Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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


LisaDances

Recommended Posts

LisaDances Newbie

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



joolsjewels Newbie

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.

kittty Contributor

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.

LisaDances Newbie

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.

JNBunnie1 Community Regular

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!!"

mushroom Proficient

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.

GottaSki Mentor

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GF Lover Rising Star

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

Persei V. Enthusiast

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

ravenwoodglass Mentor

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!

GFinDC Veteran

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!

jlaw Apprentice

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

srall Contributor

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.

bartfull Rising Star

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.

LauraB0927 Apprentice

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!!!!

srall Contributor

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.

LisaDances Newbie

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.

  • 2 months later...
LisaDances Newbie

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 Open Original Shared Link forum community who suggested many of these statements.

National Digestive Disease Information Clearing House: Open Original Shared Link

myquest7846 Newbie

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.

GottaSki Mentor

Great job ~ LisaDances :)

CaliSparrow Collaborator

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!

mushroom Proficient

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

gatita Enthusiast

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

  • 2 weeks later...
L.J. Rookie

: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:

Chaff Explorer

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.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.