The Gluten-Free Community and Its Pool

by Jeanne on August 24, 2012

Note: As of 8/27/12 I have closed the comments on this post in order to preserve the anonymity of the other person involved.

This week I had an odd Twitter interaction.  A member of the gluten-free community, who is a staff member with a gluten-free magazine (and writes/edits the blog for that magazine), posted that s/he was “cheating” on her/his gluten-free diet for a special event.  I replied and said:

“Not to be a pill, but telling people you ingest gluten when you feel like it makes it hard for those of us who can’t.”

S/he tweeted back (and wrote a blog post on the magazine site that did not name me) to say that s/he is not responsible for other people’s feelings and that what s/he does is her/his business and no one else’s business.  And I agree—to an extent.  As this person pointed out, we all have a “personal journey with gluten,” etc., etc., and we all make decisions accordingly.  And I agree that s/he is not responsible for my feelings.  I meant to convey that by publicly tweeting the fact that s/he “cheats,” s/he gives the false impression that anyone in the gluten-free community can cheat when they want to.  I think this person thought that I meant that my feelings were hurt, which they weren’t.

Unfortunately, in the blog post, s/he framed my comment as that of an intolerant person who wants everyone to cater to my needs.  Which is untrue.  This is probably the greatest challenge I and other truly gluten-free people have: rectifying our medical needs (which focus on food) while wanting to be in social situations (which often focus on food).  If one asserts ones medical needs (to not eat gluten) and one’s social needs (to eat with other people) at the same time, one risks being perceived as difficult and selfish.  It’s sad that this is the case, but it’s one I struggle with on an almost daily basis.

There are complicating factors here.  It turns out that this person is not gluten-intolerant, per se.  S/he avoids gluten most of the time due to another health issue.  Therefore, this person can choose to eat gluten whenever they want.  S/he can be more loosey-goosey with gluten than many of us can be.  I will admit that this makes me feel uneasy.  It’s odd to find out that someone who is a voice of a gluten-free magazine is not gluten-free.   Or, more accurately, can choose when to be gluten-free.  It’s like finding out that the editor of a women’s magazine is a man. I’m not saying that it’s necessarily bad, but it does give me pause.

And this is why: in their blog post, this person wrote: “I am not a spokesperson, role-model or guide for what is best for you.”  It is on this point that I disagree.  I would argue that this person–by virtue of her/his choice to be a public staff member for a gluten-free magazine, to write a blog on gluten-free eating, and to be active on social media–is a role-model for others in the gluten-free world whether they want to be or not.

I feel very strongly that those of us in the public sphere do have a responsibility to our food allergy/intolerance/sensitivity community that non-public people might not.  We need to be more careful and more aware of what we say and do in relation to our food needs and how those actions affect the community.  Every time someone who is publicly gluten-free (especially those who are representatives of gluten-free businesses) chooses to do the thing that they tell people they can’t do (eat gluten), it has ramifications for the entire gluten-free community.

The ramifications of the actions of people like this person on our food allergy community are greater than I think s/he realizes.  Broadcasting on social media the concept that s/he can “cheat” whenever s/he feels like it gives the general population the impression that all of us can cheat whenever we choose to.  Unfortunately, by extension, this can inadvertently put food allergic/intolerant/sensitive people in situations that are physically uncomfortable at best and life-threatening at the worst.

If we were all unconnected individuals and lived as hermits with no contact with each other, none of this would matter. But we are interconnected. This person and I are co-members of the larger gluten-free community.  But this person has an ability I don’t have—s/he can jump in and out of the gluten-free pool whenever s/he chooses to.  For this person to cheat when they want to and then publicly flaunt this ability on social media is kind of like peeing in the community pool.  Further, this person can leave the pool, but those of us who live in it are stuck with the ramifications of their actions.  I’m not saying that s/he shouldn’t be able to jump in and out of the pool, but I call upon her/him and everyone else who is in the same fortunate position (especially if they have a public presence) to be aware of the ramifications of their public actions on other members of the community.

Edited on 8/27/12 to add: I want to be clear: I do not think this person, as a person, is bad or intended harm.  I don’t know them on a personal level.  And I really hope that people aren’t leaving hurtful or malicious comments on that person’s blog–that serves no purpose.

Further, to be even more clear: to be honest, I had forgotten about the Twitter exchange until this person put up an explanation of it on the magazine blog (and tweeted me that they had done so).  As far as I was concerned, this was a personal issue to which I responded personally on twitter until this person made it professional by putting it on a professional site.  That needs to be recognized.  If this person had put this on their personal blog, it would not have been the professional responsibility issue that I currently see it as.

(Image from: http://graphicsfairy.blogspot.com/2010/05/free-vintage-clip-art-bathing-beauties.html)

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Janice August 27, 2012 at 5:32 pm

fwiw, I agree with your stance — publically stating you are gluten-free and then in the same breath talking about “cheating” on your diet like it is a choice, is very confounding for those observing these discussions from afar. I have found so much misinformation and poor understanding of the whole need for GF among people in the food industry, that casting this as a choice rather than necessity causes many to not take cross contamination seriously. Unfortunately, I have heard similar scenarios to the one Cindy relayed, and heard from some people in the food industry similar POVs. My response to them has always been: if these are customers you want in your establishment, you need to be prepared to take proper preparation and serving of GF offerings on your menu seriously AND you need to be prepared to answer questions about your food handling protocols without rolling your eyes! Some get it, and some never will IMO.

Mary Macedo August 27, 2012 at 4:39 pm

I’m not sure if blogging publicly is effective for the GF awareness. I was always told to wait 24 hours or address sensitive issues directly to the person. Turn this negative energy into a positive experience by focusing on GF education, “The Differences between Celiac and Gluten Intolerence.” My own sister does not have Celiac disease but does suffer from serious depression and learning to eat gluten free foods improved her life significantly.

J-Ann August 27, 2012 at 3:36 pm

[Some identifying info about the person I wrote about has been removed to keep that person anonymous] All these comments about [the person Jeanne talk about's] attitude are simply too extreme when you read the original sources. S/he isn’t harsh or intolerant or most of what many of you are accusing – make sure you’re reaching the CNN conclusion, not the National Enquirer conclusion (again, go to the source). The medical community uses the word “allergy” to represent a wide scale of intolerance; my cat allergy gives me itchy eyes and a runny nose, but my cousin’s cat allergy gives her a trip to the hospital, and yet both are classified as allergies. [name removed by editor] is very forthright when s/he discusses her particular dietary restrictions. Yes, s/he can “cheat” on gluten, but it’s not like s/he can do this every day – s/he can probably count on one hand the number of times in a year s/he can do this. It *does* have consequences for him/her, just not the extreme ones it does for Jeanne or others with extremely serious gluten allergies.

And speaking of original sources: if a doctor and other medical professionals are telling you that a bite of gluten for you will mean death (or anything else close to that scale), then you shouldn’t have it, no matter what anyone else says. Exert some common sense, or else we veer towards the direction of needing “contents may be hot” warnings on coffee cups. We don’t want to be that needy.

As to [name removed by editor] being a role model in the gluten-free community: yes, leaders are held to a higher standard, but we each have to set that standard within the realm of reality, evaluating the body of work that person puts forth. Anyone who follows her/his personal blog or her/his work with the gf magazine would see that s/he explains her relationship with food. If someone has jumped to the conclusion that his/her gf intolerance is as serious as someone with celiac, for example, then that came from their conclusions, not from [name removed by editor] writing. They have a misrepresented understanding of all the things that a gluten allergy can mean. S/he can’t control that. S/he can’t be responsible for everything that her readers think, s/he can only be honest about her/his own experience. THAT was the point s/he was making. Beyond that, his/her concern for this community is immense – s/he does this because s/he cares about it. S/he doesn’t make money from it (it may surprise you, but it’s true), and the contributions s/he makes to the food options out there are valuable and valued.

Jeanne, I *do* recognize the point you were making – that there is a level of ignorance out there when it comes to gluten-free needs that can make it very dangerous for those whom small amounts of gluten can mean serious illness or even death. The process of educating the greater society about this is slow and frustrating, and there is not one specific method of education that will do it perfectly. For every two steps forward there may be a step back. The good news is that it’s getting better, and there are passionate people like you and [name removed by editor] to help see this through. It’s good that this dialogue is happening –

– but let’s keep it real, people.

admin August 27, 2012 at 3:50 pm

J-Ann: I appreciate your desire to try to clarify and defend the other person’s stance. Because I don’t want this to be necessarily about that person and I don’t want to “out” them (that’s not the point of this article), I have deleted that person’s name when it appears in your comment. This is the first time I have ever edited a comment.

Also, I agree: I do not want this to be a matter of “that person is bad” and “Jeanne is good.” That’s too simplistic and not the point. And this is a highly emotional topic. I agree that a rational approach makes this much more of a helpful debate.

Also, whether or not that person gets paid for the work they do does not diminish the status they have as a representative of the magazine they work for.

Jean S August 27, 2012 at 9:32 am

I have been the editor of a women’s health publication–the now-defunct Women’s Health Advocate–and I couldn’t agree more. If you are an editor/writer/contributor, with your name on the masthead, then you need to cowboy/cowgirl up and do the right thing.

I would suggest that you send your blog post, with several of the comments your readers have posted, to the magazine. This is a matter of professional ethics, not of a reader’s feelings or opinions.

admin August 27, 2012 at 10:56 am

Jean: Yes! Exactly my point. Thank you.

Nikol August 27, 2012 at 6:22 am

Spot on Jeanne! Those of us that can’t shouldn’t be misled by someone we place some measure of authority with or rely on their information. If it’s her personal choice then it should remain personal. It totally conjures memories for me of servers who say, “it only has a little gluten in it”. GEEZ!

admin August 27, 2012 at 10:58 am

Nikol: Yes, this is an issue of those in authority and their responsibilities–the personal needs to remain personal. And also about the server–Right? I can’t tell you the number of times a server has said–“Oh, it’s gluten-free–there’s only a tablespoon of flour in there.” Eek!

J August 26, 2012 at 1:01 am

I find that my family and friends think that I can just “cheat” and eat gluten and then take an allergy pill or something.
Things like that tweet just reinforce the ignorance about truly HAVING to be gluten free for health reasons and make it out to be something to be taken lightly.

admin August 26, 2012 at 11:35 am

J: Agreed. And you put it well: reinforcing ignorance is the problem with announcements like these.

Lauren August 25, 2012 at 7:45 pm

RELAX!!!
1. Two wrongs do not make a right. If you feel as though she was wrong by “making it public,” then you have the responsibility to be the bigger person. If you choose to “stoop to her level,” you choose to be on that level.
2. I am a self proclaimed gluten freak. I have terrible reactions to gluten that include fevers, insomnia, and 3 days of stomach pain. However, I, as a free-willed adult, ‘cheat’ on my gluten intolerance on very rare occasions. Does it make me sick? Yes. Do I know it is bad for me? Yes. Do I post about it on facebook? Yes. Does that make me a bad person or role model to those who come to me for gluten free support?
My mother is allergic to cats. She has an awful reaction. She has a dog but the dog is just not a cat. Every now and then, she heads to petsmart on adoption day and plays with the kitties. It’s no different.

Does it absolutely suck that we cannot tolerate gluten? Yes. Can we technically eat it? Yes, though it will eventually kill us. Just as with anything else, it’s no one else’s business how we choose to handle our disease or intolerance. This is a very prominent issue in the gluten free community and I commend this person for writing publicly about it. It’s a reminder of the fact that being gluten free does not HAVE to run our lives. We choose to allow it to run our lives for our own betterment. Be proud of yourself for bettering your body and life by eating properly, but remember:

Pride is a gluten free dish best served at a table for one.

admin August 25, 2012 at 9:25 pm

Lauren: Clearly, you are free to choose to do what you want to. I do want to clarify one point: I cannot eat gluten because I have a life-threatening allergy to wheat and its relatives (which comprises the majority of gluten available). I’ve discussed it on my blog before. So, I cannot “technically eat it.” If I do, it will kill me. Not over a period of years, but quickly–if I don’t get to the hospital immediately. Therefore, I cannot afford a laissez faire attitude about gluten. When I say I can’t eat it, I mean it. Therefore the attitude that all of us should just “relax” about this issue is dangerous to people like me. And, avoiding gluten does “run” my life, as you put it. If it didn’t, I would be dead.

Lauren August 26, 2012 at 2:24 pm

Thank you for reaffirming my point. We all have different reactions to gluten and not everyone can cheat. One person handling her personal dietary needs differently than another’s is exactly what we’re supposed to do. What we aren’t supposed to do is sit around whining about how our allergy is worse than other people’s allergies and make martyrs of ourselves. If one resource does not give you the tools you need to manage your disease, find another resource. She wasn’t reaching out to you; she was reaching out to people like me who go through that same exact mental process.

admin August 27, 2012 at 11:00 am

Lauren: The point is: this person is in a position of authority when it comes to gluten allergies/intolerances/sensitivities. For them to give them impression that it’s OK to be loosey-goosey about gluten on a magazine blog is not OK. It is professionally irresponsible.

Shirley @ gfe August 25, 2012 at 6:43 pm

Jeanne, I applaud you for addressing this situation and totally agree with you. I have read your post and the other individual’s tweets and follow-up article and I see nothing that can justify it frankly. It does not make me happy at all that this gluten-free magazine has allowed this individual to share such a piece. It’s a slap in the face to those of us who can’t eat a speck of gluten and it sends the wrong message. Ironically, it has been shared under this magazine’s category of Inspirations. There is not a thing inspiring about it in my opinion. Thank you for bringing this matter to our attention, Jeanne.

Shirley

Kate August 25, 2012 at 12:46 pm

I’m really uncomfortable with the fact this person works for a GF mag. There seems to a an in-your-face arrogance where those of us who would be sick enough to want to die if we cheated. Perhaps he or she should develop an “I’m most gluten free” publication. Now, I’m going to be very wary of what kind of “wisdom” I read in all my GF magazines.
Diagnosed and GF 4 years/73 years old.

admin August 25, 2012 at 2:05 pm

Kate: yes, it is odd. She keeps insisting that she “can’t cheat” and yet she does. It’s quite confusing and weird.

Cindy August 25, 2012 at 10:44 am

Thank you for your response. I’ve been wanting to tell that story for 2 years. It was very upsetting and made me never want to eat out again. But I refuse to be kept out of life because of a few ignorant people – actually a lot. (: I took 3 preschool classes to a highly respected science museum and was kicked out of the cafe – in front of tons of children and their families – because I had to bring my own sandwich because they did not offer anything gf on their limited menu. I had ordered a coke and my assistant teacher ordered a full meal and was sitting with me. I was humiliated and embarrassed in front of all my students. The families were so upset on my behalf. I did write to the museum and they said the cafe is regulated by an outside source, blah, blah, blah and those are the rules. They were going to check into changing their policy but of course I have never heard back from them nor have I gone there again and that field trip generated about $1,000 for them. It’s so nice to know there are people like you working to help us. I appreciate it.

admin August 25, 2012 at 2:07 pm

Cindy: OMG, I cannot believe the museum cafe story. That is horrible. And I can’t believe they kicked you out–that is the height of ignorance. That is another place to put on the “never go back to” list.

Cindy August 25, 2012 at 8:01 am

I 100% agree with you. Maybe if she had qualified her remarks but also stating she was gluten intolerant but please be aware if you have celiac disease it would not be an option for you to cheat occasionally like me – it would have been a little better. These remarks are what make it SO difficult for those of us with a serious medical disease to eat out in public or go to parties with food. People don’t take it seriously. I was in a restaurant and they did not have a gf menu but had a couple salads that they said were gf. When I asked my waitress to ask the chef/cook to change gloves and use clean utensils and pans she rolled her eyes at me and then said ” I think it’s so funny how you people who eat gf at the end of the meal when I ask if anyone wants dessert – will order a piece of pie (gluten filled).” I could not believe how sarcastic she was. I explained that it must have been someone who was gluten intolerant and was willing to get sick for that piece of pie – unlike me and anyone else with celiac disease would never make that choice because we would do serious damage internally to our bodies. Then I said – and I feel very scared to eat here when I can see you don’t realize the seriousness of this. It’s so frustrating – and scary. Thank you for taking the writer to task – and for the record – you were not mean at all. Just making a valid point.

admin August 25, 2012 at 9:07 am

Cindy: You experience in the restaurant is a story I hear all of the time. It’s so hard to be taken seriously that this is a serious medical condition when there are others who are playing fast and loose with what it means to be gluten-free. And I’m glad you told the server how you felt–to be honest, I think it is highly unprofessional for her to behave that way–and incredibly rude. I would not go back there, that’s for sure.

Wendy August 25, 2012 at 7:25 am

I completely agree with you. I had witnessed some of the twitter exchanges, but did not know that they were a writer for a Gluten Free magazine. I do not know whether or not I have celiac disease or non-celiac gluten intolerance. It took me several months to figure out that I could not have any cross contamination while dining out. I take this very seriously. I still have friends not understanding the whole cross contamination thing, and do agree when you have someone in our community such as this claiming that they can have it once in a while it does make it worse for me to hold my own.

Not a cheater August 24, 2012 at 8:15 pm

Tweeting about cheating sets a bad example and could misinform people people with celiac. It is an endorsement of not following a strict gf diet and unacceptable for someone who writes for a gluten free publication.

Anne August 24, 2012 at 3:38 pm

Wow! What an awful story.

First, I think the reason this person tried to turn it back around on you and portray you as being the unreasonable one is because s/he knew you are entirely correct. Usually people react this way out of guilt.

Second, I do not believe that the casual gluten-avoider should have a public spokesperson role within the gluten-free communitybecause at the end of the day, they simply do not get it.

Yes, they understand intellectually the science behind the gluten allergy and celiac disease, but they will never understand the frustration and discrimination people who must be gluten-free experience every day just trying to get through life.

Anyone who can cheat when someone sticks a cupcake in their face doesn’t get what it’s like for those of us who can’t, who get labeled as difficult and picky and bitchy by people who don’t get understand it and who have met faux celiacs who cheat.

And who are apparently perfectly comfortable with doing the same thing to anyone who calls them out on their behavior.

Ugh.

admin August 24, 2012 at 4:01 pm

Anne: Exactly. I think you have hit the nail on the head. Labeling those of us who have no choice in the matter as “difficult” shows extreme ignorance on issue.

Anne August 24, 2012 at 4:09 pm

I get enough of that from people I work with and random strangers. I don’t want, need or expect that from the gluten-free community.

admin August 24, 2012 at 9:55 pm

Anne: Agreed.

Jos August 24, 2012 at 2:39 pm

I agree with you 100%. Totally stupid and insensitive to write such nonsense given the jobs/he is in. They call coeliac disease a disease because that inexactly what it is, not a condition or a whim or a phase. We don’t get to choose to cheat. S/he shouldn’t be in that role as s/he clearly doesn’t get it and isn’t at all empathetic to those who read that magazine.

Barbara | Creative Culinary August 24, 2012 at 3:25 pm

I think also totally stupid and insensitive to critique someone else so negatively and call them names just because you don’t agree with them or share their journey. Not everyone has celiac disease, I know several people with a gluten intolerance that can tolerate small quantities and I see no reason why their life has to be either/or simply because you have to live that way. Funny, the public is weary of what we see as intolerance on the part of the GF community…it goes both ways.

By the way? Those tweets were from her personal account and I’m thinking she has a right to a personal life and personal opinions just like the rest of us.

admin August 24, 2012 at 3:57 pm

Barb: I agree about the personal element. And I would have left it at my Twitter conversation with the person if the person didn’t write about the issue on the gf magazine blog. By doing that, s/he took it public. And I see that was crossing a line between personal and public in an unprofessional way. Also, I didn’t call anyone names.

The fact that s/he is a spokesperson (whether s/he wants to admit to it or not) for a gluten-free magazine means that she has more responsibility to the public than a private person does. And if she had left it on her private social media stream, I wouldn’t have taken it public (in fact, I had already forgotten the conversation when s/he tweeted me and you that s/he had written the post).

Also, her/his blog post and your comments there and here lead me to believe that this person and you don’t fully appreciate the medical seriousness of gluten intolerance. For you and the person to characterize those of us who express the fact that we cannot cheat as “intolerant” of other’s opinions shows me this. Me not being able to eat gluten is different from you being annoyed by listening to or having to accommodate people who can’t eat gluten.

Barbara | Creative Culinary August 24, 2012 at 4:28 pm

I know the issue intimately Jeanne; one of my closest friends has had celiac disease for years; way before it became something known in the mainstream. I am not intolerant at all; as a matter of fact just the opposite but this is not a war. It’s not us vs them or shouldn’t be. [Name of person removed to protect anonymity] should be allowed to indulge in whatever is comfortable for her without rancor from others. I simply think there has to be some mutual respect.

By the way, my comment was addressing the verbiage used by Jos when I lamented the name calling; not you. I don’t get how that ever helps in an avenue of discourse.

suziluz August 24, 2012 at 2:11 pm

Well spoken. I have just recently found out I’m gluten-intolerant, and am now torn inbetween the relief of finally knowing what’s causing my lousy health and the struggle of knowing that from now on, I’m going to have to be an inconvenience to my friends every time one of them asks me to come over for dinner, or a party, or just to have coffee and a cookie. It’s certainly enough having to cope with relearning what to eat and not, I don’t ever want this to be a question of “how much” of certain foods I can take. The simple answer is nothing, if I want to stay healthy.

There is a huge difference between having an allergy/intolerance and just staying off foods for dietary or other reasons. The first is a necessity, the latter is a decision that can be unmade. And if you’re someone in the eye of the public, I think it’s even more important to be clear on which category you’re in. Otherwise one can, as you say, cause problems for others.

Thank you for an inspiring and helpful blog! /Suzanna

admin August 24, 2012 at 2:27 pm

Suzanna: Yes, it’s a drag. But, I have found that most of my good friends and family members are happy to find things that work for them and for me. It’s the large public that gets cranky when they can’t serve you pasta or whatever. LOL!

kelly August 24, 2012 at 1:39 pm

sorry that even had to explain this. So well written and I agree, as someone who is in a place of responsibility they (whether they realize it or not) are held to a higher standard. Sometimes it takes a bit longer to understand that there are consequences that affect not only yourself, but others. I agree, it should give you pause. If she is willing to cheat one day with this area, where else does that line gray?
Glad you didn’t get your feelings hurt. =0) Hopefully she sees that you are actually trying to help.

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