So as we all know by now, fellow celiac Jennifer Esposito is getting the shaft from CBS.
CBS is telling one side of the story, but reality tells a far different story.
But there is a whole other side to this insidious episode: the ignorance people have about celiac disease.
I’ve said this many times in the past: it is the ONLY disease I know about where those inflicted with the disease need to defend themselves.
If you tell somebody you have cancer, nobody questions its severity.
If you tell somebody you have diabetes, nobody questions the diagnoses.
If you tell somebody you have AIDS, nobody questions the reality of the disease.
But if you tell somebody you have celiac disease, lordy…who knows what kind of response you will get?
And this is why I advocate so hard and why I will continue to do so as long as I’m able.
And it’s why I rail on B-list celebrities embracing the gluten-free diet.
And it’s why I hate the fact that the focus is on “gluten-free” and not on “celiac disease”.
The Huffington Post ran an article about Jennifer’s situation a few days ago.
The article was your typical media fluff piece, but what got me were the comments and the crazy ideas that people have about our disease.
You want ignorance? Take a read…
- I know lots of people with celiac disease and they all work full-time jobs.
- I work with 2 women with Celiac one of them has a child with Celiac and they work full time with no extra benefits affored to them of tv stars.
- It’s an intestinal reaction to gluten. Remove gluten from your diet, no reactions. So debilitating, right?
- Reduced schedule for celiac? Shades of mercury poison from too much sushi for Jeremy Piven.
- I know a number of people who must eat a gluten-free diet and function normally on a day-to-day basis.
- Man, this celiac’s disease is becoming an epidemic…just like lactose intolerance…LOL.
- The only havoc celiac creates is when you’re too lazy to monitor your own food intake. That’s laziness, not a disease. At best, it could be described as a “condition”, but it’s not a disease.
- When the entire problem can be cured by avoiding wheat gluten, it’s no more a disability than lactose intolerance.
- I know a few people with Celiac’s, and they have never claimed it as a disability. They will laugh when they hear this.
- Celiac disease is not a disability. It is a chronic condition managed by medication and diet. (by the way…this comment came from an effing NURSE.)
- Do you even know what Celiac’s is? It’s a gluten allergy. That’s it.
- She’s ignoring medical advice to avoid wheat gluten. My wife made a 10-day turnaround simply by eating gluten-free.
- A gluten-free diet is the cure. Has she tried that?
- Celiac disease is imaginary, and businesses everywhere are growing more and more intolerant of its use by malingerers.
- If an average mid income person like me can manage work and Celiac disease, why can’t she?
- Elisabeth Hasselbeck also has celiac disease but manages to work every day on The View.
- Celiac is extremely manageable once diagnosed.
- Please list one person that has died from Celiac disease!
- If she’s using the gluten-free diet she shouldn’t be collapsing on set.
- There are so many products on the market that are gluten-free, and even restaurants have menus, so I don’t understand what the problem is.
- Celiac disease is easily cured by eating gluten-free foods.
- I’m lactose intolerant; I guess employers should compensate me every time I drink milk or eat ice cream.
- Celiac is an unfortunate situation to be in, but the patient has ALL the control over their health once they have been diagnosed.
- Celiac’s? It’s treated by a gluten free diet. How long was she trying to get out of work? Sounds like BS.
- We’ve been eating bread for many millennia and now we can’t take it anymore?
- She’s “allergic to gluten, the last fad du jour.
- A reduced work schedule because of celiac disease is preposterous.
- Celiac is Gluten Intolerance. Are you kidding me?
- She’s not sick, she has a gluten allergy.
- Celiac is very controllable; people with significantly less resources manage the disease just fine.
- How do you “battle” celiac disease? Don’t you just stop eating wheat?
- She should be able to control this just by eating carefully.
- It all comes down to how you eat and take care of yourself. Mainly how you eat. If this actor needed that much time off – she’s doing it wrong.
- Celiac disease – the new, trendy malady.
- Having a chronic disease is just another excuse for discrimination.
- Ahhhhh Celiacs. The new hipster disease.
- Tell Jenny to lay off the pasta and beer and she should be fine.
- Don’t eat gluten, don’t have symptoms.
- Umm….I know a lot of people with Celiacs disease and they don’t have reduced work schedules.
Ignorance is so ugly…don’t you think?
Look…I’m not asking for everyone out there to UNDERSTAND celiac disease.
Just stop spreading misinformation about it.
And how about a little compassion? It won’t kill ya.
88 thoughts on “39 Examples of Celiac Ignorance”
After #10 I stoppped reading the list – too disheartening to finish it. ** big sigh**
Thanks Gluten Dude for having the guts to complile and post this list. It would be nice if Huffington Post printed it.
I wish they would too. The information in the comments section are ridiculous.
Ya, by number 14 I wasn’t sure I could continue reading. Very depressing 🙁
I was in the same boat…. barely got to #13 – stating that a gluten-free diet is a “cure”… and I wanted to stop, but forced myself to finish reading. It just makes me so angry!! 🙁
Yeah, I just…. I read it all but I kind of want to cry right now. My depression’s been in overload the past few days as I was diagnosed Celiac this past September… It was a giant battle getting there and now it’s a giant battle trying to feel better. I’m really struggling in school and work right now… I face ignorance at school quite often. I had someone come up to me and ask me what I was eating. I said I was trying our college’s new gluten free pizza and she goes, “OH! You’re doing the gluten free thing? I wanted to try that!” I wanted to yell but instead I said it wasn’t a choice, that I have a disease that means I can’t eat it and she shut up pretty quickly. I really wish people would start learning a little more. You don’t have to be experts, but it’d be nice to stop spreading hate.
It’s this ignorance that made me decide to guest post on your blog instead of remain anonymous.
It’s exactly why I wanted to blog, continue to blog and advocate every moment I can.
I am dumbfounded with how people with celiac disease or gluten intolerance as well as food allergies are treated. I am even more dumbfounded when children are bullied with celiac disease and/or food allergies.
Our lives are on the line every moment of the day. We are not healed by a pill.
I am proud of all in the celiac and gluten intolerant community and those with food allergies that advocate and educate. We are fighting the fight and should continue to stand proud of ourselves and our lives.
It is ridiculous. A friend has a son that is so severely allergic to peanuts, he can’t even be near them or peanut butter etc…and all the parents in his class except ONE agreed to not send any peanut products to school for lunches etc…and this one parents made a huge stink about why should her kid not eat peanut butter. I can’t believe how self centered some people can be. If they told me that a child in my daughter’s class was allergic to peanuts, I would find something else for her to eat, it isn’t worth another child becoming ill or worse.
These comments are ridiculous it’s amazing how people can understand a disease they don’t have :O I wish some scientist or doctor would come up with a way to pass CD on it would change a lot of people’s opinions if they had the disease themselves , you can only understand this disease fully if you have it yourself imo .
How about the annoyance of people saying “then what can you eat?” It makes me want to say “non of the sh*t you eat!”, but I refrain from saying that because I like having friends. I also cannot stand that “gluten free” products and the FDA’s definition of what is gluten free seem to only cater to those fad diet people. It makes me mad especially when people say “It is gluten free. Why can’t you eat it?” 20 parts per million is not gluten free for a CD person. Also, corn is a common replacement for “gluten” in “gluten free” products and it reacts the same in me as gluten does from wheat, barley, and rye. I also cannot have vinegars processed from gluten grains or from corn. For some reason, I also cannot have quinoa. It makes sense that corn has gluten because it was domesticated from a grass that is similar to wheat and yet the FDA has not studied corn gluten. Oh and got to love the creative ways they insert small amounts or gluten into products and then people like me having to do extra research to figure out “why I’m having a reaction” such as why I suddenly cannot smell anything, cannot concentrate, etc. The most recent place of gluten discovered by me was my husband’s lip balm and he’s changing to a GF balm (He typically doesn’t wear it but recently started). It’s nice to be able to vent and I am also always fearful to eat at anyone’s house or at restaurants, which frustrates people to no end. So I cook or eat at home before seeing people. Thank you.
How about the surprise “new” magical gluten free items like wheat starch. They can suddenly magically “wash” out enough gluten to make it “gluten free”. BUT WAIT, that same wheat starch makes gluten free items in which it is used rise up like regular wheat flour items. How in the world do they expect us to believe this? It is the GLUTEN that causes that lovely rising of wheat products.
It is all magic. And celiacs don’t have a right to live. We don’t have the right to get medications that won’t destroy our villi. Why are we less than?
I would LOVE to know what “pill” helps cure/treat our disease.
No one is the same. Sassy said it perfect when she said “My Celiac isn’t your Celiac”. Same applies in life. When two people have the same surgery one my recover with no complications while the other has a hard recovery with several complications.
Everyone seems to lack understanding, empathy, compassion, caring and concern. We aren’t asking much really. Like you said no one questions the cancer patient, the diabetic, the list goes on.
#21 “Celiac is easily cured by eating gluten free foods”. Oh, really?Since when was there a break through “cure” for Celiac, because last time I checked there was none and eating Gluten Free doesn’t make this disease go away, we all STILL have it.
Yes this makes me “sigh” also … and likely because a number of these comments were written by people who have Celiac Disease ~ that makes me a touch down at the ignorance and simple lack of compassion or understanding in people. I agree too that the statement “My Celiac is not YOUR Celiac” is such a good one ~ this disease is so wide spread in it’s symptoms, and the way it reacts to each person is as individual as “EACH PERSON” is … that is sometimes a very hard concept for people to accept.
And because it can not be “cured” with medication, a pill or medical procedure AND because it is a disease that centers around something very close to many peoples hearts – FOOD – the social, health and mental effects from having Celiac Disease is so amplified.
It is hard to understand people’s ignorance to anyone who is suffering … whether it be a celebrity, a family member, friend, or a stranger that you read about … it is upsetting that in all things related with “Celiac Disease” or “Gluten Intolerance” it seems to be accepted. All we can do … as advocates for ourselves … is to continue to learn and treat our own bodies with respect, and not feel we have all the answers. And appreciate that there are forums such as “Gluten Dude’s” site and “Jennifer’s Way” that are all about talking and finding answers TOGETHER.
All we can do is simply be respectful of each other … and work towards knowledge of others … one step at a time.
Here, here! Well said!
What an asshole!!!!! How about, “hey Huffington Post moron, stop being a stupid prick…..oh you can’t because it seems to be your disease.”
What also seems to get lost in all of the confusion about celiac disease, is how long we have it without a diagnosis and we end up with a list of OTHER serious illnesses caused by CD, that does not go away, and we may never totally heal.. What is it, close to 11 years on the average? My diagnosis took 30 YEARS.!
mine took 38, and I’m a mess.
Same for me – diagnosed at 44. Remember having terrible stomach aches from 4 on…
You said it perfectly!!! 14 years!!!!!! Insomnia, depression, IBS …. My family thought I was bulimic for years because i could not gain weight!! Oh how fun my teens were!!!!!!!!
That is what most people that were making comments refuse to understand, yes you can stop eating what and gluten by symptoms still remain.
Exactly Julie. Looking back and talking to my mother before she died of cancer, I know I had celiac since infancy. It took 36 years to find the right doctor, at the age of 55. Now I have had every organ and system and tissue in my body damaged by other autoimmune diseases that have a life of their own. I am disabled in so many ways. I could not even think about eating in a restaurant after the first couple of attempts, unless it was a totally gluten-free one, due to the brain damage. Something will always go wrong (Murphy’s law). Another celiac/ataxia patient I know got glutened in a restaurant with a separate gluten-free kitchen, because the server put her order in at the wrong kitchen. I never saw her at a support group meeting again.
Even if I were to recover, when I was last working, I was getting brain damage every time my cubicle mate brewed a cup of instant coffee, which is one of the most cross-reactive substances with gluten, according to Nora Gedgaudas. Dave Asprey says there is a world wide problem of mold in coffee beans, and that mold cross reacts with gluten. My guess is that the moldiest coffee gets made into instant coffee. Information about our disease is coming from the bleeding edge of immunology, just a couple of scientists and doctors. It is a totally new concept for all physicians that there are no barriers in an older celiac, with the average celiac having 32 times the amount of zonulin of an average non-celiac, and that we get leaky gut, leaky brain, leaky lung, leaky skin, and in the case of a pregnant celiac woman, leaky placenta. Nor can any scientist seem to grasp the concept that the largest water droplets in steam are 5 microns in diameter, while the smallest wheat flour fragments are 2 microns, thus I get glutened in any space where pasta is being boiled, baking, toasting or frying is going on. People need to learn that it does not take any more gluten for some if us to get ill than the amount of a virus or bacteria it takes to make some people ill. Our immune system cells go to our thymus to get educated. Most people’s thymus start to wither in their teenage years. Most of us celiacs have the HLA haplotype known as the “Super B8 Ancestral HLA Haplotype”. Our thymus just keeps growing larger our whole life, and our immune systems keep finding other tissues that look like gluten and other invaders. We also have neighboring genes along with the DQ genes that predispose us to more autoimmune diseases than any other haplotype. It only takes an identical sequence of three amino acids to have molecular mimicry to one of a growing known list of sequences in gluten fragments that our immune systems react to. Dr. Tom O’Bryan said in the first lecture of his that I attended that AIDS is the only disease that affects more parts of the body than celiac. In AIDS, you have no immune system to defend yourself, and in celiac disease, your immune system can attack any part of your body. When
I also stopped around comment #10 because I was starting to get upset…
There is SO much bad information on the internet about celiac. Starting out trying to go GF was a nightmare because I kept receiving wrong information such as: barely is OK to eat, but rice isn’t.
I wish there was a way to get rid of the bogus info and correctly educate people on our disease in one fell swoop…
This whole thing is horrendous and disheartening, to say the least. Because of having celiac disease I have done a lot of reading and research on it over the last 8 years….but I felt I HAD to.
I think part of the problem is that even most doctors don’t know what to tell people about it. I was diagnosed via a letter in the mail and sent on my merry way to figure it out for myself what to do. AND, the past 8 years have been a total struggle; not to eat ‘gluten free’ but to figure out why I still feel like crap even though I’m SUPER careful.
People just don’t get it, and what’s worse are those that have celiac disease and are making light of this. I just think there MUST be a lack of knowledge and understanding. I am finding that I have to be completely grain free (among other things) to even walk among the living….and that isn’t what ANY doctor would ever tell you that you should try. I’ve had to go to multiple different practitioners to try to get some help on why I still feel like garbage, but NO ONE has an answer, which is why I can’t believe that people are being so cavalier about this.
EVERYONE is different and some people just don’t do well simply eating gluten free. I am floored by the fact that people forget that it’s an autoimmune disorder and not so black and white that if you just don’t eat gluten, you’ll be fine. Ridiculous!!!
I was given my Celiac disease diagnosis over the phone by the nurse who works for my doctor. When I asked what that means, she told me to eat gluten free. I asked again what that meant and she told me she would put some info in the mail for me. Meanwhile I launched an internet search and got a ton of information. I borrowed some books on the subject, read some medical journals, etc. About a week later in the mail I received the info from the nurse… a printout from wikipedia. I was shocked and disappointed at the same time. No additional support from the doctor’s office has come my way in the months since I was diagnosed. Everything I know I learned on my own through reading and trial and error. It is disheartening to say the least, especially when I feel like poop so often. People just don’t get it. I am often told I should take a “cheat day” from my diet periodically to feel better… um really? I don’t think celiac disease works that way, but thank you for the advice I didn’t ask for, now please go away. I get so frusterated and reading this stuff on the internet just makes me furious. I really appreciate Gluten Dude and others here who stand up and fight for all of us!
I got the exact same reaction after my daughter was diagnosed with Celiac (no thanks to the doctors, I had to ask them to test her for it!). The nurse or doctor NEVER mentioned the name of her disease, but gave me 3 pages of foods that she can/can’t/with caution eat. That’s all.
When I talked to some friends they told me within one sentence “What is CD?” and “You’re overthinking this! You’re blowing things out of proportion, a little playdough can do no harm.”
I am only glad I live in times of www and not 30 years ago where you actually had to RELY on professionals…
We are really fortunate. If we follow a gluten free diet, and watch everything we eat for the rest of our lives, we will live and be happy. However no matter what those jerks eat or don’t eat, they will always be stupid and hostile. I’m glad to be me. Now where is my glass of wine?
I also know that my experience isn’t the different than many others. I am part of a rather large community online and in person that have had similar experiences with physicians, as well as still don’t feel well after years of being ‘gluten free.’ Something is definitely not right in Denmark!!!
Just last week I was speaking with a couple of friends who have another friend with a son in which they both have celiac disease. They were somewhat recently diagnosed and I questioned what they actually know or were told of what to do. They told me she “sometimes” eats gluten free. She has “cheat days” more than once a week and drinks beer ALL the time. WTF???? Who does that?
I feel that she clearly doesn’t get it and, furthermore, what sort of message is she sending her son? Does she allow him “cheat days” too?
ACK. That is scary. She is causing herself further health issues down the road.
I agree!! And what message is that sending to everyone and anyone that doesn’t understand celiac disease? When she tells people that and then they see her eating whatever she wants or she tells people that she has those “cheat days,” what are people going to think? You’re just asking for people to make assumptions about CD and think these type of things we’re all so angry about. It makes light of it and makes people wonder if it’s really necessary to completely eat GF because she still SEEMS fine. I don’t know if she just doesn’t get it or if she just doesn’t care, but it’s not good either way. She may have a long road back to health if she ever actually stops eating gluten. 🙁
THAT is what drives me crazy, it is people like her that don’t take their disease seriously and then other people think “well, my friend has Celiac’s and can eat gluten” etc…THIS is in no way the same as Celiac’s, but I have been a vegetarian for over 20 years and it drives me crazy when someone (like my MIL) calls themselves a vegetarian and then orders the chicken. Stop putting misinformation out there about what Celiac’s is so that people who truly are affected (and not just on a gluten free diet for “health” reasons). Don’t even want to start on people who think it is just an allergy!
I have a neighbor whose friend has celiac disease.
But, and I quote, “she must not have it as bad as you because she cheats all the time.”
New rule. If you have celiac disease and you cheat all the time, STFU.
COULD NOT AGREE MORE, GD!!!!
YES! Or like my MIL who had both the biopsy and blood work come back positive for Celiac’s, and who is now in better health, but thinks the Dr.’s were wrong and she doesn’t really have Celiac’s. GRRRRR.
Haha! Hi 5 to that comment Gluten Dude :).
GREAT new rule…..and if you have celiac and “cheat”—and you get worse later down the road or develop lymphoma—well, you’re an idiot.
This is nothing to screw around with and if you do, well, “ye shall reap what ye sow”.
…I just always wanted to do a “ye shall” quote 🙂
I don’t get the ‘they don’t have it as bad as you’.
Although I agree with Sassy that no two people experience Celiac the same way, you either HAVE it or you don’t. There’s no ‘kinda’ have it or ‘almost’ have it or ‘I had it yesterday but today that cake is too tempting.’
……That’s like “kinda pregnant”….
Can we PLEEEEEEEEEEASE get a T-shirt made with that phrase on it!
Please start a gift shop….I’d go back to wearing them with logo’s just to have people read this one.
have to agree that I am fed up with the phrase, “I eat ____ all the time and I ‘feel fine’ !”
I think they have no idea what “feeling fine” means!
This is one comment from HP that really irritates me, and the same person posted many more posts that were just as bad. I love how it is o.k. to blame the victim. How in the world would this stranger know what was happening in another persons life?
“If this is truly the case, she has a legitimate legal concern she can bring to court.
Until then – ALL we’re hearing is her side of the story.
It’s not CBS’s responsibility to follow her every medical concern. If she wasn’t supposed to be working, SHE is the one with the responsibility to keep herself at home. The way she phrases everything, it’s putting the entirety of the blame on everyone BUT herself. “It was racism.” “They made me work til I passed out” “They fired me because I asked for time off.”
All discussion of the disease aside – who on this thread doesn’t see the larger problem here? Someone who isn’t taking care of HERSELF, and has thus far blamed everything under the sun BUT her own responsibility to be sure SHE is following doctor’s orders.
If I was told to stay home for 24 hours to let an antibiotic set in, and decide to go in to work anyway, and as a consequence I get even worse – that’s NOT my employer’s fault – that’s mine.
It has nothing at all to do with Celiac’s. It could be asthma, parkinson’s, the flu, whatever. She’s not giving a 100% truthful account of what happened.”
I am disturbed by your response to all of this. Aren’t we all different and what works for one may not work for others? We are supposed to try to just live our lives to the best of our abilities, which for her CLEARLY isn’t the same as it must be for you. Unless you’ve walked in her shoes, maybe you could cut her a little slack and realize it’s not that simple. I get it. I know exactly where she’s coming from because I’ve been there and done that. Others don’t get it because we look like we feel okay. I don’t get how anyone can be so judgmental when you don’t know what she feels. Who’s to say she’s not being 100% truthful? You really have no idea what the circumstances were/are from either side, so why are you defending CBS and can’t just have a little sympathy for her?
Correct me if I’m wrong, but I think Julia was quoting a comment that disturbed her.
Thank you GF Dude, that is why I said it was a quote and I put quotations around the quote. I most certainly do not feel this way.
I guess I’m confused then, because I think there is still a quotation mark missing somewhere on the whole bottom part of the post. I missed the whole ‘I’m quoting someone else’ part. I apologize.
Obviously I am upset about this whole thing.
It upsets me too. I started my comment with Here is a quote from HP, and a few more sentences, then I had a quote mark where their quote started and at the end an ending quote” to show what the person posted on HP. I apologize for the confusion. Have a wonderful day.
The quote was from a response on HP post, one that really bothered me, the same person made many of the same type of posts. I would never say something so ignorant.
I know who you’re talking about Julia and she seriously got under my skin…just as I’m sure she was trying to. She was your typical troll.
Thanks GF. I finally gave up responding to her/him. They obviously have the attitude of “I can work through (whatever illness they say they have) so everyone else can too. To me that is just as egregious as if I compared my child with special needs to another child with the same exact diagnoses and tell the parent “Well, my child can walk, what is wrong with YOUR child”. People can only see what is in their own little world.
I hear ya. It is very sad. We’ve got a lot of celiac in the family both diagnosed and undiagnosed. I always try to tell people that it is a form of nutritional starvation that leads to diseases you wouldn’t otherwise get. My aunt was so sick with celiac she couldn’t hardly get out of bed some days. She did get disability after three years dealing with celiac (and the other three autoimmune disorders she now has.) Her disability is only temporary. I think the assumption is that once a celiac goes gluten free problem solved. This might be true for a child in some cases, but I think most don’t understand the PERMANENT damage that is also caused by years of misdiagnosis.
One of the very things I patiently explain to others when people wonder ” why I am not cured” after nearly 2 years GF is
this: there is NO CURE for CD or any autoimmune disease, but there are ways to manage it — the gluten free diet is just one aspect.
To any one of these vile, ignorant, self-righteous people who think they know what they are talking about:
Unless you have dragged yourself around in my goddamn shoes and unless you nearly died from a lifetime of unDXed Celiac, do not tell me that I “should be all better” now that I am gluten free.
I can’t work. I can barely walk a half mile. I just got my ability to drive back. And I have done everything in my power to recover. I am totally GF and have excellent follow up care from my very caring, celiac-savvy doctor. I may have refractory sprue. We don’t know. I’ll find out soon enough when he biopsies me next Spring.
I am not you.
And as Sassy so wisely says “My celiac is not your celiac”.
Long undiagnosed CD, as Jennifer suffered—does not resolve that quickly. She could have pernicious anemia or any number of complications that created that fatigue and collapse. How does anyone know what her life is like? They don’t.
Even more disturbing for me was hearing that these comments are coming FROM FELLOW CELIACS who should know there is no set recovery time.
No empathy for a fellow sufferer? Tsk Tsk
Man, that has to be the most shameful thing of all.
Love what your wrote.
Well said Irish!!!!!! Well Said!
GD, you said, “it is the ONLY disease I know about where those inflicted with the disease need to defend themselves.”
Not to minimize celiac disease at all, but that’s absolutely not true. CD isn’t that unique disease that society doesn’t “get”. People with celiac disease are not the lone sufferers of being misunderstood.
One example is basically every mental illness. I have CD and and eating disorder, and I feel much more bashed on for having an eating disorder than CD. It’s always “Just eat!” “Eat a sandwich!” “You’re just doing this for attention!” It’s not that simple!!! I constantly feel like I have to defend myself for having an eating disorder because it’s seen as a trendy white-teenager disease, when it’s a REAL issue. Same with depression. Many people are told “Just get out of bed!” “Happiness is a choice!” Etc, etc. Another one is skin cancer. The sufferers MUST have brought it upon themselves by tanning too much. Or lung cancer; the sufferers must have brought it upon themselves because they smoke. Liver disease– “Don’t drink so much alcohol!” And the huge issue in our society is obesity! (no pun intended!) A obese person is seen as lazy and lacking in willpower, where it could be a myriad of different things such as genetics, metabolic disorders, emotional/binge eating disorder, medicines can cause uncontrollable weight gain (such as corticosteroid, the treatment for Addison’s Disease), hypothyroidism, age, sleep deprivation, and I’m sure there’s more.
Sorry to totally rant on your blog, but your statement is absolutely false.
Also, I would just like to say, if someone is 100% gluten free and STILL sick, it’s most likely an additional condition, not the celiac disease. So while the 39 comments weren’t exactly tactful, I can see why they would think like that.
On your first point, it’s a well-stated rant and I agree. Frustration makes me speak in absolutes at times.
On your second point, that’s actually not accurate, as many celiacs can attest to.
What’s the actual medical reason that celiacs can be 100% GF and still be sick?
While testimony has it’s place, in a medical situation testimony can be biased because it’s self-reported data, where a person may not know all the factors. (such as unknowingly eating gluten be accident, an unknown medical condition, or other food intolerances, etc.)
Rachel, I am not a doctor so I can’t quote a specific medical explanation as to why a celiac can be 100% gluten free and still sick. Part of what makes things so hard for celiacs is that even doctors don’t know for sure why some celiacs continue to suffer with symptoms long after they are 100% gluten free. Living gluten free is key to helping us MANAGE celiac disease, it is not the magic cure-all. Just as in mental illness where medication is used to help the patient MANAGE their condition –the condition itself is still there and can flare up now and then even though the patient is still taking their medication. So it is with the celiac–the other “additional” conditions we suffer from are caused by the celiac in the first place and may flare up from time to time despite strict adherence to our gluten free diet.
A recent study indicates that non-dietary compliance (most notably, inadvertent gluten ingestion, not intentional) was the major reason for celiacs who still felt unwell.
If you eat out, you risk this every single time, unless you go to a totally dedicated GF restaurant—–as in NO gluten has ever been used on the premises. (there are very few of those)
Other medical reasons include:
small bowel bacterial overgrowth
other food intolerances
other concurrent inflammatory bowel disease
Anyone who thinks they are 100% GF–well, your intentions are good of course, but realistically, this is impossible given the world we live in.
The earth is a shared facility.
All you can do is–do your best and be vigilant.
People with long unDXed CD will have inflammation throughout the body for a very long time. This is often overlooked as a reason for why some still do not feel 100% in 3, 4 or even 5 years.
This is why doctor says view each year after DX as a “healing year”.
that should say “why MY doctor….” sorry for the error. The wind from Sandy is messing with my laptop connection 🙂
and the study is here
and there are others that were done by Dr. Murray
As sickening as it was to read…I just HAD to continue. Oh—My—GOD! Are you SERIOUS Dude? This stuff actually came out of peoples mouths????????? I have Celiac Disease and a HELL of a lot more health issues DUE to what Celiac did to me PRIOR to my diagnosis! This is so disheartening it kind of makes me want to vomit! I
Totally off topic..
Dude, Mrs. Dude, and the Dudettes,
I hope you are all safe and out of harm’s way from the megastorm Sandy. I am always reminded of how tough conditions were during and then weeks after Hurricane Hugo in 1989. Please keep up updated if you can!
Thanks Miss Dee!!
Lots of rain. Lots of wind. Power flickers. But so far…not too bad. We’ll see what the next 24 hours bring us.
Did not know what area you actually live in GD … I add my “please stay safe” to Miss Dee’s above, sounds like this is going to be a doozy of a storm, was just reading about it … thinking about all of you on the Eastern Seaboard …
Please stay safe …
Hugs from Canada
I don’t know about you guys, but I try to hide it if I’m feeling crappy, especially from friends or co-workers… I just don’t want to feel like a burden or nuisance and also sometime I don’t feel like they believe me because my symptoms aren’t “seen”. Perhaps part of the problem where people are saying “I know lots of people that have CD and they’re fine” are misinformed by those of us who don’t want to broadcast that they’re still suffering. I don’t want everyone at work knowing that I’m sneaking off to the bathroom every half an hour or that my brain is in such a fog I can hardly function!
This is so frustrating! Thanks for all you do to educate people about what celiac disease is really about.
#20 There are so many products on the market that are gluten-free, and even restaurants have menus, so I don’t understand what the problem is.
Really?! These people you quoted are ridiculously cruel and these are horrific stereotypes. I’m happy you didn’t link to who they are, I might message all of them with medical facts!!!
This makes me so angry!
“36.Ahhhhh Celiacs. The new hipster disease.”
Really?! Is that what they think!! Yes, I’m pretending to be sick and miserable. I don’t really have all these horrid symptoms, they just in my head. I just want to be trendy … What audacity!!
I’ve only been diagnosed for 2 months now with celiac disease and everyday is a battle. And reading ignorant comments like these only puts you down even more. Sorry for the rant above 🙁 its just really infuriating.
Thanks GD for highlighting the ignorance of people. Big up for the awareness you create around celiac. 🙂
And good luck with hurrican Sandy :).
“I know nothing except the fact of my ignorance. ”
I dont have Celiac disease. I have Crohns disease. So i have somewhat of an idea what most ppl with Celiac go through. I’m also gluten free and dairy free. Anyone who has an autoimmune based disease knows that diet helps BUT its not the only answer. Celiac doesnt disappear when gluten isnt around. My cousin has Celiac and my 3 yr old daughters two little best friends have Celiac. It breaks my heart that ppl are so ignorant, cruel and judgemental. If they even spent a day in the life of someone with Celiac then they would shut their mouths and be supportive. Jennifer has worked hard to get where she is today. That show is NOTHING without her. Its just plain discrimination. Its also illegal.
If it’s so freaking simple, why do I still feel like shite after 9 months of strick GFD! Why are there so many Coeliacs so ill after years of getting off the gluten. HELLO MEDIA it’s an autoimmune disease that effects all of our body. Do ya research!!!!!
“18. Please list one person that has died from Celiac disease!”
I’ll name you one, you moron, MY AUNT. She died at the age of 41 from complications of Celiac Disease (called Sprue back in 1991). She had sinus infections, stomach issues, severe headaches all her life. A cold or flu would knock her down for a month or so. She even ended up having a sinus surgery about a year before she died and just a few months before her diagnosis.
She did everything she was supposed to do, got the flu, ended up in the hospital, fell into a coma and DIED in January of 1991. FROM CELIAC. The doctors said that her body was so ravished from years of illnesses, odd infections, etc., that it just gave out.
Why are people so damned stupid??
It is so easy to judge when you are not in our situation. wow.. “The new hipster disease.?” “gluten allergy”, “lay off the pasta and beer and she should be fine”… wth…..! I vote to teach children at school about celiac on biology classes!
I agree! We just went over the immune system in my Biology class at school and my Professor talked about type 1 Diabetes, RA and a number of other autoimmune diseases. However, celiac was not one of them. With this disease becoming more and more common I really believe it should be in the books too! Maybe one day…
Your an idiot (gluten intolerance) if you would like to become informed and have an open discussion is like that I won’t adress the other problems with almost all your points but you should educate yourself
Nope I’m the idiot reading on phone missed some of the article
I cannot believe how uninformed the people that made them comments must be
Coeliac DISEASE can NEVER be cured, it can be MANAGED by eating a gluten free diet. Not all of the OTHER SYMPTOMS go away strictly from monitoring your food intake. Abdominal pain, discomfort, body shakes, headaches, feeling week/dizzy, diarrhoea..
I’ve been on a strict gluten free diet as a coeliac myself for 2 entire years and you know what? I’m not that much better than I was before.
My stomach is so f’d up my gastroenterologist said it may take years before I start to improve..
FAD – please.
Anyone who doesn’t have coeliac disease and is “gluten free” for other reasons are the ones that act like idiots and make the rest if us look bad!
Even hospital kitchens need educating. Went into the local private hospital for my 12 month gastoscopy after being diagnosed last March 2012 . Couldn’t have the customary white bread sandwich afterwards and the kitchen apparently didn’t have any gluten free bread so they sent me up a ham salad. Never gave it a thought as I woofed it down. Was sick for a full week, I also get morose and weep a lot when I get glutened. The ham was the culprit.
So, don’t eat gluten! Stop pushing all your annoying personal eating requirements on everyone else. Next thing you know, they’re gonna ban wheat from schools!
As a coeliac myself, I never bring it up or make a big deal out of it. GUESSEHO DOES MAE A BIG DEAL? Inconsiderate uneducated idiots on a regular diet like yourself! THEY ARE THE ONES WHO TRY FORCE COELIACS T EAT REGULAR FOOD BECAUSE THEY ARE TOO STUPID TO COMPREHEND.
hey maybe being wheat free gives us clarity because you sound like you live on sugar and you have the mentality to match it.
hmm, that’s funny because i never said anything about forcing anyone to eat anything.
It’s a free country, eat whatever the hell you want, just don’t make everyone else suffer just because you have some condition (it’s not a disability).
Hey look…how cute…a troll…just adorable.
calling me a troll doesn’t invalidate the legitimacy of my response, and of my comment.
Your silence speaks volumes….
Anyhow, thanks for playing.
You’re absolutely right. On behalf of all celiacs I’d like to apologize that our autoimmune disease is an inconvenience for you. Feel better?
Well done Gluten Dude!!
And after nearly two years since you posted this comment, nothing has changed…actually it’s even worse. I really don’t understand how people could be o ignorant about COELIAC DISEASE…yes, that’s a DISEASE even if they can’t understand that. The stupid ones think that’s a fashion matter…poor them!!! I feel sorry for them all!!!
Anyway, we, coeliac people, have to struggle with any kind of people and situations and go on..always.
If coeliac wasn’t a real disease but just a simple condition, I’d have loved to wish them all trying what this “condition” really means..but, I’m not so mean to wish anybody such a permanent disease.
A question to all ignorants in matter: if that’s not a disease, why, 30 years ago, that could only be discovered through biopsy exam? (such a terrible one for a one-year-old baby)…people, please grow mentally up!!!
I hear you. It’s why I will never laugh at the gluten free jokes, unless it’s me making them.
While i am not a person with Coeliac disease, i have been reading up on it a great deal over the past couple of days. So even i, at my exceedingly low level of experience was rolling my eyes at half of these. I was also a chef for many year, so i know a gluten free diet is not as simple as all that, and it is different from being lactose intolerance. If nobody minds i am going to bebunk a few of my ‘favourates’
7. wheat flower is a bulking agent, it is used in many products you may not expect like stock cubes ( which means sauces may be off the list ) and some things like cheap sausages to add ‘bulk’
11. celiac and wheat allergy are actually very different, for a start celiac is a freaking auto immune disease, you may have heard of a few other auto immunes, you know like cancer, aids, hepatitis, diabetes ?
34. yeas because anemia, infertility, cancer, preposterous and major damage to the small intestine are all SO ‘trendy’
i feel sorry for people with coeliac as while i understand it’s serious it has also become ‘trendy’ to cut wheat out the diet as a dietary preference. However people don’t want to call it a dietary preference so they lie and call it coeliac or an allergy, so the honest people with real medical problems are cast under the rug with a sea of difficult idiots.
Boy who cried wolf anyone ?
AIDS is not an autoimmune disease. Multiple sclerosis, gluten ataxia and systemic lupus erythematosis are other typical autoimmune diseases that celiacs get. AIDS is acquired immune deficiency syndrome, in which you have no immune defense against viruses, bacteria, etc. If you have celiac disease, your own immune system can attack any part of your body. When I get glutened, my active celiac disease is as bad as full blown AIDS. Guess what? Every time any human eats gluten in wheat, barley, rye, spelt, kamut, triticale or other related grains, they get leaky gut for 4 or 5 hours. Eventually anyone can succumb and get an autoimmune disease as a result.
Thanks for the list–I felt validated after spending the weekend with my 5 adult siblings for our mother’s 79th birthday. It was decided that we eat at Olive Garden–and I got nervous…breadsticks every where, pasta, etc. To Olive Garden’s credit, they sent the Chef to our table to tell me how they could take care of me and that he would handle my meal personally. I felt better… But, then, my sister started spouting several of these 39 comments to me in front of the whole family to, I imagine, belittle me. “You must have Celiacs so severely. I have friends who have Celiacs, who ended up the hospital, and they have never felt the need to call the chef to the table. Yours must be so severe.” (add sarcastic tone here) I was dumbfounded.
Thankfully the meal was good and I did well the next day. But since I have been in the midst of a non-gluten Celiac flare up–I believe it is likely work-stress related. Even after 8 months I only learned last week that stress can cause a flare up, even on a gluten free diet.
Thanks for your blog. I find it reassuring from time to time…
Who knew people could be hostile? Even in our families.
I agree with you that it’s hard to educate the masses on a global scale and this story can only help those who care.
Most people in the food industry are not so hip on Celiac Disease.
Most families of people with CD are not so compassionate.
Most companies that produce GF products don’t produce a strict enough regimen to create 100% GF that have before made gluten versions of their products. Post cereals is one perfect example.
Most people have no idea what gluten is. It’s not just wheat. It’s a complex idea that some dismiss and rarely get the facts on.
I would like to see more articles about what Monsanto is doing to our food supply and recent link to the prevalence of CD and Round Up (herbicide).
I’ve been gluten-free for 4-5 years and I still get glutenized as I call it. I’ve had relationship after relationship fail because my diet is just that difficult to do when they want or crave gluten. Try going to Starbucks. Sure I can get a few things but what if I want to kiss my girlfriend afterwards?
I’ve been diagnosed with BiPolar and Schizophrenia at about the same time I was diagnosed with Celiac Disease. Medication for all of those mental illnesses hasn’t been something that works for me. And I’m collecting SSI and I have two part-time jobs, live alone and have a newish car.
The disinformation is what I can’t tolerate. This made up disease crap isn’t fair to those like me who were diagnosed for being out of my mind with hallucinations and mood swings.
I’m doing much better. I still work and I function the best I can. I’m also in a relationship with a very beautiful woman who’s into being healthy and wants to learn more about GF Living.
Thank you for compiling this list of disheartening b.s.
After years of working on my gluten intolerance-related malabsorption and thinking I had a pretty good supplementing an diet routine, I went to a new doctor yesterday who pointed out numerous signs that I was still deficient in several things. The fatigue is real (though also probably related to hypermobility as well, for me).
It is a disability and it does need to be taken seriously and apparently there is a lot of discrimination and misinformation still. If people can’t see it, to them, it doesn’t exist or must be super-policed to be taken seriously and given consideration/accommodations.
Thank you again for taking the time to go through the feelings that must have come up from posting these turd-gems of ignorance. And I hope that people who don’t know anything about Celiac who repeat these sorts of things, actually read this article and change their minds and understandings!