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What Do You Want To Tell Your Friends And Family About Living Gluten Free?


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25 replies to this topic

#16 srall

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Posted 11 October 2012 - 05:59 AM

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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#17 LisaDances

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Posted 12 October 2012 - 01:04 PM

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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#18 LisaDances

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Posted 12 December 2012 - 02:34 PM

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.nid...es/pubs/celiac/
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#19 myquest7846

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Posted 12 December 2012 - 04:19 PM

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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#20 GottaSki

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Posted 12 December 2012 - 06:43 PM

Great job ~ LisaDances :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#21 CaliSparrow

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Posted 12 December 2012 - 07:22 PM

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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Last glutening: 12/28/13 (long time FOR ME!)
April 2014: no more reintroducing foods, not rocking the boat, no studying (except during insomnia)
March 2014: Reintroducing intolerant foods. Yolks & banana are a "no". Dairy NO
Year 2: Mental clarity improving. Hello to normalcy.
October 2013: Functional Medicine doc ref to cardiologist for possible sick sinus syndrome (deadline May)
September 2013: 55+ food intolerances, mercury poisoning, sIgA 50, leaky gut, adrenal fatigue, hormone disruption, ferritin 7, low Vit D, low Vit B6
January2013: Dairy-Free, Soy-free
November 2012: Gluten-Free
Year 1: Migraines resolved, OCD diminished, Change in skin texture, EyeBrows lifting & eyes bigger, Better memory, Better cognitive function, Better problem-solving capabilities, Lower anxiety level, Better outlook, Arrhythmia reduced, hope

#22 mushroom

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Posted 12 December 2012 - 07:34 PM

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


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#23 gatita

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Posted 13 December 2012 - 10:29 AM

That is a great flyer. I'm going to send it to friends and family!!!
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Diagnosed with wheat hates me 4/13


#24 L.J.

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Posted 26 December 2012 - 02:22 PM

: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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#25 Chaff

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Posted 26 December 2012 - 06:26 PM

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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celiac, hypothyroid, hereditary hemochromatosis
 


#26 Hala

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Posted 27 December 2012 - 05:08 AM

Ooh, is there any way this could be made share-able on facebook? I wouldn't want to go as far as put it as a status/send out messages but would love some friends to read it....
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Diagnosed with Coeliac Disease after positive blood test and endoscopy (total villous atrophy and inflammation)

Gluten-free since 13th November 2012

Asperger's Syndrome.

Crohn's Disease.

Pancreatic Insufficiency.



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