This is not a call to digital arms. I don’t want everyone swarming Jimmy Kimmel’s Facebook and Twitter pages with angry messages. (But if you still want to hit Fallon’s for his idiotic skit, I’m all for it.)
This post is not about him…it’s about us and our role in how “gluten-free” is being perceived in the public eye.
I want you to watch the video above (or you can watch it here).
Ignore the joke about how gluten-free people are a bunch of d***wads. That refers back to an earlier joke in the show with the always funny Tom Hanks.
And ignore the joke about how he’s not even sure gluten exists. He’s just being a wise-ass, which is his brand of humor (and mine).
What I would like you to do is check out Jimmy’s face at the 19 second mark and the audience reaction when Rachael Ray (who fails in every way possible in this clip) just mentions the word “gluten”.
See Jimmy’s face? That’s a face of disgust. He’s as sick of hearing about gluten as I am.
And the audience reaction? Just the mention of the word brings laughter.
And I ask myself…why?
What is it about gluten that has turned it from a protein to a running gag?
Why am I now embarrassed to mention the word when I’m out and about?
Is it the Paltrows, Kardashians and Cyrus’ of the world who spew gluten-free-this and gluten-free-that to their bazillion followers and then of course still eat gluten? Perhaps.
Is it the Wheat Belly and South Beach Diet guys who tell everyone to stay off gluten, while they wipe their asses with hundred dollar bills? Could be.
Is it the Doctor Oz’s and all of the other media whores who keep talking about gluten because it’s the hot topic of the day and they know it’s ratings gold? Quite possibly.
Most likely it’s a mixture of these three things.
But let me bring in a fourth element.
What if it’s us? (Or if you really want to point fingers…what if it’s me??)
What if we’re one of the reasons people treat it like a joke?
Any time our disease is misrepresented in the media, the community does what they do best…they make their voices heard.
But what if all this yelling and screaming is having an adverse affect? Does this give off the impression that we’re a bunch of demanding whiners?
I see Twitter jokes all the time and if I’m in a pissed off mood, I may fire back with a sarcastic response, which of course leads to a bunch of people Twitter-bashing me. It’s quite the sad spectacle.
Should I just shut my mouth when others are making ignorant comments about our disease?
I don’t know. Like many other questions on this post, I don’t have an answer.
All I do know is that we can’t sit quietly while the rest of the world laughs at our plight. There’s a balance in there somewhere. We need to continue to educate…to create awareness…to get the absolute truth about our disease out there. But we need to do it in a way that helps our cause and not hinders it.
It sucks having our disease. I cannot emphasize that enough. And we’re up against a hell of a lot of forces. Perhaps that’s why we yell and scream.
I received an email yesterday from a woman who, after giving birth, was passing out and had stroke-like symptoms. What did her doctor do? He put in a mental hospital. She was put on Zyprexa, Lexapro and Atavan. She was taken away from her 3 kids. Once she was released, she “Googled the hell out of my life”, found a new doctor and was diagnosed with celiac. She is finally on the road to recovery.
These are the stories that need to be heard.
And when Rachael Ray, who makes a living talking about food, cracks a joke like “have another bowl of pasta” instead of taking five seconds to mention celiac disease, I realize that we need to keep doing what we’re doing.
So let the haters hate.
Let the jokesters joke.
Let the Kardashians do whatever it is they do.
We’ll just keep on keeping on folks.
Continue to be the voice of reason; the voice of passion; the voice of knowledge. And if it means a little bit of kicking and screaming, so be it.
And one day…the laughter will stop.
77 thoughts on “Are We Hurting Our Own Cause?”
I honestly believe intelligent people have empathy for those of us with celiac disease. I think people are tired, in general, of people who adopt ANY type of dietary restriction for the fad aspect, not because of medical necessity.
It makes someone appear demanding and frivolous.
Years ago, I once rolled my eyes at people who trialed veganism, atkins, south beach, paleo, organic this or that… when I knew absolutely nothing about nutrition or gluten intolerance.
And back in 2007, when someone opened a “gluten free bakery and restaurant” near me, I laughed and snarked to the hubs “what’s gluten and why do we need to be free from it”? True story!
Little did I know what was happening inside me and how gluten would try to kill me in the coming months.P.S. That GF bakery owner? Is now one of my closest friends.
It’s ignorance, kiddo–pure and simple.
Some people just do not know what gluten is and why it causes drastic health consequences for people with celiac and NCGS. When I try to explain all this to family and friends who certainly exhibit signs of gluten intolerance, I am met with resistance (and behind-the-back scoffing, too, I am sure) . Does not stop me from educating any chance I get.
To counter that type of response we often get, we must continue to educate. And laugh.
Just tell the truth about gluten and what it does to a celiac.
The truth is on our side.
Spot on Irish…as usual.
Head in the sand approach.
People don’t want to know and laugh about it because they are scared. With such a serious change to ones lifestyle if diagnosed with celiac or a gluten intolerance people are going to be in denial about these conditions. Educating them is probably just going to make them more scared and so more ignorant, they don’t want to hear it. As more people adopt a gluten free lifestyle eventually people may view it as not so drastic and take their heads out of the sand.
People smoke and you are wondering why you can’t educate them about gluten. Im sure 20 years ago people laughed off lung cancer because they were scared as well.
Yeah, this is a tough one. There are definitely good and bad ways to speak up for ourselves, and the strategy we take has to be different depending on who we’re talking to and the situation, and convincing anyone of anything ever is so hard, especially when you run any risk at all of seeming whiny or as though you’re just speaking out of self interest. Sometimes I think nobody ever really listens to anything anyone else says.
I recently agreed to be interviewed by a journalism student for a class project about gluten-free diets, and though she did a nice job on editing the video and interviewed some great folks, I thought she cut out the most interesting things I said, about not necessarily feeling better right away, and about the many people trying the diet not to lose weight but to deal with symptoms they’re embarrassed to reveal (though she left in me claiming that I’m a great cook, haha)…and in the end she looped right back around to calling the diet “the latest weight-loss trend.” ARGH! Seems there’s just no way to stop people from saying the same things over and over again once they’ve got an idea in their heads.
“Sometimes I think nobody ever really listens to anything anyone else says.”
I’m sorry…were you saying something? 😉
Great post. I now get really embarrassed when I have to talk about it which seems to be a lot around the holiday season. Sometimes I think it’s karmic payback for all the eye rolling at people’s food allergies I did before I knew what it was like.
Crazy…isn’t it? Embarrassed about a disease we have no control over. Or I should say the treatment of the disease.
I think you are exactly right. We are just feeding into the bullsh!t and giving them more fodder for their comedy! All above are soooo right about being embarrassed about asking about gluten free when we go out to eat. It is SUCH a pain in the A$$~and people are sooo clueless! I went out the other day and the waitress was like, “Huh? What are you talking about?” The manager came over and explained to her that there WAS a gluten free menu. Needless to say it was a plain salad night for me!!!!!!!!!!!!!!!!!
Not a very good manager if the waitress had no clue. Sigh.
I’m fortunate enough that my entire family is gluten-intolerant, with the exception of my parents, and my incredibly tolerant boyfriend, who has a lot of food allergies of his own.
(My Dad is an M.D. with a clue, and my mother is really overprotective and loves cooking gluten-free for all of us.) I don’t have to talk about it.
However, I kept not saying anything when I went out to dinner with friends–and kept getting subtly glutened for years. It’s o.k. to ask. It’s o.k. not to stay sick.
It’s ok indeed!!
I actually had the opportunity to educate someone who was genuinly interested. I mentioned GF, and this woman (who works with my husband) said, “I’ve n
Been hearing so much about that. I’m low-carb. Is it like that?” And fortunately I didn’t crack wisw, but explained it all to her. She said, “I had no idea.”
Then we were at my BIL’s house, and his wife is GF because of Wheat Belly. I am very glad it makes her feel better, but she doesn’t get all of it. So we were cutting GF pizza and regular pizza with the same knife, which I hadn’t realized. But my WONDERFUL GF-educated son jumped in before I cut anything and asked for a clean knife for me.
Then we went to our pastor’s house for dinner (our wonderful pastor who has made communion so easy for me), and I had taked to his wife ahead of time. She had made sure to buy dip that was GF, and had put some in a separate bowl for me, with GF crackers. She also knew I was off dairy, so got Italian Ice for me for dessert. That was above and beyond in my mind. But, she comes from a family where there are vegans, begetarians, and nut allergies. They get it.
I am often hesitant to say anything, but know I have to because of my health. It sucks, especially since we are seen by so many as demanding nut-jobs. Media and those celebs have hurt us, and the ones like Jennifer are looked on as kooky. I don’t get it.
“It’s a crazy world.”
“Somebody oughta sell tickets.”
“I’d buy one.”
– Raising Arizona
Maybe it is somewhat our own fault because we are so quick to try to correct the misconceptions. Finding food that is tasty and safe for us to eat consumes us, so we do tend to take the jokes kind of personally. But at the end of the day we have to realize that all the jokes are aimed at the fad and mostly come down to a lack of education about what celiac disease is. When the nurse at my GI’s office called me back in July to tell me my blood test results showed I had celiac sprue, my immediate response was “well, what the hell is that?” I spent the next few days glued to the internet in an effort to try to understand what was going on inside my body. My doctor certainly didn’t explain it to me. And if our doctors won’t focus on the serious nature of this disease, how can we expect the rest of the general population to? As the medical community starts to give more credibility to celiac and NCGS – and gluten free is replaced by the next big fad diet to come along – maybe, just maybe, things will get better and all the jokes will stop. We can hope anyway. 😉
I’ve been tempted many times to comment on your blog, but I’ve kept quiet because I didn’t want to be bashed. But here goes . . . so bash away when I’m through!
I do not have celiac disease, but I do have tremendous gluten intolerance. It causes agonizing arthritic pain in my hips. Once I went gluten-free, almost all the pain just left–just like that in two days! No more limping, no more leaning on carts in stores just to be able to walk. And now I can get in and out of my car on one leg. Six-to-eight months into being gluten-free, I began to notice my digestion and elimination changing. What I thought was due to a botched c-section years ago was due to gluten ingestion. Now over a year later, I feel so much better–mentally, physically, and emotionally. I think I have finally “healed my gut.” Someday I may try gluten again in a fermented form, but I’m not in any hurry at all. I’m too happy with how I feel now.
Having said all of that, I get bashed by celiacs all the time. It has gotten so bad that I really don’t even talk to them about it anymore, and I’M the one who hides from THEM. I can talk to non-celiacs about it. Yes, some of them don’t even know what gluten is, and others look very skeptical. I don’t really care what they think, although most of them are pretty good about it, and I’ve even been able to help a couple of gluten eaters go gluten-free–with a dramatic improvement in their health and “little” symptoms. One woman I know has lessened her rheumatoid arthritic pain by about 75%. That’s impressive and I am so glad I could help her!
It’s the celiac crowd that has been very rude and mean to me. “It’s not a game, you know.” “If you really knew what this was like, you wouldn’t be playing at it.” “If I was a non-celiac, I’d be eating gluten, so please, I don’t even want to hear it.” “It’s people like you that ruin it for people like me.” “I have a serious illness, not a fad.” “You’re the reason celiacs are getting glutened–because of your stupid game.” “I can’t trust any gluten-free products or go out to eat because people like you make it seem like gluten contamination is okay.” “Don’t even talk to me!” And on and on and on.
I went off gluten to see if it could help me because I was at my wits’ end and I don’t have any health insurance. Lo and behold, it has worked miracles in my life. I even have a small gluten-free blog and and a gluten-free page on facebook–and no, I won’t tell you them because I don’t want to be bashed! I didn’t go off gluten to lose weight or because it was cool or because everyone else was doing it. It was a last-ditch effort that WORKED. I’m sorry I don’t have celiac. (Actually, I’m not sorry but sometimes I feel like I have to say that to celiacs. And I don’t really know if I have it or not because I’ve never been tested, but I don’t care anyway.)
Yes, there are some people who will always treat a gluten-free lifestyle like a fad or something cool. Just ignore them. They’ll be onto the next “thing” soon enough anyhow. When they tell me it hasn’t helped at all, I tell them to let me know when they’re serious about going off of it completely because they’re still oozing gluten. That usually shuts them up, and if it doesn’t, I can always walk away.
You should never feel like you can’t discuss your health or can’t make your eating choices known. Just be prepared for some people to not give a crap. It’s just human nature–if it’s not directly affecting some people, they could care less. Take your health into your own hands and don’t go anywhere or eat anything that you feel may jeopardize your health. Don’t expect people to understand because the vast majority won’t. And who cares what they think anyway? I certainly don’t.
Last but not least, try not to “identify” with your disease. You are not a “celiac.” You are person who happens to have celiac disease. There’s a HUGE difference there.
Melanie, I am so sorry you have gotten this kind of nastiness from the celiac community. I am SURE in one or more of my early rants I said something that offended you and people in your shoes. For that, I sincerely apologize. Going through the emotional rollercoaster of my healing year definitely brought out the pissed off side of me, and I took aim at “fad dieters” but also managed to catch some truly gluten intolerant folks in my crosshairs. I know better now, and I hope others learn too. I’m glad you are feeling so much better off gluten. And I hope the celiac community can come around you in the future instead of alienating you.
Well, thank you very much Alysa, I came back to the page ready to be yelled at, lol, and instead you were very nice! There are some non-celiacs out there who really DO “get it,” and I’m one of them. I am extremely strict with being gluten-free, and it has paid off in so many ways for me. Thank you again. 🙂
I assure you, I am no “celiac elitist” either! 🙂
When I hear anyone speak disrespectfully about NCGS, I get all hot and crazy.
If someone is healthier off gluten, then, it’s a gluten intolerance.
Celiac is just the extreme end of the spectrum.
Regarding your other statement, I’d like to say that celiac does not define me, confine me or own me, but saying “I’m a celiac” is no different than saying someone “I’m a diabetic”. It’s just a condition I live with, it’s not me. It has indeed altered my life, and it nearly took it, but it changed it for the better in ways I could never have fathomed.
And I am certainly not ashamed or embarrassed by it either. I’ll talk about it with anyone who wants to know what it is. LOL If someone asks me about it (and buys me a drink) and I could go on and on….
Hope you feel at home here! 🙂 🙂
Thank you, IrishHeart. Wish I could buy you a drink and hear your story, lol! You certainly have a very healthy way of viewing the whole thing. 🙂
Melanie, I’m appalled by the extreme rudeness of those people. I was diagnosed Nov. 2010 with Celiac disease and my sister decided to encourage me in my new healthy life by walking the walk with me. (She was diagnosed with diverticulitis years earlier and was having many episodes that required meds. After going gluten free she has not suffered those extremes any more.) This journey has taught me that I’d rather educate others than to get into a pissing match about who’s sicker! This disease is not in competition with any other! It’s just THE one that requires a prescription of gluten free food to be healed. I can’t apologize for them, but I can learn from your post how to be even more sensitive to those who “know their body” better than I do and have found healing by following the same course of action that I must take.
The only thing I wonder is how many people self-diagnose. I’m not looking to bash you Melanie. I actually try to be understanding. And you didn’t have much of a choice BUT to self diagnose. The problem with going gluten free without getting that biopsy done is that you may not know if you have celiac or an intolerance.
Anyway, I wish you continued good health.
The thing is, Ken, it’s not a problem at all. I don’t really care if I am a celiac or not. I’m a very practical person–I care about what works for me. I know that I eliminated one thing–ONE THING–and that was gluten, and it changed my whole life for the better. Like I said above, I may try it again someday and see what happens. Yes, I know it can cause “hidden damage” that I may not even be aware of. But here’s what I DO know: I know exactly how I felt before I quit it, and I know exactly how I feel now. I will not deceive myself.
And here’s one thing you might want to consider: Because I was never diagnosed, I never looked at myself as having a disease. I never thought, “Wow. I have a disease.” I never thought of myself as being sick or ill. What I did do was think of something (gluten) that was OUTSIDE OF ME as being sick. It was the gluten that had something wrong with it, not me. At least that’s kind of how I looked at it. So I never felt bad about it. I never felt cheated and I never felt “different.” Actually, I felt pretty darn lucky to have discovered it.
Add to it all that I am a good cook and have been able to duplicate every gluten food exactly, except for bread of course, lol. Even so, I make an awesome gluten-free pizza! So really, life is pretty good. 🙂
Melanie, I totally agree with you. In many ways, I don’t think our bodies are the problem. It’s what we’re putting in them! Our food supply is hybridized and modified in so many ways that I can’t help but believe that changing our diets would help to cure a multitude of health ailments. To give up foods you love is a scary prospect for many people – especially if it’s not definitive that food is causing the problem. And like you said – you have to do what works for you. I draw no line between celiac and gluten intolerance. Everyone reacts differently to gluten and has different degrees of severity to their reaction. We all need support and understanding on this because there is precious little out there. And turning on each other is certainly not the answer.
Thank you, Musicmidget. You “get it.” 🙂
I have no problem with people with gluten intolerance. Its when people think gluten intolerance and celiacs disease is the same thing. I have celiacs and it drives me crazy when people think i’ll just have short term effects from gluten like, for example, a stomach ache or joint pain. The difference is HUGE! Ones an auto immune disease where one crumb a day can lead to cancer, infertility, increase risk of other auto immune diseases and a weakened immune system. The other just makes you feel better. Which is of course important but its not the same. If cutting gluten makes you feel better great but don’t try and make it as serious as Celiacs because it’s not even close. (I’m not talking to you Melanie specifically I’m just commenting about the experiences i’ve had with celiacs).
First time poster. And I have problems with people who think gluten intolerance is not a big problem–that it only makes you feel bad and doesn’t have serious residual effects. I may feel better without gluten, but that doesn’t mean that my peripheral neuropathy is no longer a problem (burning feet at night) or that my severe osteoporosis is no longer a problem even after being gluten free for three years. Gluten intolerance, as well as celiac, have long term effects.
By the way, thanks for the blog, Dude. It’s a big help even if it makes me a bit upset occasionally.
Just occasionally? 😉
I agree about the long-term effects of gluten intolerance. My rheumatologist says I may have celiac, but I haven’t been diagnosed because if I eat even a little gluten the arthritis is so debilitating that I can’t walk. For years, I was eating gluten free but working at a bakery, since the doctors I had at the time told me that I probably only had gluten intolerance and not to worry about being around flour as long as I didn’t eat anything from the bakery. I ended up with flus and colds every three weeks, joint pain that was severe (but not so bad that I couldn’t walk), tonsilitis from inhaling flour, inability to digest fat, low vitamin D levels, anemia, and brain fog. Finally the joint pain escalated until I couldn’t walk, and I quit the job. It’s been five months since I quit that job, and (TMI!) I had my first normal BM yesterday. (I never eat out, have separate utensils/counters/cupboards at home; I eat a very strict gf diet.) My anemia has resolved, but the vitamin levels are still not good.
If the majority of my doctors are right and I “just” have gluten intolerance, the long-term effects of casual exposure (touching and inhaling flour but not ingesting it) leave me with serious nutritional deficits, neurological issues, and digestive issues that take months to resolve.
“serious nutritional deficits, neurological issues, and digestive issues that take months to resolve” and ” inability to digest fat, low vitamin D levels, and anemia” indicate something more than NCGS going on in you, IMHO
The major difference between NCGS and full-blown celiac disease is the blunted villi and malabsorption that results from undiagnosed and untreated CD.
So, if you have anemia (and you are not a woman who loses blood regularly nor do you have a GI bleed somewhere) then you’ve got likely got malabsorption going on. Did anyone tell you WHY you have anemia?
There are many symptoms of NCGS that are the same as celiac and make life difficult and painful, but if there is no indication of malabsorption or blunted villi, it’s not classified as celiac. (that’s not just me saying this, it’s how it is explained by leading researchers like Fasano and Murray)
Maybe your celiac panel was negative, but I am not so sure this excludes celiac in your case. Just IMHO.
In any case, so glad you are feeling better! 🙂
And when someone saysomething like this to me:
“Oh I couldn’t live if I couldn’t eat pizza/donuts/etc.”
“Well, I couldn’t live if I did.”
“serious nutritional deficits, neurological issues, and digestive issues”
You’re saying this probably isn’t due to NCGS….respectfully I must disagree. These are just a few of the symptoms I had before going gluten free. I had so much trouble with nutritional deficits my hair was thin and broke at the shoulder, my fingernails and toenails were paper-thin, my skin was so dry it cracked around my knuckles. I could go on and on. All of this changed when I went gluten free. After five years, my hair had tripled in length and thickness. My nails are thick and strong. My skin is normal. I don’t wake up nauseous every single day. There are dozens of ways the NCGS affects folks. I have about 50 things that affect me in addition to the items above.
I am saying anemia and nutritional deficiencies are more likely caused by malabsorption—- which is from celiac, yes.
NCGS does not usually produce malabsorption as there is no intestinal villous damage.
I am not saying any of you did not experience any of these symptoms!
I am saying that you probably should have been diagnosed as a celiac
if you have anemia or malabsorption leading to nutritional deficiencies such as the ones you describe..
There’s research indicating some people labeled “gluten-sensitive” may in fact have early-stage celiac disease.
“In gluten sensitivity, the innate immune system — an older part of the immune system and the body’s first line of defense against invaders — responds to gluten ingestion by fighting the gluten directly. That creates inflammation both inside and outside the digestive system, according to Dr. Alessio Fasano.
Meanwhile, celiac disease involves both the innate immune system and the adaptive immune system, he says. The adaptive immune system is a more advanced, sophisticated part of the immune system, and miscommunications between adaptive immune system cells lead those cells to fight your body’s own tissues, creating the villous atrophy seen in celiac disease.
People with gluten sensitivity do not get villous atrophy, even though they can still experience near-identical symptoms to celiac, including diarrhea, bloating, abdominal pain, joint pain, depression, brain fog and migraines, according to Dr. Fasano.
However, only those people with the adaptive immune system response unique to celiac disease are at risk for developing intestinal lymphoma and other conditions associated with celiac, such as osteoporosis, Dr. Fasano says.”
Haha, love that comeback!
I appreciate your thoughts, and it’s interesting to know that some research is indicating that early stage celiac may not present with the full blown blood tests + completely flattened villi. It makes sense that obviously the process would happen over time. And it makes me feel a bit better about telling people I have celiac when explaining how careful I have to be about cross-contamination.
As for anemia, I was told that because I’m a menstruating woman who is relatively small that I was anemic just because. But now I’m not, which is pretty great.
An ER doc tried to explain away my Dad’s tanked hematocrits (and my own anemia that we had also discussed when I questioned why my dad was ashen and passing out–again! (he required frequent blood transfusions for years. )
He said just “because” you can lose blood sometimes, I snapped back with “well, since I had a hysterectomy years ago and my Dad is a MAN, I doubt it’s because we have our periods!”
That quieted the buzzing in the Emergency Room. lol
I am glad you are doing so much better! That is all that really matters…. Good health! 🙂
For me, Liz Johnson, cutting out the gluten has not just made me “feel better,” it has given me back my life–literally. I was practically a cripple before I quit gluten. Yes, I know that word is politically incorrect, but I am not young and when I was growing up, that word just meant someone who couldn’t walk or move correctly because of a disability. That’s what I was: a cripple. And now I’m not. So even though I might not be celiac and be as susceptible to cancer or other autoimmune diseases, it’s still very serious to me.
And speaking of cancer, I worked in the cancer research field for many years, focusing on experimental treatment on the terminally ill. These were people who had tried everything else and it had already failed. Let me tell you something about the poor people I had to deal with every day. If someone had told them that if they strictly avoided a particular food they could control their disease and live a reasonably healthy life, they would have fallen on their hands and knees and thanked every god out there. You could tell them it would be hard to avoid the food because it’s hidden in many things, and they would cry tears of joy. You could tell them that other people might not understand why they won’t eat a particular food, and they would laugh with relief and bliss. Then they would literally kiss your feet and worship the ground you walk on forever. As it stands, they had no such luck and almost every single one I dealt with died.
I’m not saying this to make light of celiac disease. I’m not saying, “Oh, suck it up and deal with it!” Celiac disease is real and it is difficult and painful for all who have it. But please, have a little perspective here and realize just how lucky you are. Lucky to have celiac? you might say. Compared to some, yes. Avoid gluten and most celiacs are on their way to better health and happiness.
Doesn’t it make you want to sing with joy?? It sure makes me happy!! I’m serious!! I’ve got my life back. I’ve got movement back. And all for what? Avoiding a stupid doughnut? Leaving some of my favorite restaurants? Geez, twist my arm!!
I was with you all along…..until you said this:
” But please, have a little perspective here and realize just how lucky you are. Lucky to have celiac? you might say. Compared to some, yes. Avoid gluten and most celiacs are on their way to better health and happiness.”
Well of course, there are always people who are in more dire straights than I am at this given moment, but this does not negate what happened to me–or so many others I know– for YEARS before being was diagnosed. I have had MANY complications from celiac.
I have symptoms that may never resolve. But I do not whine about it.
And this notion of just “avoid gluten and you’re all set” just does not apply to “most celiacs” who went undiagnosed for decades.
At least, that was not my experience with celiac at all..And not the experience of many celiacs I know.
I am thrilled your pain went away in a few days.
But I’ve been in PT for 3 years.
I recognize the havoc gluten wreaks on the body, and I am respectful of your need to be GF and how it has helped you recover your health. but IMHO, I feel as if you are scolding me and admonishing me to be grateful for a potentially fatal AI disease? That’s not going to happen..
I am not grateful at all. I am not grateful for it taking my Dad or for the years I lost, the babies I lost and the anguish it caused my husband and my family as I dwindled down …But I do not think my disease is any better or worse than anyone else’s lot in life.
Suffering can’t and shouldn’t be compared .
I guess I am not really sure why you think it’s okay to say things like that to people who have suffered greatly from this disease —
–while asking for respect for yourself–which was afforded you immediately from the regular people who post here.
Best wishes to you!
Hmmm.. Part of me agrees with some of the things you mentioned. Everyone can always have it worse but that doesn’t mean what you’re going though isn’t awful. I unfortunately have severe food allergies to all nuts and soy along with Celiacs which have gotten worse as my immune system gets better because i’ve gone off of gluten. In the past 5 months i’ve gone into anaphylactic shock 6 times and died once. So why don’t you put things in perspective and realize you have no idea what i’ve been though since my diagnosis last year. Now I hate stupid internet arguments so this is that last thing i’ll say.
I’m a first time poster here. I have celiac and a child with cancer. No gluten won’t give or cure people of cancer but people with celiac do have in increased risk of cancer because they have an autoimmune disease that is treated and not cured by eating gluten free. Those who are in oncology know the very important distinction. While gluten intolerance is bad it is an inflammation and seoerate and distinct from a self attack (auto-inflammatory) disease. Celiac patients have higher risk of other autoimmune disease and heart attack, even if they are gluten free. I’m not putting down those with ncgs, some of my own children have it, but it is not the sandbox as celiac and it’s totally ok for us all to know the difference.
Celiac disease and non-celiac gluten intolerance are separate. One is no worse or more severe than the other. That is a huge misconception.
Sorry to say this…. because this debate goes on and on and on..and I do not mean to argue,, but there is one real difference that is medically indisputable.
You will not die from gluten sensitivity.
You do not have villous atrophy and malabsorption from that horrible and life-altering condition.
You will suffer, yes…and you may be debilitated and have dozens of symptoms….. but you will not die from it.
However, if you do not TREAT Celiac disease?
You will most probably die…. from severe malabsorption.
That’s just the truth. It’s not a contest, it’s just the medical facts.
Now can we stop the “mine is worse than yours” thing?
It’s all pretty sucky.
Melanie – yes! Me, too. Honestly, I will probably never get tested because I am unwillingly to go back on that much gluten. The rashes, the joint pain, the confusion, the general horrible feeling and pissed-offness. But, yes, every time I mention it on here or elsewhere it’s me that ‘doesn’t understand’. Oh, I understand. Just because there is a medical diagnosis doesn’t make someone’s struggle greater. When I am asked at a restaurant if I have celiac after asking about contamination, am I supposed to lie? Because all of a sudden it seems like the celiacs that want a separation between no contamination for them and ‘hey, it’s just a few crumbs’ for others. When I ask or gluten free, I want gluten free just because I asked for it, not because you are worried about what will happen to me.
Stick with it, Melissa. Doesn’t it just feel great to simply feel great again? And compared to most things I’ve been through in my life, it’s pretty darn easy. 🙂
I personally draw no line between Celiac and gluten intolerance. What pisses me off is the people who are part time gluten free because they are the ones that that make it difficult for those of us that need to be gluten free ALL of the time – whether because of celiac or intolerance.
Although I did read somewhere that people are more likely to adhere strictly to the diet if they have an official diagnosis. Also, given that autoimmune diseases often run together, it can be helpful to know for sure that you have one, so you can be on the lookout for others.
But to further complicate things, and the Americans can correct me if I am wrong, I have heard that it can be difficult to get health insurance if you are diagnosed celiac so. It might be better to self diagnose. Thankfully we don’t have that problem in Canada (though some life insurance companies reject for celiac).
All of which to say that this is definitely a complicated issue and affects everyone very differently so there is no easy answer!
I usually just ignore the part-timers, Else. It’s a fad. It’ll pass. It doesn’t change one bit how I live my life. 🙂
No, but they are responsible in part for the “a bit of gluten won’t hurt you” attitude, and the difficulties we often face getting restaurants to understand the need to eliminate cross contamination. So it doesn’t change how I live my life but does affect my life
Sorry to hear you are so reticent to comment. We have a wonderful community who, for the most part, does not separate celiacs from those with NCGS. There are indeed some celiac snobs out there. You are more than welcome here.
Thank you, Gluten Dude. I’ve done my best to respond to everyone who has responded to me, since they took the time out to listen to me. You have a great page here!
I feel I have to add something. I totally get it! Being GF has changed my life along with my immediate family’s. What I do is try to both educate as well as to help those who struggle with the cooking part. Whatever you are doing is helping others. Good for you for helping yourself. Glad to hear you are on the mend and have taken your health into your own hands.
Thank you, Amy. I’m glad to hear your health has improved to. And if you think about it, it’s really quite simple. I’m very happy being gluten-free, and I do my best to help others struggling with it as well! 🙂
You’ll definitely find no bashing here. I know “lucky” isn’t the word I should use to define having celiac disease but I am grateful for the diagnosis. I’m grateful because I know it would be harder to live with NCGS because of the skepticism. It won’t be long before the science will catch up and there will be hard, indisputable, evidence that NCGS is as debilitating as celiac.
When I saw the video on Facebook not long ago, with all of this being so fresh, it really made my heart hurt. The military doctors have been a painful joke so far. Much like this clip from Jimmy Kimmel. But, I am glad I found this blog.
What I want to do is to find/make a nice little, interesting celiac fact sheet type thing with info about celiac. Then, when some person is ignorant or doesn’t know about the disease, “hey, here’s a paper that explains what it is.” I mean it would have to be really attractive looking and pretty, so people just aren’t throwing it away because its 5 paragraphs of just plain text.
This could be a pretty good way to start educating people about the disease. So maybe we can make the “ugh gluten people” stop. Then maybe all these misconception about the disease can also go away. Maybe they will stop putting false info everywhere and having people believe it and take the false info as fact.
I think all the misconceptions need to be cleared up and education may help people to understand.
My husband has started telling people that I was gluten-free “before it was cool.” After 12 years of it, I’m just used to it. I don’t whine and fuss, I just don’t eat if there is nothing safe for me. For some reason, to see someone quietly not eating gets a lot of attention all by itself, and then I take the opportunity to educate others of they seem receptive to it.
Keep educating people– that is what we do. We should not be a source of entertainment for late night TV.
I tell people who don’t understand how serious celiac is to go directly to glutendude.com.
I have to tell you, that as I was reading your comment this afternoon, for a brief second there, I thought your sentence was going to end with
“I tell people to go directly to…. hell.”
and I burst out laughing thinking “that’s a pretty good comeback too”.
Yes, it certainly is a knee-jerk reaction to get upset. And you’re right, maybe we’re kicking ourselves in the behind. But education certainly is the key. A vision of the “gluten-free whys” is what needs to be seen. Visuals. Not the visuals of someone from Hollywood, but these kids (and adults) http://www.dsimpsonbooks.com/1/post/2013/05/gluten-free-before-and-after-pictures.html
and so many more like them (like us.)
I am currently writing a book (not gluten or celiac related) but it includes the tragedy of the lack of education about special diets in hospitals. My son was given food that contained gluten during a moment I was not there to stop it. If he’d been one to vomit or get the big “D” – it would have been horrific (broken jaw and other major injuries and pain from an auto accident.) It is bad enough to get the reaction we get from comedians and the general public sometimes, but when gluten free is not respected and understood in hospitals and other medical facilities – this is a tragedy.
Yes – we need to do something. And I am right there with you. But it is something that is going to take a team – arm-in-arm. It is one thing when we can (and do) handle out own diet (with or without the support of others) – but when we are confined to a situation where we have to depend on someone else – now that is incredibly frightening.
Continuing to talk about what gluten-free is and how serious it is for those with celiac disease/ncgs is all we can do. I try to educate those who want to be educated. I think people know but they still don’t know.However, now more than ever, it seems to be more common to hear someone say “I have a _____ with celiac disease who was just diagnosed.”
It is too bad that some people look at it as an annoying habit rather than something serious. And the battle wages on…
Great post. Bleeping annoying. In my opinion it seems to be the year of the celiac. Tho’ not in a good way, apparently. Next year it will be something else and the media will focus its derisive cluelessness somewhere else. Me, I am just going to be myself. Strong. Vocal. I work in a very large office and I educate people around me about the seriousness/reality of this disease. And you know what, people now go out of the way to accommodate me and handful of others who are celiac/NCGI.
Happy Holidays y’all
2014 is our year.
“And there’s nothing wrong with me / This is how I’m supposed to be / In a land of make-believe / That don’t believe in me”
Happy Holidays JG. So glad you’re a part of this community.
Before I was diagnosed, one of my daughters told me that she was gluten intolerant and I thought she was full of s–t. I had heard about celebrities touting the gluten free diet as a way to loose weight but I never believed it of course because I knew gluten free was for kids with Celiac disease. The operative word here “kids” were the only ones who got it and it was rare. I was on the low carb diet Atkins and lost a lot of weight–about 30 lbs. My family thought I was too skinny (137 lbs.). So I relented and started to add whole grains to my diet and of course bread and the occasional Hostess Twinkie. My guts would be in knots and still I thought nothing of it. When I went to the doctor for another problem and he ordered tests. I was anemic and my ferritin was dangerously low. He sent me to a gastro doc. Anemia for a post-menopausal woman is a big red flag. After going to the specialist, and having an endoscopy and colonoscopy, he called me and said my biopsy was flat which strongly suggested Celiac disease. I was dumbstruck—me how the hell did that happen???!!! I basically had to re-think my daughter’s gluten intolerance. I never said to my daughter’s face that I thought she was full of s–t because that would damage my relationship with her. I hate having this, but let the naysayers bash us. We are a strong community. We know how we must live. We have celebrities like Jennifer Esposito who have the right bead about our disease and support us strongly. Let the assholes out there think we are crazy and weird. They may have Celiac disease and not know it. If they get a diagnosis, well then they will HAVE to change their tune. Nuff said. I walk forward and enjoy my life!
Please don’t sit quietly . . . for my daughter’s sake and the millions of celiac sufferers out there. You’re a hero! Thank you.
Thanks Susan…will do.
I am attempting to understand why someone with celiac thinks being gluten intolerant isn’t as “dangerous” as celiac. For many of us with non-celiac-gluten-sensitivity, gluten is debilitating. We all need to stick together, not divide by labels. We all just want to be healthy. Going gluten free (over ten years ago) saved my life. They only proved in the last three years that gluten sensitivity and celiac are two different “afflictions”. There is no reason for an attitude that says, “My situation is worse/more important than yours”.
Exactly Laura. I am of the thought that we are all in this together.
I have always thought this way, too. I am a very vocal advocate of the gluten sensitivity spectrum. All-inclusive, IMHO
But just now, I am pretty sure I felt as if someone was telling me that celiac is “not that bad” and I should be grateful it’s not something worse.
This person does not know what I’ve been through…so
how is that kind of narrow thinking any different?.
That’s a troubling attitude, and it’s making me rethink what I often tell people to end the conversation that goes “Oh I couldn’t live if I couldn’t eat pizza/donuts/etc.” I have been telling them that I’m at least thankful now to have steps I can take to be healthier, unlike if I’d never discovered what was causing my illness. I really hate the pitying and selfish agonizing that people indulge in upon hearing that I don’t go out to eat, etc. But perhaps that is misleading, and makes it seem too much like a quick fix (when I know that it hasn’t actually been that way for me).
I explain that if someone told them they had an incurable disease that made them really ill and would eventually kill them, and the only cure was to eat the right foods instead of drugs, wouldn’t that be a blessing? Yes, I am prevented from eating at most restaurants (Portland, Oregon now has several 100& GF restaurants). Yes, at our family reunions I have to cook the bulk of the meals. Yes, I travel with my own pans/utensils/etc. BUT I am healthy for the first time in my life.
I think we are all doing the best we can as people living with celiac disease and non celiac gluten sensitivity (and/or having loved ones with these conditions). Understanding and awareness will come, with time. I myself have had a very difficult time remaining patient at times, especially over this past year as I’ve become more involved in the social media sphere (despite the name of my web page!)
I am confident that there will come a time that we are no longer ridiculed on a regular basis by the media, comedians, celebrities. I am thankful to be a part of this community!
Merry GF Christmas to all of you (if you celebrate) and Happy New Year! Let’s hope for a better 2014 for gluten awareness!
Well said…. and amen to all that, dear Jess!
and thank you for all you share with us.
Big hugs, IH xx
Every New Year is a Healing Year! 😉
Thank you dear Irish Heart! You are spot on in saying that every year is a healing year. It’s been great getting to know you through here over the last few months.
People mock what they don’t understand. Always have, always will. And right now “gluten” is a punch line. Whether we like it or not, it’s going to be laughed at and joked about. Hell, a lot of my friends still make fun of my diet because they don’t understand it. I explain to them all of the positive I’ve gotten from it and the anguish my declining health caused but they still don’t get it. And most people are too insecure to admit “You know, I don’t understand, can you please explain why you’re doing that.” They just say they get it, and then laugh behind your back. Or they totally support you when you’re one-on-one, but then readily laugh in your face, when everyone else is laughing at you. Dude, there’s nothing we can do, and the more we try to fight the gluten punch line, the more we perpetuate it. Ignore the media. Ignore ignorance. Protect your own health and that includes your mental health. Stop worrying about shit people say and educate those around you as best you can. I guaran-damn-tee you that Kimmel, Fallon, and all your knucklehead friends and family know others who are getting sick. And it scares the shit out of them. So they joke about it, because that’s all they can do. We are one step ahead of the game because we’ve connected the dots between a whole foods diet and good health. All the haters won’t ever believe gluten makes people sick, until it’s their turn to get sick. That’s just how it is, man.
Buy that man a New Planet! Well said.
” Stop worrying about shit people say and educate those around you as best you can.’
I salute your honesty! Cheers!
This is a perfect example of America the beautiful…
This place has limited intelligent people and as people like Jimmy and Rachel Rae get rich on others misfortunes it’s funny to see them make fools of themselves, time and time again.
It still hurts though as these modern day TV bullies with power to help others choose to make fun of trending scientific research since they’re always late to the trending party anyway until someone tells them to cover a topic occurring in the world despite it’s level of importance.
Instead of being punished these jokers reap in the benefits of ratings, advertising, etc. Not in my universe though, they have no role and get no respect. What a wonderful, fun and save world we live in.
Just found your page, and this article. I’ve read all the comments, and am surprised there was no one who made the autism connection with gluten intolerance. I felt like Jimmy might as well of said “oh those artistic people don’t get me started” many many if not most artistic people have a gluten intolerance so often the connection is not being made. My son was diagnosed with autism 20 years ago. I worked very hard to educate other mothers about this. too many laughed at me and said no that’s only celiac people. Going to gluten free for my son absolutely changed his world for the better. My mistake was not realizing how badly I needed to be gluten free myself! I feel like I wasted many years by not understanding the depths that this intolerance goes into with different symptoms. We have to educate people. We have to take the brunt of the jokes. We have to get tougher skin. We have to do it for the children whose lives need to be saved, their health improved, for sanity to be restored, and for quality of life. Awareness has to be made. Those of us in the autism community know this better than most. We can’t go to restaurant because the diners next to us don’t want us there. Do you think its just the celebrities and weight loss hopes that has created this “fad”? I hope you please consider the fact the children being diagnosed with autism at a rate of 1 child in every 88 children to date, may have a parent who learns that a gluten free diet may help them. Could this also be the cause of the “fad” explaining the accelerated speed at which gluten free is on the lips of so many? Those words “gluten free fad” really ruffle my feathers, but I understand there’s a lot ignorance and fear out there. Awareness happens over time and through word-of-mouth education. Keep speaking up for your selves and those who will need to follow!
I just came across this interesting blog post (link below), from a blog I likewise just discovered and about which I really know little to nothing at this point, but I think he makes some interesting points about online activism that relate well to this post.
I’m not trying to accuse anybody here directly or indirectly of the sins this writer identifies, but I think it’s food for thought for all of us in this community as we approach “teaching moments” in our day-to-day lives.
Some quotes that stood out to me:
“… activists [often] let contempt seep into [their] message. It becomes about making others wrong instead of trying to help them be right.”
“… in our attempts to reduce ignorance we ought to approach others as fellow learners, rather than people worthy of blame.”
“The worst thing a person can do for their stance is to deliver it packaged with a moral judgment. This effectively eliminates the other person’s freedom to agree, and may even create a committed opponent to their cause.”
Why Most Internet Activists Don’t Change Any Minds:
Jimmy Kimmel was at it again last night:
He got a bunch of people one by one on video admitting they don’t know what gluten is, even though they eat GF. In the set-up he says at about 0:17:
“Some people can’t eat gluten for medical reasons, which, that I get. It annoys me but I get it.” Now, he could have said “it annoys me” in an I-hate-that-we-live-a-world-where-some-people-can’t-eat-gluten-without-getting-sick kind of way, but no, instead he comes off all even-people-who-CAN’T-eat-gluten-are-a-big-nuisance-for-me-PERSONALLY. So basically, half a second of lip service that gets buried in the rest of the gag, and back-handed lip service at that.
Big missed opportunity there, and then he launches into it. I was sincerely hopeful the last guy might actually have come off better than how it ended up, and thereby reiterate JK’s “medical reasons” point that was completely lost in all the clowning by this point.
But instead, all this little stunt does is send a dangerous message: if you’re celiac (or NCGS), the onus is on YOU to defend yourselves and YOUR eating habits.
Gawd, I can’t WAIT for Celiac Awareness Month to start so we can go at least a FEW weeks without any of this crap.
What’s that? Oh. Oh, man.
Well, “this crap” is going to continue for the life of the gluten free fad. In the meantime those of us who have celiac disease (like me) and those with NCGS, plus some more people who have found that a gluten free diet alleviates some problems they’ve suffered from, are going to have to live with it. You’ve pretty well identified problems with living with the those skeptical of or downright dismissive of “gluten free”. But the faddists are helping us get a wider variety of GF products and sources of them, and inducing more restaurants to offer GF options (although that’s a mixed blessing as has been discussed here quite a bit).
And the Q & A was funny, if insensitive. We may think Fallon is a jerk, but one thing which will help the fad to die down is to make fun of it. (I wish he’d be clearer about making fun of the faddists, but at least he does mention the medical problem.)
“Some people can’t eat gluten for medical reasons, which, that I get. It annoys me but I get it.” It annoys me too, but unfortunately I got it.