Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

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:

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




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
      104,091
    • Total Posts
      920,310
  • Topics

  • Posts

    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
    • Along those lines, many Americans are now pursuing gluten-free eating. Gluten ... Diagnosis of celiac disease typically requires a history and physical ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,121
    • Most Online
      1,763

    Newest Member
    Sambud
    Joined