Newly Diagnosed- How To Explain It To People

[Trachellium]

Hi there-

I hope this doesn't come across as ignorant, I am still learning all about this but in the meantime am finding it a little hard to explain to people. I mean I recognize it as a disease but I feel like the word disease freaks people out (and maybe I just shouldn't care as much about freaking people out). But I also don't want to discount it because I realize it is much more than just a gluten allergy. Of course I will go in depth about it with close friends and family and refer them to websites, etc., but what about coworkers, people in restaurants and grocery stores, etc.? Does severe gluten intolerance suffice? Do any of you have any good phrases that succinctly help convey the basics of the disease? Thanks so much.

[ksymonds84]

Hi there-

I hope this doesn't come across as ignorant, I am still learning all about this but in the meantime am finding it a little hard to explain to people. I mean I recognize it as a disease but I feel like the word disease freaks people out (and maybe I just shouldn't care as much about freaking people out). But I also don't want to discount it because I realize it is much more than just a gluten allergy. Of course I will go in depth about it with close friends and family and refer them to websites, etc., but what about coworkers, people in restaurants and grocery stores, etc.? Does severe gluten intolerance suffice? Do any of you have any good phrases that succinctly help convey the basics of the disease? Thanks so much.

There's no such thing as an ignorant question here! My doctor interchangeably calls me either celiac or gluten intolerant. I choose to explain myself as simply gluten intolerant because I think people understand that more. If I say I am celiac, alot of times I will get "what is that?" compared to gluten intolerance. With restaurants, I usually say I am gluten intolerant and will get very sick if I ingest wheat, barley, rye, and probably oats. I am self employeed and my staff witnessed me losing tons of weight (my clothes were seriously hanging on me) always tired, and spending a lot of time in the loo (thank goodness only office gals noticed this one!) Don't know what you do for a living but say you worked in an office, you may only need to say something if they bring in outside goodies to share etc. Its really up to you how much information you give them. You are right to include close friends and family because they can be your greatest support system. Celiac is a very serious auto immune disorder and I take it seriously but I stay positive when explaining it to those that want to know...as long as I am strict with the diet...I am not sick and feel the best I've felt in over 20 years! Welcome to the forum!

[Mother of Jibril]

Welcome to the group!

I've been off gluten for three months now, but I'm still working on this.

Honestly, I don't go out to eat very much. It's so hard to find things that don't have gluten, dairy, or corn Plus I'm getting more and more sensitive to cross-contamination. Ugh. After I was glutened by some french fries (at a place where the only thing they deep fry is french fries) I decided it just wasn't worth it to take a chance. So... I try to stick to basic things like salad, meat, eggs, and drinks (coffee, tea, etc...). I also tell people that I can't eat anything with wheat because it will make me very sick. IMO, you don't have to be more specific than that. Rye, barley, and oats are also forbidden, but I figure the average waiter/waitress is not going to have a CLUE if the food has those ingredients.

I stopped eating pork products 15 years ago for spiritual reasons and I'm really good about checking menus, but every couple of years I manage to bite into something that has bacon or ham. Mistakes happen. People get busy and they do things like, "Oops... forgot you didn't want bacon bits on your spinach salad... I'll just scoop them off." With gluten that is just NOT acceptable. Take a close look at your food when it arrives (before you take a bite!) and don't be afraid to send it back if you think there's a problem. And don't forget about the bread... either ask them to leave it off or put it on a separate plate.

Most of my co-workers are jerks I don't even try to explain. I'm also not forced to eat with them, so it's really no big deal.

Friends and family are a different story, especially family... because my celiac and gluten-sensitive genes had to come from somewhere! I give them as much information as they're willing to listen to, emphasizing how GOOD I feel being off gluten, dairy, and corn

[kimis]

I just carry a Rice Chex box around with me. If someone needs a further explaination, I just hand them the box and tell them to read the side panel.

[ShayFL]

A lot of peeps dont even know what "gluten" is. So be prepared.

I now just say gluten intolerant. It sums it up either way. I cannot eat gluten.

[kbtoyssni]

I usually say I have a gluten allergy so I can't eat wheat, barley, rye or oats. Allergy is a well-understood term so for waiters I don't think it matters if it's not technically correct. I don't need to get into the type of reaction my body has to gluten with a waiter; all they need to know is that I can't eat it. For people I know better or those who ask questions I start talking about the fact that it's actually autoimmune, etc.

[sbj]

am finding it a little hard to explain to people. I mean I recognize it as a disease but I feel like the word disease freaks people out ... I also don't want to discount it because I realize it is much more than just a gluten allergy. ... what about coworkers, people in restaurants and grocery stores, etc.?

I've had the same issues. It feels odd to have to get all wordy with people and explain it. It also feels strange to say 'disease.' Eyes tend to grow large and people take a step backwards! But I am sooo tired of responses like, "Oh - so you're allergic to wheat."

Lately I am leaning towards:

"I have an autoimmune disorder called celiac sprue. If I eat wheat or anything with flour - like that office birthday cake - then my small intestine gets damaged."

Rice Chex (I have some here at work):

"Celiac disease is a multi-system, multi-symptom autoimmune disorder that is triggered by gluten, a natural protein found in wheat, barley, and rye."

[*Daniella*]

Hello! I'm new to this celiac thing too. Tomorrow will be my 1 month anniversary.

What an excellent question. I'm having the same problem. When I try to descibe my situation people either shut down or don't care. One of my co-workers yesterday asked me if I was still on the diet. UMMM YES! FOREVER! I've sort of decided not to mention it until somebody asks why I'm eating the PB&J on a rice cake. Haha!

[Tallforagirl]

I was out at a restuarant yesterday, and the waitress, who claimed to know all about Celiac disease, asked me "how much gluten free are you - point 4 or point 7?" I have not the faintest idea where she got the idea that gluten intolerance can be measured in percentage points.

I ended up choosing a salad and garlic prawns, after confirming all ingredients.

Unfortunately this was my first date with a new guy. I really should have known better than to go for a meal on the first date. It was sooo embarassing. He thought that since the restaurant obviously didn't understand my needs, there was a good chance I might poop myself halfway home.

I quit, I don't want to do this anymore.

[NorthernElf]

I say I have celiacs and that gluten makes me feel like I have a combination of a hangover and the flu. No fun.

I have found that saying gluten intolerance makes folks think I can still have some gluten - like some folks with lactose intolerance can get away with certain milk products in small amounts.

FWIW, I never got a diagnosis because I went gluten free too soon for accurate testing. For awhile I felt silly saying I had celiacs since I never had a paper with a positive test...however, even small amounts of gluten affect me so I don't care anymore !!!

[ang1e0251]

I have come to say in restaurants "I have some severe food allergies and can't let even a crumb of bread touch my food or I'll have a reaction". They get this kind of wording and it sounds kind of mysterious to them since it isn't completely specific. I know it isn't accurate but it's a restaurant and the important thing is not to get sick.

If people make a comment or a "wow, you can't eat anything", I just give an "oh well" shrug. No further explanation is necesary to strangers.

I would call ahead to the caterer but I wouldn't depend that she won't make mistakes. Take some backup food or eat before you go. I've been hungry at those events and it's no fun.