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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

What Do You Want To Tell Your Friends And Family About Living Gluten Free?
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26 posts in this topic

Hi all,

Some of the students on the campus I work at have started a wonderful "Gluten-Free campus" awareness group. They are having a fair in a couple weeks to increase campus awareness. I thought it would be useful to have a small flyer available to pass out on "How can I help my Gluten-Free Friend" with some do's and don'ts we gluten-free people wish our families and friends knew.

For example:

Don't: Offer us "just one bite" of that really yummy treat or tell us "you can cheat this time". Sorry, we really can't.

Do: Continue to invite us to do things: we still want to hang even if we can't have a beer with you.

Don't: offer us home baked goodies--- even if the treat was cooked without gluten, if it was made in a kitchen that has flour in it, it isn't safe for us.

Please suggest some other things that we could put on this flyer. What do you want to tell your friends and family??

Thanks!

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Do look for Gluten-Free treats for your Gluten-Free friend. Keep one or two things stocked at your place for them.

Plan on dining somewhere that has a Gluten-Free menu if you eat out so your friend does not feel out of place.

Do not ask so many questions that the person is the center of attention, unless they feel comfortable.

If you can read Elizabeth Hasselbeck's book The Gluten-Free Diet she has an entire chapter about entertaining and how to make a person feel comfortable.

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A gluten free diet isn't a fad or a weight loss tool - it's a necessary medical treatment.

Lots of people think it's just a celebrity diet plan, because that's the only time they hear about it in the media.

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Thanks JoolsJewels and Kitty, these are great suggestions. Any more out there?

If I get this together in time for our Gluten-Free carnival next week I'll post it here.

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My close friends all know the drill and are wonderful, but people I only see on an occasional basis are so persistent in trying to feed me. I would say to people, "Stop trying to feed me! The world will not end if I bring my own dinner!!"

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Even though it is called a disease, we are not sick (once we have recovered from gluten damage). We will only be sick if we eat gluten.

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Do not feel sorry for us - we can control a serious medical condition by eating healthy foods - no medication, no surgery. We are fortunate :)

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Celiac is not an allergy, it is an autoimmune disease.

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No, I don't do photosynthesis. I eat while I am at home.

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It's not the end of the world to be gluten free. There is still lots of food we can eat. If you have symptoms get yourself tested!

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1 of 133 people in the US have celiac, and over 90% don't know it. About 30% of the population has at least one of the genes for celiac disease, and could develop the active disease at any time in their life. You probably know several people with celiac disease who aren't aware they have it.. Diagnosis in the USA takes on average about 9 years. If you know someone with IBS, thyroid disease, arthritis or any other autoimmune condition, suggest they get tested for celiac disease too. You may save their life!

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This sounds great Lisa. If you do make a flyer could you please provide us with a digital copy somehow?

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That I cannot "reverse" my gluten intolerance by eating small amounts of it, gradually increasing the amounts. So glad it worked for you (I personally suspect your gut has healed for now and you will be hit hard again in a matter of time), but as for me and my child...um: NO.

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No, worrying about cross-contamination is NOT "going overboard".

Seriously, if you touch my food after eating a sandwich, I WILL get sick. If I just pick the croutons off of my salad, I WILL get sick. If I just eat the pie filling and don't eat the crust, I WILL get sick. If my boyfriend kisses me without brushing his teeth after eating pizza, I WILL get sick.

So if you call trying NOT to get sick "going overboard", I suggest you think again.

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Please don't tell us that that you wouldn't be able to handle our situation because you "would just DIE without breads and cakes" - we get it, you like bread....personally, I'd prefer to go an hour without running to the bathroom... :)

(I heard that one THREE times this week!)

But more importantly, get yourself tested!! I had no idea I had it, so you may not either!!!!

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Please don't tell us that that you wouldn't be able to handle our situation because you "would just DIE without breads and cakes" - we get it, you like bread....personally, I'd prefer to go an hour without running to the bathroom... :)

(I heard that one THREE times this week!)

But more importantly, get yourself tested!! I had no idea I had it, so you may not either!!!!

Sort of on that note: I heard from 2 different people over one weekend that they put their dogs on a grain free diet because it's so much healthier for the animals...but they themselves would "die" without bread.

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1 of 133 people in the US have celiac, and over 90% don't know it. About 30% of the population has at least one of the genes for celiac disease, and could develop the active disease at any time in their life. You probably know several people with celiac disease who aren't aware they have it.. Diagnosis in the USA takes on average about 9 years. If you know someone with IBS, thyroid disease, arthritis or any other autoimmune condition, suggest they get tested for celiac disease too. You may save their life!

This is great. Is there references for any of this? I would like to list sources.

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Thanks again for the tips provided above. Below is the final text for what we distributed. It was formated to fit one side of a 8.5 X 11 sheet of paper. (I couldn't figure out any way to attach a pdf, but if there is a way I can do that).

*******************************************************

About the Gluten-Free Life:

Gluten is a protein composite found in wheat, barley, rye and some other grains. Some people must eat Gluten-Free because they have Celiac’s disease. Some others have an allergy to wheat specifically, and it is just easier to cut out all gluten. And some more have a condition called “non-celiac’s gluten intolerance” which is only recently being accepted by the medical community.

For Celiac’s disease alone-- 1 of 133 people in the US have celiac, and over 90% don't know it. About 30% of the population has at least one of the genes for celiac disease, and could develop the active disease at any time in their life. You probably know several people with celiac disease and some may not be aware they have it. Diagnosis in the USA takes on average about 9 years.

Symptoms include GI distress, inflammation, joint pain, and fatigue. Also, if you know someone with Irritable Bowel Syndrome, thyroid disease, arthritis, or any other autoimmune condition, suggest they get tested for celiac disease, and/or try a gluten-free diet. You may save their life!

How to be a good “Gluten-Free” friend!

Do--- know that a gluten free diet isn't a fad or a weight loss tool - it's a necessary medical treatment.

Don't-- offer us "just one bite" of that treat or tell us "you can cheat this time". Sorry, we really, really can't.

Do-- invite us to do things: we still want to hang even if we can't have a beer with you (most beer has gluten).

Don't-- offer us home baked goodies--- even if the treat was cooked without gluten, if it was made in a kitchen that has flour in it, it truly isn't safe for us.

Do-- look for certified Gluten-Free packaged treats for your Gluten-Free friend and maybe keep one or two stocked.

Don’t--- tell us worrying about cross-contamination is "going overboard". Seriously, if you touch our food after eating a sandwich, we WILL get sick. If we pick the croutons off of our salad, we WILL get sick. If we just eat the pie filling and skip the crust, we WILL get sick. If our partner kisses us without brushing their teeth after eating pizza, we WILL get sick.

Do-- plan on dining somewhere that has a Gluten-Free menu when you eat out so your friend does not feel out of place.

Don’t—reuse plate or swap utensils at a salad bar or buffet.

Do-- stop trying to feed us! The world will not end if we bring our own dinner!

Don’t-- think it's the end of the world to be gluten free. There is still lots of food we can eat.

Do--- know that I cannot "reverse" my gluten intolerance by eating small amounts of it

Don't-- tell us that that you wouldn't be able to handle our situation because you "would just DIE without breads and cakes" - we get it, you like bread. So did we once. It turns out to be a lot less tempting when it makes you sick.

Do—know that even though it is called a disease, we are not sick (once we have recovered from gluten damage). We will only be sick if we eat gluten. And it is not contagious.

With thanks to members of the www.celiac.com forum community who suggested many of these statements.

National Digestive Disease Information Clearing House: http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

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I would like to remind people that feel that following a gluten free diet because I have celiac disease is not a choice but I am trying to save my life. That if I don't follow my diet to the letter that I will continue to have stomach damage possibly to the point of giving myself cancer. It's like quitting smoking it's life saving - not a choice.

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Great job ~ LisaDances :)

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My close friends all know the drill and are wonderful, but people I only see on an occasional basis are so persistent in trying to feed me. I would say to people, "Stop trying to feed me! The world will not end if I bring my own dinner!!"

I love it!

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Thank you, LisaDances !!! That is great. I am going to print it out and give it to my friends :)

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That is a great flyer. I'm going to send it to friends and family!!!

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:D Had to start this with a smily! Hang in there with the gluten-free foods--it takes time (and talking here) to get a clear understanding of how *your* own person gut words!!!!

AND, Welcome!!!.. ask questions ... add thoughts.... comments.... (and for sure use the emoticons!...they truly help you express your feelings!!!! :lol: :lol: :lol:

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Do-- stop trying to feed us! The world will not end if we bring our own dinner!

Hilarious. I wish I could wear a button saying something like this.

Another message I'd like to send the world -- just because I can't eat gluten doesn't mean I can't also eat other things. Stop trying to offer me a panoply of other foods I also can't eat, and then requiring me to list out everything that's safe for me. It's the most boring conversation in the world.

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