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41 Comments

  1. 1

    Joanna

    You bet! All of these are separate issues and there is a tendency to mix them up – not a good thing.

    I like your example of dairy – perfect. It is not good for YOU as you found by trial and error, that does not mean it is not OK for the celiac standing next to you.

    Personally I have a bit of a list of things that I cannot eat, gluten being a biggie, but the other things on that list, well it does not mean that they contain gluten just means that I can’t have them and feel well.

    Boils down to every body is different so don’t assume.

    Joanna

    Reply
  2. 2

    Rachel

    This article has been spreading around FB recently:
    http://scdlifestyle.com/2012/03/the-gluten-free-lie-why-most-celiacs-are-slowly-dying/

    Sadly, some of my friends with Celiac are believing it, too. Can you say SCAM?

    Where do these guys get their information? Where is their credibility? They are just trying to scare people to make a good buck. Sick

    Reply
    1. 2.1

      Lisa Mims

      They’re right about the inflammation: celiac is an autoimmune disorder.

      They’re also dead wrong about what is causing it–in a lot of folks, getting rid of red meat is the key. (So, no paleo, for some people.)

      For others, they’ve got food allergies that are still making them sick, and they have to stop eating the most random things. (Tomatoes?)

      For me personally, it took kefir, no red meat, no oats and a lower fructose diet. (But that’s me. What causes inflammation varies widely.)

      The bigger deal is that celiac isn’t fixed by just going gluten-free–you have to figure out what, for you, causes immune system reactions, whether it’s garden-variety allergens, meat, some combination of the above, or bad gut flora.

      Until we treat celiac like it’s the digestive autoimmune disorder it is–like Crohn’s and Ulcerative Colitis, a lot of us are going to stay sick.

      Reply
      1. 2.1.1

        Claudette

        Lisa: the tomato connection actually makes sense. About 20% of people with celiac also have a “nightshade” reaction to at least one of the nightshades (bell/chili peppers, tomatoes, potatoes, eggplant). I react to eggplant.

        Reply
      2. 2.1.2

        Emily in AZ

        You’ve got it Lisa.

        Many have fructose intolerances, lactose intolerances, etc. but Everyone is Different! and we all have to find what works for US.

        Reply
    2. 2.2

      Carrie Dee

      I don’t think they’re trying to scare people: they’re just stating the facts. Going gluten-free won’t necessarily heal your gut. The damage will remain if you’re still eating foods that will continue the cycle of damage. The Specific Carbohydrate Diet is a diet that focuses on healing the intestinal lining and managing gut problems (although no cure is possible). It designed by Dr. Sidney Haas and Elaine Gotschall, and originally tailored for people with Celiac disease (although people with NCGI, IBS, Crohn’s Diesease and Ulcerative Colitis are using the diet to heal themselves well, too). It came out in the 1950s and 60s, long before the gluten-free diet and Paleo diets made it on the scene.

      I’m really not great at explaining the SCD diet, but here goes. A lot of people believe that going gluten-free will cure their stomach problems and that the intestinal damage will magically disappear. But, it doesn’t and they wonder why they still get sick, long after the gluten is taken out of the picture. The problem is that once the gut is damaged, it can no longer efficiently process complex carbohydrates that include grains (wheat, oat, barley, etc;) sugars, lactose (in all dairy products except for aged cheeses and 24-hour cured yogurt) starches (corn, potatoes, yams, etc;) and soy, and disaccharides. The damage also decreases “good bacteria” within the gut.

      Once you eat these complex sugars, they never leave the gut. They just hang around, undigested. It feeds bad bacteria within the gut, which in turn causes more damage.

      The waste byproducts from these bad guys seep through the gut and causes systemic damage to other organs within the body (liver, nervous system, skin, etc;). But most people are unaware of this cycle, so they keep eating that stuff, so the cycle of damage continues.

      The Specific Carbohydrate Diet has been in existence for decades and is grain-free, starch-free, sugar-free, soy-free, lactose-free. It allows simple carbs and monosaccharides that can be absorbed quickly, while starving out the bad bacteria.

      For me, it worked when nothing else did. And I had ulcers, a hernia, chronic diarrhea, gas, liver problems, severe migraines, eczema, anxiety attacks, heartburn, benign cyst, PCOS, the list goes on. When I go off the diet, my problems return enforce. Being on the diet, for me is like night and day, especially after suffering for two decades with no relief, and seeing a drastic improvement after strict compliance on the diet. In May, I went off the diet to be tested for Celiac Disease and slipped back into my old habits, and all of the above returned.

      The surprising side effect of this diet was that my skin cleared up, and so did my anxiety issues. The SCD has a very specific list of legal and illegal foods that are allowed on the diet to help promote gut healing. It’s a pain sometimes, but for me, it’s worth every ‘no” to foods I know will make me sick.

      To be fair, I like Steven (who has IBS) and Jordan (who has Celiac Disease) who manage the site. I don’t think they mean to scare people, just inform. They’re also salemen, but , they do provide good information at times. But, you can find that same information from fee at the SCD support groups on Yahoo, and they’re some of the kindest and most compassionate individuals that I’ve had the pleasure of communicating with.

      The basics for the diet are available at http://breakingtheviciouscycle.info . It’s not a diet for everyone, and not all people will experience cures, but it’s helped a great deal of people (including myself) when drugs and and a gluten-free diet weren’t a cure-all. The diet also helped me figure out that I have NCGI, (thanks to going grain-free, then breaking out in a rash after using a beauty product with wheat in it).

      P.S. The diet won’t help everyone. Gotschall said that herself, but it does help a lot of people manage their symptoms.

      Reply
      1. 2.2.1

        IrishHeart

        Carrie Dee, with all due respect…you said:
        “In May, I went off the diet to be tested for Celiac Disease and slipped back into my old habits, and all of the above returned”

        That means your symptoms probably returned because you went back on gluten. This means you have a gluten intolerance.

        That is not the same as “just following the SCD”, hon.. Sorry.
        You can’t judge the efficacy of the SCD diet if you reintroduce gluten
        to the mix.
        You can only judge if it works FOR A CELIAC if
        (1) you have celiac
        (2) you are already off gluten
        (3) and then go the “extra mile” on the SCD diet.

        And this is what a “control” is in a science experiment.
        There are too many variables to say the SCD is the only way for celiacs to heal.

        They are fear mongers IMHO
        because it is completely false to say “celiacs are slowly dying because they do not follow the SCD” Totally unfounded.

        I don’t follow the SCD and I am flourishing. At diagnosis, I was
        dying for sure.

        Maybe SOME people, particularly those with Crohn’s or Ulcerative colitis would benefit from the SCD, but it is not necessary for all celiacs to be following this diet plan.

        Glad you are feeling better!!! :)

        .

        Reply
        1. 2.2.1.1

          Gloria

          Hell to the yes Irish Heart. Thank you. I have celiac and have been gluten-free for almost 20 years without any illness. I get pretty tired of people telling celiacs to avoid every food in the world.

          Reply
    3. 2.3

      Else

      What the heck is a “health engineer”??? The author of that article claims to be one. Funny, I can’t find any information about that being a recognized health profession!

      Reply
      1. 2.3.1

        Gloria

        Because it’s not. People can call themselves whatever they want if there are people who will fall for it.

        Reply
  3. 3

    Monica Musrock

    This is why I don’t belong to any support groups online. I would love to because it’s a good source of news, but they make my eyes bleed. Every week someone wants to know about envelopeand stamp adhesive having gluten and it turns into a free for all that ends with, “Well, it glutened me!” Sigh.

    Reply
    1. 3.1

      Gloria

      Tea bags last week…glued with wheat of course. I called every manufacturer I could think of and they all said their bags are heat-sealed. I had to stop reading comments, it makes my blood pressure go up.

      Reply
      1. 3.1.1

        IrishHeart

        I have seen the tea bag thing too. Wine corks and barrels too.

        All false. these things will NOT gluten you.

        Reply
        1. 3.1.1.1

          Nora

          Wine makes me sicker than gluten because apparently I can’t handle sulfites anymore. Cork has nothing to do with it.

          Reply
        2. 3.1.1.2

          KV

          All the same, I buy self-adhesive stamps and envelopes (Who wants to lick them anyway?), and though I’m mildly concerned with how wine barrels are sealed, I’m not giving up my French wine. If I happen to get glutened by a white Burgundy, I’ll switch to a different wine maker. There are tons of them! ;)

          Reply
  4. 4

    Emily in AZ

    THANK YOU Dude! Stuffed pepper needs to take back the statement that Diet Coke is Gluten Free and accept that they crossed a line without factual evidence and made a statement out of speculation. Yes diet coke is crap, but not all crap has gluten in it. They are two separate things.

    Reply
  5. 5

    Donna

    You hit the nail right on the head Dude. If it makes you feel ill THEN DON’T EAT OR DRINK IT! End of story!

    Reply
  6. 6

    Erica D.

    I hate the Internet. I wanted to rip all the hair out of my head yesterday.

    Reply
  7. 7

    Claudia

    I stopped drinking a lot of sodas because the carbonation bloated me, not because it has “gluten” in it. Some people are real fear mongers. I just keep on the path. It sounds like this lady is just a little too paranoid. I might be if I believed all the bulls–t on the internet. All I know is that I feel better and my blood tests prove that I am gluten free. Nuff said.

    Reply
  8. 8

    IrishHeart

    argh….this is why I limit myself to a certain number of “celiac/GF sites” on the internet. I see all kinds of wrong information being posted that makes me want to start drinking at 9 AM….Although that’s waaay too early to start, it would be okay because yes, VODKA IS GLUTEN FREE!

    Caramel color does NOT contain gluten.
    The author’s profile states she was “certified with Gluten Free Society under the direction of Dr. Peter Osborne”
    That explains it.

    There are so many gluten myths I have tried to help dispel on a daily basis. People get all kinds of crazy mad at me for it, but I can’t see letting that kind of crap float.

    I have a “thing” against fear-mongering. and before I forget, let me say one very important thing: For the love of mike, drinking milk will not cause suicide in celiacs. Total hogwash.

    Furthermore:
    There’s NO gluten in: envelopes, stamps, glutinous rice, toilet paper rolls, black coffee or coffee cups. No gluten in paint (and please stop licking walls to find this out, people!!) , water filters, balsamic vinegar or corn. No gluten in crayons or chalk dust either (yes, people claim these things have made them “gluten” sick)

    You cannot get sick from “just walking down the bread aisle” (I see that one often) Honestly, you could even hold a loaf of Wonder Bread and nothing will happen. I do have fun sometimes walking through BJs giant bakery section, wild-eyed and pointing, saying loudly “it’s poison, I tell ya…It’s poison!” My poor husband. :)

    And finally, you cannot get glutened by a steering wheel, a doorknob, a book, a seat, someone’s couch, sheets or pillows… or from touching a pole on the subway (although, there are all kinds of ick on those, so wash your hands, for pete’s sake!)
    Nor can you get glutened by walking into a beauty salon that has hair spray with hydrolyzed wheat protein. And the chances of someone’s little kid glutening you after she ate a handful of goldfish crackers is next to nil unless she shoves her wet, gluteny fist inside your mouth and holds your nose closed to make you swallow.

    The things people insist are “glutening them” makes me think the fear-mongering has gone too far.

    PS>>>Dude.! ..YOU ARE ON VACATION!! get back to the drinks and sunshine, mister!

    Reply
    1. 8.1

      thetxlady

      Irish…RUSSIAN vodka is required to be potato but SEVERAL american well vodkas (read cheap & very commonly used) are 100% WHEAT.
      Ketel One is an example: http://en.m.wikipedia.org/wiki/Ketel_One

      Reply
      1. 8.1.1

        IrishHeart

        Doesn’t matter if they are distilled grains, even wheat.
        Not all Russian vodkas are potato vodkas. Some are made from grains, yes but the distillation process renders the gluten harmless.

        Plain vodkas are gluten free.

        ” Distilled alcoholic beverages such as rye, scotch, gin, and vodka can be made from a variety of fermented grains. Like distilled vinegar, though, even alcohol made with gluten-containing grains is gluten-free because the distillation processed removes the gluten protein. Liqueurs are a mixture of distilled alcohols with added flavorings or extracts, though gluten-containing ingredients are not typically used in these products. Wine is made from fermented grapes and is gluten-free. Some wine coolers and ciders, however, may contain barley malt flavoring and are not gluten-free. Obviously, it is important to check the ingredient label of these alcoholic beverages.”

        http://www.delightglutenfree.com/glutenfreemyths#.UqjI3luIzvE

        Q: Are distilled beverages made with a prohibited grain (wheat, rye, barley) safe for celiacs?
        A: Only specific gluten-free beers (Bard’s Tale, New Grist, Green’s, Redbridge, to name a few) are appropriately gluten free. As for pure spirits, (vodka, gin, scotch), the distillation process makes these beverages safe because the protein is removed. However, flavored spirits may contain malt, and should be avoided.

        http://www.cureceliacdisease.org/archives/faq/are-distilled-beverages-made-with-a-prohibited-grain-wheat-rye-barley-safe-for-celiacs

        Reply
        1. 8.1.1.1

          Claudette

          This is true. Gluten proteins are too heavy to be carried by steam (which is how distillation takes place) so instead of being carried up the distillation coils, the gluten falls back down into the mash at the bottom of the distillation apparatus. Gluten cannot be carried by steam – it’s way WAY too heavy, from a physics/chemistry standpoint. Distillation is always a purification/concentration process, and big ol’gluten protein molecules are considered contaminants. This distillation process is a basic principle of chemistry – and anyone who says otherwise doesn’t understand chemistry. Now, the stuff at the bottom of the source vat for distillation – yeah, that stuff will make you gut-hugging sick. But the stuff in the distillation vat – it should be safe.

          Reply
      2. 8.1.2

        Gloria

        Hello, maybe don’t get your medical info from Wikipedia.

        Reply
    2. 8.2

      Molly (Sprue Story)

      No, no, no, no, Irish. I ate a piece of sidewalk chalk and I feel really sick. Trust me.

      This post is so true, and there are so many spot-on—and funny—comments. I’m dying. (Slowly, like everyone else not on the specific-carbohydrate diet, yeah?)

      I stopped drinking Diet Coke and it made no difference to my health at all, but I do feel way more virtuous, and tired.

      Reply
      1. 8.2.1

        Gloria

        LOL Molly! Thanks for that!!

        Reply
  9. 9

    Comrade Svilova

    It’s hard, because the anxiety about getting sick is always there, and it’s reassuring to think that there’s only one explanation for illness. It’s taken me a while to be able to tell the difference between a bit of stiffness from activity and the pain that heralds the onset of gluten-related arthritis. And I have to admit that at one point I believed that by being strictly gluten free, I would never get sick again. (False hope that!)

    I’ve been noticing lately that my body doesn’t like high fat meals, but it’s definitely not because fat has gluten in it. :) The great thing is, celiac made me listen to my body more, so I can observe what works for me.

    Reply
    1. 9.1

      Miss Dee Meanor

      Keep an eye open for possible gallbladder disease. I couldn’t understand why I was getting pain many times after eating and I couldn’t pin down any one food group that was causing it. (I knew I was getting no gluten.) I rocked on like that for over a year. I found out it was my gallbladder only after a stone lodged in my bile duct and I was in an emergency situation. I was told that it is quite common for Celiacs to eventually have gallbladder disease. Unfortunately, we’re so used to food making us feel crappy that we don’t investigate that a possible cause for fat intolerance until we’re in a emergency situation.

      Reply
    2. 9.2

      Emily in AZ

      Gastroparesis? Just something else to consider… ;)

      Reply
    3. 9.3

      IrishHeart

      A third possibility is simply the Inability to digest fats because of pancreatic insufficiency, which is very common in newly diagnosed celiacs.. This will resolve in time. If it doesn’t, see your GI doc.

      Take some digestive enzymes before meals.

      Enzymedica Digest Gold – they are GF and will help a lot!

      Reply
      1. 9.3.1

        Peter Olins, PhD

        Hi IrishHeart. Could you tell us a bit more about about why you believe pancreatic insufficiency is common in celiacs? I’m no expert, but a quick scan of the published literature suggests that pancreatitis of any kind is rare, even in celiacs:
        http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3494459/

        My 2-cents, with all due respect: I’m not sure if I agree that this condition is suitable for self-medication. As far as I know, none of the over-the-counter preparations has been tested for efficacy OR safety.

        Reply
        1. 9.3.1.1

          IrishHeart

          It’s listed as a symptom of celiac under the “Ps” in the symptoms guide of the University of Chicago Celiac Disease Center. Here’s a quick cut and paste:

          • Osteopenia
          • Osteoporosis
          • Pancreatic Insufficiency
          • Parathyroid Carcinoma

          http://www.cureceliacdisease.org/medical-professionals/guide/symptoms

          Digestive enzymes are not harmful in any way. If someone is having a problem digesting fats, for example, they can be useful.They are a temporary solution while the gut is healing.

          But here are a few articles:

          Celiac disease is associated with exocrine pancreatic insufficiency. We previously reported that in 30% (20/66) of adult celiac patients with current or persistent diarrhea the underlying cause was exocrine pancreatic insufficiency.

          http://www.ncbi.nlm.nih.gov/pubmed/20458623

          Pancreatic enzyme supplementation may be useful in extremely malnourished patients and may accelerate weight gain (115).

          http://ajcn.nutrition.org/content/69/3/354.full

          They surely helped me right after diagnosis. But as always, with any suggestions I may offer, please feel free to disregard.

          Reply
        2. 9.3.1.2

          Gemini

          Peter….I have Celiac Disease and suffered from pancreatic insufficiency as a result. The reason it happens is because your small intestine sends out signals to your pancreas to release pancreatic enzymes during the digestion process. When your villi become damaged or annihilated, this no longer happens so your pancreas is unable to do it’s job, to some extent. You know what happens when something is not used……it can atrophy. This can be reversed once you heal from the intestinal damage but not always 100%. I still have some trouble digesting fats so use Digest Gold with meals to help. I am no longer suffering from advanced malnutrition and the enzymes were instrumental in helping with the healing process. This is common knowledge among the medical community.

          Reply
      2. 9.3.2

        Comrade Svilova

        Thanks folks! I think Irish Heart is right on with the suggestion that it’s from being recently diagnosed as still healing.

        I’ve been trying to get a diagnosis for years, but because every time I ate gluten the arthritis would get so bad that I couldn’t walk, doctors kept telling me that “you don’t have celiac because your blood tests are negative (well, duh, I had barely eaten any gluten in years!), but I guess you should avoid wheat if you want” — end result, I thought I could continue working at the bakery I’d been working at for 8 years while just not eating any of the wheat-containing products, because the doctors said that I didn’t actually have celiac. Of course, as a baker I was constantly tasting the meringues, frostings, etc., and I know there was probably significant cross-contamination. After six months of health hell (colds, flus, constant coughing, arthritis, diahrrea) I finally quit that job, got diagnosed, and was finally able to start discovering what truly feeling healthy feels like. After the diagnosis, I discovered all kinds of things that I was eating that I didn’t realize contained gluten. Long story short, I have no symptoms now except for being a bit uncomfortable with high fat meals. I’m hoping that clears up too in time. It’s only been five months.

        Reply
  10. 10

    Gloria

    This frustrates me to no end. Celiac’s always argue amongst themselves about what is GF instead of just sticking to the facts. Look for the scientific evidence or call the manufacturer. Period. Twenty years ago when I was diagnosed we could not have ketchup, mayo, salad dressing, mustard etc because vinegar was said to have gluten. When MULTIPLE scientific studies said there were no gluten peptides left after distilling the celiac support groups would not take it off their no-no lists for YEARS. Cry because there is no research and then cry because you don’t believe it. Canola oil and mushrooms were on one groups list. This whole problem is worse now because of all of the blogs and alternative medicine practitioners and pseudo-nutritionists. On glutenfreeworks recently someone commented about tea having gluten because of what the bags are glued with (wheat of course!). I called every manufacturer that I could think of and they all told me the bags are heat sealed, not glued.
    Why are things getting worse instead of better? Why should celiac’s give up every thing on the face of the planet?
    You hit a chord with me Dude. As an RD with a celiac specialty I get calls about things like this EVERY DAY! I wish you would have
    called the blogger out by name, but I understand why you didn’t.

    Reply
  11. 11

    Peter Olins, PhD

    “The sky is still not falling” never get re-tweeted.

    The fear-mongers will control the game until people start pushing back.

    Reply
  12. 12

    KittyKat

    GlutenDude, you hit the nail on the head with this post! In nearly every online Celiac support group, I see mass hysteria every day. We need to put an end to blaming gluten for everything that goes wrong in our bodies. Someone recently posted that they got ‘glutened’ when they drove past a McDonald’s drive thru window (from the ‘smell’ of gluten wafting in the air) and another person posted that they get horribly ill when someone cooks regular pasta in the house (just from the smell!?). Someone else suggested she wear a mask. It’s all incredibly sad that people associate everything with gluten. Thank you for trying to help dispel the myths!

    Reply
  13. 13

    Rachel

    I have a question about something, I thought that there WAS gluten in corn? Not the same as wheat gluten, but I’ve seen “corn gluten” on some food labels… My doctor told me that oats have gluten too, but not the same kind, and that some celiacs can tolerate oats as long as they aren’t contaminated. I eat oatmeal every day and feel fine. Do a lot of people have a problem with oats? I learned that in addition to gluten, I can’t tolerate corn, soy (even if it’s not contaminated), onions, garlic, green pepper, and dairy (which I knew a long time ago). I was wondering if there are certain other things besides gluten that are common intolerances for celiacs?

    Reply
  14. 14

    Peter Olins, PhD

    Rachel — The word “gluten” was invented long before we knew exactly what it was, and used as a generic term fort the sticky protein in grains. The protein in corn that corresponds to wheat gluten is called “zein”. It’s a distant relative of wheat, rice, etc., and I haven’t seen any evidence that zein “cross-reacts” with the disease-causing T-cells found in celiac disease.

    BTW How did you discover all your other foods you have problems with? Are they allergies?

    Reply
    1. 14.1

      Rachel

      Not allergies, no. Just things that don’t sit right with my digestive system. I found out a while ago that I was lactose intolerant, and the others I found out recently after my doctor put me on a low FODMAP diet. Maybe eventually I will be able to eat some of these things again after I’ve been off gluten long enough and I start to fully heal.

      Reply
  15. 15

    elisa

    Yes coca cola IS GLUTEN FREE! I’m pretty sensitive (bad luck), but drinking it is OKAY. Unless they serve it in a beer glass… (it happened to me).

    > About grains, they ARE NOT gluten free. They are NATURALLY gluten free only… There is a long way from the fields to your plate, and YOU NEVER KNOW where the grains had been before. If it isnt CERTIFIED gluten free dont buy and dont eat them. If you dont feel good even eating gluten free : stop eating non certified grains and farinas and start eating certified products even if they should be naturally gluten free. Even gluten free grains have to be labelled gluten free for celiacs, I’ll stand by it. If you stopped grains thinking you cant digest them properly, try labelled grains, you may be surprised…!!! Naturally gluten free isnt enough for celiacs. Take care !

    Reply

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