• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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 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 Say? How Do I Explain Celiac?
0

14 posts in this topic

I just had two of my best girlfriends over for a glass of wine tonight and to talk about our twin girls' Celiac diagnoses and the impact. I realized I have a LOT to do to clearly communicate the gravity of the situation. These are really good girlfriends--the kind of friends that are honest, fair, but are also good, critical thinkers -- the friends that keep you honest. Here are some of the comments they made during our discussion that I didn't have good explanations for:

Friend: "So having one crumb of gluten might make one of the girls have a bout of diarrhea"

Me: "Yes, but it's having a long term impact too. Any amount of gluten damages the villi and sets them up for long term issues like cancer."

Friend: "Yeah, but doesn't everyone respond differently and some are more sensitive than others."

Me: "Yes, and we don't know what is going on in thier guts. We have to treat gluten like a peanut allergy or like rat poison."

I still wasn't convincing. They didn't understand why I had given away the playdoh and replaced their play lipstick with gluten free lip gloss, etc.

Wow! I didn't realize this was going to be so difficult to explain!

Suggestions?

Thanks Thanks Thanks!

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


I just had two of my best girlfriends over for a glass of wine tonight and to talk about our twin girls' Celiac diagnoses and the impact. I realized I have a LOT to do to clearly communicate the gravity of the situation. These are really good girlfriends--the kind of friends that are honest, fair, but are also good, critical thinkers -- the friends that keep you honest. Here are some of the comments they made during our discussion that I didn't have good explanations for:

Friend: "So having one crumb of gluten might make one of the girls have a bout of diarrhea"

Me: "Yes, but it's having a long term impact too. Any amount of gluten damages the villi and sets them up for long term issues like cancer."

Friend: "Yeah, but doesn't everyone respond differently and some are more sensitive than others."

Me: "Yes, and we don't know what is going on in thier guts. We have to treat gluten like a peanut allergy or like rat poison."

I still wasn't convincing. They didn't understand why I had given away the playdoh and replaced their play lipstick with gluten free lip gloss, etc.

Wow! I didn't realize this was going to be so difficult to explain!

Suggestions?

Thanks Thanks Thanks!

I'm sorry about your friends - maybe you've opened their eyes a little and given them something to think about. Time will tell!

I've discovered that "everyone responds differently" to the information about celiac and gluten intolerance. Some people take that "crumb" of information and are very interested to learn. To some people that same crumb of information results in a case of mental diarrhea (for example, my mother, my sister, my brother....). I've learned not to bring it up unless it's relevant. Then if it becomes relevant, I start with a little information. If someone's interested, I attempt a basic education, and go from there. If I see their brain begin to cramp and eyes glaze over, then I just stop.

Our house is gluten-free. No play-doh, no anything with gluten. I don't have to explain to anyone or defend my position. It just "is."

I hope your girls get feeling better!

1

Share this post


Link to post
Share on other sites

Thank you! I love the crumb, D, etc references! I'll be able to remember better to adjust to each person! :)

0

Share this post


Link to post
Share on other sites

I agree with Zimmer about the usefulness of being sensitive to how much information someone can absorb. A lot of people never really "get" the impact of celiac. Even my friends who are gluten-free for various non-celiac health reasons do not eat a celiac-safe diet.

The answer that I find easiest for people to understand is: "Your immune system is designed to kill a single virus. A crumb of gluten is enormous by comparison. My immune system won't miss a trace of gluten, and when my immune system finds gluten, it gets confused and damages my small intestine. Even if it isn't enough damage to cause malabsorption it is increasing my risk of cancer and other autoimmune diseases."

1

Share this post


Link to post
Share on other sites

I think it is also important to differentiate between symptoms and the actual auto-immune response: even if your twins don't react (with symptoms; overtly or right away) to that crumb, as Skylark mentioned, their bodies will find it and react (silently).

1

Share this post


Link to post
Share on other sites
Ads by Google:


I agree with Zimmer about the usefulness of being sensitive to how much information someone can absorb. A lot of people never really "get" the impact of celiac. Even my friends who are gluten-free for various non-celiac health reasons do not eat a celiac-safe diet.

The answer that I find easiest for people to understand is: "Your immune system is designed to kill a single virus. A crumb of gluten is enormous by comparison. My immune system won't miss a trace of gluten, and when my immune system finds gluten, it gets confused and damages my small intestine. Even if it isn't enough damage to cause malabsorption it is increasing my risk of cancer and other autoimmune diseases."

SKylark, this is GREAT! Really helpful. I've never thought of it that way before.

0

Share this post


Link to post
Share on other sites

SKylark, this is GREAT! Really helpful. I've never thought of it that way before.

I love that as well!!! It makes so much sense,,

0

Share this post


Link to post
Share on other sites

I agree with Zimmer about the usefulness of being sensitive to how much information someone can absorb. A lot of people never really "get" the impact of celiac. Even my friends who are gluten-free for various non-celiac health reasons do not eat a celiac-safe diet.

The answer that I find easiest for people to understand is: "Your immune system is designed to kill a single virus. A crumb of gluten is enormous by comparison. My immune system won't miss a trace of gluten, and when my immune system finds gluten, it gets confused and damages my small intestine. Even if it isn't enough damage to cause malabsorption it is increasing my risk of cancer and other autoimmune diseases."

Love the explanation!

0

Share this post


Link to post
Share on other sites

I tend to tell stories. People seem to get it that way. They can relate, I guess. I usually tell about accidentally putting a piece of my gluten-free bread in the toaster after being gluten-free for many months. It made me really sick. I emphasize, "Just the crumbs set off the autoimmune reaction!"

0

Share this post


Link to post
Share on other sites

You should explain that even though someone's symptoms may be more or less severe, the immune reaction is still there, the physical damage to the intestines is still there. Geez, for a kid it's even more important to make sure they get all the nutrients they can get...it's almost scary how much of an effect what happens to us as kids has longterm effects on us as adults. Furthermore, the damage it causes can potentially last for years. It's not 'you either get diarrhea or you don't', it's 'you get damaged and it takes a long time to heal, AND you may get diarrhea'.

The fact that they may not have a heightened response to the gluten like vomitting and migraines is really just something to be thankful for.

Try a comparison like, oh...it's like not letting your kid play with knives because whenever they do, they always end up cutting their hands. Sure, your kid's not stabbing themselves in the eye with the knife, even though some kids who play with knives end up doing that, but the fact that they stab their hand is enough of a reason to never give your kid a knife.

Ok, that's not a great example because you never want to give your kid a knife, but you get the point.

0

Share this post


Link to post
Share on other sites

My girlfriend has Celiac (as well as being casein-intolerant, a Type 1 diabetic and having kidney disease), and I find myself being afforded the position of explaining why she's not eating X food, occasionally. Conversation might go:

"So, why doesn't she eat x ?"

"She has Celiac ."

"What is Celiac?"

"She can't eat gluten. Twenty parts per million is what has been kinda defined as 'gluten-free', even though really that's twenty parts too much. At that level, it's like if someone makes her a salad and they accidentally put croutons on, they have to make a new salad because the residual crumbs are way too much. She can't walk into bakeries because of the residual flour in the air."

"Wow. What does gluten do to her?"

"It's like ninja stars to her intestines."

"Ow."

"Yeah."

This *appears* to provide the listener with both an understanding of the severity of the condition as well as some insight as to the lifestyle impact.

Hopefully as more documented success stories are accumulated, we can create a repository of methods that can be read and applied in different situations.

0

Share this post


Link to post
Share on other sites

"It's like ninja stars to her intestines."

I'm totally stealing this! B)

0

Share this post


Link to post
Share on other sites

Consider yourself lucky that you have friends that ask YOU, rather than talk about it among themselves. They are giving you the opportunity to educate them, rather than gossiping behind your back. Thank them for that, next time you talk. It will open their minds and keep you from appearing defensive in their eyes.

I love the explanations offered by others here. As an early gluten-free-er, I felt happy that I was not one of those "crumb people" who was sensitive to minute particles of gluten. Yeah, laugh at me now, but that was in the early stages of my education. I've learned since. So, if those directly affected can be so mis-informed, we have to forgive those who have never been affected by it.

0

Share this post


Link to post
Share on other sites

"It's like ninja stars to her intestines."

That is the best thing ever!!! :ph34r:

Your girlfriend is very lucky to have someone who is so supportive and well informed, who can also speak up with humor and eloquence to explain the severity of the condition so well.

Oh...and I am also stealing that line :)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,424
    • Total Posts
      930,480
  • Member Statistics

    • Total Members
      63,848
    • Most Online
      3,093

    Newest Member
    glutenfreekiddo
    Joined
  • Popular Now

  • Topics

  • Posts

    • Love reading this story as it is rare (I think) to find someone else with the swallowing issues!  Hate that this is your experience however!   My daughter also has the swallowing issues and it got so severe (we had no idea about Celiac) that she had to do intensive therapy to learn how to swallow again.  It got better but never resolved.  Once she went gluten-free it got way better though a recent exposure to oats caused it to flare up again.  Do you mind me asking - Has your swallowing issues 100% resolved being gluten-free?  Does it ever actually go away and stay away or will it always pop up from time to time?
    • I will say what everyone else says and get tested again with the endoscope and biopsy to confirm, you will need to be on gluten for 12 weeks for blood test 2 weeks for endoscope at least a slice of bead a day.  The thing about celiac is many symptoms can be quite minor, hell even before I had my MAJOR symptoms show I had some of the other issues show up in my every day life and I just thought it was normal.  Regardless if you keep eating gluten with celiac disease it will slowly eat away at your body internally til it does become a problem. Celiac is a autoimmune disease that reacts to the gluten proteins, and has misdirected attacks on your own body internally by mistake trying to kill the gluten. Now the damage can lead to all kinds of other auto immune diseases, random allergies, food intolerance, and even cancer.   I suggest if you do have it, stay on the gluten-free diet, your just basically changing brands there are many gluten-free food versions of everything now days. Be thankful you got this early, I developed issues with dairy, corn, peanuts, and a whole list of others along with another autoimmune disease Ulcerative Colitis that makes it so I can not eat sugars or carbs or my intestines swell.  Getting on a gluten-free diet before your damage progresses will not only keep you healthier for longer, and let you live a pretty normal life but also save you from this pain and very limited diet if the damage progresses too much. As to your fatigue, you changed over to gluten-free diet, you stopped eating a bunch of the Fortified foods, and depending on the route you took of either whole foods ore more processed foods. You could be eating to many empty carbs, starches, and not enough nutrients. OR if you took the whole foods approach you be lacking in your daily calorie intake or not the right ratio of nutrients. You might have to supplement a few of them.
    • REALLY odd call out here, I am attending a anime convention called A-Fest in Dallas come August, I need someone to split the room with it who is gluten-free. I take extra precautions, I COOK all the food, bring only CERTIFIED foods into the room, The room will be Gluten Free, Corn Free, Dairy Free, Peanut Free. I am trying to find someone to split the room cost with, that would be safe to be around I CAN NOT AFFORD to get sick at one of these things, it is one of my few joys left in life and get very paranoid around them. So I need someone who is also gluten-free to make sure the room stays safe (YES I have done with with a non celiac with the rules down and well stuff happens so not chancing it). Room split is food coverage comes to $400 if it is just two people.  4 day convention, I will arrange a meal plan around your diet as long as it is free of my allergens. I will also provide various snacks, baked goods, and even stuff to take home with you.   https://animefest.org/ ^Convention info.
    • Hi Jennifer, This thread might have some information that would help you.   Your doctors are pretty lame IMHO.  Perhaps you can find a celiac group in your area that has local meetings for support.  They might also suggest a different doctor who knows how to treat celiac patients.  
    • The initial reason gluten free diets came about was to treat a condition called celiac disease—an autoimmune disorder known to affect at least three ... View the full article
  • Upcoming Events