To all of you crappy media outlets out there, here’s a tip for you. If you can’t even pronounce the word “celiac” correctly, you aren’t remotely qualified to talk about our disease.
So please stop. Effective immediately.
You have turned gluten-free and celiac disease into an utter joke. I see it in the news every day. And I see it in my Twitter feed. Where gluten-free was once thought of as a medical necessity, it has morphed into a laughingstock because of your sheer ineptitude and callousness.
The latest media fail comes from the trolls at The Street. The Street is an extremely popular financial media company founded by the clown Jim Cramer. If you don’t know who Jim Cramer is, just watch this epic video of Jon Stewart taking him to town. You’ll be smiling ear to ear.
Even though The Street’s focus is Wall Street, they thought it would be a good idea to do a video segment on the “gluten free trend”. And they sent in Debra Borchardt, a Wall Street fixture who spent 15 years at Bear Stearns. Naturally, that makes her the perfect candidate to talk about celiac disease.
Gee..what could possibly go wrong?
Here’s the Gluten Dude breakdown of the above video.
00:11: Not again?!?! She pronounces the word “selliac”. Brilliant. So 13 seconds in, you’ve lost all credibility and are officially ripe for the pickings. Really folks…it’s not that hard of a word to pronounce. Niche, kibosh, floccinaucinihilipilification? Sure, those words could trip you up a bit. Celiac? Pretty straightforward. Unless, of course, you’re a lazy reporter (see Savannah Guthrie).
00:14: She says those with celiac disease “want” a gluten free diet. Ummm…no. We NEED a gluten free diet. Am I being picky here? You bet. Does the segment warrant it? You be the judge.
00:26: They say it’s not just those with celiac disease that eat gluten free, but “people want generally healthier diets and they see gluten free as an example of how to take advantage of that.”
Why is a gluten-free diet healthier for people? I’m sure they will follow up on this. I mean, you can’t just say going gluten free is healthier and not follow it up with facts to back it up.
Waiting…
Ok. I guess you can. Moving on.
00:35: This is classic. They are talking about how celiac disease is a healthier lifestyle while the camera pans across a shelf full of donuts.
00:42: The gluten free market is now a $1.6 billion dollar market. That is so comically sad.
01:00: Now she mispronounces Anheuser-Busch. You simply can’t make this stuff up. It’s almost like a bad SNL skit.
01:30: To prove how a “healthy” gluten free diet tastes, they sample…you guessed it…donuts and muffins.
That’s it…I can’t discuss it anymore. This is amateur hour at its finest.
But the thing is…it’s not funny. It’s lazy and irresponsible. Of course, this is pretty much exactly what I expect out of the media today.
So to The Street and all of the other media outlets who are treating gluten-free like a fad…a trend…a joke, here’s my message to you:
Don’t forget not everyone can get to a Whole Foods so that is why Babycakes is here to save the deprived celiacs in NYC! What a joke!
Geez, straight out of SNL. Wish you had taped yourself doing the sign language song.
BTW, I’ve been to BabyCakes NYC and believe me, their donuts are awesome. Especially if you have sell-eeack. =)
Keep up the good work, GD.
I’ve heard good things about BabyCakes. It’s a shame the video was filmed there.
Babycakes is awesome. One of my favorite memories of a trip to NYC was watching an older man feeding a toddler celiac a gluten-free ice cream sandwich from Babycakes and saying, “You can eat that. You like that?” The toddler was ecstatic.
(And the ice cream sandwiches are awesome.)
Ive never understood why a GF processed baked product with 50 million odd flours and chemicals is good for us just bc its gluten free. Its still disgusting. There is nothing healthy about all these replacement products. A donut is a donut – whether madefrom wheat flour or tapioca starch. JMHO
Amen Kimberly! Well said.
It’s not. But the media companies and food manufacturers are winning the public conception battle. I hate them.
Dont you get it? The reason for this is $$$$$$. Why else would “The Street” get on the GF train. Read CNBC.com “GlutenFree Pays”, nite that “Smart Balance” has purchased “Glutino”and Proctor and Gamble is now in the market…..read my response on facebook.
Dude, that FU video filled me with such joy, you can’t even imagine. 🙂
I LOVE that video!
Yeah, wearing the readers this morning so I.misspelled my name in the above post. Now, here is where this gets scary. Formerly dedicated GF facilities being purchased by publicly traffic companies changes the playing field. The loyalty of the company now.will reside with the stockholder. Not the persons dependent upon.a purely GF product. This is just another reason.that labeling laws MUST be strenghtened and clarified! I don’t want my health based on Hollywood Posers, “Wheat Belly” money grubbers nor wall street speculators!
“This is just another reason that labeling laws MUST be strengthened and clarified! I don’t want my health based on Hollywood Posers, “Wheat Belly” money grubbers nor wall street speculators!”
Amen to that!
I’ll add another AMEN to that!
Cracked phone screen + NO readers =gobbledegook!
Oh my word…I am literally speechless! That is horrible and exactly the OPPOSITE of what we should be telling people! The only truthful thing she said was that it was a big business! Saying it’s an automatically “healthier” way to eat is BS…and how many times did they mention “packaged” foods! Ugh I get so angry about things like this! The media makes it such a joke. Thanks for ranting for all of us Gluten Dude! 🙂
Thank YOU for joining in. The more awareness we create, the better we can get our message across.
I love how everyone openly admits they are using our misfortune as their meal ticket.This makes me so mad because I have to eat so minimally to be able to afford food for myself and my kids….and here they brag about cashing in on it.
Education about our disease is a good thing, but makinh us look like flakey people just going through a wacky fad diet
That’s the problem Amber. Hardly anybody out there is trying to educate. Many are simply trying to cash in while the trend remains hot.
OMG, I just blogged about this too. A friend of mine had seen the segment and told me about it. I kind of wish she hadn’t. 🙁
It was hard to watch such ignorance and foolishness. It makes me sad and disheartened. I just wish that there were media-types with power out there that actually reported correct and intelligent information. It just makes me sick!
Thanks for taking it on too Rhiannon. Make sure you let The Street know about it.
I did actually send them the link to my blog post and some choice words. LOL
You mean it’s NOT an SNL skit??? huh.
(1) I have great respect for people who work hard running a gluten free bakery. One of my dearest friends owns one and she works her tail off making fresh homemade products for people like us. She’s an angel on earth.
(2). I love that CeLo song so much, I have kept it bookmarked for many months so I can play it anytime I am irritated by something I read online. As someone who has learned ASL, I can tell you, arguing with or telling someone off in sign language takes a lot more energy and is abundantly more expressive and effective. Very cool video. Thanks for posting that! I’m smiling here and I haven’t found anything to smile about in 2 days.
(3) …you knew this was coming, right?
However, this absurd piece on “sell-eac allergies” and why we are lucky because there’s a glut of fattening crap out there to make
us deliriously “happy to be sell-eacs” ….well, all I can say is:
(that was me doing what the girl did in the video.)
1) Totally. This was not a knock on the bakery at all. Just want to make sure that’s clear.
2) Laughter is always the best medicine.
3) I’m singin’ it too 🙂
I knew you were not knocking the bakery, GD. 🙂
And I was also making it clear that I am not knocking the bakery.
Bakeries are a very good thing.
It’s the perpetuation of misconceptions about the disease and the
” GF diet” that I find offensive.
And now I cannot get that song outta my head. 🙂
Yeah on the GF bakery, though, that’s awesome. Are you telling me, as a celiac, you wouldn’t be healthier eating a GF doughnut than a regular wheat-based doughnut? Yes, you would. Because your body cannot process wheat. Your villi thank you for keeping gluten out of your diet. You are then ‘healthier’. Same for all those that are sensitive to gluten and don’t realize it.
The point that GD is making (if I understand correctly) is that the gluten-free diet is being portrayed as the diet of choice for everyone, which is simply not the case.
If you have coeliac disease (we pronounce it the same way over here, even though we spell it differently) a strict gluten-free diet is the only proven treatment. The same applies to those with NCGI.
However, for everyone else (the ones who have no medical reason to avoid these grains) these cereals provide relatively good nutrition relatively inexpensively.
If you eat a varied diet, with an emphasis towards healthy ingredients, and not too many highly processed “treat” foods, you are likely to be healthier than if you rely too heavily on convenience foods. This holds true regardless of whether you are gluten-free.
Specialist manufacturers are charging a lot of money for foods which are safe for us to eat, at the same time mainstream manufacturers are adding gluten to their products (sometimes deliberately, sometimes through cross-contamination) making a “normal” diet expensive to follow if you need to avoid gluten.
I know it’s in the nature of “treats” and therefore to be eaten in small quantities, but it’s noticeable that since Kraft took over Cadbury’s, fewer of their products are free of cross-contamination. But I mention it as an example of how a mainstream manufacturer is cutting their standards, forcing those with allergies/intolerances/auto-immune conditions towards specialist manufacturers.
“since Kraft took over Cadbury’s, fewer of their products are free of cross-contamination. But I mention it as an example of how a mainstream manufacturer is cutting their standards, forcing those with allergies/intolerances/auto-immune conditions towards specialist manufacturers.”
wow, that’s surprising (and disappointing to hear) : (
because Kraft is one of the better companies that adheres to labeling laws with clear labeling of ingredients. It’s one of the few I trust. How do you know they are cced_-did they release a statement about their procedures in the UK or something?
Hi Irish
In the UK there are strict labelling laws, and gluten must be labelled if present, as it is one of 14 major allergens (I know… but at least it’s labelled!).
“Gluten Free” means that the end product has been made using ingredients which should be gluten-free, and has been tested to ensure that the gluten is below 20ppm. This would include things made with codex wheat starch; foods that would often be cross-contaminated (eg buckwheat, oats) and all of the expensive substitute foods.
“No Gluten Containing Ingredients” (my personal favourite) means that the raw ingredients are naturally gluten-free, and care is taken during manufacture to ensure the food remains gluten-free. The end result is not tested, which keeps the price within the “normal” range; theoretically it should be at least as safe as cooking at home. I don’t know of anyone who has become ill by eating products labelled like this, but some CD patients are nery because the products aren’t tested.
“May Contain Wheat (or Gluten or Cereals)” means the ingredients do not contain gluten (so don’t have to be labelled) but there are no effective measures in place to prevent cross contamination.
Cadbury’s products are correctly labelled, as they have been for at least as long as I have been diagnosed, but more and more have the “may contain” warning, and so have to be avoided by those of us with CD (and nut allergy sufferers, and the plain chocolate must be avoided by milk allergy sufferers).
We can stay safe, but only by avoiding many of the things we used to enjoy. Luckily, Thorntons chocolates are even nicer, and have “no gluten-containing ingredients”. 🙂
Thanks for the explanation, Kate! 🙂
IN MORE POSITIVE NEWS! 🙂 Here is a media release we can LIKE!
Celiac foundation, Next Iron Chef contestant plans gluten-free session at NRA Show
Tags: Food Allergies / Gluten-free, National Restaurant Association, Staffing & Training
April 18, 2013
The National Foundation for Celiac Awareness (NFCA) will address the importance of offering gluten-free options in restaurants and tackle the “Top 8 Myths about Gluten-Free Menus” during an informational session at the 2013 National Restaurant Association Show on May 21.
Joining the presentation will be Chef Jehangir Mehta, a two-time contestant on Food Network’s “The Next Iron Chef” and one of NFCA’s chef ambassadors. Chef Mehta is the chef/owner of three restaurants: Graffiti Food & Wine Bar, Mehtaphor and Graffiti Me – all based in New York City.
“In the rush to introduce gluten-free options, many restaurants have neglected the due diligence and staff training that are so essential in protecting the health of celiac and gluten sensitive consumers. Our community is getting sick, and it all could be avoided with a few changes in protocols,” says Beckee Moreland, director of gluten-free industry initiatives at NFCA, who will be leading the presentation with Chef Mehta.”
Sounds like a great idea to me!!
The “Top 8 Myths about Gluten-Free Menus” will take place May 21 at McCormick Place in Chicago. NRA Show attendees can also visit NFCA at Booth #9336.
I am having a fuck you kind of day. I don’t really give two shits today what moronic thing the media is up to because they are always up to moronic crap. If I had to have an opinion though? It would be great if they would all shut the fuck up unless they A: have celiac and B: know what the fuck they are talking about. That would be fanfuckingtabulous.
At least the video made me smile for a few minutes. Tomorrow will be better.
You know, Addy, I really wish you would learn to speak up and come out of your shell, sweets. I’ve had a string of F U days this week, so I hear ya xx.
🙂
That is just a hoot and a half!!! Love it!
It’s not silly-yak or sell-e-ack….it’s see-lee-ack!
Mostly, I don’t have any use for any of this stuff anymore. Even my niece (sister-in-law’s daughter) has decided to play the G-free game. Does she have celiac? Hell no! It’s the ‘cool’ way to eat. Says she ‘bloats’ Ha! She never did before! She’s never even been tested… says she knows she doesn’t have celiac..
I darn near died of malnutrition from my CD and my husband’s family understands that very well. It doesn’t stop them from playing their games. Even my brother asks my why do I care how people eat. To me it’s like telling a cancer patient you have the same thing when you don’t! It’s just plain wrong.
I’m sick of it all! If I could resign from club celiac, I definitely would! This disease that I have suffered so greatly from has become a joke 🙁
I honestly don’t know what to think or believe anymore. Mostly, I keep my mouth shut…but it hurts me.
I honestly think a lot of the self diagnosed have misdiagnosed themselves. If there really are 1 in 133 celiacs out there, where are they? When my gastroenterologist diagnosed me he told me in all of his career, I was only the 4th real and true case he had ever seen…and one died. This was back in 1987/88. I quit functioning in December and it took until the first week of January for them to find it. My point is, it didn’t take very long to come up with the answer….even when doctors were supposedly uneducated about the disease.
I expect you’ll all be mad at me now, but I don’t care anymore! The forums are dead and eventually people will find a new ‘cool’ diet to follow. I will be gluten free until I die 🙁
Why should anyone get mad at you, Galway? 🙂
I’m not mad, and you have a right to your opinion, however,
I take issue with some things you have said and I hope you will hear me out, please.
I do agree that you may be right about some people who diagnose themselves. They could very well have something else going on that mimics celiac (Crohn’s or other food intolerances or IgE allergies, for example) and if they do not investigate all possibilities, they may be
sorry down the road.
I am very glad you were diagnosed rather quickly, but sadly, this is not the case for so many people. It took me 3 years and it was not for lack of trying on my part to have someone see what it was. I’m not going to belabor all that here, but I do get a little miffed when someone suggests it’s” simple” to diagnose.
I see this time and time again. People left unDXed for yeas, because many doctors still view CD as being “a rare childhood disease” and not that prevalent. Why has the number of diagnosed celiacs in their 40s, 50s, 60s and 70s risen so drastically since 2010?
http://www.livingwithout.com/issues/4_17/senior_celiacs-2720-1.html
BECAUSE DOCTORS ARE FINALLY LISTENING TO THEIR PATIENTS.These are people who have been symptom-treated all their lives and now have a plethora of AI diseases and complications.
And, this does not account for asymptomatic celiacs.
“For many celiacs, symptoms don’t kick in until there already is significant intestinal damage. But others may never develop symptoms. In fact, up to two-thirds of celiacs may be asymptomatic, according to Stefano Guandalini, MD, medical director of The University of Chicago Celiac Disease Center. People with symptomatic celiac disease represent just “the tip of the celiac iceberg,” he says.
And some people will have negative celiac blood tests for a variety of reasons and this leads to a false conclusion. I do not give a flying fig that the celiac centers say these tests are 99% accurate.
What about those of us in the 1% ?? 🙁
Maybe your doctor has only seen 4 true cases of CD in his career, but in the last 2 years, my GI doc has seen a dozen. (5 were people I sent to him!! These are people who were blown off by docs who felt that celiac was “rare”)
I think there are more than 1 in 133, but sadly, we may never know the true number because the people with CD are not being diagnosed PROPERLY.
Do I think it could also be part of the “gluten free craze” backlash? Oh, you betcha! People tell me often that they go to their docs with real symptoms indicative of celiac (malabsorption, weight loss, chronic D, hair loss, migraines, joint pain) and the docs laugh them off with “oh that’s just a craze, You don’t have that!”.
So, I agree with you that this disease is not taken seriously enough, but it’s not just because of the media or the fad dieters, but quite possibly it’s because the medical community just can’t seem to see this thing for what it is. When I learned that a GI doctor, speaking to a group of celiacs recently at a support meeting told them “it’s okay to cheat,” my freakin head almost exploded.
I mean, for the love of mike, a kiddo’s science project proved the “1 in 133” is wrong..
http://www.ktuu.com/health/2yourhealth/ktuu-science-fair-project-proves-celiac-more-prevalent-in-society–20130410,0,4081284.story
Okay, I’m done, I promise.
I think I’m still pissed off ( and revved up) about Boston and have waaay too much energy.
A very good friend of mine has been having GI issues for a LONG time. She spoke to me about the possibility of it being CD. The oddest part is that for years she and her cousin and uncle have known they have this condition called Eosinophilic Esophagitis, which is upon MY research, almost always from a food allergy. Basically it causes all of them constriction of their esophagus and they have to go in and get it, literally, stretched every few years. At any rate, if they doctors KNOW that’s what they have, wouldn’t you think they’d do food allergy testing or SOMETHING? Nope! So both my friend and her cousin have been doctoring about this GI issues and guess what, neither one of their doctors wants to do CD bloodwork because two different doctors told them that it’s only 50% accurate. 50%? Really? I can’t believe it’s THAT low. So now neither of them have been tested and still just keep suffering. 🙁
No, It’s not that low. I agree with you. That’s absurd.
Tell them to do it, please!
I have a good friend with EE, too, so I read about it myself
and found the incidence of EE and associated celiac is high
enough for someone to be tested.
this study concludes:
” The researchers advise doctors to consider the possibility of eosinophilic esophagitis for celiac disease patients who suffer ongoing esophageal problems.”
http://www.ncbi.nlm.nih.gov/pubmed/21778897
http://www.ncbi.nlm.nih.gov/pubmed/19841598
What a retard?! So if you have celiac disease and “choose” to go gluten free you should buy those products. What about all the other ingredients that go in there?!
And yes because we have “selliac” we just pig out on doughnuts and muffins all day. It’s good that these products are available but they should be eaten in moderation. And it’s the hipsters who choose to go on a gluten free diet that contribute to the $1.6 billion dollar market.
It’s so frustrating when people make light of something that’s serious and they think that just eating gluten free is the solution to everything. Although, the video definitely made me feel better. It’s awesome :).
75% of media is useless. 75% of people are pretty much out to lunch. Just wait until Brenty gets rolling this year. We be rolling right over these people and their stories. Can’t wait! Brent media blitz will commence later this year. You all know who my checklist involves. Working on some mickey mouse computer at the hospital. Brent at the hospital, what a surprise! Carry On Hoodlums! This train doesn’t make stops.
{IrishHeart on April 19, 2013 at 8:54 am said:
Reply ↓
Why should anyone get mad at you, Galway? 🙂
I’m not mad, and you have a right to your opinion}
I’ve never had a right to an opinion on any of the forums…I just get banned or shunned.
I don’t agree with cashing in on celiac disease. Selling products such as books, inaccurate advice, bogus online tests, T shirts bracelets and other bullsh*t angers me!
I do not like Rodney Ford…Peter Osborne…Ron Hoggan…Stephen Wangen…Vikki Petersen…Kenneth Fine…etc
If you believe you may have CD, go see a real doctor. Not a naturopath or integrative *doctor* or any other online quack!
For these reasons, the majority of the gluten free community doesn’t much like me.
well, I find you refreshingly honest. 🙂
If the medical community would be more proactive about diagnosing celiac, there wouldn’t be the need for the “plethora of pseudo-docs” at all. Hey, I try to tell people all the time those tests for “gluten an other food intolerances” and “cross reactivity” sold over the internet are not valid or reliable, and I am often met with the same anger.
All we can do is educate and hope that people’s common sense kicks in.
With the exception of Steven Wangen, who at least has a reasonable, educated and sane approach to gluten intolerance in all its forms,
I have to agree with you about some of those “so called experts”.
I do not know when chiropractors became “celiac and gluten experts”. (and my own chiro cringes when he hears about chiros practicing medicine and diagnosing people with “leaky guts” and selling potions and supplements to cure all that ails us.)
The thing is, people have to decide for themselves what sounds like the truth and what sounds like quackery. I fell for some it when I was very ill, desperate and naive and now, I do my best to open people’s eyes. What they do with the info is up to them.
I have to respectfully disagree with previous statements regarding “alternative” practitioners. There are some great ones out there that are certified to do much more than a typical medical doctor can or would. They will typically spend more time with you, getting to know your issues and get to the bottom of the issues, instead of just giving you a Band-Aid to ‘fix’ what ails you. I’m not saying that they’re all experts, as they may claim to be, but I do think that there is some great information out there. People have to decide for themselves what they deem is “good” information or “correct” information in regard to their own health. You have to be able to make an informed decision on what’s right for you because no one fits in this perfect little box like typical western medicine wants to believe we do. It’s just not that black and white.
I’m quite sure you don’t shun real doctors when you actually have a serious medical problem. ‘Alternative’ doctors cannot fix much of anything. They can’t even remove you appendix let alone save you from a heart attack! Nope….about all they’re good for is to tell you what you want to hear…sell you some vitamins or the latest detox junk (boy that’s a ripoff because your liver does cleanse your body 24/7) and of course charge you money.
This is my opinion and I don’t care if you disagree 😉
For starters, I never did say that a typical MD wasn’t good for anything. We all know there are circumstances in which you have no choice but to see one. After all, how would I have gotten a Celiac Disease diagnosis without one?
At any rate, you are clearly mistaken about what alternative practitioners do. Just because you have a bad experience with someone(s) doesn’t mean they’re all bad. If you went to a dentist and had a bad experience would you never go to the dentist again? I think I know the answer to that.
There will always be “bad” practitioners out there that are just looking to make money, but it’s the same with MD’s as well. Do you honestly think that most MD’s care about their patients or more about lining their pockets? The whole reason that there are alternative care people out there is it’s their attempt to heal the body and not just mask the symptoms. Are there kooks and quacks? Of course! Do they sell snake oil remedies? Yep. But there are still a lot of folks that are looking to give people real answers to their problems!
You can certainly believe what you want and I’ll believe what I want. I’ll keep seeking my help from people that actually WANT to help me and you keep getting more pills to fix whatever ails you. 😉
As Rhiannnon said…it’s not so black and white. There are good and bad in EVERY profession. It just a matter of finding the good ones.
Rhiannon…What makes you think I’m on pills? I was on massive amounts of prescription vitamins for a few years…but I needed them. B12 shots…I still need those from time to time…I stagger when I walk..lol Sometimes I fall.
I do take blood pressure meds. My bp is too high to let it go. I have cysts on my kidneys and liver. That’s probably what’s wrong with my bp.
In my state, naturopaths are not licensed to practice medicine. To me, that tells me something.
Yes, there are good and bad doctors. Definately stay away from the bad ones. You will know if you are having a good relationship with your dr or not.
My son has a posterior fossa subarachnoid cyst. He’s had 3 brain surgeries for this. I blame myself every day for his condition. It is more or less a neurotube defect. I was so low on folic acid…That was one of the prescription meds I took. 1 milligram 3 times a day! Over the counter stuff is measured in micrograms.
Irish…I don’t think it was luck. I would have died if they hadn’t done something for me. I had reached the point I could no longer eat. I had not eaten anything for a solid month when they did my biopsy. My GI took one look at me shaking and crying in my pediactric pjs and I believe celiac was the only thing he considered. He started asking me what my heritage was.I thought it was strange at the time. I had no idea why that would matter. I’m German/swiss..Irish and English.
I’m very small…4’10.5″ tall. I wear kids shoes 2.5..lol I keep threatening to buy the kind of shoes that light up when I walk. My mom had died from complications from type 1 diabetes 3 years before I was diagnosed.
I lost a baby boy do to placenta failure…
I still don’t think a naturopath is worth much except to counsel people on a healthy lifestyle. I don’t think they can even treat a simple case of strep throat…let alone prescribe the insulin my mom ‘s pancreas no longer made.
If you like working with them, it doesn’t affect me one way or the other.
Ok…back to all the lousy information that is in the media. People are being seriously misinformed. There’s no doubt in my mind about that. Doctors are egotistical creaturers. Just about the worst thing you can do for youself is go into their office and start telling them how to do their jobs. It makes them kinda mad and resistant to makes the tests you want done. Pretty much, you have to find the one that works best with you! All this celiac awareness is making them defensive. I honestly think it’s hurting the celiac cause rather than helping…
galway, I do hope you did not misinterpret me on that you got “lucky” statement. I put it in italics because I was being facetious. For heaven’s sake, any doctor who cannot recognize malabsorption when he sees it has no business being a doctor. If I saw you at 78 lbs, I’d know that’s what you had going on.
The day I saw my gp for my illness, he spent over an hour taking care of me. He had an office full of patients waiting, but he knew I really needed help. He got me admitted to the hospital where they started working to help me….He brought in the GI that diagnosed me….the internist that set up my treatment. I was treated so well by this kind and caring doctor. He was only a phone call away all through the early days of my recovery. He was such a good man. I was obviously so very ill. I was hospitalized for 2 weeks…My celiac is the classic form. I weighed 78 lbs…my total cholesterol was 96…The corners of my mouth were cracked open and bleeding off an on..still have slight scars from that. I was deficient in vitamins A,D,E,B12, folic acid…niacin…thiamine…iron…potassium…magnesium…and phosphorus. I was too sick to get up and walk across the room at that point.
You are fortunate, galway,
I was also obviously very ill, and my GP kept scratching his head.
Later, I learned he has 3 kids with celiac, yet he “did not know how it manifests in adults” . That’s absurd, don’t you think?????
He had been seeing me for 12 years, symptom-treating me for various problems(B-12 def, folate def., joint pain, hair loss, nerve pain, insomnia, etc.) and sending me to specialists (GIs, neuros, rhuemies,) and none of them saw it either. When I started to drop weight like mad, nearly 90 lbs. he congratulated me on the weight loss. huh???I was dragging myself around at this point.
So, you got” lucky” the doc was wise enough to do something for you, because at 78 lbs, well, sure, he had to take you seriously! But not everyone presents that way. And your understandable respect for the AMA is genuine.
But some of us do not share it.
And I saw a functional med guy and I saw a Naturopath when no one could help me. They were equally useless to me.
Until I met the GI doctor who is taking care of me now, I can honestly say the medical profession screwed up my diagnosis for over 25 years. I had to be deathly ill for someone to see it for what it was–and that was only after I TOLD him what it was. My GI guy now says it’s a disgrace because I might as well have had “celiac” stamped on my forehead and I might have died had I not been so persistent.
Let’s face it:
There are good docs, bad docs, but I assure you, I meet more people who have had to wait an average of 10-12 years for a diagnosis, amassing major health complications as a result (and this is well documented in celiac research, I am not making this up) –and there is no excuse for that at all.
Celiac awareness needs to start in the medical community.
More than 20 years for me! I went to yet another new doctor who said I am going to test you for Celiac disease before we begin more intrustive tests. I don’t have high hopes though because this test always comes back negative but I still run it when I see symptoms like yours. My tests came back off the charts and after being a part of this community I know how lucky I am that she actually runs the test for her patients. I didn’t even know what is was and I was 44.
Another day healing…
yes,dear Camille… every day is a healing day! xx
side bar—I’ve been spending the last few days hurling things into a dumpster (we are selling our home soon and moving ) and I have to report, there is no way in hell I could have done this last year!!. I could barely walk or tie my own shoes let alone lift my arms over my head, yet I work out a gym now, lifting weights and pounding out miles on a treadmill . 🙂
Sorry, GD this discussion has gone off topic a bit, but suffice to say,
“celliac” 🙂
can destroy us or we can manage it and get on with living.
Have a great day, everyone!!
Big time CONGRATULATIONS Irish!!! I still remember the days when I could not lift my arms above my head to wash my hair in the shower because I was so tired.
Hope is a wonderful thing and getting the diagnosis is such a blessing. It may not be the “be-all and end-all” but at least it is a place to start.
You have a good day too and isn’t throwing out things you don’t need any more freeing? 🙂
After you donate things to charity, give away things to friends/family, and then dump the rest of the things you have not used in years……well, you be surprised to discover how many things you really do not need at all !
It’s a cleansing of the most wonderful kind. LOL
🙂
“Celiac awareness needs to start in the medical community.”
Amen to that!
Sometimes life just seems like a series of risk management decisions. And that was before Celiac…
Like button needed here!! 🙂
OH~~MY~~GOD!! This is one of the very few posts that I missed Dude! Thank you soooo much for posting the F*%K Y*U song!!!! I am ROFLMFOA over that!!!!!!!!!!!! As sickening as the “Street” commercial was…the FU song totally made me feel better!!!!! 🙂
🙂