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What Do You Want To Tell Your Friends And Family About Living Gluten Free?
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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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    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
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      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
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