Do You Take Your Celiac Disease Seriously?

[1desperateladysaved]

I surely take my celiac seriously.  I think we would all agree one may have other intolerances,  I believe they  may not be distinguishable with reactions from celiac.  I react to corn in a similar fashion, and can't eat rice for now.  There could be something else in me that causes these struggles besides celiac.  What difference does it make to me what besides celiac causes my problems, if for now I can't eat them?

 

Just now, I don't really care what I can't eat, just so long as I feel better.  Something must be right!

[answerseeker]

I surely take my celiac seriously. I think we would all agree one may have other intolerances, I believe they may not be distinguishable with reactions from celiac. I react to corn in a similar fashion, and can't eat rice for now. There could be something else in me that causes these struggles besides celiac. What difference does it make to me what besides celiac causes my problems, if for now I can't eat them?

Just now, I don't really care what I can't eat, just so long as I feel better. Something must be right!

Very true! The only other intolerance I've developed is dairy. Hoping it stays that way lol. I think I would be lost without rice :-)

Although I had cramping yesterday after eating eggs. This morning i have a little rash but not horrible. But my hubby made them and he used a Tupperware container to mix them that was used for storing gluten foods. Hoping it was a cc issue I don't want to give up eggs!

[GF Lover]

I wish to thank those who participated in this Discussion on the seriousness of Celiac Disease.  And to also thank those who continue to help the new members make their own way to better health.

 

Colleen

[answerseeker]

The admins should pin a list of "celiac myths" like the newbie 101 thread. I think a lot of people come here with misinformation, including myself!

[kareng]

The admins should pin a list of "celiac myths" like the newbie 101 thread. I think a lot of people come here with misinformation, including myself!

Whenever we debunk a celiac myth with proof people argue it is true anyway. I see that the univ of Chicago Celiac Center has this problem on their Facebook page. For some people, a blogger calling themself a healthy home economist or celiac coach are more of an expert than actual MDs and researchers. This in where I think we need to use common sense. If people want to believe something, even with valid evidence to the contrary.... Well... I better stop now.

This is a great place for easy to understand facts. You can type in a search like " corn " or " envelopes" and get info. They don't have every crazy rumor you might hear but they have a lot.

Open Original Shared Link

[IrishHeart]

The admins should pin a list of "celiac myths" like the newbie 101 thread. I think a lot of people come here with misinformation, including myself!

 

Oh, we always point people to valid sources that provide the information about celiac myths: Tricia Thompson, Shelly Case, U of C , etc.

as Karen mentioned...and you know what happens?  People argue loudly with us anyway. I cannot tell you how many times someone

has vehemently  told me she was glutened by any of the following: envelopes, stamps, dirty seats on the bus, books, steering wheels,

carpets, pillows, dog hair,semen, walking in the bread aisle, riding the subway, bananas, their next door neighbor who borrowed a rake,  eggs, the post office desk where she used the pen.... (and I am not making any of those up)

 

After awhile, we just say "okay" because they believe it is so and you cannot convince them otherwise.

. 

[bartfull]

Oh, we always point people to valid sources that provide the information about celiac myths: Tricia Thompson, Shelly Case, U of C , etc.

as Karen mentioned...and you know what happens?  People argue loudly with us anyway. I cannot tell you how many times someone

has vehemently  told me she was glutened by any of the following: envelopes, stamps, dirty seats on the bus, books, steering wheels,

carpets, pillows, dog hair,semen, walking in the bread aisle, riding the subway, bananas, their next door neighbor who borrowed a rake,  eggs, the post office desk where she used the pen.... (and I am not making any of those up)

 

After awhile, we just say "okay" because they believe it is so and you cannot convince them otherwise.

. 

I think it's very possible to get glutened by YOURSELF if you touch the dirty bus seat that a toddler with gluteny hands and lots of crumb spillage sat in, and then pop food into your mouth. But who in their right mind wouldn't WASH THEIR HANDS before eating after touching a dirty bus seat anyway? That's all it takes to keep from getting glutened, or to prevent illnesses from germs for that matter. WASH YOUR HANDS!

[notme]

I think it's very possible to get glutened by YOURSELF if you touch the dirty bus seat that a toddler with gluteny hands and lots of crumb spillage sat in, and then pop food into your mouth. But who in their right mind wouldn't WASH THEIR HANDS before eating after touching a dirty bus seat anyway? That's all it takes to keep from getting glutened, or to prevent illnesses from germs for that matter. WASH YOUR HANDS!

AMEN! 

 

i mentioned to my sister-in-law that i haven't been sick (cold, flu virus, bronchitis, pneumonia, etc) at all, not even a sniffle, for almost a whole year!   when they were dropping like flies into the sick bed, i didn't even get nausea.  nothing!  she says "that's because you wash your hands all the time"  - i was like, duhhh................  don't you??  ugh, everytime i pick the kids up froms school(s) the first thing they have to do when they walk in the door is go wash their hands - wash the school off - yuck!  i am a soap and water advocate 

[IrishHeart]

um, guys....no,  this woman told me it happened while she was sitting on the bus. She was not eating anything.

 

So...the gluten, what? absorbed somehow off  a stain on the seat..?..through her clothes, then through her butt  tissues, and somehow magically landed in her intestines?

 

I was not buying it.

[notme]

um, guys....no,  this woman told me it happened while she was sitting on the bus. She was not eating anything.

 

So...the gluten, what? absorbed somehow off  a stain on the seat..?..through her clothes, then through her butt  tissues, and somehow magically landed in her intestines?

 

I was not buying it.

THE GLUTEN FAIRY!!!     oh, she is sneaky..............

[bartfull]

THE GLUTEN FAIRY!!!     oh, she is sneaky..............

It depends on what time of year it was. If it was around Christmastime it might have been Evil Santa. Remember him from the old Calvin and Hobbes strip? (He was the one who always brought socks and underwear.) Maybe he put gluten in the woman's stocking!!!

[IrishHeart]

 fairy dust and  Santa  --  BOTH GLUTEN FREE!!

[answerseeker]

Oh, we always point people to valid sources that provide the information about celiac myths: Tricia Thompson, Shelly Case, U of C , etc.

as Karen mentioned...and you know what happens? People argue loudly with us anyway. I cannot tell you how many times someone

has vehemently told me she was glutened by any of the following: envelopes, stamps, dirty seats on the bus, books, steering wheels,

carpets, pillows, dog hair,semen, walking in the bread aisle, riding the subway, bananas, their next door neighbor who borrowed a rake, eggs, the post office desk where she used the pen.... (and I am not making any of those up)

After awhile, we just say "okay" because they believe it is so and you cannot convince them otherwise.

.

Lol you'd have to literally live in a bubble if that were all true. Walking in the bread isle? Really?

[answerseeker]

I think it's very possible to get glutened by YOURSELF if you touch the dirty bus seat that a toddler with gluteny hands and lots of crumb spillage sat in, and then pop food into your mouth. But who in their right mind wouldn't WASH THEIR HANDS before eating after touching a dirty bus seat anyway? That's all it takes to keep from getting glutened, or to prevent illnesses from germs for that matter. WASH YOUR HANDS!

Right. We do it to prevent colds and flu. I wouldn't touch a dirty bus seat then touch my mouth even if I didn't have celiac! Gross

[answerseeker]

Nope. not at all.

Seriously? I would never read any relevant current research, change my entire household, diet and nutritional plan, read books by reputable celiac specialists, work on two websites dispensing free advice like skittles, counsel people in my community who need help learning the G F diet, compile a thread for the newly diagnosed, annoy the crap out of people to go get tested, do everything in my power to get well, work with a physical therapist for 2.5 years to regain muscle strength  or become a vocal advocate for celiac.

 

Why would I do all that? Just to live a long, healthy life and make sure others can too? bah! that's crazy talk..!!.and good health is over-rated. 

 

ok, I'll be serious for a second...

Karen pretty much said what I would have said (so I will just say DITTO--what she said!!!) and add:

to anyone reading this thread, people who do stick around here after learning the ropes do so because they want to "pay it forward".

We were all newbies once too and people reached out to us.

 

We really do care about our fellow celiacs and if we sometimes seem a little "mother-hennish" or "tough love-ish" it's because we do not want any of you to suffer as some of us did. 

 

Make sense?

and I have been on the other end of Irish's mother hennish

and I'm healing very well because of it

[IrishHeart]

and I have been on the other end of Irish's mother hennish

and I'm healing very well because of it

no, that's all you, kid. You did the homework and wanted to get well. Just stay the course!  

And wash your hands....and wear clean undies.    love, mom

[psawyer]

Lol you'd have to literally live in a bubble if that were all true. Walking in the bread isle? Really?

Irish is not making that up. And we have seen it multiple times from different members.

I try to be a voice of reason here, with facts and evidence, but reason will lose to emotion more often than not. A zealot will not listen, no matter what you say.

[ItchyAbby]

Although I don't want to do damage to my gut for fear of cancer and lupus and all of the other horrible things that can happen to a celiac who eats gluten, I'll tell you a "secret". As a smoker, I have to admit that all of those long term scares don't always work. I KNOW smoking can cause horrible things too, but I haven't quit yet.

 

But if smoking could cause DH...

 

Yes, DH is my greatest fear. I have read enough and seen the pictures of those who suffer from it, and I know I too could be one bite of gluten away from having it myself. There is NO WAY I would EVER risk that! So when the long term scare tactics don't work on someone who is playing Russian roulet with their health, I think they should all be required to go to the DH section here and read every post, look at every picture. I'd be willing to bet quite a few of them would wise up and stay STRICTLY gluten-free.

This is so interesting - both the original post and bartfull's response -  and ties into something I've been thinking to ask the community: Why the hell to people "cheat"?! I don't get it, but I don't want to sound all "judgy". I started wondering, "Well, maybe this is just something that happens when you start feeling better?" Like, does everyone cheat once in a while, as though the pull of gluten is just too great to resist? So, I was going to ask this somehow: Does everyone cheat eventually, after they have been feeling good for a while?

 

Because, honestly, I cannot imagine EVER eating gluten again. DH put the fear of God in me (and I'm agnostic! ). I have never EVER felt anything even remotely like that in my life. Armpits to hipbones, hellacious itch and pain and heat and blisters and giant continents of hives. Poor sleep for months, week long panic attacks, shirts welded to my skin, and the crying, crying, crying. I WILL DO WHATEVER IT TAKES TO NEVER FEEL THAT WAY AGAIN. Anything - tell me I can only eat worms, and I'll do it so long as the DH stays away. It made me want to die. Death seemed like the only option for relief.

 

What I'm trying to say is: Gluten can eat a big bag of -----, for all I care. I have no desire for it. DH made sure of that.

 

But I do not want to sound like I am judging or ridiculing - I am new at this, just 4 months post-DX. Maybe this is common knowledge, that one's resolve to stay gluten-free breaks down after a while. I wanted to know so I could watch out for it, if that was the case. So, I am glad to see that it is not true across the board. I really cannot imagine that I will ever make eyes at a croissant or bagel in the future, knowing what it would put me through.

 

So, this is my long-winded way of saying that I take it very seriously. It's my life now - taking care of this body is #1. Feeling better is all the reward I need.

[w8in4dave]

I also take being Celiac and being Gluten free very serious , I am new at it and have made some very bad choices and mistakes! But I vow not to do it again!! And if I make another mistake! I will keep learning and shoving knowledge in my head. I am not perfect by any means. I am really trying to learn from those of you who have had this a very long time!!! If I sound stupid or sound like I don't want to listen to you just slap me!! (Ouch) Not really but yes, I take what you guys say to me very serious ... This disease is not going to get me!! I won't eat at Taco Bell again!! I promise!! 

[GF Lover]

This is so interesting - both the original post and bartfull's response -  and ties into something I've been thinking to ask the community: Why the hell to people "cheat"?! I don't get it, but I don't want to sound all "judgy". I started wondering, "Well, maybe this is just something that happens when you start feeling better?" Like, does everyone cheat once in a while, as though the pull of gluten is just too great to resist? So, I was going to ask this somehow: Does everyone cheat eventually, after they have been feeling good for a while?

 

Abby,

 

As you found out in this Topic, cheating is never an option when you have Celiac Disease.  When a diagnosed Celiac gets gluten somehow the body starts an all out autoimmune attack and we know how that feels, horrible.  I have the belief that if someone has diagnosed themselves as a Celiac and does not have a full force attack when they get gluten then the urge to cheat may be greater.  They have the "unknown" factor of not really knowing if they are damaging themselves or not.  I also believe that if someone with NCGI eats gluten, it is with the understanding that they may get all the usual symptoms but know there is no damage being done.  Even some people with a diagnosis in hand may cheat because they just don't care.  These factors may influence future decisions whether to eat gluten or not.   I also believe that the longer you eat gluten free the easier it is to resist any and all temptations.  When our minds forget what something tasted like or how it made us feel happy, than those cravings and urges fizzle away. 

 

Modifying your diet is the easy part of treating Celiac Disease.  Modifying your behavior is the hard part.

 

Colleen

[w8in4dave]

Abby,

 

As you found out in this Topic, cheating is never an option when you have Celiac Disease.  When a diagnosed Celiac gets gluten somehow the body starts an all out autoimmune attack and we know how that feels, horrible.  I have the belief that if someone has diagnosed themselves as a Celiac and does not have a full force attack when they get gluten then the urge to cheat may be greater.  They have the "unknown" factor of not really knowing if they are damaging themselves or not.  I also believe that if someone with NCGI eats gluten, it is with the understanding that they may get all the usual symptoms but know there is no damage being done.  Even some people with a diagnosis in hand may cheat because they just don't care.  These factors may influence future decisions whether to eat gluten or not.   I also believe that the longer you eat gluten free the easier it is to resist any and all temptations.  When our minds forget what something tasted like or how it made us feel happy, than those cravings and urges fizzle away. 

 

Modifying your diet is the easy part of treating Celiac Disease.  Modifying your behavior is the hard part.

 

Colleen

And your first sentence is my favorite!! When I first found out I had Celiac, my husband said "Ohhh you can have a lil" I said no a lil Gluten is like eating Poison Ivy"   Cheating is never an Option! 

[GFinDC]

I do take the gluten-free diet seriously.  But I can understand why people new to the gluten-free diet may not take it seriously at first.  In my case I ate gluten most days for 5 decades before some knucklehead told me I couldn't do that anymore or I would die.  That is kind of hard to take in at first.  After all, it didn't kill me for 50 years so it seems strange to think it suddenly would.  But things do change.  Inlcuding our bodies.  So after a while it sank in and I stuck to the diet as best I could.  Which wasn't great at first, since I didn't understand where gluten could "hide" in foods.  But people on this forum helped me understand that cross-contamination matters, and a dirty toaster can really get ya, and you do have to learn to eat differently.  It helped a lot that my body confirmed what they were saying.

I think a lot of the adjustment to eating gluten-free is learning new eating habits.  People are used to eating whatever they want, whenever they want it.  Going gluten-free you have to learn to eat what is safe, when you can get it.  And if you can't eat safely, don't eat.  Practically, that means people have to learn to plan ahead and bring food with them or research safe places to eat ahead of time.  It can seem complicated at first to have to check every single thing before eating it.  But after a while you learn how to eat safely.  It's a big adjustment for many people, but people can learn new things once in a while. They do tend to make mistakes during the learning process though.

After a while the gluten-free diet is the norm instead of the new thing, and it is easier to eat gluten-free.  People do get used to it.

[ItchyAbby]

...cheating is never an option when you have Celiac Disease. 

 

That's exactly how I feel. Once I knew my torturer's name was Gluten, the idea of ingesting it just seemed abhorrent. I also had the advantage of having lived with my gluten intolerant S.O. for three years - our house was already gluten free and he was vigilant about not eating gluten when we went out (he is self diagnosed - his mother has Celiac).  So, before my dx, eating gluten was just an occasional thing, anyway.

[moosemalibu]

I take it very seriously. I'm still new and learning but I definitely avoid gluten, make my own meals and read labels. My boyfriend also let me make the house gluten-free and he is gluten-free when at home. He brushes his teeth when he comes home from work and we are all good.

 

I think my mom has celiac disease (based on her eosinophilic esophagitis, hypothyroidism, joint pain, the list goes on) and I tell her to get tested. She said she doesn't want to know because she doesn't want to give up gluten! What the what?! If you didn't have to go get your esophagus dilated every 6 months and you could swallow your food wouldn't you want to quit the gluten? I have finally convinced her to get tested when she goes to see her throat specialist. But she refused to make a separate appointment to get tested for Celiac's. My family thinks I am on a crusade of fear tactics but I want them to be healthy. It is a hereditary disease, I'm not making this up! I had to get it from someone. And my aunt is Celiac (my mom's sister). So the likelihood is high that my mom is too. She doesn't have the GI symptoms but that doesn't mean she doesn't have it, right?! Am I crazy? Am I pushy? So be it.

[Pegleg84]

(Great thread, guys!)

 

My first encounter with Celiac Disease was my aunt, who was diagnosed while battling thyroid cancer that was likely caused by years of undiagnosed Celiac, so yeah, I knew the risks were big from the get-go. Even though I wasn't officially diagnosed, the fact that it's so prevalent on both sides of my family gives me no doubt that I have it, and I have treated myself as having Celiac since the first week I went on the gluten-free diet and said WOW do I feel better.

 

I've always taken it seriously, but in the early days it was hard to know what "serious" meant. This forum has been the single best resource and I don't know what I would do without it. I'd probably still be using my old cutting board, eating out willy-nilly, and kissing my beer-loving boyfriend between swigs. Once I really buckled down, it made all the difference.

 

I never "cheated" in the sense of deliberately deciding to eat something gluteny, but I have made ignorant mistakes by not asking enough questions or deciding to take a risk that the shared fryer wouldn't get me. No more of that for me. Also, the blank "Gluten? What?" stare is now a sign to back out of the restaurant. I've become more sensitive over the years, so CC often comes back to bite me in the arse. For me these days, gluten isn't a problem. Avoiding gluten is the easy part. It's my intolerance to soy that's a complete pain in the arse and much more limiting.

 

I've stuck around the forum because I still need help sometimes, and want to give back with advice for those still finding their way.

 

Oh, and a "debunked gluten myths" sticky post would be a great idea, or something added to the Newbie 101. I know I thought there was something to the cross-reactivity idea until someone pointed to the Chicago celiac disease centre stating it was bunk.
(Just a note, though, that I was unknowingly using shampoo with hydrolized wheat protein for months, and it might not have had much of an effect, but I swear I'm doing a little bit better since I switched. Might just be in my head, but better safe than sorry.)

 

BIG HUGS TO ALL! (and coffee cake)