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31 Comments

  1. 1

    Taylor - GlutenAway

    Great post, dude. The biggest piece of misinformation I’ve been hearing lately is ” I react to 5ppm of gluten or less.” I’ve done a lot of research to back up my initial thoughts and science proves that this is physically impossible. Yet people continue to spread information around claimining “gluten-free products need to be 0ppm because 5ppm still causes a celiac reaction.” I’ve tries responding with scientific evidence but to show this is incorrect, but now I don’t know how to respond to these people anymore. Hoping we can do more to inform people on what is correct but of course each celiac is different.

    Reply
    1. 1.1

      Gluten Dude

      Thanks Taylor. Like I said, fear-mongering is not our friend.

      Reply
      1. 1.1.1

        elisa

        Even if I agree with the fact that 5ppm cant hurt celiacs, 20ppm are still an issue for some of them. Just by reading between the lines of the studies… That’s why Australia still allows less gluten in their products than US and Europe do.

        Reply
  2. 2

    @calgarywalker

    I would really like the celiac community to get away from ppm. Measuring gluten this way is hurting us, not helping us. When I was diagnosed I looked into it and found the research was not done based on parts per million but was done based on milligrams per day. The research I saw said that most MOST celiac sufferers could tolerate exposure of 10 mg per day, some are more sensitive most are less sensitive. It takes a bit of math to convert this to ppm, and I don’t know who came up with this, but it works out to: the average AVERAGE celiac sufferer can ingest about 1 lb of “gluten free” prepared food (at 20 ppm) per day. If you eat a whole box of GF cookies (oh I’m sooo guilty of this) and then top it off with that piece of GF cake don’t be surprised if you have a reaction because you went over 10 mg per day.

    Reply
    1. 2.1

      Dick L.

      Yes, wouldn’t it be great if labels gave mg/serving? I think the whole ppm business has led to huge confusion and misunderstanding about gluten consumption.

      Reply
    2. 2.2

      Goldentreese

      Just fyi ppm means mg/L or mg/kg. Do you could do the math on any given product with known weight or volume.

      Reply
  3. 3

    Hap

    Great observations & advice, as always, Dude!

    “My diet is plenty healthy. I eat vegetables. I eat fruit. I eat meat. I eat fish.” — GDude

    This is only healthy formula which works for me – but what else does a healthy body really need anyway. I couldn’t care any less about ppm now because I don’t eat or drink anything that requires this measurement.

    Thanks for your efforts and educational info!

    Reply
    1. 3.1

      Donna V

      Exactly! Anything that does require ppm measurement isn’t really healthy to start with! Hence I eat fresh real foods, period. Which may resemble some form of paleo diet which happens to be gluten free. ☺

      Reply
  4. 4

    @gffoxy67

    As always Dude, terrific article! I am of the NCGS variety, and while some say it’s not real, I’m alive today because of going gluten free. I was that ill and so malnourished I doubt I would be here. My favorite is the “oh my gawd, what do you eat??” Like there are only the 8 foods on the whole planet (gluten dairy soy top the list, along with a few stragglers who came to the party). I’ve gone from 110lbs at 5’9″ to a healthy buck fifty! So yeah you will gain weight eating meat, fish, fruit and veggies. I never touch the crap, either before or after diagnosis, although admit I did loves me the odd big mac. Question: What is your stance on Enterolabs? I went through the testing including the genetic tests about a month after going GF, and while the numbers were low it was still positive for gluten antibodies, along with dairy and soy, and they say (sic) that double copies of the gene predisposing to gluten intolerance were present, but not celiac and fat absorption was normal so no intenstinal damage. My mother is celiac and I have tested negative repeatedly through blood and colonoscopy. I consider myself full blown NCGS, and tiny amounts of gluten will take me out for days, so I just wondered about your opinion on their (ick) stool testing for the antibodies. Inquiring minds…..I do get tired of the “if you’re not a true celiac, you don’t need to eat gluten free” rhetoric.

    Reply
    1. 4.1

      Gluten Dude

      I don’t know enough about Enterolabs to speak to it. Let’s just say I’ve heard mixed things about them. And yeah…the NCGS rhetoric that it’s not real is beyond annoying.

      Reply
    2. 4.2

      @mpv61

      @gffoxy67, did you mean to say you tested negative for celiac through blood and endoscopy, rather than colonoscopy? Gluten damage for someone with celiac disease is found in the small intestine, not the colon. As far as I know, a colonoscopy doesn’t tell you anything about the small intestine and celiac disease.

      In any case, I’m glad that going gluten free (and eating healthy) has been so successful for you!

      Reply
      1. 4.2.1

        @gffoxy67

        I did, @mpv61….to me it’s all one big colonic organ :) But for clarity, yes they did an endoscopy and a colonoscopy in one go, and the blood work was always negative. I will tell anyone who listens that gluten can cause so much more damage than anyone can imagine, and you don’t have to be a diagnosed celiac. NCGS is real and I have more than twenty years of being spun through the psychiatric system drugged to the eyeballs being told I had depression, bi polar disorder, panic disorder, etc…Add accusations of being anorexic to this food loving home cook and its clear how gluten nearly ruined my life. Cockroach theory: if there’s one, there’s a hundred. I have not been on any meds, have a happy successful life & family, and am finally at a normal weight after 5yrs GF. I wonder all the time how many other folks just need a diet change, and not big pharma. People must get sick of me, but now i’m seeing so many young people (whose diets are increasingly processed and crappy) being diagnosed with mental illness and it makes me wonder. Not saying that mental illness is not a real and serious problem, but yes sometimes it actually has an organic cause that can be addressed. And what is there to lose? ps. GD, great site, great blog, great work you do! Followed the cheerios debacle and kudos to you for doing all you find time to do, I’m sure you have helped many many people. Hats off to you.

        Reply
  5. 5

    Weldon

    You can get a reaction through skin. Through my journey to determine the cause of my gut issues I learned how to make real sourdough bread thinking that somehow the bacteria would make it easier on my system once it was broken down. I noticed every time I kneaded the dough my palms would get red and itch really badly. I’m sure this is akin to what it was doing to my gut linings.

    Reply
    1. 5.1

      Gluten Dude

      Just to be clear, I’m not saying you cannot get a skin reaction from gluten. I know many celiacs do. I’m saying it can’t penetrate your intestines and cause intestinal damage thru your skin.

      Reply
    2. 5.2

      JG

      Word! I’m a bartender, and not only do I tell folks that my life is a bitter irony because I can’t taste the beer (so I just give ’em samples and let them choose for themselves), but sometimes, if I get too much beer on my hands, I get a little rashy. It’s not serious, though, so mostly I just laugh.

      Reply
  6. 6

    Marlena

    Hi – I am not celiac, but due to Crohn’s Disease I cannot eat wheat and so, I am generally gluten free. I am so glad you wrote this – wish more magazines, e-zines etc. would say these things. it gets very tiresome to hear/read the nonsense that is put out as truth. I can eat rye, but not barley, so I am 2/3 GF. I eat a healthy diet just like you, with an occasional treat. my gastro guy says I can eat wheat once a week, but I think that is horse hockey – it’s easier to just stay away.

    Reply
  7. 7

    Carl S.

    Coupon code does not work

    Reply
    1. 7.1

      John

      Might be a confusion issue between capital letter O and numeral 0 in 6OFF?

      Reply
      1. 7.1.1

        Carl S.

        Code works now so it looks like problem was found and fixed. Thanks.

        Reply
  8. 8

    Sarah

    Anyone who feels that he/she is extremely sensitive to low levels or gets symptoms from walking down the flour aisle might want to see an allergist to be evaluated for possible food allergies. I was skin-tested for wheat before I went gluten-free, and it was negative. I thought that a wheat allergy was not my problem. However, over the years, I just kept getting more and more sensitive to the point of insanity. I’ve had to take extraordinary lengths to protect myself. It was when I finally decided to try taking an antihistamine after a reaction when I realized I might be dealing with a food allergy rather than (or in addition to) NCGS or celiac disease. It really helped with my symptoms. Benadryl I could especially tell a difference with. When I had the blood test for wheat done back in January, it was a low positive (Class I). That doctor dismissed it as a false positive. I got a copy of my result and did some research. I then decided to see another allergist for a second opinion. He seems to be doing much more thorough testing (still tested negative for wheat via the skin test), so we’ll see what the outcome will be. I have a follow-up on March 15th. Hopefully I can finally get some answers.

    Reply
  9. 9

    Betsy in Michigan

    Thank you, thank you, thank you GD for some intelligent words. It would be great if there were different tests (not involving the ingestion of gluten!), so folks such as myself would know if they were “only” NCGS or celiac, but people are their own best individual researchers. Delayed reaction food allergies (I can’t recall if they are actually technically allergies – ask my allergist!) will NOT show up with allergy testing. I had to discern for myself what was giving me eczema (doc told me kindly to figure it out and please let him know) – it was soy. And because of the lack of tests, I’m also not really sure if it’s the casein or lactose in dairy that brings a return of my fibromyalgia symptoms. So…. yes I agree 100% that you should eat what makes you feel the best!

    Reply
  10. 10

    Karla B

    I was once in line at the grocery store when someone dropped a 10 lb bag of flour that burst open in front of me. I’ve also come across spills like that in aisles. So while I agree you’re mostly safe at the grocery store, weird things can happen!

    Reply
    1. 10.1

      John

      Yeah, I wonder about that sort of thing sometimes; also when there’s flour — those bags are never sealed very well — or at least what looks like flour, on the conveyor belt when you’re in the lineup and loading your stuff onto it. And similarly there’s always leaked flour on the shelves, which can be a concern if they keep their GF flours or other GF products directly underneath.

      Reply
    2. 10.2

      Gluten Dude

      Agreed. Flour in the air…not good.

      Reply
  11. 11

    Carl S.

    Both the Unsubscribe link in the notification e-mail and the subscribe link below are broken. Notifications continue to be sent to my e-mail with no way to disable them.

    Please fix this.

    Thanks

    Reply
  12. 12

    Boston Jay

    Well said Dude, well said. My biggest enemy in the 15 years since my celiac diagnosis has been crosscontamination; we have to be our own guardians of our health before putting blind trust in anything labeled glutenfree.

    Reply
  13. 13

    Sherry Beavers

    So glad to read this. My journey is fairly young… Although I am not. I’m on a learning curve regarding foods with hidden gluten… Then was told I had to separate out my dishes, use different silverware, change my shampoo and make up!!?? Wear gloves when I cook??Seriously? The dishwasher STERILIZES stuff folks! I’m a Celiac.. Not Crazy!

    Reply
  14. 14

    Sherry Beavers

    So glad to read this. My journey is fairly young… Although I am not. I’m on a learning curve regarding foods with hidden gluten… Then was told I had to separate out my dishes, use different silverware, change my shampoo and make up!!?? Wear gloves when I cook??Seriously? The dishwasher STERILIZES stuff folks! I’m a Celiac.. Not Crazy!

    Reply
  15. 15

    Greg

    MYTH: Celiac disease means you are stuck buying expensive “gluten free beer” that completely sucks.
    TRUTH: If you have some time and money to invest in some basic equipment you can brew any kind of beer you want for about one dollar per beer that you can’t tell is gluten free. I am doing it. I’ve brewed a porter, a pale ale and a golden ale. And, its kinda fun. No more wasting money on New This or New That.

    Reply
  16. 16

    Name (required)

    Some of your best writing in awhile!

    I particularly enjoyed: “So who do you trust? (Or if you’re George Thorogood, who do you love?)” and “THIS IS SCREAMING. This is talking firmly!! We can move on now.”

    I’m convinced you secretly moonlight as a comedian.

    Reply

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