I know what you’re thinking…
“C’mon Dude, not another rant about how celiacs aren’t getting the respect they deserve!! You’re beating a dead horse here.”
And I couldn’t agree more. I’m sick of writing about this stuff.
But more importantly, I’m even more sick of the reasons why I need to write about it.
And as long as our wonderful entertainment industry keeps trivializing celiac disease, I’ll keep writing these posts and doing my part to raise awareness and call these [insert bad word] people out.
If you have not already, watch the above video. It’s all of five seconds. I apologize for the crappy quality, but I recorded from my phone just the one segment which blew me away and spared you the rest of the video. You’re welcome.
If you just don’t feel like watching the video (and I don’t blame you), here’s the transcript:
Annoying Host: You hear a lot about celiac disease these days. What is that exactly?
More Annoying Doctor: That’s a new hot disease these days.
Annoying Host: Yeah…it’s a trendy disease (with an eye roll).
Were they being tongue-in-cheek? Perhaps.
But here is my question.
Would they have called AIDS “trendy” in 1985?
Would they have called polio “trendy” in 1901?
Would anybody, anywhere EVER call cancer “trendy”?
Of course not.
So why can’t celiac disease get the same goddamned respect?
And for those of you who will jump at me for comparing celiac disease to those other very serious diseases, I get it. Celiac is treatable (not curable) with a strict diet while the other diseases are much more difficult to treat and have a higher fatality rate.
But why trivialize it when it is indeed a very serious autoimmune disease that is extremely difficult to live with? What’s the point?
And by the way, the doctor went on to say that celiac disease is “very easy to address. All you need to do is cut out the gluten and your symptoms resolve altogether.”
Really? That’s it?? Wow…I wish I knew it was that easy. Thank you so much doctor. I guess all of my suffering even though I’m gluten free is all in my head.
And the ONLY symptoms she mentioned were bloating, cramping and diarrhea. Like all we deal with is a tummy ache.
So to The Today Show…you get an EPIC FAIL for helping to perpetuate the myth that celiac is a trendy disease that is not to be taken seriously. May your ratings continue to fall as they have been.
And to everyone else who knows the truth about our disease, please share this post. Their twittername is @todayshow. Send them this link and tell them we deserve an apology, using whatever spicy language you would like.
Ugh. So disgusted. I’m sure that these 2 bimbos would be using the word “trendy” if they had Celiac Disease. Makes me absolutely sick. Anyway, I will spread the word about this as much as I can. It’s absolute bullshit and completely outrageous! All I can hope is that the “trendy” state will be what it is, a trend. and that that crap will leave and the disease itself will only be taken more seriously.
Thanks Rachel.
Just had another endoscopy and my first ever colonoscopy, my NEW GI isn’t convinced I have Coeliacs, this is apparently because everything looks normal, YEAH buddy its looking good because I’m a bloody nightmare when it come to my food. 38 years of it. He wants me to do a gluten challenge, he requested I do this after going on for 10 mins about the dangers of cancer in (caused because it’s so difficult to be gluten free) Coeliacs and that apparently when you have the symptoms its too late….I have however suffered from heart burn for years and this has caused Barretts esophagus and a couple of other things. We have a tough enough job to convince people it’s not just an allergy!!! Ahhhhhhhh thats my rant over with.
As for trendy………………….. KISS MY COELIAC ARSE YOU COMPLETE IDIOTS!
You go sisters (I know…I totally can’t pull that off)
Hey Coeliacsisters, I too did the endoscopy, colonoscopy, when the blood test was negative for the antibodies present in celiacs. (also was off gluten, self diagnosed b/c I could not take it anymore, it was my last resort). The biopsies from the endoscopy were negative, (he only took two). Colonoscopy ok. So….I asked for the genetic testing, this proved to the gastroenterologist that I had celiac. DQ2 and DQ8 were present, I also had a skin biopsy taken from a rough patch of skin that would not go away, and was positive for dermatitis herpetiformis. This did not look like the typical blistering yucky stuff you see on celiacs. diagnosed 8 weeks ago. My point is, go for the genetic testing, insurance might not cover it. It can be a couple hundred bucks and up. I personally think this should be the first process in testing, when one is having symptoms and other diseases presenting themselves, this would save us from going thru those other horrible procedures, with risk of perforation.
Rhetorical question for the day: How do we go about our business showing symptoms, complaining to drs, (me for 30 years, coeliacisters for 38 years), and not one dr. suggests celiac, or believes we have it and not even suspects a wheat allergy in my case. I am farmisht. (yiddish) makes me pupule. (hawaiian) and no I am not a Jewish Hawaiian. If I was, I probably would not have celiac disease!
As for “trendy” I’ll show you trendy, you out of that chair and me in it!
How could any reputable dr. describe a disease as “hot” like we are going to have an orgasm over the prospect of getting it? time for me to go to the beach and chill!
thanks gluten dude for your website and posts. this truly helps me.
HERE HERE!!! My GI over here just thinks that my GI over there don’t know what they are talking about, Seriously I was diagnosed at the age of 5, stuck to a GF diet and then at age 11 told I “WAS CURED” came off diet, had both children, had coeliac symptoms again and TAH DAH at the age of 24 my GP said “GET BACK ON A GF DIET”……I’ve had numerous endos and all my GI’s have said “YEP! You’re a Coeliac”, Insurance not a problem, I nearly had a heart attack when my husband told me how much the Endoscopy/colonoscopy cost. Not to mention the $550 for 10 mins with my new GI.
It’s certainly not easy being GF, but it’s totally worth it! Here’s to healthy living and may the press eventually stop with all their bollox 🙂
Julia and Coeliacsisters…all I can say is YOU GUYS ROCK!
Dude? Can I ask that people follow me on Facebook, I’m seriously going to just post recipes and no drivel! PLEAAAAASSSSSSEEEEEE!
https://www.facebook.com/pages/Celiac-Sisters/113967955376661
I’ve only got 11 followers 🙁
wow, celiac is “easy” & the ONLY symptoms are diarrhea, cramping, & bloating??? what about debilitating migraines or cancer of reproductive organs or osteopenia or premature menopause??? oh that’s right, those aren’t symptoms of celiac. they’re results of undiagnosed celiac! >:[
[nodding my head]
and mine!
and mine….
Oy, I can’t even begin, or else I’m going to start ranting too. Ugh. I think I’m more upset by the “it’s easy, all you have to do is eat gluten free” comment, as it’s uber trivializing. I wish they had to go through what I go through every day, planning every trip down to where I’m going to eat, reading every label, calling 1-800 numbers all the time to confirm or deny wheat in medications, etc. My gastroenterologist seriously tells me how difficult it is – so why is this Dr. on TV telling everyone that what I go through is easy? This, on top of the Domino’s thing, just makes me want to pull my hair out. – Celiac and the Beast
I’ve pulled my hair out so many times this week I now have pockets of bald spots.
Awesome, yet another one…It shocks me that people can keep saying such ignorant things. I’ll be humiliated if I was caught saying something as ridiculous as that on live tv.
I didn’t see this show however. What did they say after this clip? Did they go on to talk about celiac and it’s seriousness? I hope so.
Not really. She talked about how easy it is to address and there are so many gluten free foods available now. It was so friggin’ lame.
Everytime I see a GF product “YIPPEE” then you see that it may contain gluten because of cross contamination #FACEPALM!
man with it being may and celiac awareness month, the pub we have gotten is not at all helping our cause. between the NFCA and these complete f$3*ing idiot tv people just being complete hacks about what celiacs is all about i can’t help but hope they all get it. i thought w the NFCA announcement i had already exhausted my hate for the year but this has gotten me soo pissed again. i’m tweeting them respectfully as possible on the vid above. on the other hand the wolf blitzer interview was so very well done and respectful. if any of you havne’t seen it please check it out @ http://www.youtube.com/watch?feature=player_embedded&v=if1zGZa5bLU.
hope you dont mind the link there Gluten Dude.
and GD we love your blog. my wife has celiac and your blog is something we check on a daily basis. thanks to you and the other posters here for honest and valuable thought
As I’ve said in the past, I consider this “our” blog, not my blog. So you may post whatever you would like.
Appreciate the kind words.
And thanks for your passion and helping to spread the word.
And THIS is how it should be done…if any of the misinformed media or NFCA care about actually doing their jobs well:
Celiac Disease Panel with Wolf Blitzer
http://youtu.be/if1zGZa5bLU
Wolf Blitzer is clearly an ally. 🙂
Hey, all you supposed celiac disease advocacy groups (a hem, NFCA): We make donations to you and are your constituents. Can we get more of this, please, so we don’t have to defend how sick we are or prove that we’re not just being high maintenance? Can we educate the masses so there a fewer of us struggling with incorrect diagnoses or to find out just strict we have to be with our diets so we don’t have to suffer through a six-month learning curve?
I LOVED that. Just posted it on my blog. Shout out to all the strong leaders we have in the GF community and the great products we have too! Love the Red Apple Lipstick shout out and the Delight Gluten Free exec editor is awesome!
Celiac disease is very real and quite miserable. I know, I”ve been dealing with it for most of my life. I wasn’t diagnosed until I was 33 years old. I had a lot of damage due to that fact. All the undigested food sitting in my colon caused a lot of damage. I’m now missing about a third of it. That surgery was really painful. Last year, it was my gallbladder. Not as bad as the partial colectomy…but still it has worsened my digestion of fats yet again 🙁
Ok..now I’m going to risk pissing some of you off….
The majority of people who say they have celiac have diagnosed themselves or claimed the be diagnosed by enterolab or some other online test. Some of their drs. didn’t understand the testing themselves and declared a patient celiac based on only a positive igg alone and no small bowel biopsy.That takes a lot of credibility away from the celiac who really does have the disease. Yes, it is a disease and it is serious!
I’m sorry if I offend the self diagnosed…I don’t mean to…I just want people to take my illness as seriously as they do other chronic illnesses. It’s an issue for me….I’m working on it!
Funny thing about celiac…once a person has been gluten free for so long, you can’t prove or disprove a person even has the disease…unless they don’t carry the genes for it!
I honestly don’t understand non celiac gluten sensitivity. The famous celiac specialists flip flop on the issue. They say it exists, but doesn’t cause any long lasting damage. The self diagnosed say different….No wonder the press is confused…I’m confused about that one myself…We need some solid answers!
It would indeed help if the stars would stop misunderstanding just why a person needs to be G-free….I didn’t lose weight…I gained it!
I have a question for all of you. I was tested for celiac disease just over a month ago. The test was run as part of a panel of labs for an upcoming osteoporosis screen with an endocrinologist (I’m 40, fractured my leg in January). The celiac panel came back, they say, conclusively positive. My primary doc and a nutritionist I was sent to both said I really don’t need a endoscopy; my labs were confirmatory for celiac and that I needed to start a gluten free diet (which I have). I’m not sure I would say that I had “classic” symptoms but I have been anemic for years, have low vitamin D levels even with high dose treatment, have had skin issues, and the fatigue. When I hear everyone say you HAVE to have a biopsy it makes me so confused! What are your thoughts on this?
I’d leave this to the medical experts. The problem is they are so hard to find.
From what I know, you need both tests to confirm the diagnosis. At least, that’s why my GI did for me. He said the blood work alone was not enough, even though my numbers were so high.
Same here. My GI said the endo was the “gold standard”.
There are indeed a lot of unanswered questions Denise and the celiac community shares your frustration.
I couldn’t disagree more. The idea that only those who are diagnosed with the specific symptom of coeliac-type intestinal damage should count and those who have any of the other debilitating symptoms should be ignored or treated as frivolous malingerers makes zero sense medically.
I have been gluten-free for 10 years, thanks to the fact that when I accidentally consume gluten my symptoms come back. The idea that I shouldn’t be permitted to go gluten-free unless I am willing to eat enough gluten for 6 months to make me so sick I have possibly irreversible changes on spending literally THOUSANDS of dollars out of my own pocket for an invasive test that is often wrong makes no sense.
Yep, you pissed me off by telling me I’m not sick and have no right to be healthy.
This is in response to Danica – I was diagnosed via positive blood test about three years ago and never had an endoscopy. I have a family history of the disease (my dad and a couple of cousins on that side) and had HUGE improvements after transitioning to the GF diet. Namely, my iron levels normalized after being anemic my whole life.
A few months later, I saw a doctor who specializes in gastroenterology who tested my antibodies again, and they were back within normal levels. I asked about the endoscopy, and he said that it was clearly Celiac and that at that point, it would do more harm than good to start eating gluten again in order to do a biopsy.
I sure there are naysayers, maybe commenters above would call this “self-diagnosed,” but I have dealt with accidental glutenings enough to know that I have Celiac.
Gluten Dude, in response to your post, in the couple of years between when my dad was diagnosed and when I eventually was, I never thought “gee, I hope I have Celiac, too, it’s so trendy!”
I’ve tweeted these morons a number of times to get the word out. But does anyone know the actual names of these “doctors” that said this bs? I think we should bombard them with angry tweets and messages!
How can ANY disease be trendy? That is absolutely ridiculous! People have no idea what they are even talking about.
So I already love your blog and have a few questions about being diagnosed. Got the positive celiac results from my family doctor after the blood tests and have been eating gluten-free, but now what should I do to get the small bowel biopsy? Do I have to go back to eating gluten? I’m feeling so much better. Any thoughts?
When you say small bowel biopsy, you mean an endoscopy, right?
And yes, you have to be on gluten for the test to be accurate…fun. How long you have been off gluten?
Anyway…the choice is a personal one Suzanne. I’d want the full diagnosis but I know others feel differently.
This is the second epic fail from the Today Show who’s doctor, Nancy Snyderman said for people who think they have Celiac Disease to simply go on a gluten free diet BEFORE they are tested!!!!!!!!!!
These doctors may need to be fired.
I won’t be watching the Today show again…ever.
#FACEPALM!
Who mentioned the gluten free drink?
Is it 6pm yet?
I’m having a Titos and cucumber as we speak.
That’s what I like to hear…
I was going to be rude, but I won’t! 🙂
A what and a what?
Trendy disease I hate it .
I am so frustrated at the situation CD is not trendy . But my job it’s possible I can get famous or at least get a tv appearance , shame the CD complications have held me up back .
I’m very inspired to try my hardest with my career to beat all my health issues and get on tv and explain the situation with CD and how it is a serious auto immune disease .
Nothing is impossible lets get CD the respect and awareness it deserves .
I’m kinda drunk writing this I work as a Magician at a local bar , 1st job since january many customers bought me pints of cider 😀 lol .
YAY! JOB AND DRINKS BOUGHT FOR YOU!!! 🙂
Thanks 😀 It’s nice my audiences kept offering me drinks 😛 But i’m happy I did a good job even though I had pain while working , but the audience response was great and the bar said it was the there busiest thursday night ever 🙂
*Sigh*
Seriously?
Can you even imagine the backlash they would have gotten from calling diabetes or lupus or Crohn’s “trendy”? I mean, I know that now that Miley and that Kardashian creature are touting the GF lifestyle, we might as well all be on the cover of Glamour – maybe the problem is the diabetes people only have Wilford Brimley and Paula Deen?
I would take Wllford Brimley over Kim Kardashian any day of the week.
Now that would be a cover worth buying 🙂 Us not the latter.
I’m so tired of people that have no clue whatsoever saying the things that they do. I would gladly trade with her for one day so she can realize what it’s like to live this type of lifestyle but this is going to continue for a long time. All we can continue to do is bond together as we have to show others how stupid they sound when they say the things that they do. At lease we’re , “Hot” though! Another great post from you Dude!!
The more I watch the video, the more crazy I get. It was just a surreal 55 seconds.
What gives them the right to say it’s easy when they know nothing about following a gluten free diet . It’s something only a celiac can understand being forced to give up your favourite foods is not ” Easy ” . But the stupidest part is the hot and trendy BS . Also the symptoms go away they have never felt celiac pain and have not had to go through complications of CD .
The whole thing is insane and my anger has still not subsided a day later.
It is important to understand that most people are irrationally attached to their diets, which although they may be highly restricted (limited to mostly processed wheat and corn).
They live in a world where wishful thinking is as good as scientific research, where if they aren’t intolerant to gluten or allergic to peanuts, then nobody really is. They consider it a personal challenge or affront when someone changes their diet to eliminate the junk food that they eat constantly, even if that food was hurting them. They think we’re only doing it to annoy them.
“Live without pizza? I’d rather kill myself!”
we should contact these “doctors” and bombard them with messages. One of them is Dr. Keri Peterson @DrKeriPeterson on Twitter. The thing that really gets me mad is the way in which they say this crap. They are practically laughing about it, like it’s just so entertaining. Arrogant, rude and ruthless!
if you come accross the other people on the show, please update, i will definitely tweet the hell out of them
Below is the response from the NFCA to a somewhat nasty email i sent them. I am concerned about what these people are really doing…
On Fri, May 11, 2012 at 9:49 AM, Jennifer North wrote:
Hi, Susheel.
Thanks for sharing your feelings about NFCA’s relationship with Domino’s. We appreciate your concern.
Rather than respond to each of your points, I invite you to learn more about our motivations for working with Domino’s by visiting http://www.CeliacCentral.org/dominos.
My goal in directing you there is not to change your opinion, but to provide you with the facts.
I understand your struggles with the gluten-free diet..as someone with a daughter with celiac disease, I share those struggles on a daily basis.
Jennifer
jennifer north
vice president
national foundation for celiac awareness (nfca)
p.o. box 544
ambler, pa 19002
215-325-1306 ext. 108
856-397-1455 cell
Yes, I feel SUPER trendy when my entire left side goes numb, I start dropping things and bumping into things, my speech slurs, I’m doubled over with stomach cramps, a migraine comes crashing in, and I’m laying on the bathroom floor for three days vomiting for hours then dry heaving for many more, having the hershey squirts out the other end, and am unable to take care of my dogs, myself, or my work. I should pair it all with a new handbag and pair of pink stilettos!
Point very well spoken Katherine…thank you.
And why was Dr. Keri Peterson a subject matter expert about GI disorders when she does BOTOX for a living?
http://www.kerimd.com/services
And it just gets more and more insulting…
And apparently she’ll be an expert on anything if the price is right.
http://www.kerimd.com/appearances
Celiac disease gets a smarmy sound bite on The Today Show, but “metabolism boosters” gets its own segment on Dr. Oz!
What an incredible idiot.
Hi Gluten dude!
I feel a bit of a rant coming on….
It’s misinformed, arrogant “doctors” like this who kept me from being properly diagnosed for many years. I suspect it keeps millions from being diagnosed properly.
From late 2007-late 2010, I tried to find out why I was in so much debilitating pain and dropping weight so quickly. I lost a drastic 90 lbs. because I could not eat or keep anything in me. My entire GI tract BURNED from mouth to rectum and even water burned doing down. One doctor told me “congratulations on your weight loss”, another said I needed to “do volunteer work to get my mind off it all.” (I could not even dress myself or tie my shoes) Another encouraged me to work out at a gym. I tried but kept feeling faint on the treadmill and then, my legs and back went numb. I heard “it’s just menopause”, fibromyalgia, the catch-all ” IBS ” and GERD”…and my favorite,” it’s just stress” because my father had just died.
I was offered more drugs than you can imagine: pain meds, anti-depressants, anti-anxiety meds, sleep meds, antacids, thyroid meds I did not need —and even sent to a psychiatrist– to get me to shut up and leave the office. Drugs made my already ripped up gut worse and so I did not take them. I have no psychiatric problems, but I sure as hell thought I would lose my mind.
We spent $30K out- of -pocket on tests, physical therapy, alternative doctors–anything to to help me get well. NOTHING worked.
I lost major muscle mass and tone, my ability to comprehend, articulate and recall information. I had difficulty remembering how to cook, balance a checkbook and drive my car, and I suffered insomnia, sores, burning skin, and severe burning neuropathy, numbness, parasthesia and weakness. I banged into walls and tripped down stairs, becoming covered in bruises. I was propped on the toilet when I was passing everything and washed down with cold clothes to keep me conscious. My poor husband thought I was dying. I had horrid joint, bone and muscle pain, pelvic floor pain, and kidney and liver pain. I was unable to walk the length of my driveway without gasping for breath, acquiring anemia, losing my hair. I was unable to walk, stand, lie down or stand without agonizing pain. No doctor could tell me what was wrong. FOR 3 YEARS.
Our life came to a stand still as my husband watched helplessly while I went downhill. I forced myself to keep moving so my muscles would not atrophy as my buttocks and muscles wasted. I dragged myself around and researched endlessly to figure out what the hell was going on.
I was told “it could not be celiac” because my blood panel was negative and “no one in my family has it”. (well, someone has to be diagnosed first for that statement to be relevant and blood panels are negative often enough to keep people undiagnosed!) The GI doctor I saw for years did an endoscopy yes, but failed to biopsy me while down there, yet t I did not know this until a year later when I finally saw the report. (lesson? never trust the word of a “nurse practitioner”–ask for the report and read it yourself!)
They were all Wrong . Wrong. Wrong.
I figured it out myself and brought it back to my PC doc and the rest is history. So many things in my life are explained now: migraines, miscarriages, inability to have children, gall bladder disease, etc, etc.
The very celiac-savvy GI doctor who takes care of me now said he feels so bad for all I went through. He looked at pictures of me from that time and taking into account my own medical and family history, especially that of my father’s, my genes (HLA-DQ2) and the dozens of AI diseases in my family —and said “couldn’t anyone SEE it? You’re a walking Celiac”
I said “Doc, this disease tried to kill me and if I had not been so relentless, I would either be dead or in a mental health ward by now”.
I hope I can get my muscles and my life and “me” back, but the road to recovery has not been easy. I never say die. Now, to make sense of the nightmare we went through, I focus on helping others who are struggling for a proper diagnosis.
CURRENT RESEARCH and the well-respected Celiac experts (like Dr. Fasano) KNOW there is more to diagnosing it than the Celiac Panel and the “gold standard” biopsy.
Some celiacs(like me) blood test negative for various reasons. A stroll through PubMed articles will explain that for anyone who is interested. My doc will biopsy me next month in hopes I do not have refractory sprue from years of being undiagnosed. He was waiting for me to be strong enough to endure the procedure.
There is no question that something has to change in the way the medical community views CD.
While our disease is “treatable” (but not curable) as are most Autoimmune diseases, the serious complications and tendency towards developing other AI diseases (like diabetes, Rheumatoid arthritis, lupus, hypothyroidism et. al ) as well as lymphoma IN CONJUNCTION WITH LONG UN-DXED CD makes this a worthy foe indeed. It’s nothing to take lightly nor is it “easy” for many of us.
If any of you have been diagnosed at a young age, that’s wonderful because you have the advantage of living a less complicated life if you avoid gluten and take good care of yourselves.
So, this disease is “trendy”?? oooh, so THAT’s what I was during those lost years in what I call Gluten Head Hell–I was being “trendy”. My husband is delighted to hear this news. Here we thought, I was just dying and no one gave a rat’s ass.
Being “trendy” makes it all better now.
Lady, you do not know what the hell you are talking about and I do not know how you call yourself a doctor. Pick up a medical journal once and awhile and learn why this disease is finally becoming diagnosed PROPERLY. You should be ashamed of your reckless comments, but since you spend your time appearing on TV shows instead of keeping current with medical journals, I doubt you have given any thought lately to your oath “First Do No Harm”.
Gluten dude, thanks so much for letting me vent.
I feel much better now :>)
Kind regards to you.
Irish Heart, thank you so much for your story. We are so lucky to have this forum to communicate with kindred celiacs. 🙂 Because the disease is so often trivialized, I thought I was alone in my struggle with celiac until my husband found Gluten Dude’s blog. I thought, “Is the severity of my symptoms all in my head? I’m doing my best to soldier thought this, though. Maybe I’m going crazy?”
Your story is articulated so well and is a really good, easy-to-understand representation of what a lot of super-sensitive celiacs with severe cases have to endure. I hope that you are sharing your story far and wide, including sending an e-mail to The Today Show!
Thank you again. 🙂
Hi Jen & Coeliac sisters,
whoops, I see I made a few typos in my rant. (apologies) As you can see, I am very passionate about this topic. 🙂
thanks for your comments.
Never let anyone tell you your symptoms are” in your head”.
What hogwash.
Loss of muscle mass, ataxia, vomiting, dehydration, and vitamin deficiencies are not something anyone can “make up”.
I am a member on another celiac site and I take every opportunity to tell my story LOUDLY so I can to try and help others as much as I can.
My doc wants me to write a book. Start guest-speaking to celiac support groups. Maybe I will someday.
Honestly, if I had not lived this nightmare myself, I might find it hard to believe a food protein could do this much damage.
There is so much about this disease we do not know.
So many people suffering needlessly.
When did doctors stop LISTENING to what the patient is saying?
We all need to keep telling our stories so the realities of what Celiac can do to the body and the brain are better understood. My ordeal is not something I would wish on anyone else. Thank God I have a loyal and loving husband who knew something was not right and believed in me and supported me when I insisted tearfully and relentlessly that we keep looking. He says I saved my own life. I did–but I did it because I had him. PS He is gluten free with me–of his own accord. No more Guinness? that’s true love, baby
Irishheart, I’m stood up applauding you! Well done for being so bloody tenacious! If it hadn’t been for my mum, who knew something was wrong with her daughter (me) she was fed up with her GP constantly telling her she was imagining my symptoms. In the end she said right I’m off for a second opinion and thanks to Dr Stephenson, who straight off said I know what this is and sent me off to a fantastic hospital in Oxford who confirmed it……later I was told I was cured. Some years later told to go back on gluten free diet by a very savvy Dr, I havent looked back I don’t know how I managed it.
STILL APPLAUDING YOU!!!
Ax
Your story should be required reading for every single person in the medical community. So sorry you had to go through all of that suffering simply because you could not get a proper diagnosis. Unreal…just unreal.
Would you mind if I use your story as the basis for a new post? I think it would be helpful to share.
How does this even start? It’s like saying Diabetes is a trendy disease, but it’s easy to deal with because you just have to watch your blood sugar.
My babies are celiacs (ok, so they’re teens, but they are still my babies). They are asymptomatic, but have tested positive using all the tests (including biopsy). It’s terrible for us. People ask them, “So what happens if you eat gluten.” If they say, “nothing,” people are convinced they do not need to be on this diet. They have learned to look people in the eye and say, “I could die.” I mean really, this is a life threatening disease.
That’s exactly what they should say.
They are asyptomatic because they are Silent celiacs–no overt gastro symptoms–but have totally flat villi upon biopsy and so they are never taken seriously. Some of those folks remain in denial of their disease thinking but. “I am not sick; I can’t have that!” I meet people like this all the time.
That’s NOT how Celiac works. One small bit of gluten and the autoimmune response starts all over again, whether you feel it or not.. (Do not get me started on the Domino’s debacle. )
Kuddos to you for raising celiac-savvy kiddos!!!!.
I say the same thing “this thing tried to kill me. Gluten is like kryptonite. Rat poison. The black plague redux”
We need not make any excuses for our gluten-free lifestyle. It is what keeps us alive and thriving!! It does not matter if we are doubled over in pain, crappiing our brains out or looking like a million bucks–we are Celiacs nonetheless–and no gluten–if achievable in this world of cross-contamination– is the only safe amount of gluten. We cannot be “gluten light”, or “dabbling in being gluten free” or GF ” 4 out of 7 “days, or when” it’s convenient” or “trendy” or because someone on twitter is doing it too.
This is life or death.
Gluten dude, my story is in the public domain now at this point, so if you wish to use any of it to make a point, you have my blessing.
Just remember, I called it Gluten Head Hell first. LOL. (copyrighted this day by IrishHeart)
I lost a lot with this illness, but never my sense of humor.(That, I held onto with both fists)
Cheers, IH
Hey IrishHeart, I am fairly new to this blog and want to thank you for being so honest and telling your story in such depth. I just read about refractory sprue in some literature my dr. gave me this week. Until she met me she knew nothing about celiac disease, and I’m glad she is taking the time to research it. I hope you don’t have it! Can’t you have a CT or MRI first, instead of biopsy, since you are so fragile? My info reads, “Type 2 refractory
sprue can progress to enteropathy-assoceated T cell lymphoma, which may present clinically as ulcerative jejunitis. The diagnosis can be established on biopsy: CT, MRI, and 18F-FDG-PET scans can help identify suspicious areas.”
Anyhoo, I am so glad you were diagnosed, geez your poor thing! And cudos to your husband for believing in you.
Thanks so much for your thoughts.
I have had the follow through series. No evidence of lymphoma (whew) and he does not think it is refractory sprue, however, he wants to make sure I am healing. I must be–I gained back 30 lbs.
and I have an appetite again (most days). I still have some other food intolerances, but I hope they resolve in time.
I have resolved the B-12, folate, iron anemias and Vit. D is up; no thyroid issues anymore. The lingering joint/muscle pain and weakness is resolving — slowly —and I am in PT and MT 2X a week. I can get sleep now. For a year, I was lucky if I got 1-2 hours a night.
I get “revved up” on gluten. Some people get sleepy. I am exhausted, but very racy.
You know guys, it takes an average of 11 years for someone to be DXed properly and that is just wrong.
I had my gall bladder out when I was 25 (no one in my family has one of those left!) and I starting asking about joint pain back in the late 90’s after a series of inexplicable miscarriages and I got the fibromyalgia word thrown at me by a pain management doctor who saw me for exactly 5 minutes (a syndrome for which there is no effective treatment or cure) and then, I heard osteoarthritis (and took prescription NSAIDs which made the gut worse) and then, bowel/gut stuff started getting bad. (so the gastro is telling me I have IBS and GERD and here are some more drugs) They symptom-treat instead of finding the CAUSE of the problem.
That was in 1997.
I was DXed in 2010.
All that time, it was Celiac and if I had been DXed properly, so much pain and misery could have been avoided.
The irony is? I have no more “GERD” or “IBS” but the long term malabsorption has caused the leeching of calcium and other nutrients and so, I struggle with bone and muscle pain and loss of bone density..
I just keep my eyes on the prize–total remission and recovery.
Thanks to all of your for listening.
I hope that all of you have good follow- through care with a doctor who knows what tests to do to ensure you are healing and that your vitamin/mineral levels are within normal range.
Best wishes all!
You couldn’t get away with calling another disease trendy. You can’t call diabetes trendy, so why Celiacs? Once again people’s ignorance and there idea that this is just a fad diet monopolizes people’s image of celiacs. I am disappointed to see the media has bought in the hype too.
We share your frustration Alaine.
has anyone gotten any response from that moron Dr. Keri Peterson? I think we should continue to bombard her with nasty messages until she will no longer ignore them! I told my parents about this today and they were absolutely disgusted. They both said I should write a letter to the Today Show and complain about this. Problem is, I don’t know if they would even pay attention. Anyway, we need to send out a petition to them demanding that they owe us all a major apology! This is totally unacceptable!
I checked out this Dr. Keri Peterson’s website. You can contact here here:
Keri Peterson, MD
110 East 59th St.
(between Park and Lexington)
Ste. 9C
New York, NY 10022
Phone: 212-583-2962
and here’s a link to her Facebook site:
https://www.facebook.com/Dr.KeriPeterson
I already wrote a comment on her FB site. It’s pretty angry, but it gets the message out loud and clear:
you are a DISGRACE to the Celiac community! How do you have the nerve to say that Celiac Disease is a “trendy” and “hot” disease? Is cancer “trendy”? Is AIDS “trendy”? You owe us a huge apology. What you said is unacceptable and disgusting! Shame on you!
I appreciate your passion Rachel. And lord knows, I can use salty language at times. But maybe a bit less attack mode and more education mode would be more effective. I’ll reach out to her again…privately.
I agree.
No one really listens when they are being screamed at.
( I know I don’t anyway…)
I do not tweet or FB, so I only vented here and to friends.
I imagine she has already been bombarded with plenty of angry messages.
And by next week, it will all be just a bad media moment memory.
Sure was a crazy week wasn’t it?
Yeah, perhaps you’re right. Just angry about the whole thing right now. And I checked on her FB page and it only looks like a couple of other people have voiced their disapproval with her remarks. I’m not sure if she has been bombarded with plenty of angry messages. By me, but I’ve done my part on this whole thing.
I knew there was a reason I stopped watching the Today Show…. I tend to think of it as the gossip morning show. I prefer ABC’s where they talk news or CBS’s where they talk about more important things.
can’t.stand.the.today show. Partly because of the hosts–it’s like sitting in high school listening to the “fabulous” (ha ha) people gossip and dis on everyone else.
That pretty much explains why I stopped watching almost all TV.
the reason they refer to it as a trendy disease is not just because we are hearing a lot about it right now but because it is popular to have it. Seriously, i can’t tell you how many people i grew up with that i know are perfectly healthy individuals, that have gained weight and use celiac disease as a way to avoid high calorie carbs. they read about it, suddenly apply the label to themselves, and then go around telling everyone what they can’t eat now. these same individuals will have gone through other dietary phases as well, such as vegetarianism, vegan diet, corn-free blah blah blah. finally they have settled on celiacs, at least for a couple years until everyone forgets and then they will go back to eating normally. they advertise their imaginary disease to make them feel special and it is clearly a cry for attention and a weight loss ploy.
sure, there are real celiacs out there who suffer, but the truth is, there are a lot of pretenders too. america has issues with food, if we aren’t eating too much of it then we are constantly following new diet trends to feel self-righteous. celiac disease is trendy because it works with the american mindset of restrictive eating without restricting fats and sweets. you can’t deny there is a superiority complex that people have about foods and diets in the west.
I know people go “gluten free” for the wrong reasons, but I can’t believe people would actually lie that they have an autoimmune disease.
Things never cease to amaze me.
I have never met a person who claims to be celiac when they are not. I am doubtful that this happens often.
I have read about a lot of people who have given up gluten because they read on the internet it would help them lose weight or it might be healthier to eat meat and vegetables.
So what? Why do people get so supportive when some idiot who eats nothing but raw bananas gets on television and babbles nonsense about it (as their hair and teeth fall out) but they are outraged when people who get sick from eating bread give up bread?
So, let me get this straight….It’s “popular” to have a life-threatening autoimmune disease? People actually say this? WTF?
Wow, peeps, we’re trendy AND popular.
Tell that to the people who roll their eyes at us when we ask for a gluten free menu because WE NEED IT TO STAY WELL..
Tell that to the distraught people I have met who report spouses leaving them, and those who lose their jobs because they cannot function, and those like me whose lives come to a complete stand still while deathly ill.
This thing causes more pain and misery than anyone can imagine.
Yeah, malabsorption and malnutrition is all the rage. Hair loss, muscle wasting, brain damage, thyroid disease, lupus, fatty liver, lymphoma–so cool!!!
What the hell is wrong with people?
Really, if you see anyone “pretending” to have celiac– ask them why they would do such a stupid thing.
This is why we get no respect.
This is just more celiac “UNawareness”.
Celiac is not popular. Celiac is a worthy foe. I’m in the battle of a lifetime here.
Celiac–IT AIN’T FOR SISSIES (I think I’m going to have that put on a bumper sticker and a tee shirt)
Irish Heart, I coincidentally just quoted you this afternoon(before reading this) after reading your slogan in a previous post last week, “Celiac–IT AIN’T FOR SISSIES”
This phrase has become a part of my own internal pep talk since reading it in your post. I love it.
LOL
I speak da truth, Jen!!
I didn’t get the nickname “Warrior Princess” for nothing!!
Hang tough, girl! You’re going to be okay!
Just found your blog and am LOVING your posts. How can anyone identify a disease as ‘trendy’ – RIDICULOUS!
Thanks Jo.
How can anyone indeed?
Dozy tarts!
It’s doctors like her that I’ve had to put up with for 7 years and am still no closer to finding out what is truly wrong with me! I’ve had countless bloods test – they all come back negative, which they will do if you’re on a gluten/wheat free diet! I’ve been in the middle of a “gluten episode” and begged the doctor to do a blood test and they have – for glandular fever! (which they have told me I don’t have, funny that!) I’ve had trainee doctor shove cameras down my throat for an endoscopy and had to listen to Johnny Cash’s “Ring of Fire” which having a colonoscopy (not kidding! The irony was not lost on me, even under the influence of drugs!), again to be told there’s “nothing wrong” with me. I’ve been told I’m just stress or it’s under active thyroid, or that I’m just simply making it all up. And the list of foods I have to avoid gets forever longer – wheat, gluten, dairy, nuts, soya, the list goes on! I’ve had to self-diagnose all the way and everyday I’m scared to put food in my mouth because I don’t know what reaction I’ll get when it hits my stomach due to dozy unhelpful heifers like her who are practicing medicine! Doctors need re-educating! In fact I’m so annoyed I don’t really know what my point is any more! I need a cup of tea and a lie down…….
Sorry, but that Ring of Fire comment cracked me up. They didn’t put you under for your tests? I would demand it next time.
And yes…the medical community has got to get their sh*t together…pronto.
I’m lovin this expression: DOZY TARTS
PERFECT!!
Berni,
So sorry you have had the same struggle as I once had.:(
the doctors can scope you until doomsday, but without a biopsy, they aren’t going to know if there is villous damage.
Even then, depending upon the stage that damage is and how skilled the doctor is at doing a thorough biopsy, they may not find it. The diagnostic criteria has its flaws. People blood test NEG approx. 30% of the time.
Your multiple food intolerances may resolve (except the gluten, of course!) Celiacs regain their ability to enjoy soy, nuts, dairy, etc.. when the villi heal.
I still cannot do soy products like soybean oil, but I am not a soy eater anyway. (blech) I just got my ability to digest small amounts of dairy back after 18 months GF. (yaay!)
No matter what the tests say, your body is your best indicator.
Best wishes to you.
And check your tea for malt. Yes, it can be in there, too. Gluten is a sneaky bugger.
Berni,
I too had to laugh about that Ring of Fire comment, what a hoot. On a more serious note, if you can afford it b/c most insurance companies will not pay for it, I would go for the genetic test to see if you have celiac disease. It certainly sounds like it.
http://www.celiac.com/articles/1046/1/Understanding-the-Genetics-of-Gluten-Sensitivity-by-Dr-Scot-Lewey/Page1.html
This article may help you understand the genetic testing and its importance when you are not getting any answers. I am DQ2 and DQ8 positive. As I have mentioned before it took 30 years for a diagnosis. It is unbelievable, which everyone on this post can relate to. You have found the right place to vent, Berni!
Good thought about the Gene test!!!!.
Just one additional thought–a small percentage of people do NOT have either of these 2 genes and they still have Celiac. My doc scoped a guy even though his genetic test was Neg and his blood work was Neg. Totally flat villi.
If you are the rare one, you may be told “you can’t have CD”.
Simply not true.
I had NEG blood work and I am HLA-DQ2.2 (this combo accounts for only 1-2% of all celiacs) and is often negated as a “main celiac gene”.
Doctors have to look at ALL the variables.
Okay, now you guys have me laughing at the Ring of Fire…,
Yeah, easy treatment, huh?
I would love to see either of them try taking a two-week vacation with a GF family of five, from car to rented cabin, that is, a cabin with a kitchen, AND washer and dryer. The kitchen because it’s all but impossible to afford to feed 5 people at GF restaurants for two weeks (even assuming they’d be available), and the washer/dryer because if I wash clothes at the laundromat, they’ll be coated in glutenous soaps.
And, seriously, cleaning the cabin kitchen in a mask and gloves before putting any food in it because even when pre-cleaned, there’s residual wheat/crumbs. Take own toaster, spices, and enough food so we don’t go broke re-purchasing it all at the vacation spot. Run the washer through vinegar rinse cycles enough times to get rid of the residual soap before washing any of our own things so the dermatitis herpetiformis rash doesn’t flare up. Doing all of our own cooking and laundering, which is what I do at home…wait, why is this a vacation again????
Even though I sound bitter, I’m really not… a different view is always great, and family time together without the regular home distractions is truly priceless.
Reality screams though, there’s nothing, I repeat, nothing, EASY about this!
Most non-celiacs just don’t get it.
Testing problems?
http://www.biomedcentral.com/1741-7015/10/13/
it’s called GS – but really we all know what it is – a failure to admit that the tests aren’t exactly all that useful
the one I think I’d go for are ANY IGG or IGA running about – although genetic testing is also useful it won’t necessarily tell you if prone to leakage through Zonulin (protein that participates in tight junctions between cells of the wall of the digestive tract) and of course you can guess what activates it…
Gluten Dude, I never saw this episode, but I can’t resist lodging a complaint whenever possible. I sent this gem to the Today show via the website. No guarantee anyone will see it, but it made ME feel better. 🙂
“Was watching Kathie Lee & Hoda go on about those annoying, picky dinner party guests in which they included people who are gluten free but excluded those with peanut allergies. I realize that the two have the combined intelligence of a gnat, but I was angry to hear my Celiac Disease (that which necessitates the gluten free diet) lumped in with Jenny Craig. I’d be more than happy to attend a dinner party, eat their food, and then make their bathroom uninhabitable due to the subsequent stomach distress. They either need to become knowledgeable about this disease, or they need to find something else about which to flap their gums.”
My son has experienced: Arthritis, lab tests, xrays, constipation, Endoscopy, encoporesis, nocturesis, anxiety, golitely clean-outs, crapping in his pants, pain, fatigue. He has experienced doctors who think he is over reacting, doctors who think I was over reacting. He has felt badly about himself. He is 10 years old and has been struggling with all of this for 5 years. We have been trying to help him and fiure out what was making him feel so badly for five years.
Today, his small intestine biopsies showed that he has severe Celiacs disease.
I do not think this is trendy.
I do no think this has made him feel cool.
It has really, really, really sucked for him.
Shame on The Today Show.
They are really, really, really ignorant.
We all feel your pain and frustration Laura. Much of the media is indeed so ignorant when it comes to our disease.
So sorry to hear about your son. If you need any advice, just let me know.
this looks so good, I will have to try this!
My 28 year old daughter was diagnosed a celiac through small intestine biopsy, in December 2011. She has been gluten free since January 2012, as soon as we found out. We had the odd slip up, but were otherwise progressing well. She was gaining weight, was headache free, had energy and was happy, all her symptoms went away!!! Unfortunately, about two months ago, she started getting really sick again. Sudden weight loss down from a healthy 118lbs to 97lbs in one month, pain etc. We are now dealing with a diagnosis of refractory sprue, which will kill her. Our outlook is very bleak at the moment. So yes, this disease is dangerous and it does KILL people. I’m devasted right now, with little options for treatment for her!! Thanks for your time!!
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1810502/
Definitely think about the cross reactivity of other proteins – most especially casein as that seems to be the most common problem and try eliminating any suspects to see if it makes a difference. I get quite sick on casein (but this only happened a fair way down the track of going GF) – and it seems a fair number of other coeliacs do also to a greater or lesser extent. Unfortunately there are very few studies – but the one above is pretty good.
The other thing is I (and another diagnosed friend) also react quite badly to even small amounts of MSG – to the point where ” no ADDED MSG” even sets my alarm bells ringing. Again we don’t seem to be alone in this – but it might be considerably rarer. A specialist the other day explained it along the lines of – the more damage that has been done the easier for strange molecules to get in – the more stuffed up the immune response and the more cross reactivity. Good luck – and don’t give up hope.
Hi Joan. I’m so sorry to hear about your daughter. What does her doctor say? Is there any way to fix or reverse the refractory sprue?
Please keep me posted on her condition? Sending strength your way.
GD
I was just recently diagnosed with Celiacs and as an added bonus, was told I had lymphocytic colitis on top of that. Hmmm, a common theme among Celiacs is simply trying to get someone, anyone to believe that they are truly ill. Going through the years in my mind now, I think I’ve had CD for more than 20 years and didn’t know it. The last 10 years have been especially hard…all of the humiliation, anti-depressants, being told there is nothing wrong with me and then finally like Ms Esposito, begging and pleading for help. I had really mixed feelings when the diagnosis did finally come in. On one hand, I was relieved that I wasn’t CRAZY or a hypochondriac. On the other hand I was really, really pissed at all of those doctors that labeled me nuts and that I had to suffer so many years and wondering myself if I was indeed crazy. I want to call all of the doctors I’ve seen over the last 10 years and tell them FO, or go right to their offices and give em the bird right at the front desk. I don’t guess that would serve any good purpose other than to make me feel better. Hey guys, do you ever get over your feeling of animosity towards the medical community and how in the hell do you learn to trust doctors again???
Well Nancy, I went thru the same damn thing, actually there is quite a lot of us out here that has had the same thing happen. Was told I had IBS, and I believed the drs. I have huge animosity towards the medical community. I was diagnosed in March and had been suffering for 30 years. Test after test, as I aged the symptoms got worse, and I could not take it anymore, told the GI that IBS cannot be this bad. I asked to be tested after a friend of mine told me about celiac disease, I had no clue what it was. I have hypothyroid, heart palpitations, a most sensitive gut still…permanent brain fog or A.D.D. whatever you want to call it.
Before I knew about celiac disease, I went AGAIN to a GI in 09, complaining about the horrible gut/stomach aches after I ate, the explosive diarrhea. He did a stool sample, CT scan, colonoscopy, put me on Flagyl (sp) for a month. Told me he could not find anything wrong. Was he looking for celiac disease, NOT! 3 Years later I get the diagnosis.
I called him after I was diagnosed. He was on vacation, I left a message on the voice mail asking him to call me b/c I wanted him to know. Months go by and I get a phone call from his office. One of the nurses finally followed up, she said the dr. did not know what to say to me. She wanted to know everything about my gut issues. We were on the phone for a good 45 min. She said it is going to be a protocol in his office to check for celiac disease. I was glad I called, I was civil, did not scream and holler, that would not have helped. So, if I were you I would call all the drs. that you have been to, and ask if you can explain what happened to you, so that maybe in the future it won’t happen to someone else.
I don’t go out to eat, and I will not let anyone cook for me. Good thing I live in paradise, b/c pot lucks are what most people do, so I get to bring my own food without a hassle most of the time. Eating out is too expensive anyway.
Sorry to hear about the lymphocytic colitis. I think now that you have a diagnosis, stay off gluten and other foods that you will learn that bother you, it will hopefully clear up. Prescription meds can have gluten, you have to call the manufacturer, there are so many hidden places for gluten.
My “new” dr. here wanted to put me on a cholesterol lowering drug, I could not handle statins, either the mfr. would not tell me if there was gluten or the drug/drugs just plain bothered me. So this other drug she prescribed, not a statin, gluten free, actually has to do with absorption of fat, and it interferes with that, I got home read the pamphlet, called her and asked, are you trying to kill me? Why would I take anything that would screw with my gut. I don’t trust drs. period. There are not any specialists here, there might be someone in your area that knows about CD, you may want to google that specifically.
This whole cholesterol thing, in my opinion, is a scam. “They” keep lowering the numbers, impossible numbers for most people, to make sure we take the drugs. We actually need cholesterol to survive.
I’d rather take the risk of a heart attack than have all the side effects, not knowing if there is gluten in the drug, if it is going to compromise my gut, or my liver, aches and pains in the joints, and God knows what else it can do to you. There is so much controversy out there. Did you know we can eat eggs. (Note: some of you out there can’t eat eggs, this info is for those who can). For crying out loud thank God for that, b/c it is one of the only foods that does not bother me. Eggs actually raise our HDL, it is unsaturated fat. The food pyramid we were taught is what has made our population obese.
Gary Taubes is a science writer that is deemed controversial but has opened my mind to what we were taught and how it is all wrong. He actually founded a non-profit organization to get to the crux of the matter, even his own theory on why we get fat.
Ok this is a different rant.
I hope you start to feel better, and am glad you now know you are not crazy! Hope I did not bore you either!