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33 Comments

  1. 1

    Hap

    My sentiments also Dude — well stated! Plus, most inquiring minds would generally agree there’s nothing wrong with me as long as I stay far, far away from wheat.

    The following lines from 1963 still seem apropos to our circumstances in 2015:

    Benjy Benjamin: Look! We’ve figured it seventeen different ways, and every time we figured it, it was no good, because no matter how we figured it, somebody don’t like the way we figured it! So now, there’s only one way to figure it…

    Emmeline Finch: …I feel sick.

    J. Russell Finch: Now take it easy honey, these things happen ya know.

    Mrs. Marcus: Now what kind of an attitude is that, “these things happen”? They only happen because this whole country is just full of people, who when these things happen, they just say “these things happen,” and that’s why they happen! We gotta have control of what happens to us.

    J. Algernon Hawthorne: Look…surely the most sensible thing for us to do is to press on…Now I earnestly recommend that we…press on with all possible dispatch.

    — “It’s a Mad, Mad, Mad, Mad World”

    Reply
    1. 1.1
  2. 2

    lima bean

    Looking at my neighborhood – I would say its at least 30% trying to be gf. I say “trying” because they will take the croutons out of a salad, cheat occasionally, etc. This is actually good for me in some ways – fuels a better selection of gf items like pasta at the stores, helps keep a gf bakery in business, etc. We all know the downside – waiters who don’t take us seriously, etc. But I haven’t had too much trouble when I sympathize with them and say that I am not a fad dieter but have Celiac DISEASE and could get very sick. I like that word DISEASE…its kind of scary…

    And I read the article and think the headline is stupid but I like some of the thoughts by actual Celiac researchers.

    Reply
  3. 3

    Laura

    Great post! We need to start labeling this behavior as bullying. If the NY Times ran a headline “Wheelchairs are Unnecessary” the disability rights community would be up in arms. No one would think that the damage caused by the headline was ameliorated by a sentence buried somewhere in the article saying, “Of course, there are a few people who really do need wheelchairs.” The NY Times knows that celiac is a serious disease and that a gluten free diet is the only treatment. By using a headline that will surely lead yet more restaurants, food manufacturers, friends and relatives to disregard our requests for safe, gluten free food, the Times puts our health at risk.

    Reply
    1. 3.1

      Gluten Dude

      “By using a headline that will surely lead yet more restaurants, food manufacturers, friends and relatives to disregard our requests for safe, gluten free food, the Times puts our health at risk.”

      Yep.

      Reply
    2. 3.2

      Cheryl

      What a GREAT allegorical example. It is time we stood up and demanded our rights to life

      Reply
    3. 3.3

      KV

      I’m with you but with a slight modification I think will make your point better.

      I wouldn’t use “wheelchairs” in your example because I think most of the people who use wheelchairs do need them. I would use handicapped parking placards. That’s something people frequently use with no actual physical or medical need to do so.

      “Let’s take Grandma’s car to the mall for Christmas shopping so we can park right in front of the store with her handicapped license plate!”

      A headline that reads, “Many people parked in handicapped spaces have no physical handicap,” is likely to get the reaction Dude has to most of these headlines about fad dieters. DUH!

      Reply
  4. 4

    Naomi

    What REALLY bugs me is not so much the media printing these headlines and articles, because as you say they mostly are true. What kills me is when people see the headline, barely read the article and then SEND IT TO ME because I have celiac and am gluten free!!! My husband tells me they are clueless and trying to help but really I can’t take it. WHY would you send an article about gluten free being a not-so-healthy-fad-diet to someone with celiac?? UGH

    Reply
    1. 4.1

      Gluten Dude

      Yep. These articles literally help no one and can have a negative effect on the true gfree community.

      Reply
  5. 5

    Jane

    Yeah, where DOES that 1-in-3 statistic come from? It’s quoted in all the mainstream articles on the “gluten free fad.” It definitely is not reflected by my personal experience. The people I know who are gluten free but don’t have celiac disease have other autoimmune diseases like Hashimoto’s and are avoiding gluten for health reasons, but I don’t know anyone who eats gluten free just for kicks.

    Reply
    1. 5.1

      Jane

      Maybe the source is this survey by the NPD Group, which reports that in January 2013, ” 30 percent of adults, one in every three adults, claimed to cut down on or avoid gluten completely” or “would like to cut back or avoid gluten in their diet.”

      I just have to say that claiming that 1 in 3 Americans say they would like to cut back on gluten in their diets is not at all the same as 1 in 3 Americans actually eating gluten free.

      https://www.npd.com/wps/portal/npd/us/news/press-releases/percentage-of-us-adults-trying-to-cut-down-or-avoid-gluten-in-their-diets-reaches-new-high-in-2013-reports-npd/

      Reply
      1. 5.1.1

        Gluten Dude

        Are you claiming the media is exaggerating facts to fit their agenda? Shame on you ;)

        Reply
  6. 6

    Alex G

    As a journalist specialising in celiac and related areas, I guess I am part of the media which you describe. However, I would stress this point, one I think I’ve made before: you are the media too. Everyone blogging – and everyone commenting on blogs – is publishing. That is media. These are voices.

    I don’t think the headline was that bad. This was an op-ed: headlines have to catch attention. That’s their job. They’re rarely written by the writer of the words beneath. And there *are* myths about gluten, so it wasn’t unrepresentative. I take your point about the possible damage it can do, but I suppose the sheer volume of articles on the subject these days has a welcome consequence: in the sea of words about gluten, the impact of any one article is heavily diluted.

    Reply
    1. 6.1

      Gluten Dude

      Who you calling media?? ;)

      Words of wisdom Alex…as usual. Though I still detest the headline.

      Reply
  7. 7

    Cheryl

    I have been screaming this exact thing. In fact, I posted on Facebook the other day that gluten free means actually FREE of gluten NOT some small amount. That is really LOW gluten NOT gluten free. Some idiot actually said, “the amount of gluten is infinitesimally small”. RIGHT! That still means LOW gluten NOT gluten free. I wonder what they are teaching in schools these days. LOL

    If I have to hear one more idiot quote some useless research study claiming that Celiac’s can eat “small” amounts safely I may be moved to puke all over them. Not one of them is valid in anyway shape or form.
    Those who participate and become seriously ill early on and DROP OUT are not included in the stats. Wonder why? Because it would “throw off” the statistical validity of the research.
    Let me translate that into $$$ speak: “If we count those who drop out because they became too sick consuming these TINY AMOUNTS of gluten, then our numbers will show that our initial premise (think hypothesis) was totally wrong. That would mean no more research money in our pockets. We’d have to actually do something worth researching and that would be HARD!”

    Sorry, that’s likely too harsh. But hey it is only my LIFE we are talking about. Anytime I get accidentally glutened, I get so anemic that I have to stay in hospital getting blood transfusions. And we all KNOW that is just how every red blooded human wants to spend their time and $$$.

    I have friends and family who read just the headlines. SORRY, I HAD (past tense) friends like that. Now I just have friends who don’t get why I refuse to eat Pizza Hut and Dominoes version of low gluten.

    The modern immune system IT IS! It is split into innate and adaptive. Innate causes allergies and anaphylaxis. Adaptive causes these auto immune diseases. Just guess which one is MORE MODERN – adaptive. Seems to me humans are either evolving into a weaker species OR those with auto immune used to just die without knowing why. Perhaps it was called the vapors or something when they used leaches to bleed the bad humors out of people? LOL

    It has to blow over soon. All these lovely people “going gluten free” will get weary of the process and slowly the hype will die down. Let’s just hope that real GLUTEN FREE manufacturers pop back up so we Celiac’s and NCGS can go back to being safe with lousy tasting food that won’t kill us.

    Reply
    1. 7.1

      Gluten Dude

      To be fair Cheryl, even the celiac experts like Dr. Fasano say the 20ppm threshold is safe for celiacs. I’d like to see it a bit lower like some other countries have it. But 20ppm is an infinitesimal amount.

      Reply
      1. 7.1.1

        Donna V

        The GF bandwagon is rather full these days……Perhaps strict facts will prevail when the “dog” products are dropped from the marketing budget due to lack of turnover and no revenue generated. Leaving products, food and media alike, “voted” on by OUR dollars.

        As for the 20 ppm standard, sure they used a scientific study to come up with the figure, but my celiac gut tells me (and I REALLY listen to it these days) that could be changing in the future given all those gluten intolerant and gluten insensitive.

        Remember to VOTE with your $$ for your gut safety and sanity (or should that just be brain/gut?)!

        LOL bottom line……work, eat and live SAFE!

        Reply
        1. 7.1.1.1

          Jeanne

          THanks, Donna! As far as the 20 ppm figure, since I’m really sensitive, I’m very careful about shared equipment, etc., as it all adds up over time. I keep to stuff I KNOW has NO GLUTEN. They can sell the 19 ppm stuff to someone else.

          Yes, I look forward to when only the best stuff is left and the fad is over. I get tired of people thinking they ‘get it’ because they know of someone else who avoids gluten to….fill in the blank. Then I get sick because they don’t actually know what gluten is, let alone what celiac is? Forget it.

          Reply
          1. 7.1.1.1.1

            Donna V

            Jeanne,

            History of the 20 ppm standard is basically an “average” range in which the participants reported “symptoms”. Now that being said, symptoms were recorded at all levels, the 20 ppm was the “compromise” line in the gluten, if you will.

            Me, I totally get you Jeanne and I, myself, only eat FRESH and use the old adage: ” when in doubt leave it out!” Me and my gut are still healing and personally I am tired of substandard, GF products disguised with fat, sugar & salt for “taste” that is marketed to the uneducated gluten gorging masses. Which translates to well meaning gluten eaters attempting to “feed” me and ease their conscious.

            I am not even going there! Pure, fresh, whole, real food touch these lips and digestive tract. I have spent too many years (17 in medial system for a diagnosis) to return to knowingly invite pain and symptoms.

            ….so, stay SAFE for YOU, my GF friends!

            Reply
      2. 7.1.2

        Deb

        20 ppm might very well be “safe”, but it doesn’t mean that any one individual will absolutely feel fine ingesting that much. NCGS kind of proves that you can feel really bad without actual damage … aka “safe”

        Reply
        1. 7.1.2.1

          Donna V

          Deb,

          I agree with you wholeheartedly! I believe you and your feelings and symptoms of NCGS.

          Here’s the irony……Dr. Frasano is not celiac, however, even though not medically necessary he and his family eat GF. I read this somewhere, (maybe his book?).

          Having said that, not being required to eat GF, means not big deal, should a whoops happen.

          What I see as the issue is that no GI damage may mean physically “safe” as no damage is caused….to the medical community. No proof of physical damage, does not mean SAFE for NCGS and the medical profession does not know how to calibrate damage any other way.

          I, personally believe, we have yet to discover the whole story of gluten digestion in humans and how the new wheat varieties as well as farming methods are affecting us. Until that happens, we, as a community need to advocate for our own SAFETY standards and push for changes in forums like Gluten Dude’s.

          Thank you Gluten Dude for creating this platform and continuing to rant and push to the restaurants, manufacturers and food industry as a whole, for transparency and safety for us ALL.

          Maybe in the future GF will mean FREE not statically infinitesimal or celaic safe.

          Reply
          1. 7.1.2.1.1

            Deb

            Did I make it sound like I have NCGS? Sorry if I did. I have Celiac. 0 gluten is how I stay “safe”.

            Reply
        2. 7.1.2.2

          Cheryl

          I believe that NCGS is a form of Celaic just as dangerous but doctors simply don’t yet fully understand all the aspect of gluten mediated auto immune issues.

          That is only ONE reason why I refuse to believe all the “cures” currently being developed! I think that NCGS is dangerous because pain is important to our species survival. If we suffer pain that is severe enough for people to choose to follow a GF diet, there is something important that is not yet understood.

          How do those of us diagnosed with Celaic know for sure that we won’t be “cured” of just the intestinal damage and still suffer all the rest? How do we really know that gluten doesn’t cause the auto immune system to damage the nerves and muscle in some way without villi damage.

          Until they fully understand the mechanisms ALL the mechanisms, I don’t want to just “cure” the villi and end up with serious symptoms that everyone writes off as “no big deal”.

          Reply
      3. 7.1.3

        cheryl

        When is disease EVER fair? For that matter, when is LIFE fair? Death is proof that life is eventually unfair to everyone.

        The problem is that 100% gluten free is a “diet” specifically to treat Celiac and NCGS. Being diagnosed and needing the diet is what started this increase in attention. But really really small is NOT free of gluten. And gluten free should actually mean FREE OF gluten and safe for every Celiac.

        Check out this link to a well written argument.
        http://www.huffingtonpost.com/celia-kaye/the-language-of-glutenfre_b_7737278.html
        It essentially consider the point where we cross from a safe amount to an unsafe amount? There has to be a discrete number. But is it any different if that difference in extremely small. We can move towards infinitely small and still be totally unsafe. People with allergies to peanuts can die from breathing in the smell of a peanut butter and jelly sandwich. I am sure that they were not believed at some point.

        We won’t accept small amounts of lead in lead-free paint.
        Lead causes damage over time. Consequences like these, sound familiar?:
        What are the Health Effects of Lead?
        Lead can affect almost every organ and system in your body. Children six years old and younger are most susceptible to the effects of lead.
        Children
        Even low levels of lead in the blood of children can result in:
        • Behavior and learning problems
        • Lower IQ and Hyperactivity
        • Slowed growth
        • Hearing Problems
        • Anemia
        In rare cases, ingestion of lead can cause seizures, coma and even death.
        FROM: http://www2.epa.gov/lead/learn-about-lead#effects
        People refused to accept that lead caused these problems. Industry claimed it was parents fault. It took time to prove that lead caused these issues. I bet there were even people who jumped on the “lead” bandwagon and diluted the issue causing delays in legislation and care for those being treated. Read up on the history of lead regulation here (or goggle it and find articles):
        http://scienceprogress.org/2008/10/a-brief-history-of-lead-regulation

        It mirrors the gluten free issue and the pattern of ignorance and dilution.

        So why is it a BIG DEAL?
        We can’t possibly expect people to consider cross contamination like touching bread and then gluten free seriously dangerous while we also accept that some small amount is OK. If we don’t stand up and say, “NO WAY”, who will? And while we Celiac’s are complacent about it, we lose the ability to actually advocate for our health being worthwhile.

        Then there is the fact that manufacturers are self-policing. They get to choose when and if they test. General Mills won’t even release the test results for their cheerios. Why do they get away with that? Because we don’t stand up and demand that gluten free mean “Safe for Celiac” which was the original intention. Let them make LOW gluten for those who have no problems with really small amounts.

        There are going to be times when we can’t plan and don’t have total control. Most hospitals rely on that gluten free label on packaging to feed Celiac’s. How are we supposed to be researching a company and asking other Celiac’s in an emergency admission when we are too ill to even be home caring for ourselves?
        Try being in hospital for more than a day going in as an emergency. How is eating food with small amounts of gluten going to help a Celiac heal? The answer is, “we will be at great risk of further damage”.

        What happens to us in case of natural disaster or civil emergency? How about being stranded in an airport – on like September 11, 2011?

        We don’t accept small amounts of penicillin in medications free of penicillin.

        The actual meaning of infinitesimal is:
        In context|mathematics|lang=en terms the difference between infinitesimal and infinite
        is that infinitesimal is (mathematics) a non-zero quantity whose magnitude is smaller than any positive number (by definition it is not a real number) while infinite is (mathematics) greater than any positive quantity or magnitude; limitless.

        As adjectives the difference between infinitesimal and infinite
        is that infinitesimal is incalculably, exceedingly, or immeasurably minute; vanishingly small while infinite is indefinably large, countlessly great; immense.

        As a noun infinitesimal
        is (mathematics) a non-zero quantity whose magnitude is smaller than any positive number (by definition it is not a real number).

        • Sorry if the Math is not clear to everyone. I am a Mathematician. This essentially means a number approaching the infinitely small which is NOT zero.

        Because infinitesimal it is an amount that can’t be measured* using the best measurement tools that science can provide, the amount of gluten in gluten free products in NOT infinitesimally small.

        The FDA actually did/sponsored/planned a study on gluten in all those who are intolerant. The results show that even with extremely small amounts consumed on a daily basis, every single person eventually reacted negatively to gluten. This research used all measures of bodily injury.

        I expect things to change as we get decent research studies. But no one will feel compelled to actually study the reality while we sit back and accept the evidence from Celaic’s that gluten free foods make us sick.

        Reply
        1. 7.1.3.1

          Donna V

          Well done and well put!

          Thank you!

          Reply
  8. 8

    Nutrimom

    I read this article and I agree 100% with what you said- well written! I too, would love to know where they pull these numbers and if our bodies are the problem NOT the gluten, and we are eating gluten, then how is that even an answer???
    I challenge the writer to try going (truly) gluten free for just a few months to see how they feel (and, how gluten free peeps feel with dining out, the costs, the stupid people that still try to give you foods that have gluten in them because they are organic).

    Reply
  9. 9

    Jeanne

    Thanks as always, GD! I get so tired of the politically correct stuff out there—I’m so glad to have you to read; keep sayin’ it like it is, bro!

    Reply
  10. 10

    Jeanne

    Gotta give Nutrimom a few points here: thanks for the comment about people trying to give (sell?) us stuff thinking it’s GF because it’s organic. I have fun repeatedly bringing bags of Bob’s Red Mill barley to the customer service desk in my grocery store, explaining it has gluten. This one especially bugs me because barley’s one of my most-missed foods. And what’s with the grocery chains who stock the GF and Organic stuff in the same aisle?! I know to be super careful, but people who shop because I’m about to visit, or newly-diagnosed celiacs…yikes…be careful out there. Makes you almost yearn for the gold ol’ days of shopping only in the outside aisles of the store.

    Reply
  11. 11

    John

    I suppose you can add this to the assault:

    http://mashable.com/2015/07/09/girls-gluten-instagram/

    I’m wondering if this is just the first in a series with “Girls who don’t get chemotherapy” as the next installment.

    Reply
  12. 12

    gfchopstix

    Good article, Gluten Dude. Sadly, as always, it’s headlines that grab one’s attention. It does irk me, because I’d rather it were something more positive about celiac disease, like ‘CELIAC DISEASE FINALLY TAKEN SERIOUSLY!’, but sadly, the this doesn’t make for a catchy headline, or rile discussion. Hopefully soon, with so much exposure, via your site, and others of us that have to live a gluten free diet (not just because we think that we should), headlines such as the NY Times will be laughable, and not ignored. One can only hope.

    Reply
  13. 13

    Jaime

    It just never ends, does it? I swear a new batch of articles like this comes out every three to six months. *rolls eyes* Is it sad that I’ve almost gotten used to it by now?

    Reply

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