I really thought we were making a dent in celiac awareness.
I had convinced myself that the gluten-free fad was just that…a fad that had begun to run its course.
I led myself to believe that 2012 would be the year that we’d shift the focus away from gluten-free food and onto the diseases that are caused by eating gluten.
But…as Chandler Bing would say…”could I BE more wrong?”
Take a look at the above chart. (No…there will not be a test afterwards.)
It compares the search volume of the terms “gluten” and “celiac” from 2004 until now.
From 2004 til 2007, things were moving along just swimmingly.
But then what the bloody hell happened in 2007 (ironically…the year I got diagnosed with celiac)?
Notice a trend since then?
Gluten is all the rage.
Celiac has flatlined.
What does this mean?
It means people are buying into the gluten-free trend.
It means the food manufacturers have done a wonderful job spouting gluten-free as the end-all be-all to all your dietary needs, while the medical profession has not been quite as effective in getting their message across.
Gee…I wonder which one has the bigger budget and is driven by profit more than compassion.
And look at some of the headlines from just the past few days:
“Gluten-free: Just a fad or healthy option?”
“Should everyone go gluten free?”
“Gluten Intolerance: Is It A Fad?”
I seriously thought we were done with this crap.
So what’s a Gluten Dude to do?
Do I just throw in the towel and admit that it’s a lost cause?
Do I admit that I can never change the perception of what gluten-free means to those who truly need it?
Or do I take it to the next level?
Do I continue to fight the good fight?
Here’s your answer…WHO’S WITH ME?
I’m with!
Well what would one expect? Drs are seemingly ill educated on the body as a whole being and often fail to see that diet related issues (ones that can’t be detected by simple blood screen such as diabetes) affect the body in such a dramatic and often insidiuos way as does gluten Put simply you don’t run a diesel car on leaded petrol. It isn’t rocket science but until we have a well known advocate (the ilk of Madonna or the queen) (sorry can’t think straight) we are going to be labelled as ‘fussy’ ‘difficult’ or put in the too hard basket. I was diagnosed by accident and thank God I was diagnosed at all. A lifetime of illness. Short stature. Fertility issues. The list was endless. Not one gp asked me if I was allergic to anything. Ever. Don’t give up gd. Please don’t. Your blog makes me feel understood and not quite so alienated from everyone else. We have to keep harping on 🙂 one day it will get through.
Thanks for the passion Helen.
Ironically it was my GYN (a reproductive specialist) that first mentioned celiac. “You have all the symptoms, infirtility, foggy memory, failure to lose weight with exercise & diet, cronic fatigue”.” Try not eating anything with flour in it the next 2 weeks & report back at your test for possible cancer” when I improved other tests followed.
IN. Our “diet” is NOT a fad. We are NOT a joke. WE ARE CELIACS, we stand together, and we know the true definition of a shit storm that lasts for days in to weeks. I will never be silent about this. Is is my life, it is my children’s lives. As long as we ban together, speak up, speak loud like we’ve done with Lisa and Ryan, the more we can get to understand. There still will be the bandwagoners, the self diagnosed, the people who believe that Naturopaths, Cardiologists and Chiroprators know what they are talking about (albeit the fact they were never truly educated in the digestive tract as are Gastroenterologists) – you can’t fix stupid. Not with duct tape. But let us hope for every 10 dumb people out there, one “gets it”.
Kelly please pardon my “duct tape & stupid” my GI doc did nothing to help other than try prescribing anti-depressants (because they fix fatigue), gave me surgery he said after the fact I didn’t need, ignored the positive celiac blood test & patted me on the head sending me away with a whole grain diet…umm yeah
My naturopath FINALLY believed me!! With testing it turns out celiac is the least of my issues with 6 auto-immune issues at work ruining my life.
Yes its a ton of pills & changes in diet that surpass the “normal celiac” but for the first time in a decade I’m feeling normal & able to live life instead of watching from the sidelines.
Kelly please be careful with sweeping generalizations of who does & does not have this disease just by looking at them. This isn’t a contest of “who is celiac enough”. We deal with that enough from everyone else thanks so much!!
TX Lady:
I am Celiac. I have over a dozen auto immune issues/diseases (all medically diagnosed, not self diagnosed). Both my children are Celiacs. All 3 very different issues. If your doctor didn’t help you, what stopped you from finding another one who would? Doctors work for the patients, not the other way around. If they are not doing what they are paid to do or lack the education, it is time to find another one. Without proper medical documentation and diagnosis (through bloodwork and biopsy) good luck getting a 504 plan in place for your kids or fighting college’s and financial aid over time your child has missed due to illness related to said disease that is covered under the ADA. Without documentation, you have no backing. How do I know this? It is my current battle.
We’re all in this together folks…
Let me add. I do understand that people have a gluten “sensitivity” and there are those with wheat “allergies”. But, they are NOT Celiac. We do NOT have an “allergy”. I understand they need the diet, but they need to understand that it is much more than just a diet for us.
Thanks Kelly. I actually wrap all those who NEED to be gluten free under one umbrella…whether it’s celiac or intolerance.
Kelly,
You replied “We do NOT have an “allergy”. I understand they need the diet, but they need to understand that it is much more than just a diet for us.” Really? How is it more? What symptoms and battles are specific to celiac and what symptoms and battles are specific to gluten sensitivity. I tested negative with the celiac blood test. I quit my job because I was so sick with this mystery illness I felt it was the only way I could save my reputation and get well. I have no insurance for a biopsy. I also have diagnosed insulin resistance, hypothyroid, rising kidney creatnine (and hearing loss starting in my 20’s which is also autoimmune). If my stomach was so swollen I wore maternity pants, my brain had no executive function to do my job (I have 4 college degrees and quite a bit was expected of me at work), I chose to QUIT MY JOB to save my reputation, I had fatigue and flu-like symptoms beyond belief from simply using wheat protein shampoo, I couldn’t remember why I walked into a room and once couldn’t remember my phone number, and my struggle with treatment resistant depression was so intense that death would have been welcomed, then why are my symptoms “less than” yours because I don’t have the celiac label? I will never pay for a biopsy because with research and using the elimination diet I diagnosed myself and ALL of those symptoms disappeared by removing gluten from my diet. Why is that not good enough? Why do I have to pay a man in a white coat thousands of dollars to get acceptance from any group of people? Why can’t I use the term celiac just to get a little more understanding from people rather than the obscure “gluten sensitive” term that people like you even think is less than. I’m very grateful GD includes me because what blog would I go to otherwise? The “sickenedbyglutenbutnotreallyceliac” blog? It doesn’t exist…..yet.
The bottom line is that wheat has been propagated and changed so much it’s making many people sick whether a lab test shows celiac or not. Gluten in wheat makes it pest resistant and if pests can eat it many people can’t eat it either. Kelly, please rethink your stance. You don’t know me and telling me my symptoms and battles are “less than” hurts.
Dude, the increase in the search term gluten could be due to all the people with celiac looking for recipes, products, vitamins, etc. Most people could search for “gluten” a lot more than “celiac” after diagnosis.
The only difference in my mind is that celiac is an autoimmune and gluten intolerance is not. And the physical damage that occurs may be different also but I’m no doctor and am not qualified to specify.
But the emotional toll and the physical pain can be just as bad for both. Heck…I’m sure there are many celiacs with less symptoms than somebody with intolerance.
We are ONE folks. Let’s stop the infighting.
Gluten intolerance is not autoimmune? I have many of the same symptoms as you do. It is not a different process, like an allergic reaction is.
Gluten intolerance includes celiac, which is diagnosed by a single symptom of intestinal damage, even though there are many symptoms, and non-celiac gluten intolerance, which can include any or all of those symptoms but the one.
THANK YOU, JENNA!!!
I tested negative for Celiac as well, and my quality of life was horrible. I have three kids and was sick ALL THE TIME!!!!! It was affecting every aspect of my life and my marriage. I was tested for so many different diseases and everything was negative. With each negative test I was passed along to another doctor.
Please do not treat me as though I’m gluten free because it’s “in” and my issues are not real or that they are less important. I did not choose this any more than anyone else.
Jen and Jenna
If gluten makes you sick, you absolutely should not eat it.
I view celiac and NCGI the same as far as potential symptoms and the need for a gluten free diet (In fact, I am “one of those” celiacs who thinks gluten is bad for everyone. The wheat today is not our grandmother’s wheat and our bodies are not equipped to digest this grain very well at all. Everyone can have a balanced diet without this one protein. )
I also think the majority of the Dude’s readership is a mixed bag of celiacs and NCGIs and their family members and only rarely does someone make “celiac elitist” remarks. Makes me uncomfortable to read them myself.(This observation is based on nearly a year of reading this blog, BTW).
Besides, no one should have to defend their dietary choices.
Whose bloody business is it anyway? We’re all grown ups.
Just my two cents, as some one who suffered from chronic migraines, fatigue, skin rashes, etc. I found out in 2011 I’m severely allergic to wheat and have since altered my diet. My MD told me I did not test positive for Celiac (only blood test was taken), but that my results for wheat allergy were off the charts. I think it’s important for BOTH allergies and intolerances to be recognized, though different symptoms and actual needs vary. I see a lot of debates between those with allergies and those with intolerances or Celiac. I’d rather send one message that gluten in any form is harmful to many, and the “diet trend” that others follow thinking they will get skinny is the real issue. Either way, I’m with ya!!!
I’m mad as hell and I’m not going to take it anymore!!!
I’m in!!
<3 this response! YAY!
Ditto 🙂
Dude, I think you KNOW that I’m in!!!!!!!!!
Thanks Donna…
I don’t doubt that celiac is not getting the attention that it needs, and it makes me really frustrated that eating gf is seen as a fad, but I think the search results can’t be totally seen as an indicator of that. I search pretty much every day trying to find out if a food or restaurant has gluten in it so it is safe for my kid to eat. So my searches are something like “brand name” gluten free? Until we get better gf labeling I don’t see that changing-another thing that really makes me mad.
I understand that perspective on the search terms Colleen. But the fact remains that gluten and celiac were neck and neck until 2004 and then once the fad took off, that was that.
Since 2004 many parents have been healing their autistic children through GFCF diet. In 2007 Jenny McCarthy became vocal about how the diet helped her autistic son. One in 88 children are diagnosed on the autism spectrum (regardless of what one may think the cause of that is) so what about all those parents googling gluten free healing and recipes. Also, since 2004 gluten has been connected to depression, bipolar disorder, schizophrenia ADHD and learning disorders. Organic food has become popular and people with and without health problems are becoming more aware that our standard American diet is crap. Many people are struggling with physical health and many struggle with mental illness. The inclusion of the word “gluten” into the mainstream population gives them a search idea and people find research studies with answers that way. My symptoms felt like adult onset autism and I wouldn’t have been healed without a friend with an autistic child prompting me to go gluten free. So I began googling. I’m sorry Dude, but celiac is only one of many illnesses related to gluten and sick people have to start their search somewhere. The other illnesses I mentioned aren’t any less severe.
Recent research at the University of Maryland Center for Celiac Research shows that “gluten sensitivity is a different clinical entity that does not result in the intestinal inflammation that leads to a flattening of the villi of the small intestine that characterizes celiac disease. The development of tissue transglutaminase (tTG) autoantibodies, used to diagnose celiac disease, is not present in gluten sensitivity”.
“Just as in celiac disease, gluten sensitivity can affect all body systems and generate a wide variety of symptoms. Gastrointestinal symptoms can include diarrhea, bloating, cramping, abdominal pain and constipation.
Behavioral symptoms can include “foggy mind,” depression and ADHD-like behavior. Other symptoms include anemia, joint pain, osteoporosis, and leg numbness.”
How many people does gluten sensitivity affect?
“Research from the University of Maryland Center for Celiac Research indicates that it affects approximately 18 million people, or six percent of the population.
Gluten sensitivity may affect the digestive and central nervous systems. At the University of Maryland Center for Celiac Research, patients diagnosed with gluten sensitivity – without celiac disease or wheat allergy – reported the following symptoms:
70 per cent had abdominal pain
40 per cent had eczema or other rashes
35 per cent had headaches
34 per cent had a “foggy” mind
33 per cent had fatigue
33 per cent had diarrhea
22 per cent had depression
20 per cent had anemia
20 per cent had numbness (arms, legs or fingers)
11 per cent had joint pain
_________
So, to sum up, 18 million people suffer horrible symptoms, and although “clinically different”–in terms of not having villous atrophy–they are still clinically significant in terms of debilitating symptoms and suffering.
The main point is : “Just as in celiac disease, gluten sensitivity can affect all body systems and generate a wide variety of symptoms”.
Even if I had never received a confirmed celiac DX, (and it was hard earned, I assure you –even though I was dying right before those doctors’ eyes) I would have stayed off gluten for the rest of my days.
How could anyone NOT be with you after posting that John Belushi scene from Animal House? It’s one of the best ever…..
What bothers me more than the gf fad thing is that doctors are still clueless and treating people like crap in their quest to see if they have a real problem with gluten. If it’s a food issue, they avoid it. That’s what I will never understand….they are part of the problem.
This will continue to be an issue until there is a pill to “cure” celiac. As most continuing education is paid for by drug companies & celiac is a disease only helped with a natural diet, there is no motivation in the medical community to do anything but poo-poo us as a fad.
FYI my naturopath was the first person in the medical community to not tell me “its all in my head” & prescribe anti-depressants for a persistant stomach problem. GI doc took out healthy gall bladder because during testing ($15000) everything pointed that direction for recurring pain. After surgery he said “I took it out just in case, but this isn’t the source of the issue”. Ironically the pain stopped.
Better than the speech from Patton!
Gluten Dude I’m with you. Count me in!
Woot!!
I am so with you. Heck, we still have to educate medical professionals about Celiac Disease! We’ve got a long fight ahead of us, and I would love to be of assistance to those who come after us.
That’s a great way of looking at it Denise…
continue to fight the good fight. not all people that are sensitive to gluten are celiac. gluten affects other areas of the body on non-celiac individuals. the awereness of how gluten affects our bodies is increase which is VERY good. my husband and both my sons have ADHD we started a gf diet because of that we continue with it because of the digestive health we experience as well. don’t be a hater because celiac is no longer the center of attention. be glad that gluten – the real poison here is getting the attention it needs.
I am astounded @ Jodi for thinking anyone on here is a hater. Gluten is NOT what needs the attention…it’s Celiac disease. Yes, going gluten free helps other ailments, but in having those other ailments you CAN eat gluten whereas with Celiac disease you CANNOT have gluten! It is TRULY a poison for those of us WITH Celiac. It’s great for you and your family that going gluten free has helped with ADHD! Do your husband and sons have permanent damage that was done to their bodies due to being (unknowingly) glutened all their lives? I don’t think they do, but I do! Perhaps you should educate yourself on Celiac disease and what gluten does to a person with CD!!!!!! You might change your mind about calling us “haters” and you might realize why all the gluten “fads” make it so much harder for those of us with Celiac!
By the way…WHEN has Celiac been the center of attention?
I understand and appreciate your viewpoint Jodi.
But that’s kinda it…the focus is on gluten and on the diet and how it’s the end all be all of all of life’s ills. But within a few years, when another fad comes along, this will all pass and those that need gluten free to survive will be left holding the bag.
And I may be sarcastic. I may be snarky. I may be a pain in the ass at times. But I’m not a hater. Honestly.
Well put Dude, well put. We are not haters. But we are the victims. People are missing the point.
Hey Dude, Mark twain said “Never pick a fight with people who buy ink by the barrel.”
So, of course we keep up the good fight.
But here’s a food for thought:
Why don’t we address it as a ‘gluten free lifestyle” as opposed to a diet?
Often, I find myself wondering, why aren’t we advocating it as a lifestyle change? It is nothing short of it, after all.
People with diabetes, cardiovascular disease : they have to cut sugar, salt, fatty food from their diet and undergo massive lifestyle changes.
I know of many ladies with celiac disease, including myself, who have had to undergo serious lifestyle change : eliminate gluten from diet, reduce intake of sugar, carbs and incorporate exercise to stay healthy. Especially, those with multitude of auto-immune diseases and linked disorders such as : PCOS, hypothyroidism, lupus etc.
So, I ask your readers & you : Do you think addressing it as ‘gluten free lifestyle as opposed to ‘gluten free diet’ would help get our message across louder?
Cheers!
Hk
I agree that the word “diet’ brings up issues, but to me “lifestyle” connotates a choice.
But that’s just me. I’m game for suggestions and opinions.
I just call it “my life”. 🙂
I personally never liked the word “lifestyle”….as to me, it connotes
“faddish in popularity” or “desirable” or “in vogue” (aka a trend)and all I can think of is when I first heard the term back in the 70’s when the “swinging lifestyle” became the rage. In other words, it’s elective.
“Diet” may have a negative connotation as well –suggesting something to be done for weight loss. (Dieting is used as a verb here.)
The word (as the noun) actually means:
“The kinds of food that a person, animal, or community habitually eats.”
I think “gluten free diet” makes more sense in this context.
IMHO
It’s funny, but someone posted this same question on c.com and we tossed it around for days and never came to a conclusion….. 🙂
My (now previous, but hardly forgotten) doctor didn’t just not see any connection between Celiac and “foggy memory” or cognitive function, she aggresively insisted there is zero correlation. She got on me for not keeping straight the allergy tests we were trying to get done. It was actually the lab that wasn’t giving the doc and I the same information about what tests they offer. I did also forget a couple things along the way (par for course as of late), and the doc latched onto that and suggested that poor communication was getting in the way of her ability to help me. Get yourself together or don’t waste my time was the tenor of the message. My symptoms from my celiac that affect me and make me feel & function poorly, are sometimes used against me!
We can consult with health professionals of all types and instead of being educated with a generous dose of compassion, we end up in a fight. THE fight of, and for, our lives. To me, not fighting the fight means that for just passing moments in time or, for longer durations through violent, difficult to correct course changes, the will to live well is somehow lost.
The GD blog is a compass (or GPS), helping keep me on course.
Some days, there is little determination required to set out making a “really futile, and stupid gesture on somebody’s part.”
Phenomenal comment Tim…thank you.
Need you even ask??? 🙂
You know I’ll always be a celiac voice, advocate, and educator.
Until my last breath, I will do everything in my power to spread awareness, dispel myths, and help the newly diagnosed. I will always help people obtain a proper diagnosis and not be left to suffer just because the medical community has their collective heads in the sand.
It’s a disgrace that Celiac awareness falls most short among the members of the AMA.
THAT’S WHERE IT NEEDS TO START.
Why should people like me be left unDxed for most of their lives?
It’s not because I did not seek help, either. I saw dozens of doctors.
I had big red flag symptoms, too. It’s because celiac is not considered as a cause for declining health. And because sometimes, the celiac panel is falsely negative. If I had not “pseudo-self-diagnosed”, brought my thoughts back to my stumped PCP doc and then found the celiac-savvy GI doc who saw me for the celiac I am, I would be dead by now. For all we know, I may have refractory sprue. We’ll find out when he biopsies me in a few months.
Doctors kept me ill. Period.
I view gluten sensitivity as a broad spectrum. Gluten has been linked to many disorders by researchers (for example, gluten ataxia, schizophrenia, and other neurological disorders) and in the absence of overt GI symptoms, these people will not be given any celiac testing and left …where exactly? In mental health wards? wheelchairs?
“Gluten free” as a diet fad aside (because we all know that’s just malarkey), I read a lot of research and the top celiac specialists are beginning to see gluten sensitivity as a major world wide health problem. It may not be autoimmune like Celiac, but it wreaks havoc in the body nonetheless.
They also recognize the shortcomings/ unreliability of the diagnostic criteria in place and have revamped it as of 2012. Whether the members of the medical community bother to read the published materials or not–is another story.
http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf
This section is most disturbing:
Why is celiac disease difficult to diagnose?
· Alternative diagnoses (often irritable bowel syndrome)
· The condition may be oligosymptomatic or asymptomatic
· The condition may have latent periods
· The complexity of the clinical presentation (systemic disease)
Clinicians are unaware of the condition and there are several “myths,” such as:
— CD is rare
— CD only occurs in Caucasians
—CD occurs mostly in Europe and the United States
— CD only occurs in childhood
— CD only occurs in patients with chronic diarrhea
— CD can be cured after (a period of) treatment”
See what I mean???
I honestly think that in the years to come, awareness of gluten intolerance –with Celiac being the mother of them all –will be on the rise. But we need to present a united voice in order to be heard.
Just my perspective on it.
One more thing—- because this really touched a nerve with me. 🙁
Some people seem to suggest that having a celiac DX is easily obtained if you just keep looking for the right doctor. This is naive thinking, I’m afraid.
Maybe some people get lucky with their docs. But the truth is: the reason why celiac is the most under-diagnosed disease (taking an average of 12 years in this country to get an accurate diagnosis) is not because people do not try to get help, but because the doctors are more inclined to symptom treat rather than find the cause of the problem. I HAD the best GI doc in the area. He felt it was not celiac and therefore, did not follow through. He was wrong. I saw the best “functional med” doc(s), the best neurologist(s), the best rheumatologist(s) , etc, etc. They all got it wrong.
And sorry, but “alternative med practitioners” are no better at this. They were of no use to me for 2 years either, suggesting I could be “healed” of my ailments if I took enough supplements, did enough acupuncture or had chelation or “bowel cleansing” (I balked at those last two). These therapies are of no use to someone with raging celiac.
It’s a $$$-making proposition to symptom treat, let’s face it.
I’ve said it before and I’ll say it until I have one foot in the grave:
Irish…You ROCK!!
….and right back at ya! 😉
Kiddo,
“Lost causes are the only ones worth fighting for”
Clarence Darrow said it first —but it was quoted in one of my favorite Capra films “Mr. Smith Goes to Washington”
http://www.youtube.com/watch?v=AFQO1V15z-s
We can never shut up, GD. Never.
I have no other choice but to assume your comments were directed straight at me. I didn’t settle. I did keep looking for the RIGHT doctor. That would be Dr. Semrad out of the University of Chicago. And my son? Patient of Dr. Guandalini’s out of the University of Chicago. 1st Celiac center established in the United States. Naive, or more highly educated on the disease than the average Joe?
Sorry, no, they were not directed at you.
But, yes we may know more about celiac (more than the average joe)
now that we have done our homework.
I was talking about those people I see on a daily basis who are told for years they have “IBS” or GERD or some other ailment other than celiac. I was talking about people who listen to their docs because they trust them. And even if they get a second or third or fourth opinion, they are still not helped or diagnosed. I was talking about people who do not have access to the top celiac doctors in the country because they do not have insurance or because they do not even know that celiac could possibly be their problem because doctors have dismissed that over and over or because their symptoms are not “typical”.
.
I was told the first round (13 yrs ago) that I suffered from IBS, and I needed to learn to live with it. That is when the studying began – I knew it wasn’t IBS. My daughter was operated on TWICE in high school for an esophageal stricture. 1st year of College, issues again, doc there wanted to operate on her for an accalasia. Told her absolutely NOT, came back to Chicago area to a better doc who Dx’d her immediately. I was next to be Dx’d (after fighting forever) and then my son – who after my experiences and my daughters, went straight to the University of Chicago. I was done messing around with arrogant doctors who refuse to listen. We defy the odds – children only have a 20% chance of getting it from their parents – yet my only 2 have it. So yes, we are far more educated and understand on a level others cannot comprehend. My biggest beef with the gluten free diet is that it wouldn’t be so bad if people understood CROSS CONTAMINATION. If they get that, we’re all good. Until then, we keep shouting to the Heavens. Someone is bound to hear our voices.
Go get ’em, girl!
Freeky! Hey girl! I have missed you! Hope all’s well!!!
I’m here, dear Irish Heart! The raising of kids and working of job has kept me on the periphery but any Animal House reference will pull me out of the trenches!
Bluto: My advice to you is to just start drinking heavily.
Stratton: Better listen to him, Flouder. He’s in pre-med.
Dude, I’ve been late in catching up on posts, but this one really resonated with me.
A friend sent me this. It’s a few months old, but still…
http://bridgenosis.com/2012/08/how-eliminating-a-gluten-intolerance-with-hypnosis-helped-one-leader-get-promoted/
Go ahead, read it. I’ll wait.
What OMFG-insanity. This is how gluten is trending on Google. Crap like this.
I’ve taken to terming myself celiac (even though I’ve actually got a double allergy) because I have the same reactions and I think more people need to hear it and ask questions about being a celiac vs. following the latest fad diet.
WTF????!!!!!!!!!!!!!!! Its obvious the guy never had a problem with gluten. He was eating fast food which we all know is unhealthy. And combined with high stress, of course you’re going to get sick. I’m guessing that he stopped eating fast food when he went “gluten-free”. No wonder he felt better. This “cure” is on par with the pregnancy cure – someone tried to tell me once that pregnancy was a cure for Celiac.
Seems a bit quackish to me. I agree…there’s no way he had any health issues with gluten. Can’t wait until gluten mania goes far, far away.
I’m in!
I have a sister and neice that eat gf to help with their Lupus. Even though they do not have to be as careful as I do, they understand my DX.
You can count me in. We only have each other in this. As one doctor told me, “We don’t study nitrition. All the information we get about diseases is from the drug companies.” Since we have no drug, there is no information. That is why we need to post, read and help others.
Well, just kiss my ass from now on! Not me! I’m not gonna take this!
I’m in like Flynn.
Lastest triumph? I work for a wonderful man who happend to be a doctor. He also happens to have a celiac relative. A year a go he was ‘poo-poo’ing celiac disease (not directly to me) and taking the common ground held by American trained MDs. There was a little bit of ‘cuckoo’ stigma attached to the diagnosis because the relative is a bit ‘cuckoo’.
This week he told me he was thinking about eating gluten free because he’s had ‘issues’ and they can’t find the cause.
I’m dropping little bites of education onto his plate. Little tiny morsels, because I don’t want to overwhelm him with the realization of how inadequately trained our medical professionals generally are about this diesase.
The realization might be too staggering and I wouldn’t know how to get him out of the dean’s office.
*happens* to be a doctor. Still is and I think one day he’ll be a celiac advocate! I can see it coming!
I’m in!! Let’s fight this good fight and educate the world :).
Celiacs Unite! Power to the peeps! Lol.
An uprising would be fun :D.
OMG – loved watching “Bluto’s Big Speech” again – classic!!
I’m definitely putting my hand in the middle of the proverbial circle with all of you – I’m in! High five to Irish Heart as well.
It was an odyssey to get diagnosed – and just being gluten-free has not been enough to keep my immune system under control. I’ve done my best – but there have been some surprises along the way. When I was diagnosed in ’03, I thought the diet would be “enough” – boy, did I have a lot to learn. Last year, I had so many physical issues crop up, that I’m still recovering…
Big hugs to all of you & stay strong. Sometimes, it feels like two steps forward, and three steps back – but we are making progress.
Oh, and Irish Heart – I just about fell out of my chair when you referred to your experiences with “alternative med practitioners”. I saw three (over the course of 3 years) – and had similar experiences. One actually recommended Hyperbaric Oxygen Chamber Therapy. She pushed me to travel to Cave Creek, AZ – yes, Cave Creek – freaking, AZ.
I’m sure there are many Alt. Med Practitioners that are amazing. And I’m really open to alternative treatments – However, the specialists I dealt with knew absolutely nothing about Celiac…
I’m all for alternative medicine as well but my feeling is the good ones are few and far between.
Oh Stephanie, have I got stories for you! 🙂
After doctors failed to help and they resorted to giving me so many drugs I could have made a fortune selling them online, I went to a few alternative practitioners because I was desperate.
I was taken by the earnest and caring approach of one ND. She did try her hardest to help me—to no avail.
Suggestions I heard from these people were:
Put castor oil packs on my stomach every night, try “ionic cleansing”, biofeedback, colonic cleansing (er, with the pain I was in–you wanna do what to me now???) ; tapping parts of my face and chest to relieve anxiety and insomnia, acupuncture, myofascial release, rolfing (look that one up!) reiki, energy healing, balance my chakras, apply magnets, wear metal bracelets, take stress reduction classes–with yoga. (yoga?–I could not walk straight because of ataxia, or tie my own shoes or sit or stand without searing burning pain) and. Hang crystals in my bedroom.
No mention of wearing tin foil hats on my head.
This slow death I was experiencing was not anything I could not overcome. There is only “DIS-ease” in the body and it can be cured!. It was explained to me that it was partly my fault this happened because:
I was stressed out after my father’s death and I had not processed it enough; I had poor eating and drinking habits and had not taken good care of myself (i.e. I was once overweight), I ate foods that were not farm-raised; ALSO, our well water was not good and probably had arsenic in it and we had mold in our home, (neither of those is true), I had LYME disease (nope),I had heavy metal poisoning (nope again) my hormones and adrenals were “out of whack” because my “spit in a cup” test showed tendrils which meant trouble in river city! and I had a ” systemic yeast overgrowth” (no, I did not) and a leaky gut (well, that part was right, anyway) My white tongue meant disharmony of the spirit and a congested liver.
Oh, I was also post-menopausal (having had a hysterectomy very early) which (mysteriously?) causes the burning tongue, mouth and GI tract I had (not true–because that horrid sensation I had for 3 years is gone off gluten), and I was not eating the right foods for “my blood type”(say waa??!!!)… and my favorite, I was ill with autoimmune problems because I am the youngest child and I was never breast fed (because apparently that last place birth order makes you susceptible to receiving the least amount of effective nurturing and parenting) um, I had wonderful parents; also,
my biggest failing is I am “overly sensitive” and too eager to fix everything to please people (this is not good for my “self-actualization” and causes gut issues I understand), and finally, my fire sign conflicts with my water sign because I was born on the cusp in November. Never did ask what that one had to do with my shitty health, because I left there thinking “there goes another wad of cash on nothing, you big dope.”.
Oy vey, Irish Heart – Geezus, I’m not sure if I should bang my head against a wall – or laugh because I too heard so much of the same ridiculous b.s. Loved the “birth order theory” – good grief, wth?? It’s amazing that you’re still alive. I had one practitioner that was obsessed with the E.F.T., tapping method – um, let’s just say that I wasn’t impressed. One told me that I didn’t have enough spleen chi (which was probably true, but this did nothing to resolve my issues). Had a ton of acupuncture done – and it was great for my frozen shoulder, but again, did nothing to “heal” what was really going on. I’ve had a few “healers” tell me that ALL disease is emotional – and then get into the whole “victim blame” routine. Sigh…
Thanks for sharing your stories though – I know what it’s like to be so desperate for healing, you’ll try (almost) anything…
Looking back, I feel like it would have been more cathartic if I’d just flushed the cash down the toilet. Good times…
For me, much like gambling in Vegas. Might as well just light that $$$ on fire. 🙂
When I hear people say they were “diagnosed” by hair analysis or muscle testing while holding a piece of bread, I have to refrain from saying anything too sarcastic. After all, I tried some “sketchy things” myself.
Here’s the conclusion I have drawn. It’s not about conventional med or alternative med practices, supplements, potions and theories; it’s this:
Heal the gut, heal the body and mind.
(anyone ever watch Heroes? “save the cheerleader, save the world”– same thing.)
23 years, 30+ doctors. It was in my head, probably an ulcer, because I was a student, too fat, stressed, had children, wasn’t really trying to lose weight, might have IBS, am ‘too sensitive’.
A chance remark from a friend with suspected DH led me to look into celiac.
I have 2 kids. I get treated like an overanxious Mummy for daring to ask which blood tests my son had. Still can’t get my daughter tested.
Does the medical profession need educating? YES
Am I in? TRY AND STOP ME
Last night I went to my very first ever Celiac/Gluten-intolerant ‘support group’ and lordy – WHAT A DISAPPOINTMENT!
It’s actually a ‘meet-up to eat up’ group and they meet up at area restaurants. WHAT?? So, I went anyway and knew I wasn’t going to eat.
One guy ordered ‘safe’ mashed potatoes and instead was given french fries that had been fried in the same grease as their breaded products. Since the server was going to just ‘throw them away’, another member of the group ate some fries because ‘they look SO good!’.
Another lady had her salad contaminated by the salad dressing they put in it – even though the server told her it had gluten and she ordered a substitute! At least that one was caught before the salad hit the table – unlike the french fries on the same plate as the rest of the guy’s meal.
And this is a restaurant they believe they have vetted and that they believe ‘gets it’ when it comes to gluten issues.
The final act was the server coming out at the end and asking ‘but you guys can have graham cracker crust, right?’.
Epic fail of epic proportions!
While they ate their suspect food and socialized, the discussions revolved around their excitement that Dunk’n Donuts is doing gluten free and some pizza chain has gluten free now. Basically they want their same crappy food choices – just without gluten.
I left there so disappointed.
Those newly diagnosed have no clue WHAT contains gluten and those with older diagnoses just want to eat the crap food they miss. Hell, even talking about making spaghetti, they all talked about fake pasta choices. When I mentioned preparing a spaghetti squash as a great, natural, pasta alternative I was told “that’s too much work”. Cutting a squash in half and putting it in the oven is TOO MUCH WORK?
I’m newly in this gluten-intolerant world and I’m completely over the gluten-free crap. I don’t want unhealthy alternatives to already unhealthy foods. I don’t want genetically modified soy and corn byproducts in lieu of wheat, rye, barley & oats. It’s trading one gross product for another at this point.
This website is much more a support system than my local group. Thank you for that Gluten Dude and all you commenting people. You don’t know me, but you all have made a helpful difference for me. Thank you all.
Ajdury
That’s a shame. And I hear this “support groups are a joke” frequently from other celiacs. I guess this is an equally disturbing trend: celiacs not taking cross- contamination and healthy eating habits seriously.
So, if the celiacs themselves appear “unaware” of what needs to be done to live a healthy life –with avoiding gluten like poison as the main component-
then how can we expect others to be “aware” and take this disease seriously?
We have more work to do, obviously.
Ajdury – you say you’re new to this world, but it sounds like you’re already miles ahead of other Celiacs in terms of your understanding of what is and isn’t safe, and is and isn’t healthy. It can be difficult when you’re surrounded by other Celiacs that don’t seem to understand or care about the seriousness of the disease and the need to be strict with the diet.Just follow your gut (literally and figuratively!) and do what you know is right.
Hey Everyone, here’s something to celebrate: we only need 3 more signatures for the “Dr. Drew Has No Clue” petition at Change.org
This is so cool – thanks Gluten Dude and thanks to everyone who signed 🙂 If you still want to sign or know anyone else who does, here’s the link:
http://www.change.org/petitions/dr-drew-show-on-headline-news-we-would-like-a-public-apology-and-an-informed-episode-for-the-celiac-disease-community
Hi Gluten Dude,
Is it really terrible that people are googling gluten more than celiac? I think not, for the following reasons:
1) Lots of people have a sensitivy to gluten, not Celiac. And whenever I’m in a restaurant or a grocery store, I like to google, “is [product] gluten-free?” I’m not going to google, “is [product] good for Celiacs?” There are tons of articles, threads, helpful menus etc online that I use and need for a quick reference, and they are all using the key word “gluten.”
2. According to this informative expert on Celiac Disease,
http://celiacdisease.about.com/od/sideeffectsofthediet/a/Five-Gluten-Free-Weight-Loss-Tips.htm
“going gluten-free tends to decrease your cravings and appetite overall.” (btw I was really surprised to see an article that supported and guided gluten-free as a weight-loss method because usually this area makes Celiacs angry from what I’ve seen, and this lovely lady Jane Anderson is a severe Celiac. When I clicked on the article I was expecting a firm “NO YOU CANNOT LOSE WEIGHT GLUTEN-FREE, WHAT IS WRONG WITH YOU” and I was pleasantly surprised to see an alternative viewpoint.)
That all being said, the first thing I noticed when I went off gluten (besides a handful of my icky symptoms going away) was not feeling intense cravings for sugar anymore, which is something I’ve always lived with. I was sad about my new diet, but glad that it felt more manageable now that I wasn’t craving sugar. So my question is, can this diet hurt someone who is not a diagnosed celiac? I would recommend the diet to anyone as a solution if they were complaining to me about constant sugar cravings. (I know how terrible it can be to be a slave to junk food). If there is a way out, why not try it?
3. I know your normal position on famous people (Kim Kardashian, Miley Cyrus, Ryan Seacrest) trying gluten-free diets, and to an extent I do agree with you. This type of thing really does dilute how painful and tough it can be to have a REAL allergy to gluten. While these good-looking healthy guys and gals out there are whining about their weight, we’re actually putting forth effort every day, nay, every minute of every day, to avoid contamination and sickness.
That being said, Miley Cyrus has acknowledged how much better she feels when she avoids gluten:
http://celiacdisease.about.com/b/2012/04/11/miley-cyrus-goes-gluten-free-for-weight-loss-but-does-it-work.htm.
If she feels better, she feels better. If she were being a “fake,” she’d focus on the weight loss only. But maybe she’s not faking it. Maybe she made that tweet about how she had gluten because she cheated and felt awful, and tweeted about it. Something I’m sure every last person with Celiac has done one time or another. I know I’ve at least risked it on things I should have checked.
Maybe there are a lot more people who are sensitive to gluten than we think, whose symptoms aren’t as harsh as others, but there is still something there. Maybe it’s ok for anyone to try the gluten-free diet, just to see if they feel better, and maybe it’s ok to lose some weight in the process. And how are they going to know they have a problem if they don’t test if by going off gluten?
3) As for Ryan Seacrest, well, that was pretty insensitive (about eating the bagel an hour after “running from the gluten man”). I do understand where you’re coming from. But on the other hand, we can’t expect the world to adapt completely to us. We need to adapt too. I say this because I also have been living with Tourette Syndrome, and you can’t survive this condition without a sense of humor. I’ve seen Tourettes referenced in so many comedies, and I assure you, that no one, NO ONE, gets it right. It is really irksome, and it makes Tourettes look like a huge joke.
I’m not saying I might as well give up, or pretend it’s not happening. But if I didn’t have a sense of humor about it, I’d be a very depressed person. Sometimes, the world uses humor to deal with us, and we can do the same if we choose. And I create awareness for Tourette Syndrome in my own way. http://pertobello.com/2012/03/20/how-to-ask-for-money-without-sounding-like-jimmy-whales/
4) If a sincere person is truly interested in learning about gluten and gluten-free diets, they WILL COME ACROSS THE TRUTH. I promise you. There is a lot of fad stuff out there, but there is also a lot of info about how to steer clear of fad stuff.
5) The more gluten-free options, the better, and that is happening because of the popularity. I understand what you’re saying. Companies charge a lot, and it’s still not good for you just because it’s a product labeled gluten-free. It’s not good to rely on this stuff. But a couple weekends ago, all I wanted to do on a Friday night was to watch Star Trek, eat pizza and have champagne, and I was able to order the Dominoes gluten-free pizza I had been meaning to try. And it was really nice to have a “night-off” if you know what I mean. The fact that I could do this, was this thanks to good publicity or bad publicity? Or both?
Maybe it’s not always black and white.
In reply to Cinyin…you say that when you went gf decreased your cravings. It did the total opposite for me. My cravings alternate between sweet and salty. I must have gf chocolate, gf gum or a salty gf snack w me all the time! I NEVER ate candy or salt before being diagnosed with CD and going on a gluten free diet! I am not going to go on and on about how disgustingly skinny I got before I was diagnosed because of the vomiting and the big “D”…but I will say that I am back a a healthy weight now that I have been gluten free for several years. Take this as you choose!
Thanks Else.
Honestly, If I didn’t have excruciating physical pain after ingesting gluten I wonder how diligent I’d be about it myself.
But when the pain has me lying on the couch, crying, and missing work due to the inability to move my limbs? I’d rather eat only bananas for the rest of my life than ever eat gluten again.
I know I don’t search the word ” Celiac” anymore. I do search ” gluten free”. Searching ” Celiac restaurants”. Or ” Celiac San Fransisco” won’t help me find out they have a gf bakery or a PF Chang’s or a health food store whose name I might not recognize when traveling.
I am a Celiac so I must be really trendy right now! I’m sure I’ll go out of style soon.
Hmmm… Have been unsure about whether to weigh in on this charged convo or not, but I think it’s important for everyone to speak up. I am a biopsy diagnosed Celiac, with a Celiac brother & cousin & a paternal grandma who was diagnosed in the 1960’s. Long story short, I’ve grown up around/with CD.
I strongly sympathize with the above frustrated posts – on both sides of the issue. And I fully support a united front against attitudes that minimize the validity of CD. However, how will we get people to listen to us if most of what they hear is a rant about how CD is not a fad & how frustrated we are that GF is so ‘popular’?
Change comes from encouragement, not judgement. What’s that old saying… ‘you catch more flies with honey’?… CD is a very emotional topic for most of us. Its very frustrating to have your pain & suffering minimized by ignorant people. I applaud the passion that drives so many of you to spread awareness & share your stories. But we can’t control the decisions other people make about sticking to a GF diet – Celiac or no.
What we CAN do is calmly, factually & kindly educate others. We can set our personal eating standards & consistently stick to them. We can support & endorse medical practitioners who take the time to learn about CD. We can support better labeling laws. We can educate our families & communities by being an open, reliable, accurate source of info on CD.
Most of all, we can thank the ‘fads’ for their buying power. I remember the GF options my gran had 25 years ago & they were horrific. (ENER-G white rice bread, anyone?) Food fads make corporations spend money on research. They make restauranteurs think about cooking different foods. They make your local grocery store stock alternative brands. We aren’t all the way there yet … there’s a lot of work to do still regarding calorie, fat & fiber content, experimenting with grains other than white rice, educating producers & restaurants about cross contamination, and much more.
But I can tell you one thing: I’d much rather live in a world where I need to educate people about the difference between CD & GF than live in a world where no one has ever heard of either.
Ha. By ‘no one has ever heard of either’ I meant ‘other than sufferers’!! Obviously it would be best to live in a world where it didn’t exist ;).
For the record, I live in “the happiest place”, as deemed by Oprah.
Kinda. Sorta. I live here and I still don’t know who deemed it or about the process the ‘deeming’ occurred. Some guy wrote a book? Oprah loved that book? Our city spent money to adopt it? I dunno.
Here’s what I DO know. Our little slice of heaven has jumped on the “gluten-free” bandwagon like a hobo throwing his knapsack onto a passing train cargo box. With gusto and without reservation.
http://www.undercovercookies.com/
I do not live this gluten free life with gusto and without reservation. No way and no how.
I’m happy that three ladies are starting a local business. I’m happy that they give a rip about their health. I’m not going to ever eat anything that does not clearly state their ingredients. Not ever.
I gotta ask…where is the “happiest place”? Maybe I’ll come for a visit.
it’s pretty awesome here, Dude 🙂
http://travel.usatoday.com/destinations/story/2011/04/San-Luis-Obispo-Its-the-happiest-place-in-the-USA-/45900412/1
Rather ironic to see this right now. The past month or so I’ve really done well with almost no symptoms of accidental “contamination” which is a post-endoscopy first. The efforts to educate some of those I know and love has seemed to be mostly an uphill struggle, however. From a relative who planned a holiday meal around the idea that I couldn’t eat potatoes, to a co-worker who gave me a homemade baked treat for Christmas and laughed when she said I wouldn’t be able to eat it (I believe it was nervous laughter, but nevertheless), to another co-worker who sounded quite offended when I asked if the soup she made for the office lunch had gluten in it (it did – and I had to ask), etc. I could go on, but I won’t. There are others who offset this such as another co-worker who went out of her way to make meat-cheese-veggie roll-ups that I could eat.
One thing that I find quite difficult, as one who also has other dietary issues besides just the gluten, is the number of manufacturers, authors, bloggers, as well as regular folks who seem to think that just eliminating gluten is healthy. Many commercial gluten-free products have sugar as their highest percentage ingredient and/or are high in starches to replace the flours. Simply eliminating gluten is not in and of itself “healthy.” Choosing to eat healthfully, sans gluten, is not easy, but well worth it for me.
We are each responsible for our own health, but we can support, help, and encourage one another along the way. Your input is much needed. March on!
I went to my doctor Friday for a script refill. She saw how exhausted I was…I could barely talk. She wrote me a note for a modified 8 hour day and no more (were forced to work 12-13 hour days on thursday-truck days) I gave the letter to my current manager Brad Anstad at Hobby Lobby in Peoria, AZ. Today he asked me if the letter was effective emmediately…I replied I can’t controll when I run out of energy but there’s no way I will make it 8am to 9pm. So he called me in his office and told me he talked to HR and district manager and they all decided they were putting me on FMLA leave and paying me with my 80 hours ppo and vacation time and not allowed to return till in well. He knows there is no cure celiacs and I reminded him. I was to clock out and leave effective emmediately. I was basically fired for my illness and asking for a modified schedule…he changed a celiac PT coworkes schedule. I’m. Planning on filing a discrimination claim asap.
Any suggestion as to who & what to do or call first?
Vickie N.
So sorry to hear Vickie. My only advice is to find yourself some legal counsel. Please keep us posted.
Both the term gluten free and the term Celiac are moving upward on Google Trend Analytic. I am a researcher and I study the growth, and movement of gluten free and celiac within the community.
(1) It is important to know that Celiac is a term often used in solo and organizations across the globe have been fighting for years as to whether the term disease should be attached.
(2) According to a consortium at Stanford 3 years ago, the term celiac is increasing awareness at the rate of an epidemic, slow and steady. The gluten free trend, if you see the following graph, is increasing awareness of celiac at a faster rate then before the google trending began.
I am an advocate for change and it appears that many of you are like-minded.
I have been working night and day for 5 years now to change the Sacramento and out lying areas into increased gluten awareness and gluten free safety. I sit as a label reading expert for the State of California and I am working with groups of like minded individuals to make changes in food safety and awareness of celiac, gluten intolerance, gluten allergies and gluten sensitivity. Yet we are fighting against big organizations, in particular an organization that controls commerce & an organization that controls the grocery industry.
What I recommend is that we stop looking at who needs to be gluten free and who doesn’t need to be gluten free and we start looking at how we can band together. We are stronger as a group then we are as individuals.
Gluten Dude does a great job advocating for change through social media and I recommend that we all connect together and become social advocates for change. We are our community and it is us who can take action and change the environment we live in.