GLUTEN FREE AND THE MEDIA
THIS BLOG ENTRY IS AN UNEDITED WORK IN PROGRESS….
These are questionnaire results in regards to the media as well as audience responses to media
MEDIA
91. How do you feel about public treatment and response of the gluten free diet on social media?
It can be a joke for some people. I’ve gotten good at rolling my eyes (3K-C)
92. How do you feel about the treatment and response of the gluten free diet in mass media?
Again: people make a lot of lame, uninformed jokes at the expense of people with CD. (3K-C)
93. How do you feel the media treatment of the gluten free diet has affected public perception of what it means to deal with Celiac disease and eat gluten free? How does this public treatment affect your daily life and habits?
? The minuscule amount of coverage I’v seen ignores the struggle of the disease with poor humor. It does not affect my daily life. (3K-C)
94. How do you feel about jokes that make fun of the gluten free diet? Do you feel that such jokes affect the way individuals treat you in regards to you own diet? Please expand on this more thoroughly.
It’s disheartening to have a disease that is mocked. It’s not fun to read or hear those things, but I don’t spend a lot of time thinking about the things that are said by ignorant people. (3K-C)
95. Watch this short video, Glutened by Hayley Repton which was made by a documentarian about being diagnosed with Celiac disease and discuss your impression of the documentary. Please take notes on specific parts of the video that leave an impression on you. In what ways can you relate to the subject in the video?
FROM THE CELIAC JOURNEY WEBSITE
Glutened shows how those with food allergies and intolerances often silently suffer with their disability, and how this can be exacerbated by those around them who do not necessarily appreciate their limitations, how those with Celiac Disease often just say “thanks, but no thanks” to offers of food and fun, and what reasonable accommodations could be made to allow them to be included in a meaningful manner. (Bari, The Celiac Journey Feb 2021)
96. Watch this video of various comedians and their discussion of the gluten free diet. Please take notes on each comedian and discuss your impression of the performance.
97. Watch this clip of a comedian with Celiac Disease and discuss your impression of the performance
https://www.youtube.com/watch?v=Zky2ShG3XPk&t=1s
98. Watch this news clip and discuss your impression of how Celiac disease is presented to the audience
https://abcnews.go.com/WNT/video/boy-celiac-disease-shares-emotional-letter-77789112
99. How would you like to see Celiac Disease presented to the public in news clips and informative videos online? Are there any recommended online resources that you suggest or that you have found to be helpful? Are there any that you have found to be harmful? Please expand.
100. How would you like to see Celiac Disease presented in creative or fictional endeavors like comedy, television, artists and documentarians? Is there any recommended watching or reading that you suggest? Are there any that you have found to be helpful? Are there any that you have found to be harmful? Please expand.
FROM THE CELIAC JOURNEY WEBSITE
Since Jax was diagnosed with Celiac Disease, I have often thought of making a film like Glutened looking at the world through a child’s eyes who cannot eat pizza and cake at friends’ birthday parties; who cannot eat soft pretzels with his teammates at soccer practice; who cannot readily order food in his school’s cafeteria like his classmates; who cannot fully partake in the joy associated with the spontaneity of food in everyday life; who has to bring his own food often when we travel or eat out; who just watches other children enjoy foods that he cannot have; who walks through the supermarket and sees “eye candy” with all of the foods that he cannot eat; etc. (Bari, The Celiac Journey Feb 2021)
Please expand on anything else you would like to discuss. Thank you again for your valuable input!
1. Do you have a gluten related disorder that requires you to eat gluten free? If yes, do you have to be careful of cross contamination?
No. (2-MS)
No (3-PB)
No (1-TW)
2. Do you eat gluten free and why?’
I don’t. Personally, I just have a preference towards food with gluten. I think the
taste tends to be better towards food with gluten, but there are plenty of gluten
free substitutes that are good, and food doesn’t need gluten to taste good.
Do you know family or friends with a gluten related disorder?
Yes, my mom. (2-MS)
No (3-PB)
Yes, Partially, because of my wife’s celiac disease. (1-TW)
3. Do you know family or friends with a gluten related disorder?
Yes, my mom. (2-MS)
Yes, Michelle and her family (3-PB)
Yes, my wife and two of my stepchildren (1-TW)
4. Do you work in the food industry? If yes, what is your occupation?
No. (2-MS)
No (3-PB)
No (1-TW)
5. Have you seen jokes about the gluten free diet on social media or mass media? Please describe
Yes plenty of times. In some aspects, I think it’s fine, since some people try to put
on an aesthetic of being gluten free without having the disease, and that can be
pretentious at times. However, people with celiac are often conflated with those
who do it as an aesthetic preference, and so it becomes harder for people with it
to be taken seriously. (2-MS)
I have seen jokes about gluten free on social media, books, TV, in person. In fact, I was unaware of the severity of Celiac disease until I met Michelle. I had thought that “gluten intolerance” was mostly people who felt bloated after consuming gluten with the rise of seemingly everyone claiming they were gluten intolerant in the 2010-2018ish-era it seemed more or less a fad diet. (3-PB)
Yes (1-TW)
6. Have you seen information on social or mass media about Celiac disease and other gluten related disorders? Please describe.
Yes, I have learned a lot about it. (2-MS)
I have seen exactly zero information regarding Celiac disease. (3-PB)
Yes. (1-TW)
7. How do you feel about public treatment and response of the gluten free diet on social media (Twitter, Facebook, Instagram, YouTube, Tik Tok, etc)?
Back in the 2016-18ish era, it was largely seen as a cultural fad and there were a
lot of problems with the framing of the issue, but I think now most people treat the
issue with a lot more respect and nuance. (2-MS)
I feel absolutely shocked at the level of ignorance regarding this discussion in both social and mass media. I feel absolutely shocked at the level of ignorance regarding this discussion in both social and mass media. (3-PB)
It is under represented and there is lots of false information (1-TW)
8. How do you feel about the treatment and response of the gluten free diet in mass media (news outlets, magazines, TV shows, Hulu, Netflix, etc)?
It’s mixed. There are gonna be a lot of different takes on the issue, so it’s hard to
parse everything out, but I will say most people would be supportive if you talked
with them face to face. (2-MS)
I feel absolutely shocked at the level of ignorance regarding this discussion in both social and mass media. I feel absolutely shocked at the level of ignorance regarding this discussion in both social and mass media. (3-PB)
I think its getting better but much improvement is needed. (1-TW)
9. How do you feel the media treatment of the gluten free diet has affected public perception of what it means to deal with Celiac disease and eat gluten free?
How does this public treatment affect your daily life and habits?
Lately, I think it’s mostly fine, apart from a few celebrities who are stuck in the
2016 era and still think it’s a fad. I think the issue is treated with a lot more
respect. (2-MS)
I think that the jokes of general public perception regarding gluten intolerance are due mostly to the scores of fad diets impacting people who actually are celiac. A boy who cried wolf syndrome. Its horrific really. I can’t count the amount of people who went on a gluten free fad diet because media convinced them gluten was the source of weight gain. The same people who aren’t Celiac or Gluten Intolerant claiming to be so degrade the public knowledge of what being Celiac or actually gluten intolerant is like. (3-PB)
It has not helped at all. Celiac disease is a grassroots issue. News coverage is not helping. It is a gtass roots issue of people that have healed each other from people that have to worry about getting cross contaminated. Because the FDA is not doing shit. (1-TW)
10. How do you feel about jokes that make fun of the gluten free diet? Do you feel that such jokes affect the way individuals treat people that have a gluten related disorder (Celiac or otherwise)? Please expand on this.
Again, pretty mixed. Some jokes critique people who insincerely do the gluten
free diet as a way of showing off, but there are still instances of people with
celiac being roped into that group, and gives leeway on how seriously people
treat the issue, which inevitably causes more people with celiac to be,
essentially, poisoned. (2-MS)
Honestly I’ve not heard any jokes regarding GF diets in a number of years. It never really impacted me. (3-PB)
Please expand on this more thoroughly. The jokes are discouraging and immature. (1-TW)
11. Watch this short documentary film, Glutened by Hayley Repton which was made by a documentarian about being diagnosed with Celiac disease and discuss your impression of the documentary. Please take notes on specific parts of the video that leave an impression on you. In what ways can you relate to the subject in the video?
I think the restaurant bit in the end really stood out to me. When I ate at a
restaurant with my mom, I would get so worried if she would be sick the next day,
and I had flashbacks to that when I was watching the end clip. (2-MS)
Video 1 – honestly after witnessing Michelle’s struggles with celiac, this would probably be my reaction as well.(3-PB)
Well represented of people with celiac. I can imagine being her husband next to she when she feels sick. My only problem with the documentary is that it doesn’t show other people who support loved ones with Celiac disease. For the people who support and know the severity of Celiac disease, I was missing scenes that it should have. If she had people helping her and showing some of the real trauma of the disease. (1-TW)
12. Watch this video of various comedians and their discussion of the gluten free diet. Please take notes on each comedian and discuss your impression of the performance.
Lots of these fall into the same issue I said earlier, this roping in of people who
have celiac with the fad some people had at the time, and mocking both is the
same group. I didn’t have issues with all of them, but most of them had that
problem. (2-MS)
People treat this as a fad diet, ignoring the fact that Celiac disease is a very serious condition. Again, I think the ignorance was birthed by the scores of people who appropriated GF as a fad diet. This hurts the people trying to spread awareness of the actual Celiac community (3-PB)
Although funny, most comedians are very ignorant towards Celiac disease as are most food staff and underpaid restaurant workers. I noticed that there were no peanut jokes when it came to jokes about allergies because they know better than to joke about peanut allergies. The last one stuck out to me, that he was saying that people didn’t really understand what “glutens” are showing that he feels like gluten free is a trend and is not considering Celiac disease. The ice cream one thoughts – he was probably the most ignorant of everyone…you don’t eat Cadillac, you eat ice cream….and yes, they put gluten containing additives in things that you wouldn’t think (like ice cream) and it really affects those with Celiac disease (1-TW)
13. Watch this clip of a comedian with Celiac Disease and discuss your impression of the performance
https://www.youtube.com/watch?v=Zky2ShG3XPk&t=1s
I thought that was funny, I think it properly frames the humor in a way that shows
how much eating gluten free can suck sometimes, without attacking people with
celiac. (2-MS)
Regarding the awareness of Celiac disease, it is absolutely shocking this level of ignorance that exists. It seems so obvious that if we can have food allergies like nuts, dairy on an ingredient list, why not gluten? An actual national accreditation for GF foods. Knowing my friend has really opened my eyes regarding the insane level of mislabeling and misrepresenting GF products This video perfectly sums up the public perception of the Gluten Free Diets. (3-PB)
I think his stand up routine was basically laugh so you don’t cry after being diagnosed with Celiac disease. He clearly was upset about the diagnosis and it is a hard blow even for spouses like me because I cannot cook gluten at home and by taking a risk of eating gluten. Lifestyle changes are hard, but they are manageable. (1-TW)
14. Watch this news clip and discuss your impression of how Celiac disease is presented to the audience
https://abcnews.go.com/WNT/video/boy-celiac-disease-shares-emotional-letter-77789112
I think it was nice, it provides info on a medical issue, how it affects people, and
what people are advocating to fix it. (2-MS)
I feel that the times are changing and although it has been slow in the past years, Im happy to see that government steps and mass media acknowledgement has begun. I feel encouraged and like there is more to do but overall, I am happy to see this heartwarming video. (1-TW)
15. How would you like to see Celiac Disease presented to the public in news clips and informative videos online? Are there any recommended online resources that you suggest or that you have found to be helpful? Are there any that you have found to be harmful? Please expand.
I think that treating celiac like the medical issue it is would be the most effective
way of getting people to take it seriously, the same way people take those who
are lactose intolerant seriously. I don’t know any resources at the top of my head,
but a wikipedia search could be a good starting point for those trying to learn
more. (2-MS)
This seems like something people should be educated about at an early age. (3-PB)
I would like for it to be categorized like any other food allergy (shell fish, peanuts etc). (1-TW)
16. How would you like to see Celiac Disease presented in creative or fictional endeavors like comedy, television, artists and documentarians? Is there any recommended watching or reading that you suggest? Are there any that you have found to be helpful? Are there any that you have found to be harmful? Please expand.
I would like it just as much as I like diversity in everything else. I will say that
trying to get comedians to treat the issue with a little more respect is definitely
something to focus on. (2-MS)
I think Disney would really help if they had a group of characters with food allergies and Celiac. (1-TW)