and I thought OH NO, but I repeated, meekly, "Gluten?". And right away, he was like, "OH! Yes, we do! That's not a weird question", and proceeded to show me a couple lines they carried. Again...lucky.

I think with time one must get more confident talking about it, requesting things, and explaining it. What made me more uncomfortable than explaining what celiac disease was, was when the clerk asked me what happens if I HAVE gluten LOL

But as for the disease itself, I think it's probably best to go with "I have celiac disease, it's kind of like a wheat allergy" and then explain more if pressed for more info. People seem to understand "allergy" better than "sensitivity" or "intolerance".

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When dealing with people preparing my food I say allergy sometimes because they tend to take that word more seriously than if I said intolerance. Plus, I actually have other food allergies that are serious so that makes it easier to just say, "I have multiple food allergies and cannot eat ______." Rather than explain the difference between food allergies, intolerances and auto-immune disorders. When explaining it to friends/family I have said it's an auto-immune disease and even the tiniest amount of wheat, rye, barley or oats will make me very ill. I spare them the details of my illness unless they ask for them. Sometimes people ask out of sheer curiosity/incredulity and sometimes they ask because they suspect they have the same problem.

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Well, the easiest way is to say you are allergic to wheat, even though that doesn't really tell the whole story.

That is the point really, when you want to just briefly state what the problem is.

However, in my experience, sometimes in spite of my best intentions, it leads to a more in depth description.

The first time I tried to be low key but order safely in a restaurant, I was on a first date.

I told the waitress I was allergic to wheat and chose safe foods to order.

She was aghast about it. She actually sat down next to me and said, "What? Were you really sick? Oh my God! You should be on Mystery Diagnosis! That is bizarre! Wheat is in everything!"

Sometimes when you wanna be low key, it just ends up being a big deal anyway.

I've learned to just go with it.

Well it could have been much worse. She could have told you you can have the white bread instead! :blink:

at least she knew that wheat was in everything and you were more likely to get safe food.

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Depends on the situation.

I work at Home Depot and a couple days ago I walked into a room that had wheat straw all over the floor. Yes I know I wasn't eating it but I didn't want it near me at all. I needed to do something on the other side of the room. Thankfully a co-worker was there so I said, "I have an extreme wheat allergy can you take this over there for me?" Well it was not exactly true but explaining that I have Celiac disease and if I in-hale straw dust I'll get a migraine and be miserable for days seemed a bit more information than he needed.

Usually I just say, "I Celiac disease which means I can't eat anything with wheat barley, rye, and a few other grains." If I say gluten intolerance I tell them, "Gluten is the protein found in wheat, barley, rye, and a few other grains, my body reacts to it as though it was a poison."

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