When Gluten Free Isn’t Gluten Free (or is it?)


After Bunky’s celiac diagnosis, our nutritionist at Columbia’s Celiac Center in New York City taught us how to make sure the food we were buying for our daughter was safe. She emphasized reading labels and told us that as long as the ingredients didn’t include wheat, rye, barley or oats (unless certified GF) it was okay.

That was it. Seemed easy enough, but still we were intimidated. Later, when we were actually in the grocery store, I panicked. There were disclaimers on some packages that said, “made in a facility with wheat”. We threw those back on the shelf. But when we emailed the nutritionist, she told us it was fine. My husband and I wondered how that could be true, but she seemed so confident, we went with it. It certainly opened up our options.

Even so, going gluten free was high stress for us in those early months. It is for everyone, I think. At the time we were scrambling to find palatable replacement foods for our young daughter. She was old enough to remember what she could no longer eat – her beloved cheddar bunny crackers, strawberry granola bars, and macaroni and cheese – but young enough that we hoped we could soon find new favorites.

And we did. Food shopping got easier in many ways. We got better, and faster, at reading labels, at knowing what to look for.

But then something shifted and the lines blurred a bit.

The problem for me stemmed from the Internet. The more I read online, on yahoo groups and blogs, the more discrepancies I noticed. It seemed some doctors and nutritionists gave conflicting advice. People said they were told NOT to eat foods produced in the same facility as wheat. Some talked about the hidden glutinous dangers in artificial and/or natural flavorings (which are totally not natural, but that’s another post). Whaaa? Our doctor said all we had to do was read the label, but here were all these people freaking out about “hidden” sources of gluten.

It was enough to make a celiac mama nutso. And I’m already pretty crazy. As you know.

So I emailed the nutritionist, again, about artificial and natural flavorings. They’re fine, she said, as long as the ingredient label looks okay. If the flavoring contains wheat, they’d have to disclose it since wheat is one of the top 8 allergens.

Okay… Again, sounds simple enough, but when I researched more on my own, the line was still kind of blurry. It seemed that although rare, it was within the realm of possibility that one of those flavors doctored up in a lab could *possibly* contain barley or rye since they are not in the top 8 allergen and therefore do not have to be declared on a label.

(If your brain is starting to smoke from confusion, check out this article that explains this whole business rather nicely.)

My own head was spinning with all this “new” information and it didn’t stop there. Once I opened my eyes to other people’s more conservative and cautious GF ways, more confusion and fear swam in. While the Columbia Celiac Center states that it’s safe to eat products produced in a facility that produces wheat, and, even on shared equipment, other doctors – even in the same city – do not agree. A friend from our local meet up group said her provider at Cornell Hospital (incidentally the same doctor who diagnosed Bunky) told her to avoid those products made in the same facility as wheat. Why take a chance, she told my friend.

Why? I’ll tell you why lady, because we have to live, that’s why! If we cut out all the products made in a facility with wheat we’d be restricting our restricted diet even more. Could we live without them? Okay, fine, yes of course we could. But if we don’t have to restrict ourselves further, I’d rather not. I’d like more choices for my kid, not less.

Yet, why all the discrepancy, even among reputable doctors and centers? Why isn’t there a definitive answer for an anal retentive celiac mama like myself?

For a few weeks I was kind of a mess, to be honest. Wondering if we were doing wrong by our daughter by not being extra cautious.

So I spazzed a bit when my husband bought these (fake) ice cream bars for Bunky.


Like a wild woman, I flipped over the box and pointed at the small sticker attached to the label.


Look, I said, stabbing the package. It’s made on shared equipment with wheat! How can it say it’s gluten free? I was very righteous and a bit insane. I felt personally affronted by those ice cream bars. Then my husband tried one and nearly gagged. But that’s beside the point.

Suddenly what seemed so cut and dry was not. We started to feel even more confused and anxious than in our early GF days. Now what, I wondered. Would we have to navigate the murky world of artificial and natural flavorings? Would we need to call companies as other celiacs have done in order to find out if they clean their lines between products?

I emailed our nutritionist again shortly before the holidays. I wanted to know if companies had the legal obligation to disclose “made in a facility” and/or “made on shared equipment” with wheat, and if it would have been safe for my kid to eat those ice cream bars if they hadn’t been so disgusting.

Her response didn’t surprise me. It fell in line with everything we had been told at Columbia so far. She told me it was voluntary for companies to disclose that information, and not necessary for me to make phone calls. “They must follow good manufacturing practices and segregate ingredients,” she wrote in an email. I should mention that I like and trust this nutritionist very much, but I can’t help but feel a bit skeptical…

I’m supposed to trust big companies? Did you hear about the Applegate Farms GF chicken nuggets recall?

Yeah, it’s scary trusting other people.

In some ways I feel like we’re back where we started. We’re reading labels carefully and still purchasing “made in facility” products, but I have to say a little more reluctantly. I’m not sure what the right thing to do is. All the discrepancy is making my head ache. I guess the proof is in the gluten free pudding, so to speak. When we get Bunky’s blood drawn a few months from now, we’ll know if we need to go the extra cautious mile.

I’m curious to know what “gluten free” means to you? Do you call or email companies to ask allergen questions? Do you rely mainly on diligent label reading? Have you felt overwhelmed by this tide of GF confusion?

(Please don’t slam me if you think I’m glutening my kid with our pantry purchases. I’m trying my best and following the advice of our doctor and nutritionist. I am however totally open to hearing other people’s opinions, experiences, and practices. The learning curve is pretty steep here in celiac city, you know?)

27 thoughts on “When Gluten Free Isn’t Gluten Free (or is it?)

  1. You make a fantastic point. I find this issue to be similar to those with nut allergies- I sense that people are actually still more sensitive to those with severe nut allergies than those with Celiac’s in some case. I wish there were more products with no cross-contamination. I wish I had something highly encouraging to say, but I find this to be a particularly difficult subject…I try to stay away from as much of the cross-contamination products and eat as much fresh food as possible for this specific reason. Do you have a lot of certified gluten free options around where you live?

    • As someone with both Celiac and nut allergies, I can understand companies being more sensitive to nut allergies simply because in many cases, it can result in almost immediate death! Even for nuts, companies aren’t required to label that they “may contain” it. That being said, I do feel ALL companies should be transparent about their production practices, when people’s health is at risk. I agree with you that eating as much fresh food as possible is the best and safest! Even certified gluten free products can contain as much as 10ppm of gluten!

      • I agree, the nut thing is so serious. I didn’t realize that companies are NOT required to label “may contain” for nuts – I actually thought they were… In fact, I think my daughter’s pre-school teacher thinks that, too. That’s pretty scary.

    • Thanks so much for your comment and empathy! I do think nut allergies get more notice, and I totally understand why since it can be a life or death situation. We have dear friends with a daughter Bunky’s age with a severe peanut allergy and I know how stressful it is from witnessing what they go through.

      We are fortunate that we have lots of certified GF options around, and I have noticed that we’ve been eating more whole foods than we used to, which is a good thing all around!

  2. It is hard to trust the labels – from my perspective I know it is difficult. I can’t have artificial coloring. Many times I see “coloring” on a box in the US. Well…that is a sticky one. If it is artificial it has to be labeled that – and inclue which # it is. But what is the source of the natural dye? They don’t have to list that! In one case I actually called the 1-800 number on the box to General Mills and asked. It was Turmeric – but sheesh, how hard would that have been to list? I still remember when people got all upset over finding out Starbucks used natural red food dye from beetles 😉 Hehheh…..I’d rather that than artificial! Funny was though, Starbucks didn’t hide it – it was right on the packaging!
    So…I say, if in question, call the company hot lines – the have that number there for a reason – if they are a good company, they will answer your inquiries 🙂

    • Hey Sarah, thanks for your comment. Artificial food coloring is a tough one. How bizarre that companies don’t have to specifically label “coloring” ingredients when not artificial. There are so many strange nuances to food labeling laws that I’m just beginning to realize.

      Ha, to the Starbucks red beetle thing! Yeah, I’d rather eat something natural than Blue #07, for sure. I feel more and more reluctant to squirt food coloring in my kid’s food. Even though she does appreciate a pink icing 🙂 I have enjoyed using tumeric to make white frosting yellow, and my very particular kid didn’t even notice!

      Good point about calling just to be sure. I actually have emailed companies a few times, I just don’t know how thorough I need to be and when. I guess a good rule of thumb is when in doubt, call.

  3. I almost always email companies. Companies should follow good manufacturing procedures, yes, but when they don’t have a legal obligation to do so, or to report whether their product “may” contain an allergen, that doesn’t mean they do. I work in the food/beverage industry and we get inspections by Food & Drug / Department of Health. They don’t even usually ask about allergens and when they do, it’s kind of in passing – not much focus on it. So for me, I want to know exactly what a company is doing in between production runs if they also manufacture wheat.

    I think the reason there is a discrepancy between what different doctors say is just because different doctors (and different people) are more careful and cautious than others. Some people don’t want to take any chances at all, some react to extremely miniscule amounts. It’s nerve wracking when you get all this conflicting information though!

    I eat the Applegate GF nuggets all the time and am always paranoid because it’s sold right next to the gluten-full ones and the packaging is very similar. On my most recent package of it, I got sick after eating it. I first thought it was a coincidence so I had it again and got sick again! I also found something weird in the product (it actually looked like half of a ziti noodle) so I emailed the company to find out what their practices are and to find out if it’s possible the stuff got mislabeled. They basically said no, explained their procedures, sent me free coupons and something to send my box and the crumbs back in so they could look into it. A few days later, I heard about the recall. Apparently, my box was not part of the recall … but still, it definitely makes a person nervous!

    • I totally agree, Amanda. Putting blind trust in big (and busy) companies doesn’t sit right with me. I think writing this post was my way of articulating to myself (and to all of you!) what I need to do more of as I move forward, and that is be more vigilant when it makes sense.

      Crazy about the Applegate nuggets, right? I’m sorry you got sick 😦 We used to get those on occasion, but not recently… it definitely makes me nervous about packaged foods. So much for convenience!

  4. It is a quandary. I generally believe that most foods on shared equipment are fine but if there is a choice, I pick the one not on shared equipment. Whole Foods makes me nuts with its CYA disclaimers so I just don’t buy a lot of their stuff. My 20 year old glutened herself this summer and the only thing we could trace it to was the colored sprinkles she bought that were made on shared equipment, Not in that case, but usually, you have to factor in how much of a given food will be consumed, and if it is at 20 ppm like Rice Dream, you don’t drink a glassful but a few tablespoons in your muffin mix will probably be just time…

    • I like the idea of picking the not shared product, whenever possible. I think I’ll be looking more closely at that from now on. Thanks, as always, for chiming in! You were my GF guru in the early days and I still think of the advice you gave me way back when 🙂

  5. I’m always wary of “shared equipment” and anything that doesn’t specify what is in the natural and/or artificial flavorings. I’d rather be safe than sorry! Good luck in your hunting!

  6. Hi Dana,
    Your brought up so many good points in your post, that I don’t even know where to start.
    I read a great editorial last month in the American Clinical Nutrition Journal called “The million-dollar question: is gluten-free food safe for patients with celiac disease?” It was very timely for me because I had just been “glutened” from Trader Joe’s pasta sauce which was made on shared equipment with wheat but had not had their usual disclosureof shared equipment (I found out only after calling them after getting sick).
    The authors of the editorial were questioning whether or not <20 ppm of gluten is appropriate for declaring a food to be gluten free, and discuss an article which examined whether or not "gluten free" foods actually contain enough gluten to make Celiacs sick and impair mucosal healing. The study which they discuss found that gluten free foods are totally safe for Celiacs. Through their analysis, they found that using the < 20 ppm definition, that only .18% of Celiacs would get sick from GF food. They conclude that it is unlikely that eating commercially prepared GF food would cause harm in Celiacs. I think that I am, unfortunately, in the small 0.18% that cannot tolerate <20 ppm. Your daughter is Bunky is most likely not super-sensitive.
    I hope that this helps!

    • Jess, thank you so much! That does help a lot, actually. I think you’re right, some people are very acutely sensitive to the smallest amount of gluten, at least outwardly, and I don’t think my daughter is.

      That article sounds really fascinating, the title alone is so telling. Is it available online?

      I think the question of what is truly safe for celiacs to eat is just beginning to be addressed by studies like that.

      Thanks for your thoughtful comment and your own very informative blog posts. It really helps to have allies in this!

      • Hi Dana, I think it can only be accessed with a subscription, so I just cut and pasted it. Here it is:

        The million-dollar question: is “gluten-free” food safe for patients with celiac disease?1,2
        Frits Koning, Marieke Mol, and M Luisa Mearin
        + Author Affiliations

        1From the Departments of Immunohematology and Blood Transfusion (FK) and Pediatrics (MLM), Leiden University Medical Center, Leiden, Netherlands, and the Dutch Celiac Disease Patient Association, Nijkerk, Netherlands (MM).
        ↵2Address correspondence to F Koning, Department of Immunohematology and Blood Transfusion, E3-Q, Leiden University Medical Center, Leiden, Netherlands. E-mail: f.koning@lumc.nl.
        See corresponding article on page 109.

        Celiac disease (CD) is an immune-mediated systemic disorder elicited by gluten and related prolamines present in wheat, barley, and rye in genetically susceptible individuals and characterized by the presence of a variable combination of gluten-dependent clinical manifestations, CD-specific antibodies, HLA-DQ2 or HLA-DQ8 haplotypes, and enteropathy (1, 2). In the affected intestine of patients, but not in healthy controls, proinflammatory T cells are present that are specific for gluten-derived fragments bound to the disease-associated HLA-DQ2 and HLA-DQ8 molecules (3, 4). A strict and lifelong gluten-free diet is the only, yet very effective, cure because it eliminates the trigger for the T cells. Gluten, however, is widely used in the food industry because it possesses highly desirable properties. It is a cheap protein source, is available in large quantities, and, perhaps most important, is an essential component of high-quality dough because it provides viscosity, elasticity, and the capacity to retain gas released during fermentation, which is required for the production of high-quality bread, cookies, and pizza, just to name a few of our favorites. Because of this widespread use, many food products that are not naturally associated with wheat may contain gluten, sometimes on purpose, often just by accident. The gluten-free diet is thus a challenge, primarily for patients but also for physicians and dietitians.

        Fortunately, there are now many companies that provide a range of “gluten-free” products that are guaranteed to be “gluten free” [ie, contain <20 mg gluten/kg food product (20 ppm)]. “Gluten free” is set in quotation marks because 20 mg gluten/kg food product indicates that some gluten may still be present. So, the million-dollar question is whether this is enough to cause concern, and can such an amount still be detrimental for patients. This is an issue that keeps returning because full mucosal healing does not always occur, especially in adult patients, even when they are on a strict gluten-free diet. There can be several reasons for this, but some sort of gluten exposure is the most logical assumption because this exposure would continue to stimulate the gluten-specific T cells in the small intestine and maintain some degree of inflammation.

        So where does the gluten come from? In this issue of the Journal, Gibert et al (5) report on a study in which they investigated whether the amounts of gluten present in commercially available gluten-free products could be responsible for the observations. They have collected data on the consumption of gluten-free products by patients in Italy, Spain, Germany, and Norway. They also determined the amounts of gluten in the gluten-free products most commonly used by the patients included in the study. The results confirm that most of such food products are indeed “gluten free” according to the currently accepted international regulations. On the basis of this, they could calculate the exposure to gluten in the patient groups. Also, in a previous study, a safe gluten threshold was determined, and the authors combined these data to perform a probabilistic risk assessment to calculate the risk of an adverse event based on the gluten present in commercially available gluten-free foods. Various scenarios were tested, and the bottom line is that the risk is minimal: 0.18% of the patient population in Europe will be affected due to the consumption of gluten-free products. This means that 18 of 10,000 patients are at risk. Of course, this is 18 too many, but the more important conclusion is that exposure to gluten through consumption of commercially available gluten-free foods cannot explain the high number of patients in whom full mucosal healing does not occur. So the message of the article is that the gluten exposure must come from elsewhere, and the authors suggest that voluntary transgressions and foods consumed outside the household may be the cause. In addition, naturally gluten-free foods that are contaminated with gluten may pose a risk.

        Now, is this the final verdict? Well, not quite. There are still a few catches. First, all of the food products were tested with the R5 sandwich ELISA method. This method fails to detect relatively small gluten fragments and is specific for gliadins and does not detect glutenins, a second class of gluten proteins that can stimulate T cells, and may thus underestimate the actual gluten content of foods (4, 6). Better methods to determine the actual gluten content of gluten-free foods are thus still needed. Second, it is feasible that a combination of small amounts of gluten in gluten-free foods together with similar amounts of gluten in contaminated foods could lead to unacceptable exposure and cause problems. Third, formal proof that patients indeed ingest hidden gluten in quantities sufficient to sustain mucosal inflammation is still lacking. Having said this, the study indicates that it is unlikely that the consumption of commercial gluten-free foods by itself will cause problems in the large majority of patients. The consequence is that patients, physicians, and dietitians need to better watch the diet and be more suspicious of transgressions and naturally gluten-free foods. Unfortunately, it does not get easier.

        Next Section

        The authors had no conflicts of interest.

        Previous Section


        1.↵ Tjon JM, van Bergen J, Koning F. Celiac disease: how complicated can it get? Immunogenetics 2010;62:641–51. CrossRefMedline
        2.↵ Abadie V, Sollid LM, Barreiro LB, Jabri B. Integration of genetic and immunological insights into a model of celiac disease pathogenesis. Annu Rev Immunol 2011;29:493–525. CrossRefMedline
        3.↵ Lundin KE, Scott H, Hansen T, Paulsen G, Halstensen TS, Fausa O, Thorsby E, Sollid LM. Gliadin-specific, HLA-DQ(α1*0501,β1*0201) restricted T cells isolated from the small intestinal mucosa of celiac disease patients. J Exp Med 1993;178:187–96. Abstract/FREE Full Text
        4.↵ Vader W, Kooy Y, van Veelen P, de Ru A, Harris D, Benckhuijsen W, Pena S, Mearin L, Drijfhout JW, Koning F. The gluten response in children with recent onset celiac disease: a highly diverse response towards multiple gliadin and glutenin derived peptides. Gastroenterology 2002;122:1729–37. CrossRefMedline
        5.↵ Gibert A, Kruizinga AG, Neuhold S, Houben GF, Canela MA, Fasano A, Catassi C. Might gluten traces in wheat substitutes pose a risk in patients with celiac disease? A population-based probabilistic approach to risk estimation. Am J Clin Nutr 2013;97:117–24. Abstract/FREE Full Text
        6.↵ van de Wal Y, Kooy YMC, van Veelen P, August SA, Drijfhout JW, Koning F. Glutenin is involved in the gluten-driven mucosal T cell response. Eur J Immunol 1999;29:3133–9. CrossRefMedline

  7. “Shared equipment” Yep I have had problems with those words also. I haven’t had a bad reaction but definately noticed some upset stomach and body ache’s, small skin rash. Sounds stupid I know, but compared to horrible stomach bloating and cramps and covered in a rash head to toe….I would consider them “not bad” reactions. 🙂 The longer I am gf the more sensative I am when getting glutened.
    I just had a terrible reaction to a new make-up I bought!!! (((sigh))) must it also affect my vanity??? I had checked the ingredients, like I had any idea what the heck most that stuff was.
    After having to leave work because I was so sick……I narrowed it down….what had I done different or new??? Called the co. and TADA….yes in fact one of those chemicals listed on the product did in fact contain gluten. For two day’s I had been rubbing gluten all OVER my face and neck not to mention everytime I touched my face then ate something……Oh my can you say stupid?

    • Now, now, that isn’t stupid. Stupid is eating yourself and giving to your celiac daughter a candy someone gave you as a holiday gift because when you googled it you got several Amazon listings that said it was gluten free….fortunately she spit hers out after reading the tiny label in German and I was the only one sick all night….take a look at Haribo Color-Rado Gummi Candy on Amazon and write in that it is NOT gluten free. Some of the pieces are but some are not (and actually none are since they are all mixed together). Now that is a stupid, careless moment that happened years in to being gluten free, and I usually check everything,,..

      • My daughter is also celiac and it always amazes me when she catches stuff I don’t. We have only been gf for a year, but I will go to drink something and she will say……mom did you check that….aaaaahhh NO! I love that she is learning at thirteen to take control of her own health though. Cause sometimes us moma’s well……we miss a thing or two. 🙂

      • I totally agree, my girl is so much more observant than I am sometimes. She asks me, did you read that label? and Are you sure that’s gluten free? It’s great seeing her take such care and responsibility at such a young age. I’m glad your daughter is, too!

  8. So I can no longer say to my husband “”””FOOD HAS BECOME MY ENEMY””” cause it’s not just food anymore. LOL Guess I better suck it up and figure it out. 🙂

  9. Ooh this is a very sensitive subject indeed. The rules are different between countries and often confusing within.

    I feel safest here in Australia as there is a “zero detectable gluten” policy. Europe and the US have not adopted this modern approach. Whether this is due to the share workload of a transition, or if it has some financial ulterior motive I do not know, but I hope time will better the game (or I’ll be back to utter confusion when I head home).

    When it comes to cross-contamination every coeliac’s different. Some coeliacs don’t even feel symptomatic from eating straight out gluten, yet others get awfully sick from a mere knife touching a bagel wrapper. I’m in the last category and wouldn’t dream of eating anything made in an environment that also handles gluten containing products.

    That being said, my personal belief is that even the smallest amount of gluten accumulated and over time will have a damaging effect on the system, symptomatic or not. But that’s my personal opinion.

    The following link provides a really easy explanation on how much gluten is too much gluten: http://glutenfreehelp.info/gluten-free-research/how-much-gluten-is-too-much/

    I’m sure you read the section of my page (“so what’s the trouble with gluten?”) on regulations? Amongst other info it contains a link to a debate over glucose syrup from wheat. You might find that article interesting.

    As for Bunky, you know her best so trust your gut 🙂

    Love from Kristine

    • Trust your gut, ha! Sorry, couldn’t resist 🙂

      Thanks for the comment Kristine. I may need to move my family to Australia! How awesome is that zero gluten policy?! I love that. Sigh. No such luck here.

      I’ll check out the link on your site for sure. It’s such a continuous effort to educate myself, but worth it because I want to do right for my girl.

      Love back at you!

  10. Dana,

    A couple of questions…these replies above are not that old…any decisions made since then. I am so glad to find a place (here in your blog) that is discussing all of the many, many, many questions I still have. Modified starch – NO right? I’m still green….Lastly you mentioned that you were bringing Bunky back in for another blood test…why? To check her gluten levels?

    • Hi Jenny, it’s funny, the questions keep coming – even two years later (for me)!

      So, modified food starch is USUALLY made from corn which is fine (unless of course you’re allergic to corn!). If it was wheat starch (which could be possible) the food labels in the United States would have to label it as “wheat” since that is one of the top 8 allergens. I don’t think there’s much of a chance of it being barley or rye starch.

      We have to bring Bunky back to her celiac doctor every year (for now) to test her gluten levels. She was tested at age 3 (at diagnosis) then again at 3.5. I believe we also tested her at 4 years and our next appointment is in a few months when she turns 5. We hope her levels are lower than they were last year. They really should be, unless gluten is sneaking in somehow. Sigh. Fingers crossed.

  11. Pingback: Natural Flavors, Exposed! | celiac kiddo

  12. When I read that it was processed on shared equipment or in a facility that processes wheat, soy, etc. lately, I have been putting the items back on the shelf. I didn’t always do that. The last year of living with this disease has been a rough transition. Recently I became VERY ill from what I can only correlate to a cross contamination while eating off of a GF menu at a restaurant. I’ve been very careful since…including not eating out at all. I’m just that scared.

    Personally, if I feel compelled to THINK ABOUT calling a company or further research an item beyond what the general consensus may be on the GF/Celiac groups/boards/etc. that I follow, I think I’ve already raised the internal red flag that I just shouldn’t eat it. I simply don’t take it that far by personal choice.

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