The Celiac Landscape is Getting Treacherous…and It’s Our Own Fault

celiac safe food

I believe the earth is round.
I believe dinosaurs existed.
I believe our climate is warming.
I believe the earth orbits around the sun.
I believe the children are our future…teach them well and let them lead the way (a little shout out to Whitney Houston).

My point is…I believe in science. I believe in science to improve our lives now and for generations to come. What I don’t necessary want is for science to come in and mess with my food. ESPECIALLY MY CELIAC-SAFE FOOD.

But that is exactly what’s been happening. Wheat starch is now being used in some of Schar’s products. Gluten-free barley is now a thing. Oats are now being mechanically sorted instead of being grown separately. Gluten-removed beer is very popular.

Are these items safe? Maybe. Possibly. Sometimes.

Would I consume them? Not in a million f*cking years.

Why? Because I have celiac disease and it’s really, really important what I put in, and keep out of, my body.

Are many in the celiac community celebrating it though? Do I have to ask?

Did they celebrate Cheerios? And Dominos? And Chevy’s? And Smashburger? Yep x 4.

It’s so frustrating to me. The companies that are doing it wrong; the ones that are taking short-cuts and taking risks with OUR HEALTH are the ones that are thriving. And the ones who are doing it for the right reason, who have our health and our disease as their first order of business, are having a hard time gaining traction.

And you want to know the truth? It’s our own damn fault.

It’s our own damn fault because we continue to buy (and promote) Cheerios, even though many celiacs continue to get sick.

It’s our own damn fault because we continue to buy Udis, when it’s obvious they don’t give two sh*ts about the quality of their products.

It’s our own damn fault because we continue to buy Omission, Daura and the other gluten-removed beers, even though there are amazing “gluten-FREE” beers on the market that are truly safe for us.

It’s our own damn fault because when the label says “manufactured in a shared facility”, we are still buying those products.

It’s our own damn fault because people are giddy over the possibility of a pill for celiac disease in the future so they can go back to eating normally, whatever that means.

It’s our own damn fault because we care more about eating what we “used to eat” instead of eating what we “should eat”.

We have an autoimmune disease folks. It ain’t fun. It can be absolutely brutal at times. But I implore all of you to consider being part of the solution and not part of the problem. Take care of your health. Take care of your fellow celiacs. And take care of the companies who do gluten-free right.

Pay it forward and may it come back to you ten-fold.

Thanks. And for those I’ve pissed off with this post, sorry…it comes from the heart.


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118 thoughts on “The Celiac Landscape is Getting Treacherous…and It’s Our Own Fault”

    1. SO TRUE! How about the cancers that are related to celiac in those who refuse to actually follow a 100% gluten free diet?

      Ever priced cancer treatment?

    2. Sort of. Because there’s a successful treatment protocol with the gf diet, it puts a damper of FDA approvals of other interventions. Where they could make a TON of money is making gf versions of popular generic drugs and contraindicating their regular versions. Twisted, yes. When I have a UTI – again – I really don’t care.

    1. Only change in my diet this past year. Got my annual blood work done and you guessed it, raised antibody levels. They do optical sorting of regular parts and don’t use appropriate testing to ensure safety of the final product.

    2. Cheerios are FULL of gluten. The oats are contaminated. I found out the hard way. They are not safe for celiacs.

  1. 100% agreed!! I feel like food shopping has gotten more dangerous instead of easier!! Tried Cheerios and regretted it, tried omission way back when before I knew about it being “gluten removed” and regretted it. Just stay away! It’s not worth it. I miss Cheerios but I’d missing a hell of a lot more!!

  2. Oh c’mon – Big Pharma? We don’t need to be conspiracy theorists here – we’ve got enough to worry about as celiacs.

    The problem lies in labeling itself – the “made in a facility” or “made on shared equipment” is NOT mandatory! It’s optional labeling! I never knew that and was making choices based on that, when in reality, the only real way you can find out is to call and ask about manufacturing.

    Yes, I AM excited about a pill for celiac, but it wouldn’t help me return to eating gluten, only to help the healing process and mitigate cross contamination, because I like to have a life and while I do choose the safest restaurants possible, I travel and sometimes have no choice other than to dine out vs. eat out of my suitcase. It’s a balance of mental health and the possibility of risking cross contamination. ANYWHERE – even my parent’s house.

    You vote with your dollar, so please keep buying products that care about the celiac community and do not buy those products that do not care (use your own opinion on how you decide that).

    1. Dead on, on all counts. I don’t like the anti-science bent of some of discussion around “the pill”. There are lots of reasons that something like that would be helpful or useful without wanting to eat “normally” (and on that, while I don’t share that view, I also don’t like the attitude of looking down on those who do).

      I generally try to research any product I buy. But the thing is, even “made in a shared facility” doesn’t mean it’s not safe. I know of several companies who use this disclaimer, but who also control for cross contamination. Is that a 100% guarantee? No, but then again, *nothing* is short of producing everything yourself.

    2. I agree with you, and for folks like you, its tough when you travel a lot. I don’t know how you do it. I’d be sick ALL the time. I don’t feel there are a lot of places to trust, which brings me to my point; how do you know who you can trust? That’s my biggest issue, I think. I feel like I could spend all day every day researching companies, and even with that, there are SO many opinions and inaccurate information out there, how do you know what to trust?

    3. The FDA and USDA told a San Jose, Ca frozen meal company that they could NOT use the ‘shared equipment’ info on their label.

  3. Great post. I’m guilty of eating processed food and just trying to replace all the crap I ate prediagnosis. I was still feeling so bad and knowing I’m still somehow getting glutened and eating dairy which makes me feel terrible. I’m doing an organic cleanse now, only a few days in and I feel 10 times better, no joke. I’m going to be way, way more diligent now after seeing how I can feel without eating dangerously.

    1. You might try avoiding xanthan gum for a couple weeks. You’ll save money and determine if the xanthan is causing gluten-like symptoms.

  4. Thank you for this posting!!!!!! I so agree with you, I only eat what is really gluten-free by nature, not something that a manufacterer “made” . I love my life, I love my health, and I want to keep it that way.

    My excuses for any mistakes in my English but it is not my first language.

    So: THANK YOU (big fan from the Netherlands)


  5. We can eat 90% of the food God makes and only 10% of the food man makes, that’s a pretty good trade off. Who needs “replacement” foods on a daily basis?

  6. Gotta agree with most of what you said. Cheerios and Omission are out for me. My strong preference is for certified GF products. I will do shared facilities because smaller truly GF companies can’t afford their own. Companies with a good record and high quality level will get my business even with shared lines. UDIs has my non bread business.
    But the overall message of your post. Be more careful. Don’t buy into the GF hype around mainstream products. All that, couldn’t agree more.

  7. I hear you. I hear you. The most important thing you can do is talk to store managers. Ask them to keep the “gluten-removed” beer separate. I buy ciders. I do buy Udis, I admit. I buy the Costco sized loaves which usually have fewer issues. I had to have “the talk” about cheerios with my mom. It is frustrating to have to google everything before you buy it, to have to read the entire box, small print and all…

  8. I appreciate that the regime in the US could well be different to the situation here in Ireland, but whilst I’m not pissed off with what you say, I’m slightly confused. Here, the situation is rather straightforward; there’s a cross-grain symbol that signifies that the local Coeliac organisation has carried out tests and is satisfied that the product being offered for sale is Gluten Free. (bottom right, under the bowl) I’m not talking about some hack with a clipboard and a chemistry set (and a row of pens in his/her top pocket), I’m talking about national interest groups to which we pay a membership fee and who advocate on our behalf. In other Nestle don’t photoshop that badge there – they’ve to get permission.

    And if those folks are happy to certify, say, that thanks to the work of the science boffins at the Daura brewery, the beer that *was* unsafe is now *safe* then that’s good, right? I get that you don’t like ‘science’ getting into your food, but dammit, ever since the Romans worked out that salting food/smoking food stopped it from rotting, science started getting into our food. Ever since somebody worked out that a spoon of sugar in your bolognaise sauce takes the edge off the tomato acidity, science was in our foods.

    I’m not suggesting that we should be reckless or feckless in what we eat. I know – of course – that the idiot who says that they’re GF in a restaurant and then orders the cheesecake is damaging all of us. I know that the persons who’s REALLY GF and says they’ll ‘chance’ the (potentially cross contaminated) fries is damaging us too. But we live in a real world, and shouting NEVER at science because it might just be improving our lot is potentially akin to insisting that this tin can and string is absolutely fine, and no thank you, Mr Smartphone.

    Or to put it another way – and again – i really don’t mean this to come across as snarky (hey look – a smiley 🙂 ) is there a point, GD, is there a level of certification of a product/service that you’ll say ‘yeah, ok’. Every time we step outside the door of our homes, we entrust our health to the hands of anybody who cooks us food. I suspect I speak for a lot of us when i say we’ve all got our lists of eateries in our nearby towns that are safe. Deviating from these lists are silly. And we’ve similarly got lists of things we know are safe to eat, that we can purchase locally.

    But I’m not suggesting playing fast and loose, but I am saying that if independently accredited bodies are stamping stuff as GF, bodies that have our interests as their very raison d’etre, then I’m at a loss to see the massive problem.

    Obviously Udi’s with their bread full of holes can still bite me… 🙂

    1. Here in the U.S.A. the FDA (Food and Drug Agency) sets limits and rules. They took 6 years to take in comments from everyone about the gluten free standard. That included manufacturers who had a vested interest in the highest PPM possible to keep profits up. Manufacturers are self policing. There are no real consequences if they produce product that makes celiac’s sick.

      Take Cheerios for instance, here is a link that explains the issues.

      Then there are Snyder’s gluten free pretzels:

      It is a different landscape in different countries.

      1. It is the lack of consequences for violators that is so frustrating to me. Toothless law. And then the loopholes, and the interest, as you say, in the shortest, cheapest way to do things. If there is going to be regulation, it should be done right. Free of gluten should mean free from gluten at every stage in the item’s lifecycle. Growth, production, packaging, everything. Free without the engineering to “remove” or otherwise mess with the product to get around the basic common sense meaning of free. This whole question is a big example of the health interests and the corporate interests colliding. And the corporate interests winning, in a climate where people want an easy fix and a (false) promise that they can have anything they want that mirrors what they had in their pre-celiac world.

    2. I’d have to agree with Ivan here. I’m Irish, but have lived in Germany for the last 13 years. Growing up gluten-free was not that much of a problem. The Coeliac Society of Ireland have been doing great work for years. Their “bible” of certified products was a life-saver for my mother when I was growing up. Never had to put up with holey bread, either. Just bread that disintegrated when you touched it 🙂
      Now we have EU-wide rules on food labeling where all main allergens MUST be listed on food packaging. And almost all manufacturers print any allergens in bold, including gluten, nuts, dairy, egg, soya, shellfish. And many also state “may contain traces of….”.
      GD, if you want to get mad, try directing your ire towards the FDA and politicians. It seems to me, from some of your posts, that US food safety standards suck, and that “big food” can get away with things like “gluten-free” Cheerios. This is one reason why I’m worried about TTIP, the planned US-EU free-trade agreement that is being negotiated in secret. I don’t want our good consumer protection standards watered down for the sake of Reallybigamericanfoodcorp Inc.’s bottom line.
      OK, rant over! Thanks for the chance to vent some frustration. Now back to my cider 🙂

      1. ” Now we have EU-wide rules on food labeling where all main allergens MUST be listed on food packaging. And almost all manufacturers print any allergens in bold, including gluten, nuts, dairy, egg, soya, shellfish. And many also state “may contain traces of….”. ” -> I live in EU too, and some manufacturers do a great job, but, same as everything else, not a 100% are really careful!! In fact, when “may contain traces of gluten” is written, you can be sure that there IS gluten remaining (and not MAY). Secondly, a lot of manufacturers cannot know if there is, or not, gluten traces in their final product because of all the ingredients coming from they don’t know what facility. For fact : Haribo says one of their candy doesn’t share any other product, that all the ingredients are theorically gluten free, but, in small letters, add that they don’t know if the ingredients are, or not, cross-contaminated. And what do you get? A sick Elisa the next morning, wondering why, checking the website, understanding what happenned, and an UE legislation totally useless. An other example : sometimes, I eat an italian brand of pastas sauces. They are labelled, and though the list of ingredients isn’t short, I’m not sick with them. One day, I ate potatoes with a little of a sauce that I just bought. 5 minutes later I was sure something wasn’t going right. In fact, what I bought was a sauce of that brand I trust, but this one wasn’t labelled and I didn’t check. There was NO MENTION of gluten traces anywhere though! This brand is OK when labelled, but the others sauces are contaminated and do not mention possible gluten traces! Next day I even had sores in my mouth… Same with lentils, no mention of gluten traces, got sick, and when I called the manufactory they explained to me that “yes, we use the same machinery with wheat and other cereals”. Those are some examples of the mess of this UE law. I prefer not thinking about celiacs who trust this law and trust manufacturers to mention it everytime the food is contaminated. Manufacturers can write what they want on their product if their consider that there is no risk or low risk, but they are not to be trusted (who is there to check if every product doesn’t indeed contain any gluten contamination?). To me, that legislation in EU just makes it more confusing and made it harder for me to avoid gluten.

        1. Yes, I agree that sometimes legislation makes it harder to know what is truly 100% gluten free and made in a GF facility. The cross-contamination thing isn’t labelled, and there are so many loopholes that allow companies to put a GF label on things now, so it is harder to tell what is really going on. Because they don’t have to put “processed in a facility that also processes…” to include gluten specifically we have no way of knowing unless we call, check, demand, and investigate ourselves. (In the US they do put if there is wheat, but as we all know, gluten is found in more places than just wheat, and now with the gluten removed nonsense it is even trickier.)

    3. You make some good points. I think the issue here in the US, at least, is that any manufacturer can label their food gluten free with some batch testing results of less than 20 ppm of gluten. They can also label it GF without testing anything and just wait to be reported and investigated and fined. It’s a forgiveness-based, not permission-based enforcement system here, sadly. However, even under FDA labeling law, foods can be made on shared equipment or, as the Cheerios debacle showed, the next batch can be filled with gluten, and it can still be labeled GF if the aggregate testing revealed less than 20 ppm. There are a few independent testing groups that certify products as GF and have standards that are much stricter. Most of us probably trust those. Certified GF is VERY different then a company-branded “gluten free” on the side of a box.

      Gluten Dude’s point, as I understand it, is that society is trying to science us out of CD and the GF lifestyle. Whether this is good or bad, is debatable. Still, the industry openly working hard to use the cheaper more readily available gluten-filled ingredients to make GF food. I’d argue that is because if it can find a way to use cheaper wheat to make GF food, it increases profitability and market reach and reduces overhead. We all know it’s hard being GF. Many individuals would love to return to normalcy, which in Western nations, is eating gluten and lots of it. There is a clear economic reason (not a conspiracy) behind researchers pursuing medicinal therapies for CD: the prevalence is growing and there is currently no drug to treat it. Even though the GF diet has proven effective and feasible for most, modern medicine relies on primarily drug-therapy, not dietary intervention. (That said, I do see value in a pill that would mitigate effects for when you accidentally eat gluten, but I highly doubt most people would use it that way)

      As for gluten-removed, there was a study recently,, that found that gluten-removed wheat products, when eaten by Celiac disease patients, still caused intestinal damage. While the patients didn’t report “getting sick,” when biopsied, they had villous atrophy. That right there is why I will avoid any gluten-removed or gluten-reduced products. While they claim to be safe, usually due to batch testing at <20 ppm, few tests look for the less obvious but most serious symptoms: villous atrophy. This study indicates that current gluten removal processes are not Celiac safe.

      As one person remarked on here, those of us with CD can eat 90 percent of what God created, and that is a blessing. I could not agree more. Personally, I don't eat processed foods like cereal, bread or GF alternatives. The most "processed" food I will eat is the quinoa or rice that comes in a bag at the store, butter, or milk that has been pasteurized and bottled. I eat a hybrid Whole 30-SCD-Paleo diet and it works very well for me. I do occasionally eat out and realize that puts a wrinkle in my GF whole-food diet. But when I do, I look for the fresh, whole options on the menu like grilled fish with veggies and talk to the staff to make sure it as safe as they can make it.

      While how I eat is a personal choice and I don't expect everyone to do the same, I also believe most of the problems we Celiacs have with GF food are the result of companies seeing the demand for GF food, and trying to cut the corner as closely as possible to still be able tap the market without having to invest in costly, certified gluten free ingredients to ensure it is indeed Celiac safe. And from companies trying to cater to the median, the half-way between the person who chooses to be GF because it's trendy and the Celiac Disease patient.

      1. Kate, I agree entirely. Like you, I eat only fresh naturally GF fruits and veg. The most processed I’ll go is the whole grain chickpea, millet, or sorghum flour I get from a dedicated GF company. Or quinoa from a dedicated company in a certified bag. And I never feel deprived or at a loss – there is so much we *can* eat! Cooking is a great adventure, and I love it. No need for the processed nonsense, and much less risk of the dangers that come with contamination or engineering of food. Yes, we make a personal choice to eat like this, but it is not a painful one. It is a happy one, one that keeps me healthy and safe with my celiac disease. What a blessing it is to be able to eat so well.

        I think you hit the nail on the head with companies trying to cut costs and cater to the demand without making an investment in the infrastructure to make GF products truly safe. Falling to the middle or the bottom means we all suffer because of the willingness of many to settle and their frantic desire to reproduce old eating habits/diets with an engineered GF version. What they don’t see is that being truly safe as a celiac may have to be different, but that does not mean it is bad. In fact, it is pretty amazingly good !

      2. Very well said Kate. This Gluten Removal / Deglutinization process does not sit well with me at all. If it is accepted by the regulators as “safe” then I imagine it will spread. Shar are now using gluten removed starch in at least one of their lines. At the end of the day food company’s are in the business of making money, most have no real interest in our health. My son (8) and daughter (4) both have Coeliac disease and as their Mother I feel the enormous weight of keeping them safe and healthy. Even with the tighter labeling regulations here in the UK I still feel concern allowing them off the shelf proceeded GF products. For the most part we eat a very natural plant based diet with added fish & some meat. My daughter also appears to have issues with dairy so I have had switch to a DF alternatives which suit us. I have spoken with many Coeliacs and parents of Coeliac children and I am constantly astounded at their ability to effectively blindly follow the Cross Grain symbol. If it has the symbol we let them eat it. I know this disease can at times feel overwhelming, especially in the beginning but isn’t life long wellness worth the efforts of reading labels and doing a bit of background research on company’s you buy any proceeded foods from? A lot of these very lovely people don’t want to acknowledge that often a person can be asymptomatic after ingesting a small amount of Gluten. The damage is being done silently inside. This is what I worry about with my children. They have a long way to go to reach what I hope will be a ripe old age. I want them to get there in as healthy a body as possible. If that means we have to make time to bake every weekend for the rest of time so they can have safe sweet treats then so be it (hey, they are also learning to look after themselves and to cook and bake right). We do also have our part to play as consumers. If we buy these potentially high risk items then manufactures will continue to make them. Stop and potentially the demand disappears followed by the product. I appreciate buying GF items is expensive (especially from the smaller producers who can’t produce in bulk but who do often seem way more driven to provide a properly tested product than the bigger boys) but we do need to do our part to help protect these wonderful ethical smaller company’s otherwise they will not survive. All we will be left with is the choices offered by the Big Boys who really only care about their bottom line and not consumers health. I have found to be a good resource for Coeliacs, especially in the beginning but I do have my concerns about some of there endorsements – the Pizza Express chain being one of them. I don’t know, it’s all rather still a minefield out there.

        1. So well put. The his Gluten Removal / Deglutinization process is truly scary to me. I hate the idea of it being seen as a panacea and accepted in the mainstream – the spread will be difficult to contain. And especially frustrating when it doesn’t have to be this way. There are so many naturally GF foods to eat, fresh grown as they come, without having to be a servant to the food companies out to run their businesses and make money.

          One can never blindly follow in cases of health – decisions have to be so carefully considered and researched from all angles. Especially when, as here, there is so much deception (by way of partial information, loopholes, etc.) in play, as celiacs disease people and parents/family of those with celiac disease just following a label or symbol is a recipe for disaster. Verification and real understanding of what is going on is key. As consumers, we have quite a bit of responsibility for the current state of affairs, and it is a rotten state. As you say, not only is there the immediate suffering but also the internal damage over the long term. Taking time for our health, and cooking from verified whole fresh foods at home is an investment we can’t afford not to make.

    4. I suppose I take issue with the science. The commonly used test doesn’t accurately reflect what happens in our bodies with incomplete proteins , and I understand it doesn’t really work well on fermented products. I was in Germany recently, which I understand has the same requirements as the rest of the EU member countries, and a beer with barley was sold as gluten frei. I was gutted.

    5. You are too trusting. New Grist beer is certified and I know for a fact it gave me symptoms several times I drank it. That’s one reason I brew my own now, using the same malts Ghostfish uses.

  9. Well said. Tried Cheerios, got sick, will not do that again. I never eat anything made in a shared facility. Would love to find oats that are done right. Any recommendations? I hear Bob’s Red Mill uses the sorting method now. Is that true?

      1. Shelley, I contacted Bob’s Red Mill, the are not using the “new” method. They have dedicated facility, and equipment. Bob’s are readily available and let’s please not stop other’s from using their oats. They are a mainstay for me.

        1. This is untrue. Bob’s Red Mill has publicly acknowledged they are using mechanically and optically sorted oats, not purity protocol oats. Someone is sharing misinformation if they told you otherwise.

          There is a list of purity protocol oat suppliers on Gluten Free Watchdog’s site. You don’t have to be a subscriber to view it. BRM is not among the companies using clean oats that are safe for those who must eat gluten free.

          1. It’s not that simple. Some of their growers use optical and/or mechanical sorting, but some use GF production techniques (not growing oats in rotation with gluten-containing grains, possibly other measures). They also run GF oats through a “cleaning” process, which is almost certainly “mechanical” (I doubt that they’re hand-sorting). (At least one processor– GF Harvest– runs their purity protocol oats through a cleaning process, so that isn’t an objection.)

            That said, I’ll stick with one of the processors on the GFW list. And I hope Bob’s Red Mill can eventually join the list.

            1. I’m not sure what you mean “it’s not that simple,” Dick. Could you elaborate? Purity Protocol is a specific set of procedures that must be followed which includes . Mechanically/optically sorted commodity oats not grown under purity protocol, such as those being used by Bob’s Red Mill are quite different. I got a little lost on the comparison to what is being done by Bob’s Red Mill, Cheerios, et al and what GF Harvest does in growing Purity Protocol oats. Help me understand?

              Here’s a link to how GF Harvest inspect their harvest, which is very different from the sifting technique companies are using to mechanically/optically sort commodity oats.

            2. Sorry, I have a tendency to elaborate, which I guess in this case I shouldn’t have suppressed. (I’m working here from the information in the Gluten Free Watchdog (GFW) site.)

              Purity protocol, as far as I know, does not have any organization that has established a definition of precisely what it is.

              For example, GF Harvest (GFH) oats are “planted only on fields that have not grown glutinous grains for at least two years”. Montana Gluten Free (MGF) oats are “planted only on fields that have not grown gluten grains for 4 years”. Avena Foods (AF) says “Fields used to grow gluten-free oats are [r]equired to follow specified crop rotation protocol”.

              Another example: AF says that “Fields used to grow gluten-free oats are [s]urrounded by an isolation strip”. Neither MGF or AF say that they do that.

              GFH and MGF talk of rogueing, but AF does not.

              The combines used by all three may be or have been used for harvesting gluten grains, but have been cleaned, inspected, etc. We trust that they’ve been thorough.

              Gluten testing protocols vary among the three suppliers mentioned.

              That is not simple.

              You said that “Bob’s Red Mill (BRM) has publicly acknowledged they are using mechanically and optically sorted oats, not purity protocol oats.” Here’s a quote from the BRM website:
              “Oats require special care to ensure that they are safely free from gluten. Bob’s Red Mill only sources from oat suppliers who are committed to practices for eliminating the presence of gluten. Our suppliers are innovative in controlling the presence of gluten by either avoiding crop rotation with gluten containing grains or using optical sorting technology to remove grain containing gluten. Regardless of our suppliers’ chosen methods for meeting our gluten free specification, we require that each lot is tested and confirmed gluten free before authorization for shipment to Bob’s Red Mill. To ensure that they stay just as gluten free as the day their seedlings sprouted from the earth, we test each batch in our quality control laboratory when they arrive from the farm, during production and once again after they are packaged in our dedicated gluten free facility.”

              I contend that some of their oats may qualify as purity protocol oats (I don’t have enough information to be sure) and others are clearly not. They clearly include some carefully produced (maybe even satisfying some definition of “purity protocol”) oats. So I think the “not purity protocol oats” part of your statement is misleading. It’s not that simple.

              The GF Harvest page you linked to does not describe how they “clean” their oats. This is certainly at least mechanical, and may even involve optical sorting to remove dirt, weed seed, etc. I don’t think there’s anything wrong with mechanical and optical sorting, but I don’t think using it with commodity oats is as good as using it with purity protocol oats.

              I have biopsy-confirmed celiac disease and have eaten substantial quantities of BRM GF rolled oats, oat bran, and oat flour with no ill effects. This suggests to me that their procedures are working. (That said, I still order from MGF because I trust their purity protocols, like dealing with a smaller company, and find the quality of their rolled oats to be better– they grow “hull-less” oats, so their rolled oats never have any hulls in them.)

              I think something got lost in your post where you say “Purity Protocol is a specific set of procedures that must be followed which includes . Mechanically/optically sorted commodity oats not grown under purity protocol, such as those being used by Bob’s Red Mill are quite different.”

              I didn’t mention Cheerios (or General MIlls) at all. I don’t trust Cheerios, but I won’t elaborate now.

            3. Avena is credited with creating what qualifies as purity protocol, which was a set of steps agreed upon by a group of dedicated gluten-free growers. That’s all interesting to reflect upon now, considering Avena has announced they are no longer a purity protocol oat supplier and have switched to using some commodity sorted oats.

              I’m not sure we are talking about the same sorting/cleaning methodology. There is a difference in sorting/cleaning purity protocol oats for dirt or weed seed and commodity oats being sorted/cleaned for gluten contamination. I think it is generally agreed upon that sorted oats means commodity oats being sorted to remove wheat, rye or barley.

              As far as BRM, I don’t mean to be misleading in saying that they aren’t selling purity protocol oats BUT I do think when combining purity protocol oats with sorted commodity oats, it would be wrong to say they are purity protocol oats. So what is that? Partially safe oats? Part purity protocol, part possible contamination? I’m not sure how that should be labeled. I do know that labeling is becoming hard to decipher. We need a cleared oat protocol, an oatocol if you will.

              Thanks for the engaging conversation, Dick.

            4. Re BRM:
              “So what is that? Partially safe oats?”
              I’ll answer that with another quote:
              It’s “like a box of chocolates– you never know what you’re gonna to get.”

              I don’t know how BRM handles the oats in their GF facility. If they mix incoming batches that have tested okay, that’s one thing. If they process an incoming load all the way through packaging as a batch (which would give them much better tracking capability), then you might get all optomechanically separated oats or all carefully farmed oats; but the latter may not be from farms that have followed all of what you might consider to be a proper purity protocol. So as I see it, they might as well all be optomechanically separated oats.

              But another consideration is that their growers know they are going to have to pass a gluten content test to sell their oats to BRM, so even those who use optomechanical separation my also use some of the purity protocol techniques like not planting their oats in a field that has been used for gluten grains within the last some number of years.

              Yet another consideration is that it’s very difficult to determine contamination level of whole grains, short of grinding the whole batch and thoroughly mixing– very thoroughly– before testing. But that’s not something one can do for rolled oats.

            5. I need to clarify on my last comment: Avena is still purity protocol, it is Cream Hill/Lara’s which is not. And those folks were instrumental in developing the gold standard of purity protocol oat production. Sorry for the confusion on my end.

    1. Are you familiar with Gluten Free Watchdog? It’s a subscription-supported organization that tests a number of common products every month and makes reports of those available to subscribers. But on the website, there are some things that are available to non-subscribers, and I believe the article “Oats produced under a gluten-free purity protocol: Listing of suppliers and manufacturers” is one that is. Go to, click on NEWS, and scroll down to that entry (posted October 26 2015).

      If it turns out that it’s only available to subscribers, well, it’s a good organization to support if you can afford it. They do some other things beyond just testing commercial food products for gluten content.

      Before I subscribed to GFW, I learned about Montana Gluten Free, and I’ve been a customer of theirs for a couple of years now. And recently in another blog the small company GF Harvest was identified as a supplier of purity protocol oats. You can order from either on online, and both are available through Amazon.

  10. Yes. Yes, and YES!!!
    Though I think we are just fooling ourselves to think most celiacs actually want to take control of their own health by being vigilant and saying “No!” to products that may be harmful. It is my experience that the vast majority of people with celiacs disease just want it to go away and are not interested in changing their lives to be healthy. They want to take a pain pill, or smoke some weed and call it fibromyalgia or chronic fatigue. Call it anything but celiacs. Anyway…I don’t buy gluten-free crap. I cook everything from scratch because I don’t trust anyone to care about my health as much as I do. Just a few minutes ago I received an email in response to my asking them to clarify what they meant by “native gluten”. The customer service person wrote, “We’d recommend trying a small amount of the product to confirm you have no issues.” Well, I recommend SHE try standing in the middle of the freeway at rush hour to confirm that she has no issues with traffic! Thanks, Gluten Dude for letting me rant. You Rock.

    1. “I don’t trust anyone to care about my health as much as I do.”
      Yes. Absolutely yes.
      And I love your image of your reply to the customer service person! (BTW, I also think you’re right that many people want a shortcut for celiac management, just as they do for so many other things in life. It is a sad state of affairs.

  11. Colette (Sullivan) Ledoux

    Your post is spot-on!

    But there is a “but”…. Mathematically speaking, there are very few of us who have been certified celiac, and we are not a large enough group to explain the exponential growth in the gluten-free “lifestyle” movement. Therefore, without doubt, the majority of those who are buying these products, and propelling the gluten-free trend forward, may well have an issue with gluten intolerance, but do not have the need to avoid cross contamination as a matter of medical necessity.

    Celiac disease is still considered a “hidden” epidemic because the rate of diagnosis, although improving, remains abysmal. It’s a real quagmire, when gluten-free products are widely available – but the true celiac is completely left-out of the loop.

    Until more people are properly diagnosed and demand safer options, I think that apart from doing as you’ve suggested and boycotting these products, not much will change – which is most unfortunate…

    1. Indeed!
      Things are going to be this way until more people are tested and diagnosed. Until then we will always be lumped in with the bandwagon dieters.
      It’s a shame that the treatment for our disease is also a fad diet.

      1. Some intolerants people are not classified in the “celiac category” because they couldn’t have a proper diagnosis (and there are lots of reasons why lots of individuals aren’t diagnosed). Though they are “only” intolerant/sensitive people, some of them still have to carefully avoid cross-contamination and some GF brands, and live just as celiacs do to not get sick. I agree that the diagnosis is a major problem, but because you’re not diagnosed as celiac doesn’t mean cross contamination doesn’t make you as sick as someone medically diagnosed. You can be in the “intolerant” category because of the lack of diagnosis, but still be as sensitive as a diagnosed celiac… I don’t think that confusing them with fad dieteters is the right thing to do.

  12. You are spot on! And while there are times I absolutely HATE that I’m celiac and all I want to do is eat a raised, glazed donut, I remind myself that it could be a whole lot worse. All I have to do is simple – DON’T EAT GLUTEN. It’s that simple.
    Thank you for this blog – this is my new favorite!

  13. The inherent challenge remains that most people love convenience and Celiacs are no exception. Until consumer behavior changes fundamentally with basics such as more home cooking, less processed products, it’s our own fault.

  14. I am with you 100+% ~ if that’s possible! I share your thoughts at my celiac meetings and in my correspondence with my support group. But you can only take the horse to the water; drinking is his choice! Keep ranting, Dude, because it’s bound to sink in somewhere, sometime. Many want a short cut for everything. WE have to do the difficult work of keeping our bodies safe! I was “thrilled” when I got my diagnosis, because — after 55 years of being considered a hypochondriac — I finally had an answer. I won’t stray from a genuine GF diet, because I am soooo happy to have an answer and to feel better. And I will continue to “preach” this info as long as I am alive!

  15. You’ve stated the truth. Those who will be angry, apparently, can’t handle the truth. What should make them angry is all of those who keep lying to us & don’t care if they hurt us as long as they get our $$$.

  16. I say this every time I comment. We’re not celiac, but we do have food allergies, and I think this post is applicable to ALL of us!! Thank you for being so frank, so honest, and so real.

    I do snort every time I see the “gluten free” on the Cheerios box…..because ya, it’s so not. Anyway….

    Keep up the fight Dude!

  17. I agree with you, Dude. I stick with the companies I can really trust, and avoid anything made with any of the prohibited grains and/or non gf-certified oats. Too much risk of contamination, and there are some companies out there that do make completely gluten free items in gluten free facilities. Why would I not give *them* my money?

    1. Exactly – I want to support companies that do GF right, making completely (and truly naturally) GF items in dedicated GF facilities with dedicated GF suppliers. Why would I get my dry lentils from another company that cuts corners when I can get them from a place that puts time, money, and effort into keeping me safe? It makes sense to support the company that supports my interests. Doing otherwise just creates more of an incentive for businesses to pay lip service to celiac needs and create more processed, unsafe product.

  18. I was diagnosed with celiac disease 10 years ago (at age 30) after a lifetime of suffering while doctors put me on increasingly heavy psychiatric medications. After going gluten-free, I was for the first time able to hold down a job long term, go back to school to finish my degree, followed by finishing grad school. I was able to volunteer in the community, exercise, and enjoy vacations rather than just feeling miserable in whatever new city I was in.

    That was before gluten-free food was readily available in every grocery store. The gluten-free fad seemed like a godsend to me. Suddenly, I was able to eat bread, pasta, cookies, and pastries that I hadn’t painstakingly and expensively made at home. I gained too much weight, most of which I have managed to lose, but something else happened too as more and more “gluten-free” food came on the market. I got sick again. My celiac markers, while not terrible, indicate that I am still being exposed to small amounts of gluten, probably from cross-contamination.

    I’ve been out of work now for about five weeks on FMLA while my doctors are attempting to get my symptoms, which I won’t describe here since they’re gross and you all know what they are, under control. Thank God that I’ve been with my company for nine years, and high performing at that, so I know I’ll have a job to go back to. Before my diagnosis, I’d be sick for a week or two, run out of sick time, and lose my job, and because that happened at about every job I had, I didn’t stay at most places long enough to qualify for FMLA.

    Well, this turned into far too long a post for my intended point, which is that I’m discovering that some of the “gluten-free” food I eat is not gluten-free, as a result I am dreadfully ill, and have returned to those days of 10 years ago, where I didn’t put anything in my mouth without being 100% sure where the ingredients come from, how they are harvested, how they are processed and shipped, and that they are, in fact, gluten-free.

    1. ” I didn’t put anything in my mouth without being 100% sure where the ingredients come from, how they are harvested, how they are processed and shipped, and that they are, in fact, gluten-free.”

      Yes! So much agreement on this. It takes effort, no doubt, but it is worth it to have a life that is healthy – and free from the pressures/strictures of companies that do not have our best interests at heart. And so much is naturally GF in its raw, fresh, unprocessed, whole state, we really have a world of options.

  19. “Real” gluten free beers need better distribution. Why can’t I find them at most supermarkets, restaurants, bars and pubs. I went on vacation last week and couldn’t find a place that sold Coors Peak (not my favorite BTW). Omission is everywhere.

    1. A distributor in CA went under, and I’m looking to piggy back on a licence as a partnership/joint project.

      I went to the Ghostdish tied house in Seattle, and it was great beer. Capitol Cider rocked my face. It can be done! And, well!!

    2. A distributor in CA went under, and I’m looking to piggy back on a licence as a partnership/joint project.

      I went to the Ghostfish tied house in Seattle, and it was great beer. Capitol Cider rocked my face. It can be done! And, well!!

  20. I liked most of Ivan’s comments above. I don’t know what L intended by “big pharma can make tons of money from sick-celiacs”, but that is a true statement. I didn’t perceive L’s comment solely as coming from a conspiracy theorist. We must individually analyze motives of companies / organizations upon which we rely for the sake of our own health.

    My Mom was dying from Stage 4 lymphoma and the chemo was quickening her demise to the obscene cost of $35,000 per month. After I concluded gluten was the direct & only culprit for her lymphoma against her Dr.’s comprehension, stopped the chemo because it was killing her for certain and instituted the gf as possible diet for her, Mom is not only completely healed from lymphoma (prior 89% cancer cells in her bone marrow and tumors in her lungs and abdomen) but she is thriving at 80 years young after almost 3 years. I saw an oncologist from her clinic yesterday (who is also a good golf buddy of mine) and he still finds it unfathomable that Mom is completely healed from such terminal cancer and me from 3 types of cancer, 5 retina surgeries, CD and DH solely by not ingesting gluten. I know that doesn’t work for everybody but it is working for us. Gluten, autoimmune inflammation, cancer, wash, rinse & repeat. Big pharma is $35,000 per month less rich only from my Mom’s gf eating. My problem is that there is so very little real interest in disseminating this info to the cancer patients it may possibly heal specifically and the public in general because there is diminished pharma money when we eat healthy real food as opposed to processed food and take drugs for every problem. Some people want that convenience and those are the people big pharma are serving. The people who need the info of how to be healthy by taking as few drugs as possible are the ones we are serving, which is why I take the time to share what has worked for us even if it only helps one person.

    The pharmacy companies like the food/seed companies are “for profit” businesses and it’s safe to conclude, as a company, their only motive is profit – not making the world healthy. Individuals working for pharma companies may be doing so for altruistic reasons but not the companies. GF orgs still need $$$$, whether by profit or gifts.

    Individuals, celiac or not, need to be as informed about their individual health as possible and take no advice from their health care professionals as infallible. After 32 yrs of lawyering I can cite more examples than anyone wants to read. Pharma companies calculate a percentage of costs for people who will be damaged by their drugs – it’s math/statistics – their drugs help some and harm some. Our individual goals should be to be as informed as possible while making our own personal wise decisions regarding food and pharma products so as not to become a negative stat by ingesting foods and/or drugs which are specifically bad for us individually. We should simply correctly analyze the motives of companies / people / organizations and make wise choices for us indivually accordingly, which is not imagining conspiracies around every corner. Correct information and discussion is key and I appreciate GDude’s gallant efforts!

  21. AMEN!

    Let’s not forget that we allowed big business to whittle away our FDA definition, and we have yet to organize around Rx inactive ingredients and coverage rules.

    Actually, we have yet to constantly organize!

  22. Love this post. Well said and written, thank you.
    I am NOT celiac but I AM very sensitive to gluten (as, I am sure you know, most people are, they are just in denial).

    I do NOT buy or eat gluten-free “products” because I have discovered that meats, fish, vegetables and fruit do not have gluten. THAT’S what I eat. How weird, right? You can buy them straight from the farmers and farmers’ markets. I realize not everyone is used to farmers’ market (it is an awesome habit to develop though, warning: addictive but perfectly safe!) . But, guess what, same stuff (not as fresh but same roughly) can be bought in a store. Weird concept, I know.

    1. In my personal opinion, there is a spectrum of celiac. Doctors are so bent on evidenced based medicine these days that they simply do not recognize that some form of celiac can occur without all the “classic” signs. Too many people like you choose to follow the same meat, veggies, fruit diet to have it be all “in their heads”. I went 40 years with doctors telling me it was “all in my head” when I clearly have obvious celiac. If someone as obvious as me can “slip thru the cracks”, then others without really obvious signs can too. I consider “sensitives” just as dangerous as celiac. Medical science is a PRACTICE. They have yet to get it perfect.

  23. This may be out there someone in your blog already, if it is, I haven’t seen it, so I apologize, but having a list of those companies that really care about the celiac community would be really helpful to have. I’m the celiac in the family and don’t eat processed foods, but my family eats GF at home for me, and I do buy them GF food and treats from time to time.
    Also wondering, if these items that claim to be GF, but aren’t truly, such as Cheerios, have the same CC risks as nonGF items.

  24. yeahhhh, that “gluten removed” beer ain’t coming anywhere near me. same with any ‘shared facility’ product.
    I’m 42, wasn’t diagnosed til my mid-20s. This disease is hell.

  25. When I found out I was Celiac of course I did what everyone tells you not to do. I cleared the shelves of processed GF food. Since diagnosis in December I have gained 25 pds. I was eating processed food that I would not have touched before. I was so afraid I would starve. Saw a Nutritionist a couple of weeks ago and she said stop eating that processed GF food as it is high in fat/sugars and very low nutritional value. I started eating better last week and even went back to the gym a couple of times. Scary that I went from size 12 to size 16 in 3 months. I had zero energy and was sicker then before on GF Processed food. I have started cooking more as who wants to live half dead and being cross contaminated often as not all manufactures in Canada have the same strict limits.

  26. I agree with most of your points, however, I do want to make mention that the wheat starch used in the Schar croissants is certified gluten free. The starch is only what remains after pretty much everything else is removed. They test it to meet FDA gf standards – I asked. Apparently its been used in Europe for years safely.

    All I have to add is – go Aldi! I love their products AND their reasonable prices AND their clear labels.

    1. People in Europe were purchasing from the USA at their own costs 20 years ago BECAUSE they failed to improve on the “wheat starch” safe foods.

      1. And in Europe we also have dextrose and glucose syrup which, even when made from wheat, are allowed in GF products, and you find them in the majority of products… Here, wheat starch is just a part of the problem.

  27. A man after my true heart!!! Thus why I’ve always felt like an outsider at Gluten Free meet-ups. EAT REAL FOOD, PEOPLE!!!

  28. Well, I am on day 7 of worst glutening in 4 years. A restaurant is only safe if everyone follows protocol. If I eat it and get sick, I take responsibility. I won’t ever trust the manufacturer or restaurant again. I do great when I stick to my own food. I don’t use much processed GF because it sucks and is a waste of money, and I don’t need Schaar to put sawdust in my bread, I am a Celiac, not a termite. Thanks GD, as always for keeping real.

  29. I have been preaching this for 20 years now. The only things that we true Celiac’s can do is to purchase only fresh (meat, veggies, fruit) and learn to cook for ourselves from scratch.

    I get compliments on my gravy all the time. Some even ask what “package” I use. LOL I offer to let them come early (the day before) next time and learn how to make REAL gravy like our grandparents did.

    1. Cheryl, I love this and am right there with you! I am so thankful that I know how to (and enjoy!) cooking from scratch with fresh foods. I can feel good about what I am putting in my body, have no sense of deprivation, and get some really nourishing, healing food out of it. Just my view, but I think some of the problem Gluten Dude describes comes from people who are trying to recreate pre-celiac habits in their post-celiac world, and mourning what they can’t do anymore. But there is a whole other way out there to explore and enjoy.

  30. I totally agree about these companies and their less than sterling practices. Clearly they don’t give a damn about our health, just our money. I made the mistake of eating Cheerios once, and that small bowl was enough to convince me that my trust was misplaced. I am glad that someone is speaking out against the lack of quality at Udi’s. It used to be a good product, but it got so bad that I haven’t bought any for years. It is a shame to hear about Schar going down the path of using ingredients that will make most of us very ill. I won’t be buying more of their products either. It’s a damned shame that there are few bloggers honest enough to speak out against these companies and their practices. Some of them get income from pop up ads, or they get free products, and that’s fine for them, but I wish they would put up disclaimers once in awhile. Something other than just the to note they are getting free products. All the freebies and advertising dollars are not worth it, if they lead even one person to believe that questionable products and practices are safe. Thank you for always being honest with us and giving it to us straight. It is depressing to know that some formerly trusted companies are going rogue on us. I make most of my own food now. I have spent too much time and money on substandard products . I think I am better off doing it myself, or going without. I have a very short list of companies that I trust anymore, and they are the only ones I buy from. The Cheerios thing really made me examine my priorities and my shopping list. Thank you General Mills for making me more cynical than I already was: you actually did me a favor.

  31. I have to agree that yes, the community at large has contributed to this mess. But also, bloggers like you who watched and said nothing, did nothing to get your followers to do something about this sooner has also contributed to this mess. Where were you when we were trying to educate everyone on what was going with Cheerios and how it could end up in this EXACT mess we are in now? You saw first hand what was happening with Cheerios at the source and you sat by for months before speaking up about the bloggers cheerleading for Cheerios. Why not call out the magazines and advocacy organizations who are shilling for these same companies doing us wrong? Why not share with your readers the companies doing it right? Where was your last when some of us were supporting a gf family farm who grows and produces purity protocol oats? If you want to be an advocate, BE an advocate. That doesn’t mean ranting on your blog. It has to be put into action. Something I see lacking here.

    1. Debi

      I don’t know where you’ve been but Gluten Dude has most certainly done all the things you are accusing him of not having done. I specifically remember his blog, posts and comments before and after going to the Cheerios factory. You need to do some research before spouting off with criticism of which you have no knowledge.

      To not be a paid job or venture, Gluten Dude has exhibited more patience, resolve, care, concern, honesty, etc etc – I can easily go on – for those of us with Celiac Disease than any other person or health care provider with which I’ve interacted during my journey with this insidious disease. Bless your heart Dude to have to read such critical drivel as hard as you work and as much as you care about us.

    2. Hi Debi. While I’m all for constructive criticism, I do believe yours is a bit misguided. I was one of the first to rail on Cheerios when they announced they effed up. And I continued to harp on them for months. I’ve called out Udi’s and plenty of other companies. This is not my full-time job.

      1. Actually, you were the only ONE out of TEN who told us the truth about their processing facility from the start.

    3. Colette (Sullivan) Ledoux


      Your outlandish post is misguided, and uncalled for. Gluten Dude is not your whipping boy!!

      He isn’t getting paid to provide anyone support – he does so because he’s a decent, caring human being who has bent over backwards to support the celiac community.

      You my dear, have anger issues, and it appears this anger is being directed at the wrong target.

      Why don’t you start your own blog and follow your own advice by providing the answers you seek? And do so with no compensation for your time and energy!

      Shameful that you are too short-sighted to see how ignorant your comment is!!

  32. How dare you speak the truth? The thing with Cheerios though, millions of people buy them and always have. I buy them for my husband…who is not a celiac. So it’s hard to judge how many celiacs got on that band wagon, but from what I have been hearing, many who did get on have now gotten off. And Udis bread is still on the market because it is often all that is available in small town America. They had good distribution and cornered the market. In my town, once we had other choices no one bought it anymore.

  33. Gluten Dude, I completely agree. The number of companies I will trust to do dedicated GF right are few and getting fewer every day for just this reason. I won’t eat anything except fresh fruit and veg, beans from Edison Grainery (one of the few companies doing dedicated GF right, and with amazing transparancy in their testing results), and naturally GF flours like chickpea, millet, and sorghum from Amazing Foods, a dedicated GF company that is dedicated to keeping customers safe. There is so much out there that we *can* eat naturally, and it is delicious too. We don’t have to recreate our pre-celiac life to find joy in where we are now.

    Like you, I’m all for science but I don’t want companies messing with my naturally GF food or trying to engineer/remove/alter food to pander to the GF market. Do GF right, or don’t do it at all. It frustrates me when a previously “safe” company caves to the pressures of the GF craze and the profit lure to take these shortcuts or shady engineering practices to get more customers and increase profits. It *is* consumers’ fault for creating this demand and accepting such bad practices, and companies’ fault for taking such risks with people’s health – and it is on all of us to get to a solution so we can be safe.

  34. In Australia we don’t even consider oats to be coeliac safe. Ever. Over here bullshit GF stuff just doesn’t fly, and I’ve found (fortunately) that restaraunts are sympathetic to coeliacs despite the GF crowd. Shame it’s not the same there.

    1. I wish some of that thinking could come here! I can’t tolerate oats (even the “separately grown/hand sorted GF” kind) and it gets a bit tiresome explaining to people that while some people may seem to tolerate them, they are not safe for all celiacs.
      The claim in the marking (and sadly now some in the research community) is to find a magic solution/pill/engineering/removal process that can “cure” what they see as the celiac woes. We don’t need a magic wand! We don’t need to be “fixed” to have what “normal” people eat. And the food doesn’t need to be “fixed” either. As it is, the solution is already here – keep the foods truly GF, simple as they were grown. No engineering required to turn a sweet potato, say, that is grown in the ground, unprocessed, and prepared carefully in a dedicated space with dedicated cookware into a delicious really GF meal.

  35. Absolutely, truly.
    So frustrating. asking advantage of people who just want to feel “normal”…
    I stopped. Stopped eating and wanting over-processed crap, stopped settling for “Well this SHOULD be ok for you” at restaurants… found the truly GF-aware restaurants in town and asked some serious questions about prep…
    I don’t NEED that stuff.
    I a way – no one get pissed at me here, please… GF was the jumping-off for me to just stop eating crap. When everyone at the office is having birthday cake that’s store-bought from the supermarket, or someone brings in doughnuts or cookies or the latest crazy flavor of Lay’s chips to try… I figured it out. I’m not deprived. I’m not missing anything.
    I can have my good food and the treats that are safe for me – usually a little square of GF super-dark chocolate…
    But I don’t even *need* that.
    Because I DO need my life and my health.

    I’m not perfect… and I’m human… there is a beautiful GF and Dairy free bakery blocks from my in my town – I love them so, and about once every two months, I pop in and get a scone, or maybe a cupcake for dessert or a lemon bar.
    On my birthday I get a damn cupcake.

    But life is so much better… and the few things I DO want – gf crackers, for example -it choose very carefully and savor in moderation.

    I guess I’m just saying – thanks, Glutendude for expressing our frustrations publicly. You’re a warrior on the front lines, and I’ve a lot of things I didn’t even know after 14 pretty diligent years gf in the last couple of years or so subscribing to you.


    1. So glad to read your post. I feel the same way – not deprived at all! There is a huge difference between need and want, and quite honestly I don’t even want all that processed stuff, especially because I know it is like poison to me because of celiac. You are so right that we can’t settle for “this should be okay for you” and we can’t let ourselves slide into that ocean of self-pity and anguish over not being able to have something our whim might want in the moment. Yes, it may be frustrating in the moment, but life is so much better for it and there is so much we *can* enjoy to choose from. Making safe and informed choices, asking the tough questions and knowing when to say “this won’t work for me,” looking for the companies/restaurants that are truly aware and doing this right for us, that has a certain power in itself. They are out there and deserve our support.

  36. Haven’t gotten around to reading the other comments yet, just need to bang my head against the wall a little by myself first. Apologise in advance if I am just repeating what everybody else is saying.

    So, here (quite far North, and across the Atlantic Ocean from where most of you guys are) Schar is pretty much the only gf brand that doesn’t extensively use wheat starch. All the more local brands from Norway and Sweden are using it. Heavily. And now they’ve also started adding gf barley malt whenever possible…

    But then I glance at a pre-made-something from Schar and see the words “wheat free”, and I feel a bit less alone in the world. That matters. A lot.

    I am so angry and sorry to read that Schar is starting adding wheat starch to its US product line.

    No matter how gluten free the wheat starch is, there are people who can’t tolerate it. Because of the FODMAPs or whatever. This is known by the western medical community. What is also known is that people with coeliac quite often have problems (at least in the first months/years post diagnosis) with various food intolerances/issues including FODMAPS.

    Personally, I can handle (some) wheat starch without any problems. As far as science knows. But still, I don’t want to eat it. Why? Because I don’t want to associate the smell of wheat-based baked goods with food. Removing that link makes my life easier. Period.

    Of course, we all thrive on eating real food etc. But we should also be able to buy convenience food without an additional risk of getting sick. – just the same as everybody else.

    Sigh, sometimes I just wish for human beings to behave a little bit more decent towards other human beings. Instead of just valuing money (power or status) over people’s lives.

    Unfortunately, my wish doesn’t come true often enough.

  37. I agree 100%. Your post makes me want to cry, because everyone around me wants me to drink and eat every manufactured food which says “gluten free” but finally makes me sick. I’ve never been sicker since I eat gluten free than when I ate pastas made in a shared facility (at the beginning of the diet, when I didn’t realize how much it mattered every though the product is labelled).
    Personnally I don’t care if I WANT to eat “regular food” like anyone else, I just know that I NEED to eat safe products. They want to give us the more gluten they are allowed to, with the thinking that we want something like a “normal” life with lots of cakes and glutened beers, but what they do not understand is that the majority of celiacs CAN’T LIVE NORMALLY IF THEY KEEP POISONNING US [just give a look to recent studies about the celiacs who heal… not the majority]. We don’t need to eat as many gluten as we can everyday to feel “normal” : we need to heal to feel “normal”, and that means anything but what’s currently happening with gluten-free products.

    1. Elisa, I know what you mean about people around you seeing the label “GF” on manufactured food and then wanting you to try it. Arrgh! So frustrating. I know often they mean well, but the truth is that the stuff just isn’t safe simply because someone slaps a GF sign on the label. There are so many deeper layers to this. That’s why I won’t eat the stuff. I’ll be polite and say something like: thanks for thinking of me but this just doesn’t meet my medical needs, and I need to be safe so I’ll pass. And I find that as people see that I am comfortable, happy, and not feeling deprived when I eat the fresh, unprocessed, truly GF stuff that is good for me, they become more comfortable too and pressure me less.

  38. Elisa, I know what you mean about people around you seeing the label “GF” on manufactured food and then wanting you to try it. Arrgh! So frustrating. I know often they mean well, but the truth is that the stuff just isn’t safe simply because someone slaps a GF sign on the label. There are so many deeper layers to this. That’s why I won’t eat the stuff. I’ll be polite and say something like: thanks for thinking of me but this just doesn’t meet my medical needs, and I need to be safe so I’ll pass. And I find that as people see that I am comfortable, happy, and not feeling deprived when I eat the fresh, unprocessed, truly GF stuff that is good for me, they become more comfortable too and pressure me less.

  39. For whatever reason, I can’t see your reply GD, but a friend sent me a screenshot. First, stop using the defense that this isn’t your full-time job. I never said anything about your job or even insinuated that this was your job, but you have monetized your blog with ads and a donate button. You are receiving some compensation for the time you spend on your blog. Second, I think you need to look up “misguided.” You read my blog on the state of gf advocacy. Don’t blame me for not liking that you’re on the receiving end of me calling you out because you’ve dragged your feet or outright declined requests to help/share with your followers. Third, railing against companies is not advocacy. That’s pumping your fist in the air and getting your followers riled up. That’s it. It does nothing for our community. I used to follow you years ago, reading every post as it published. But reading rant after rant that went nowhere was a waste of my time. Here you are, still doing the same thing when we could’ve used your help with so many other things. I told you once before on Twitter that it would be more helpful if you educated rather than responded in anger. I worked with abused kids, there was a time to respond in that manner with them or those who were supposed to keep them safe, but not all the time. Maslow said, “I suppose it is tempting, if the only tool you have is a hammer, to treat everything as if it were a nail.”

    You can respond if you like, but chances are I won’t respond since I can’t see the comments and trying to get you to do the right thing seems to also be a waste of my time that I can spend getting my own followers into action on true advocacy. Something to think about from Henry Rollins: “I just love the idea of when you see a problem, you don’t leave it alone; instead, you make it your special project.”

    1. Can you contact me privately via my website? Let’s carry this conversation on off-line. I’m interested in what you have to say

    2. Yep, after reading Debi’s misguided comments and blog posts, I’d conclude that GDude appropriately used “misguided” and Debi should follow her own advice and review said definition:
      mis·guid·ed / adjective
      having or showing faulty judgment or reasoning.
      synonyms: erroneous, fallacious, unsound, misplaced, misconceived, ill-advised, ill-considered, ill-judged, ill-founded, inappropriate, unwise, injudicious, imprudent

      I don’t get one blogger coming on another blogger’s blog and chastising said blogger’s level of advocacy – to what depths will this sad world continue to sink. Why can’t GDude just advocate as he sees fit and let us enjoy his blend of blogging without being harassed?!?

      Two quotes for Debbie since she likes quotes:
      (1) From that rock of political correctness and social conscience, “People, I just want to say, can we all get along? Can we get along?” – Rodney King
      (2) “It does not matter how slowly you go as long as you do not stop.” – Confucius

      Please let GDude include a place in his advocacy for frustrated disease sufferers to come rant without being harassed – it makes them feel better and most likely their family and friends too by letting them harmlessly blow off some steam. People who don’t like rants can just not read that day … the good Lord knows GDude regularly mixes up his topics – the world can’t always be nonstop advocacy full of mermaids and rainbow colored unicorns.

      1. Just to be clear for any out there devoid of common sense &/or reading comprehension, when I said “Please let GDude include a place in his advocacy for frustrated disease suffers to come rant” that specifically includes GDude ranting as he deems appropriate on his own blog.

        I read last week where “animal rescue league” bloggers and organizations were complaining about the competitiveness and “back biting” (pun intended) among themselves because some really cared for the poor animals and others were just in it for the glamour, for crying out loud.

        OK Dude, I’ll go back to hiatus status & check in on you from time to time without commenting. Luv ya man & what you do & how much your full fledged advocacy has helped improve my health. Good luck … You’re obviously going to need it.

        1. It’s all good Hap. I appreciate your words.

          Deb…let’s take this one at a time:

          “you’ve dragged your feet or outright declined requests to help/share with your followers.”

          I have no idea what you are talking about. Details would be helpful.

          “railing against companies is not advocacy. That’s pumping your fist in the air and getting your followers riled up. That’s it. It does nothing for our community.”

          I’ve written 596 blog posts. They are not all rants. If that is the way you look at it, that’s on you, not me. I am not one to toot my own horn, but how about these results of my advocacy:

          – Got Disney to remove an episode making fun of gluten free before it aired.
          – Got NBC/NASCAR to change their Super Bowl ad before it aired.
          – Got Lucy’s to change their packaging.
          – Got Bart’s to change their advertising.
          – Helped put a few scammers out of business.

          There’s more, but you get my point. Don’t like how I do things? I respect that. Calling me out and saying my approach does nothing? Utter bullshit. I’ve got a strong following because of my advocacy and how I help people.

          1. Deb…I just read your post about advocacy. We speak the same language. I simply don’t get where you are coming from here. Like I said, feel free to email me privately and we can discuss.

            In regards to your Cheerios petition (which I didn’t know was you until this am), for the most part, I’m not a big “petition” fan. I only use them when I feel the word MUST get out and our voices MUST be heard. There was no way GM was going to change the way they sorted their oats. They spent years and millions of dollars on the process. Me not spreading the word about the petition is not me sitting on my ass. No one has called them out, privately and publicly, as much as I have.

            Again, I don’t love the way everyone in the community advocates either. But please don’t lump me in with those that are bought out by the big companies. That ain’t me.

  40. I needed to read this, even though the truth is pretty painful. I was diagnosed about 6 weeks ago and I’ve been going through the grieving process (lots of anger!) and buying every product with The words “gluten free” on the label. (Denial?) You’re right though: I’m doing myself (and other celiacs) a disfavor. Time for another pantry clean out.

  41. I totally agree! I am french I was living in a little town in Norway when I was diagnosed with Celiac disease 4 years ago, I immediately stopped eating gluten and because I couldn’t find any “gluten free” brand in that little town I ate only fresh vegetables and fruits from the market, milk, fish and some meat. I was super healthy a year after my diagnose, with no symptoms the whole year, my blood test results and endoscopy were very good a year later.
    Now that I am in US since a year (that’s why my English is so bad 🙁 sorry for that) I was very happy to have all these “gluten free” brands so I bought Udi’s and some “gluten free” cereals, Nature’s path organic gluten free oats and granola, but I have been sick so many times! At the point that now I was diagnosed a month ago with Hypothyroidism which is another autoimmune disease related with Coeliac disease. It could be just a coincidence but I really believe is because I have been eating gluten without knowing!
    My husband and I are so disappointed and frustrated with the food problem in US that we are seriously thinking to move to an other country to be safe! I am very scared now about my health. I don’t want to be diagnosed with another disease because of the quality of products that I eat and the lies of the manufacturers that don’t care about it.
    Now I am scared even with the fruits and vegetables that I buy in HEB because of the pesticides… I realize that I am becoming paranoid !
    But beside my paranoia I really believe people with Celiac disease we have a serious problem with the food that we can get here in US.

  42. What would happen if we spammed #NoCureNoChoice on anything saying it’s a choice or anything that it would be useful on?

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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