Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

Recommended Posts

I have a good friend who lives across the state. She called me from work because we are going to see her soon. So I told her about the celiac like this-- it's a genetic disorder that causes an intolerance to the gluten in wheat, rye, barley. I told her all the problems I've had with anemia are caused by it and the fatigue and so on. So at the end of our conversation she says, "that's ok, you can just have it when you know your going to be home for a few days." She had to go so it stopped there. Obviously I missed something in my explanation. She's super smart so I'm sure she'll do some reading on her own. But I'm curious to know if others have a short, clear canned answer they use for everyone?

I'm not upset with her but myself. I think I just wanted her to know I was okay and actually doing better. But I don't want her to think it isn't serious and crucial that I avoid gluten.

Help me, o wise ones!

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


I'm not necessarily a wise one, but is it possible she was joking? Or maybe "intolerance" sounds mild, not at as severe as an allergy. My immediate question to her would be, "why on earth would I want to waste a few days at home with anemia and fatique?"

You might want to mention that unchecked, it it is linked to all kinds of other autoimmune disorders: lupus, fibromyalgia, IBS, MS, autoimmune thyroid diseases, diabetes, not to mention lymphoma. And because of that, it is a lifelong strict adherence to the diet, just like those with peanut allergies stay away from peanuts for a lifetime.

Share this post


Link to post
Share on other sites

I find that when you use the words "toxic" or "poison", it gets the point across better. After all, to celiacs, that's exactly what gluten is. Would you knowingly ingest rat poison or any other toxic substance? Nope.

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

Share this post


Link to post
Share on other sites

Remember the KIS rule - Keep it simple.

When I tell people about the kid's celiac - I start with - we found out why the kids were so sick. They have celiac disease and cannot have gluten - which comes from wheat, rye, barley and oats. I leave the floor open for questions. I found that most people tuned out - unless they were the ones asking questions.

We are in charge of what goes in our mouths. If someone else doesnt quite get it - oh well. As long as we "get it".

If it is important that this friend truly uderstand what celiac is and how it impacts our health and our diet choices (in or out of the house)..then print off one of the descriptions from a celiac website. and send it to her - via email, fax or old fashioned mail. Let your friend know that you are sending it so that there wont be a misunderstanding when you turn down a food dish if you are woried about cross contamination.

see: https://www.celiac.com/st_main.html?p_catid...-08107164766.75

Sandy


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

Share this post


Link to post
Share on other sites

I tell people that celiac means my body thinks wheat, rye, and barley are poison and has an autoimmune reaction to them, much the same way it would to poison. (when pressed, sometimes I add that my body seeks to rid itself ofg the offending substance as quickly as possible. They stop there.... :rolleyes: )

It is technically fairly correct, and it takes care of both the severity issue and the "as long as I stay away from it I'm fine" part.

People's subconcious reaction to the word poison is appropriate, auto-immune brings in some more concepts, and I think several people on the board have pointed out that subconcious reaction to "intolerance" is to equate it with common lactose intolerance (so you get a little gassy...; if only they knew :lol: )

Share this post


Link to post
Share on other sites

I keep it real simple. I explain that if I eat any food containing wheat, oats, rye or barley I will get very sick. After this explanation, I answer any questions that may arise.


Phyllis

Gluten Free - 30 years

Share this post


Link to post
Share on other sites
I find that when you use the words "toxic" or "poison", it gets the point across better. After all, to celiacs, that's exactly what gluten is. Would you knowingly ingest rat poison or any other toxic substance? Nope.

Karen

I like the idea of using toxic and posion, those are always eye opening words :)


~~~~Gluten Free since 9/2004~~~~~~

Friends may come and go but Sillies are Forever!!!!!!!

36_22_10[1].gif

Share this post


Link to post
Share on other sites

I tell people it's kind of like having a hangover and food poisoning at the same time on the day after you way overdid a workout (I get nerve pain and mobility issues too).

"At the same time" gets their wheels turning on their own personal experiences because most people have experienced each one of those at least once. And the idea of having all of that all at once brings it into perspective a little more clearly for them.

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

Share this post


Link to post
Share on other sites

What if you are not a highly symptomatic celiac? If people ask further questions I can't in all honesty say that I immediately get really sick if I eat gluten.

Perhaps after I have been gluten-free long enough I can be more clear.


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

Share this post


Link to post
Share on other sites

If people ask further questions - depending on who asks - you can simply describe celiac disease in general. We dont have to reveal all the details about how sick we get. We can't have gluten - plain and simple. It makes me sick. If you dont get sick for days - does that part matter?? You get sick, it destroys your small intestine. When and how are irrelavent.

People asking questions is a good thing, offer to get a pamphlet for them or tell them how to go about finding more details. If they are asking so they know what to feed you - have a sheet done up on the computer that you can print off as you need it - a list of favorite foods, brand names.

Food for thought anyway ...... :rolleyes:

Sandy


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

Share this post


Link to post
Share on other sites

Thanks, you guys. I've thought about it alot today. I think, despite having different problems for 13 years, she would have never have thought of me as having anything serious, genetic or chronic. I was a high functioning celiac. :rolleyes: I went to college, had three kids, homeschool, church yadayayada... When I told another friend she was really surprised that I would have any "sickness" at all. So, from their perspective, it must seem odd to think of me as getting better when they wouldn't have thought of me as sick. Clear as mud? She is a good friend and will take the time to learn about it I'm sure. She would be the first person to make sure there was something gluten free and yummy for me at a party! :lol:

Thanks for all your help!

Monica

Share this post


Link to post
Share on other sites
What if you are not a highly symptomatic celiac? If people ask further questions I can't in all honesty say that I immediately get really sick if I eat gluten.

Perhaps after I have been gluten-free long enough I can be more clear.

My son is asymptomatic, so we relate it to smoking. Just because you can't see a smoker's lungs turning black doesn't mean they aren't.

We cannot see my son getting sick, but when he ingests gluten, his intestines are getting damaged whether we have any obvious evidence of that or not.


Linda, Mom to Ty (11 years old)

Ty was diagnosed by blood test June 7/05

biopsy Aug 11/05, diagnosis confirmed Aug 18/05

Mom, Dad and big brother Celiac-free.

Share this post


Link to post
Share on other sites