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Explaining Celiac To People Without Talking About Poop?


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22 replies to this topic

#1 colfax

 
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Posted 10 December 2011 - 11:05 AM

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.
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#2 kareng

 
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Posted 10 December 2011 - 11:09 AM

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.
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#3 Skylark

 
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Posted 10 December 2011 - 11:16 AM

I tell people that eating gluten gives me symptoms like having food poisoning. It's reasonably polite and everyone completely understands what I mean.
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#4 pricklypear1971

 
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Posted 10 December 2011 - 11:16 AM

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.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
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Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#5 bartfull

 
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Posted 10 December 2011 - 11:16 AM

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.
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#6 Takala

 
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Posted 10 December 2011 - 11:33 AM

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 ? :ph34r:
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.
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#7 rosetapper23

 
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Posted 10 December 2011 - 11:35 AM

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.
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#8 yolo

 
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Posted 10 December 2011 - 12:13 PM

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...
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Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#9 MissHaberdasher

 
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Posted 10 December 2011 - 05:01 PM

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!
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#10 Monael

 
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Posted 10 December 2011 - 10:47 PM

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 :lol: ) 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.
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#11 chai

 
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Posted 11 December 2011 - 08:05 AM

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. :D
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#12 Monael

 
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Posted 11 December 2011 - 11:09 AM

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. :D


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 :lol:
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#13 Haylsinator

 
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Posted 11 December 2011 - 12:09 PM

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." :P I think the food poisoning comment is a great idea! I'll try that one out next time.
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Diagnosed with Celiac Disease by blood test: late November 2008

Consciously Gluten Free starting end of November 2008

#14 pricklypear1971

 
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Posted 11 December 2011 - 12:16 PM

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.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#15 notme!

 
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Posted 11 December 2011 - 01:45 PM

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..... :ph34r: at the most embarrassing times, naturally.....
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