Explaining Celiac To People Without Talking About Poop?

[colfax]

Hi. After doing a lot of internet research, I tried going gluten-free in July and after a week my belly started feeling better. A lot of other nagging physical problems have been getting better since then, and that combined with the fact that I've had a couple of accidental glutenings--with unpleasant results--that have convinced me that I'm right to avoid gluten. I don't have good insurance right now though, so I'm not planning on getting officially diagnosed any time soon.

My parents and inner circle of friends have been really supportive. But how do I talk about it with random acquaintances who invite me out to lunch? Or other people--like potential dates--who I don't really want to go into the gory details with? Having diahrrea for years and then having it stop completely after 2 months gluten-free (except for the accidental glutenings) is pretty conclusive proof to me, but like I said, that's not something I want to talk about with everyone.

So what do you tell people? How do you convey the seriousness of this disease without talking about poop or pulling out a very long health history? Lately I've been trying to explain it to people and I've been getting responses like, "Oh, I couldn't live without bread. If I had gluten-intolerance, I'd just eat it anyway and deal with the consequences," and that sort of makes me want to scream. I'm sorry if this sort of question has been asked before.

[kareng]

I tell people that gluten causes the destruction of my small intestine. If people want more detail I can explain about antibodies, mal- absorption of vitamins, etc.

[Skylark]

I tell people that eating gluten gives me symptoms like having food poisoning. It's reasonably polite and everyone completely understands what I mean.

[pricklypear1971]

Dead Bread-heads.

You can't explain it other than saying you have an autoimmune disease that destroys your GI system, and glutenous foods make you very ill. I find it's more your ability to say it with a certain tone and move on in conversation that does the trick. Of course, I can't convey that on here....other than to say its a matter-of-fact, no-nonsense, it isn't up for discussion tone.

If you get to know someone well enough you can get into the crappy (ha!) details.

[bartfull]

You could just say that it causes severe digestive problems that eventually lead to vitamin deficiencies, neurological problems, thyroid diseases, and cancer, if not addressed.

[Takala]

My symptoms were supposedly "atypical," so this isn't a problem for me. I will tell people if they have a "need to know" that I have food allergies and intolerances. And this isn't a lie as there is other stuff I'm avoiding.... They hear the word "allergy" and that conveys the seriousness. This disease damages the gut and causes malnutrition. THAT causes the other problems.

I doubt anyone would actually want to hear the entire saga of symptoms, so I just say "neurological symptoms" and I'd rather not have my eyes crossing and a migraine or dizziness start up, or go into an arthritic flare. Or I'd rather not have kidney damage, or I'd rather not have liver damage, or I'd rather not have more bone loss or I'd rather not have brain fuzz or I'd rather not have an asthma attack..... I'd rather not walk with a cane, and I'd rather not be using a wheelchair at this age, so I'm really not motivated to eat what I shouldn't be eating.

Deal with the consequences ?

If they really had gluten intolerance, and some of the symptoms I have had in the past like repeated infections, and getting literally knocked down by gall bladder symptoms (oh, I forgot the ob- gyn ones! how about nearly passing out from bleeding and back pain from endometriosis & cystic ovary more than once ?) they wouldn't be so flippantly announcing they couldn't give up mere wheat breads. Wonder if they've ever actually been hurt by anything, that sounds like addictive behavior.

[rosetapper23]

All great advice to choose from....but I liked Bartfull's explanation the best, and it's closest to what I tell servers and acquaintances. I say that I have an autoimmune disease where gluten destroys the lining of the small intestine, which can result in nutritional deficiencies, neurological problems, and cancer if I don't follow a strict, gluten-free diet.

In your case, I realize that what you most experience with gluten exposure is diarrhea, but you don't have to disclose that part of it. Usually, people "get" it when I mention the destruction of the lining of the small intestine. I think you'll find over time that many people are genuinely interested in knowing more about celiac and gluten sensitivity, not so much out of curiosity, but more out of self-interest. Whenever I attend a conference and have a "special" meal served to me, people at the table want to know why I'm eating something different (since it doesn't look like a vegetarian meal). I give everyone a brief rundown on what celiac is and the symptoms it can cause. Invariably, everyone gets quiet...and one by one they'll volunteer that either they suffer from these symptoms or they know someone who does. As for the "poop" part, I just mention "digestive complaints" in my list of symptoms.

[YoloGx]

All good. I like to mention the auto immune response attacks my villi resulting in neurological and kidney damage, migraines and food poisoning symptoms. Just cross contamination completely knocks me out for at least a day if not three or more. Also by avoiding the gluten I no longer get sick for weeks on end like I used to. I only say more now if they are truly interested and think they might have something like it too. The quick and easy response to their question is that it makes me ill for a week...

[MissHaberdasher]

I just simplify it to the max (if it's someone I'm not likely to run into again) with "Thanks, but I'm allergic to bread".

Surprisingly, a lot of people say, "Oh, you mean celiac's?" YES thank you, official new friend!

[Monael]

I have described it by saying that it gives me gastrointestinal problems. You really don't need to go into detail. If you say you can't have gluten because you have celiac disease or you are gluten intolerant, most people don't really ask what symptoms you have. At least that has been my experience. I have also said that it gives me all sorts of problems. Most people really don't care, to be honest. But I keep it pretty low key. I have a man in my life who has been there for many years so he knows the problems I have had with the big D, so I didn't need to tell him that part...and he has noticed a difference since I went gluten free so that helps (imagine how embarrassing that conversation was ) If I were to start dating all over again, I think I would only go on dates that didn't involve food until I knew that we were going to be dating for a while.

[chai]

I find that people are pretty skeptical of my allergies to the point where they do ask what happens if i eat gluten and don't just accept that I'm allergic to it. If it happens I give them the whole explanation to make them as uncomfortable as possible....

I like to think it might help the next person they meet with celiac.

[Monael]

I find that people are pretty skeptical of my allergies to the point where they do ask what happens if i eat gluten and don't just accept that I'm allergic to it. If it happens I give them the whole explanation to make them as uncomfortable as possible....

I like to think it might help the next person they meet with celiac.

OMG I can't imagine what I would say to someone if they pressed me for details. Your idea is pretty funny! But honestly, if someone is skeptical or doesn't accept what I tell them then I really don't care. It's really none of their concern. I know it can be tough sometimes when we are dealing with people we have to work with or get along with. I have told people straight out, in a calm non-confrontational way, that I don't want to talk about it (not about gluten but other personal questions people sometimes ask) and I have had good responses to that. But then again, maybe if I encounter someone skeptical of my gluten intolerance, I will give them the gory details just to see the look on their faces

[HS7474]

I'm amazed that so many people can get away with not having to explain the symptoms! As soon as I mention it, 4 out of 5 people ask "So, what happens when you eat it then?". 3 years in and I still don't have a good answer. It's not the most feminine or attractive thing to say "Well, I bloat up like I'm 8 months pregnant and have gas that would clear this room and have the bio-hazard team in here within seconds." I think the food poisoning comment is a great idea! I'll try that one out next time.

[pricklypear1971]

I have pics of my rash on my iPhone. I guess I could whip them out if needed.

I won't advise others to take pics of GI issues, but assume there's at least one jerk who deserves to have such pics tossed in his/her face for pressing for details.

[notme]

I have pics of my rash on my iPhone. I guess I could whip them out if needed.

haha - i took pictures of my rash, too - it would disappear by the time i could get an appointment w/dermatologist! i showed it to my GI doc and she said "yup" but never could get it biopsied. AND no matter how many times i erased them off my camera, there they were..... at the most embarrassing times, naturally.....

[Skylark]

I find that people are pretty skeptical of my allergies to the point where they do ask what happens if i eat gluten and don't just accept that I'm allergic to it. If it happens I give them the whole explanation to make them as uncomfortable as possible....

I like to think it might help the next person they meet with celiac.

Hehee. I've done this too for people who wouldn't take NO for an answer.

[colfax]

Thanks for your thoughts, everyone. It's really helpful to hear about how other folks deal with this conversation. Maybe I just have really nosy acquaintances, or maybe a lot of my socializing just revolves around food, but thus far every time the gluten-free thing has come up, people have wanted to know more about it. It's usually just in a casually curious sort of way though. I like the food poisoning analogy as a way to answer the question without really answering it.

[srall]

I also have pictures of my rash on my phone, and before and after pics of my 8 year old with her various rashes (hives and white pimply bumps) as well as her deep sunken eyes with black circles, scabs all over her mouth and lips and dried brittle thinning hair (she was 7 at the time). In 2 years I've only had one "friend" who pushed me so hard that I whipped those pictures out. She was very skeptical that I had diagnosed both of us (because the doctors weren't helping) and even though both her doctor and my doctor were completely supportive, my friend just thought I was being overly protective crazy mama.

Most people will accept food allergy, or celiac (people are catching on), or food poisoning symptoms...I like that one. I even say GI problems and nausea...I had so many other symptoms that resolved I could keep someone "entertained" for several minutes. I do agree that if you think something is personal you don't have to talk about it. The one thing I'll say is I have a couple of people who when asking me questions started to look at their own symptoms. One girlfriend is now also gluten free/soy free and dairy free, and another friend is TRYING to be gluten free. It's just such a hard commitment and until you're convinced that the gluten is what is making you sick, there is heavy denial.

Good luck to you. It sounds like you have figured out a good reply. Food poisoning was my favorite also.

[lovegrov]

Tell them about anemia, severe fatigue, and fogginess so bad that you can't function mentally.

richard

[aeraen]

It does make me chuckle,sometimes, at how free we all are here in discussing a subject that most would never think to bring up outside this forum . Its nice to have a comfortable place to ask questions that we could not ask anywhere else.

When I don't want to go into a litany of woes, I simply say that the long-term consequences of gluten intolerance are vast and can, eventually, be deadly. But that the short-term effects of being glutened can be (here, I pause slightly for dramatic effect) "inconvenient". Believe me, EVERYBODY understands what I mean.

[HS7474]

It does make me chuckle,sometimes, at how free we all are here in discussing a subject that most would never think to bring up outside this forum . Its nice to have a comfortable place to ask questions that we could not ask anywhere else.

When I don't want to go into a litany of woes, I simply say that the long-term consequences of gluten intolerance are vast and can, eventually, be deadly. But that the short-term effects of being glutened can be (here, I pause slightly for dramatic effect) "inconvenient". Believe me, EVERYBODY understands what I mean.

Brilliant! Thanks to the OP for asking this, I can't believe it never occurred to me. I think a worry-weight has been lifted off of my chest after reading these responses.

[Chad Sines]

Butt, butt (spelling intended), why would you not want to talk about poop?? Everybody poops.

I like the food poisoning explanation. I usually just say upper and lower GI issues. If they probe more, I say that I start out nauseous and it does not end (emphasis added) well.

Ironically, just saying "I have celiac. Eating anything with gluten in it makes me really sick." works 99% of the time except for those who honestly want to know more about it. Many often know friends or family members with it.

[lynnelise]

If pressed I say eating gluten is like giving myself dysentery. They can draw their own conclusions from that. lol