Dude note: Please stay tuned for an update on Jennifer’s Way Bakery and what is going on behind the scenes a bit. Hope to post about that tomorrow. But for today, I had to share this email I received last night. It’s a dandy.
I have a rant/story and would like some feedback/validation. I was at a company party this weekend with my husband, who is celiac. I eat gluten-free since he does. He is new to his company, and we were just meeting “the team” and their significant others. I hit it off with one very nice lady; a wife of his coworker. We talked for about 2 hours while the employees chatted. She showed me pics of her son, and even invited us over for a traditional meal from her culture.
She suggested we get some dessert. I told her I had scoped out the dessert table in the buffet and there was nothing I could have. She asked why, and I told her because my husband is celiac and I like to support him. She looked at me, puzzled, and asked “will he die or something?” I told her, as briefly as I could, that his family members have died of stomach cancer which may be linked. She kept staring.
I told her his sibling had stunted growth until they figured it out. Still nothing.
Maybe she had a little too much to drink for this conversation? Finally, since she is a new mom, I told her that I like to be especially careful myself in case we are to have a baby with half his genes. Her response was, “My husband and I were discussing gluten free on the way to the party. We decided it is an American invention.” Verbatim.
[Dude note: Let that sink in for a second. Ok…carry on.]
She was smiling sweetly. I nodded, vaguely, thinking she was crediting U.S. companies with helping celiacs by making GF food more available. I don’t know her background besides where she is from and figured her homeland must not have good availability yet. She smiled more, took my arm and said, “Good! Then let’s go!” and led me to the desserts as I slowly comprehended that she was saying that celiac disease itself is an American invention. Oh no! Maybe I was the one who drank too much!?
I panicked a little as she linked her arm in mine and stood in front of the buffet table. Fortunately, she decided most of the desserts looked unappetizing. I agreed, “they look horrible, they’ve been on this table for hours!” My head was spinning. The desserts looked fine minus that I knew they were all gluteny cake, but she was giving me a possible out from a confrontation. I thanked my stars when she finally said that yes, the desserts must have been out for too long, though she still eyed a piece of cake. She still gently had my arm. I told her there was a hot chocolate and coffee bar, I’d rather have that. She perked up at the sound of coffee, and I escaped.
It was a non-incident, really. But it rattled me more than any restaurant experience, or family party, or trip to the grocery store ever has, because in all of those places I can defer eating or buying something and it’s been acceptable. Maybe someone rolled their eyes before giving me what we needed, but they do or I leave or go without. This time, it was deemed unacceptable by someone who could not see eye to eye for a reason invisible to me.
Was it the alcohol that made her unable to understand? Should I try to explain again later? Was it culture differences? Do I pursue a friendship with this otherwise decent seeming person? What do spouses do when they are confronted and told “well you aren’t the sick one! Eat!” Does anyone actually know the effects of gluten on babies with a celiac parent??
I know celiac is not an American invention. First, while not perfect, the science is there to test for it. Second, it’s not an invention. That’s like saying people who cough invented pneumonia. Third, Italy has been giving stipends to celiacs and testing children for YEARS before most Americans even knew what gluten was.
But do other cultures generally think celiac is an “American invention?”
What do you think folks? How should she best handle the situation? And please…nothing personal here against the misguided woman. I really want to get to the core of why celiac disease may be perceived this way. Give me your top reasons. Thanks.
I would say no, not an American invention…Europe, italians, even canadians “got it” about celiac before we did. Like good Americans we quietly died of stomach, intestinal & pancreatic cancers where no one outside of direct family were inconvenienced. Doctors valiantly gave us chemo till we died & spouses Valium & prozac dutifully supporting the American medical pill empires on our corpses.
Along comes a natural way to solve disease & it’s “oh my god the witches & their potions are back”. Imagine my pain, burning bones, gut rot & fatigue are solved by salad without croutons (ugh i know but stick with me). Celiac diagnosis are at an all time high because doctors finally understand the “flat villi” DO (or more properly dont do)…i was told about flat villi in 1995, no diet change no diagnosis just ” we don’t know why we dont know how check back in a few years once we figure this out”…17years & a third dead child later “oh you have celiac. Dont eat wheat, here is a hand out” (from italy).
Some cultures have so many different food options that “discussing it” isn’t an issue. Indian curries & many dishes traditionally use chick pea flour so even fried is ironically safe. Wheat breads like roti are always wheat & can be avoided by choosing chick pea bread.
The irony of indian cooking is not eating (think Italian manga manga) is an insult & disease a weakness of character best solved by eating. Yes, there are cultures where celiac isn’t seen as often, ironically the doctors that know about it, have it or deal with it from those countries are in the US. ..not testing people back home.
We all know celiac is not an American invention. Europe is way ahead of us on all things celiac. However, I have heard someone say celiac is a first world problem and I guess that may be somewhat true. I am not saying that celiac doesn’t occur in the third world – just that more focus is on it in the first world.
Not a first world problem at all. The highest rate of celiac disease is found in Northern Africa. Unfortunately it was discovered by delivering high gluten wheat flour as food aid.
So is this lady saying if I move to Europe, I will be “cured”?
On my way 😉
I live in Germany and my coworker finally got a celiac diagnosis after 10 years of trying to figure it out… but he is from the USA sooo… 😉
Seriously though.
I wonder if maybe this woman meant “choosing to eat gluten free when you don’t have to” is an American invention (rather than celiac disease being an American invention)???
The writer’s concern that her consumption of gluten might possibly harm a future unborn child because her husband has celiac seems abundantly over-cautious (I’ve never heard anyone discuss this level of caution), so I can see how the other woman would see the writer’s dietary restrictions as a choice.
Should the writer pursue a friendship with this woman? In my opinion, adults should be allowed to choose what they want and don’t want to eat (regardless of whether a diet is a medical necessity). A person who cannot understand your choices or tries to sabotage your choices is not going to make a healthy friend. I would stick to your values and resolve to keep safe boundaries with this other woman in the future.
First thing that jumped out at me was that the lady said, “gluten free is an American invention”. Not that Celiac Disease is. And to me, this is the entire reason no one takes the autoimmune disease which, contrary to popular belief, CAN kill you, seriously. The FAD dieters have created the illusion that there is no real disease that requires someone to be gluten free or quite possibly die a premature death. Even doctors don’t think it can be deadly. We need public service announcements, social media memes, YouTube videos that are deligently passed around to let people know that being gluten free, and I mean FREE, not restaurant style free, is a medical necessity and life saver for people who NEED it. I was diagnosed 16 years ago and the public perception of this disease seems worse now than it was then. As a community, WE not only have to inform, we also have to get real serious about our disease and not let anyone “shame” us into being lax in our judgement of what we can and can’t have. It is tiring, it makes a person hate having this disease, it sometimes makes me want to give up. But this woman was showing how ignorant the American public is about the NEED for gluten free eating by many people. Drug companies keep pushing more medications for constipation, diarrhea, bloating and every time I see another of their commercials I scream CELIAC!! People suffer from chronic anemia, liver disease, bone demineralization, kidney problems … no doctor ever thinks to check for Celiac in those cases because they are still being taught medicine by drug companies. Any other time this sort of thing comes up, I hope this woman, and anyone with Celiac, or who has a loved one with it, will stand up and tell the ignorant loud and clear, “Yes it can kill you!!!” because it can!! I was DYING at 47 years old when I finally got a diagnosis. We need to stop being afraid to tell people this disease most definitely can be deadly and get very serious about defending our NEED to be 100% gluten free.
I think celiac every time I see that commercial for xyfaxan for urgent diarrhea and linzess for chronic constipation. It just boggles my mind that a doctor would give those drugs without first trying to get to the possible root of the problem first. I guess there’s no money in food.
I’m a scientist (biological anthropologist). CD is documented in multiple human populations across time and space. genetic predilection, diet and food stale variation, and other factors come into play. It is not a American/Western cultural phenomenon.
Some refs:
Turner GD, Dunne MR, and Ryan AW. 2015. Celiac Disease: Background and Historical Context. In: Anthony W. Ryan (ed.), Celiac Disease: Methods and Protocols, Methods in Molecular Biology, vol. 1326,
DOI 10.1007/978-1-4939-2839-2_1, © Springer Science+Business Media, New York.
Sams A, Hawks J. 2013. Patterns of Population Differentiation and Natural Selection on the Celiac Disease Background Risk Network. PLOS One. DOI: 10.1371/journal.pone.0070564.
Cummins AG, Roberts‐Thomson IC. 2009. Prevalence of celiac disease in the Asia–Pacific region. Journal of Gastroenterology and Hepatology 24: 1347-1351.
Scorrano G, Brilli M, Martínez‐Labarga C, Giustini F, Pacciani E, Chilleri F, … & Rickards, O. 2014. Palaeodiet reconstruction in a woman with probable celiac disease: A stable isotope analysis of bone remains from the archaeological site of Cosa (Italy). American Journal of Physical Anthropology 154: 349-356.
Food staple, not stale. Sorry, fast typing.
I guess I don’t understand people when they hear the word disease, do they not understand what that word means? I think I would be pretty frustrated after having explained and gotten a response like that. Perhaps some sort of written material would help her understand that this is not an “American invention”. I think all I’d had to hear would be the two words autoimmune disease and know that that is a game changer not a fad.
When first diagnosed with NCGS more than ten years ago , my earliest research disclosed celiac was mentioned in medical textbooks as far back as the Crusades , even the Roman empire described the symptoms in terms we still use today, ie loose stools, headaches, joint aches, and much more. The ties to stunted growth , fertility, came later. As others have mentioned , Europe has been way ahead of us for centuries. Travel to the British Empire, mention celiac and you will be welcome with open arms. Bring a birth certificate to Italy and you too can come home with a suitcase full of products free from the local pharmacia. That said, I think what may be an American Invention- if there is any such thing- may have come from these idiots who think the diet is a weight loss procedure, the latest fad- who are truly ruining it for those for whom it is a lifesaver. In helping restaurants in my area work with gluten free patrons, I have told them to go ahead and ask if someone is truly celiac or gluten sensitive — if they say no, then don’t take any special pains with their meal! This in support of chefs who are tired of making special meals only to see a patron polish off the bread basket and guzzle a couple of regular beers. Finally, yes, people can die from the AFFECTS of UNtreated ceiiac disease. Digestive cancers are more common than we realize, thanks to the OTC products for constipation etc, flooding the airwaves. Makes me want scream too!
“why celiac disease may be perceived this way?”
With over 300 possible symptoms, the extent and depth of Celiac Disease (and related dermatitis herpetiformis – “CD of the skin” largest “organ” of our body) is not even comprehended by most doctors much less the public in general. My own GI, whom I respect and trust, told me I was a “medical mystery” because of all of the far reaching systemic health problems my autoimmune system’s reaction to gluten induced CD & DH has caused me personally ranging from 3 different types of cancer & 5 retina surgeries and still counting skin, organ and intestinal pain & issues after 3.5 yrs of being as free from gluten along the way as I know how. My Mom’s oncologist still has trouble comprehending that Mom was completely healed from Stage 4 lymphoma solely by not ingesting gluten. I don’t expect the uninitiated to comprehend when they’ve not walked a few painful steps in our CD and DH cancer ridden shoes. Advocacy and Education of the uninformed masses are still daily required.
Ferreting out all possibilities of gluten and cross contamination therefrom has become an almost full time job just to stay as healthy as possible during the last 3.5 yrs. However, well worth the effort!
CD is definitely not an American invention – Americans are just way behind some of the rest of the world in figuring out the extent of this insidious disease. Incidentally, after learning from Jennifer Esposito that my plethora of symptoms were most likely CD caused, most of my invaluable initial research came from decades old European medical papers, which helped me to understand what CD and DH were. $25,000 worth of tests (not treatments) later, my Drs confirmed my problems were gluten caused. Now 3.5 yrs later, I’ve lost count of my medical bills which are nearing 100G if not already there.
And yes, CD can and will kill you if left untreated – my Mom and I are living proof because we would have both been dead 2 to 3 yrs ago if we had not learned how to stop eating gluten. Mom undergoes more CT scans to document she is still cancer free in 2 weeks. I’m off to my retina surgeon in a few minutes for another review. Will the autoimmune fun never stop?!?
Still eternal thanks to Jen E and the Gluten Dude for their invaluable parts in this process of keeping us alive and as healthy as possible!
Thanks Hap.
My aunt has celiac disease, something I was aware of as a small child living inNorway 40 years ago. And lucky me inherited the same genes , now living in California, so it’s nothing new to people in my country at least..
You can just tell people he gets violently ill by even a microscopic amount of gluten and you don’t want to have to worry about giving him a kiss or a snuggle and accidentally gluten him.. ????
Regarding the baby, when someone is diagnosed with celiac disease, his/her parent, siblings, and children should be checked for it. However, if the baby hasn’t been given gluten yet, s/he can’t test positive for celiac disease. Even if the parents, siblings, and children don’t show antibodies, that’s something that can change over time. I was diagnosed in 2010. At that time, one of my children was diagnosed as well. The other two were tested to determine they do have the genes for celiac, so they’ll be tested for celiac every 3 – 5 years, even if they don’t have symptoms. Another one of my children was diagnosed last year; the third child so far is okay.
I don’t expect or want my husband to avoid gluten just because I have to. We don’t use gluten flour in our house, but we have a designated space for gluten products and a gluten toaster oven. Beyond that, of course he has to make sure he doesn’t contaminate the rest of the kitchen. I’m glad he can still go to a party and eat like a “normal person.”
I can see how the GF “fad” is annoying, and might be a U.S. kind of thing, but celiac isn’t. I probably would have educated the woman on the difference between GF due to gluten sensitivity vs. the GF fad, whether she wanted the education or not. If she was sharing her opinion, I can certainly share facts, right? And for the woman to lead someone over to the desserts, as if her opinion on GF meant anything, is ridiculous.
I can sorta understand how people from some countries might not realize what an issue celiac disease and the need to be gluten free is because wheat is not necessarily a universally used grain (and not to the extent that people in the USA and many European countries consume it). Nor are they likely eating as much processed food where wheat protein is used to thicken and improve the texture of food. In that context, I could see how someone from a country where wheat is either not used or used in small amounts might see it as a strictly made up American thing.
Confronted with this comment, I might question the woman more about her origins and the foods that they normally eat and explain, in a non-judgmental way, how and why gluten is bad for so many people. But I’m a tech writing nerd so ‘splainin’ things is part of my DNA (I sucked as a cat adoption counselor at our local shelter because I kept going off on the science of cat related things, like why calicos/torties were almost always female, etc.).
I also get into my ‘splainin’ mode when discussing why the food pyramid sucks, why we should be using saturated fats, and why eating cholesterol doesn’t promote heart disease.
I’ve lived in Italy for the past 8 months for my husband’s job. During that time, we’ve traveled to several other European countries. Not once have I mentioned Celiac disease and received a blank stare. In fact, when I tell people how nice it is to be taken seriously, every one of them gives me a quizzical look. Then they are absolutely horrified when I describe what it’s like to have Celiac is America.
Btw, I think it is awesome that you eat GF to support your husband! Mine eats GF at home, but not usually when we go out.
Yawn.
Fad diets do seem to have a peculiarly American flair to them. And gluten-free dieting is definitely a fad that people love to hate these days. To me, with the context given, it sounds as though the response was to the LW’s assertion that she eats gluten-free, without celiac, to support her husband. So without a medical reason to do so. Maybe that sounded more like fad diet than medical diet to the woman. It does seem rather extreme, but hey, it’s your choice.
But I so don’t understand the LW question about whether or not to be friends with someone she had a rather awful time with. Why bother? Even if you are a gluten-free fad dieter, even if you’re on the freaking grapefruit diet, do you want to spend social time with someone who is going to question your right to choose what food you, as an adult, put into your mouth?
It is my understanding the the cause of Celiac symptoms (gliadin ingestion) was discovered in Europe. Under Nazi occupation, some previously sickly children in orphanages got significantly better. It turned out that rationing had cause their diet to be Gluten Free as a side effect.
I think foreigners might get the impression that Gluten Free (and thus CD) is an American invention because there is so much mention in the media including advertising for GF foods.
Ignorance is the simplest and most obvious reason answer. When a disease is not accurately widely understood in the US by the medical profession, let alone neighbors, friends, and relatives. Why would we expect other cultures to understand this when they’re still trying to get safe water? (Except Flint, MI, that was negligence.) It’s a matter of priority.
Yay! Many more wise comments since I started drafting this reply yesterday:D
– geek warning ahead, my backgrounds in political science and international development/human geography might have influenced my writing a bit more than usual…
First of all; navigating social life and being gluten free is sometimes a rather interesting experience. Especially around new people and especially if you actually have explain ALL THE THINGS, and then not get heard.
It happens, unfortunately. But I hope the writer of the original letter nevertheless had a fun night:) Cool that you are supporting your husband, btw!
Second of all; of course coeliac is NOT an American invention. And researchers actually think that the disease is equally distributed across the globe. With articles referenced in a comment above to prove it.
However, coeliac is a disease that isn’t globally well known. It’s not on top of people’s minds here in Norway, and I kinda doubt it’s the most discussed topic in the US either (when you get outside safe heavens like Glutendude’s place). Never mind the Global South (i.e. everywhere besides “The First World”), where most of Earth’s population do currently live.
In these parts of the world people die a lot more often. South Saharan Africa has the highest level of percentage of the population living in absolute poverty, but most poor people live in South Asia. Come to think of it, most people live in South Asia (!).
And stating the truth, their access to medical professionals aren’t always great. And the doctors there don’t always have the access to equipment/medicine etc. Which means that people’s options for figuring out what is wrong with them are limited. The reason, statistically speaking, cancer is basically non-existent on the African continent has little to do with people’s medical history and a lot to do with available data and doctor’s offices…
In Norway it takes an average of 5-8 years of regular visits to the doctor’s office in order to get the correct diagnose of coeliac disease. Rumours has it the US is much the same in these matters. But with more general awareness about the diseases this will hopefully change. Globally.
But until then “the first world/west-whateveryouwishtonameit”, are the places where coeliac is best known (albeit still not well known or understood). And it’s here it’s most joked about in the media. The latter which of course can bring all kinds of misinformation and misunderstandings to the general public, no matter what their backgrounds are.
No, coeliac disease is not an American invention. But the US is still the sole largest player in the world when it comes to media influence and populair culture. And most of the time in US popuar culture GF is a joke, and CD is unheard of. Of course this influences what people think, and believe. But unfortunatly, it doesn’t make CD or the necessity of a gluten free life any less real.
Until times have changed it looks like we have to educate people, even though it’s not really our job, in order to stay safe. – (almost) no matter where we are in the world.
Sorry for any spelling mistakes *cringes*.
Celiac disease exists in Europe, but I have friends who traveled in Asia and apparently they did not know what celiac means there. My guess is that it is genetic and only Caucasians have it? I don’t know exactly, but it is true that there are different perceptions in different cultures.
Don’t want to defend this lady, but maybe she’s from a country where celiac is not talked about or where people are really poor (I guess if you’re starving you don’t really care for celiac, do you?)
On a side note, I was out with a nice American family at a buffet and explaining that I couldn’t have anything because I have been diagnosed celiac. The mother was very sad to hear that and asked me for many details. But after that, she asked me if I wanted a piece of cake: so I had to explain her ONCE AGAIN I was celiac. She ended the evening eating delicious chocolate in front of me and saying “You don’t even eat chocolate? Good you must have such a good self-control”.
Sometimes people really just don’t listen.
I’m either secretly American or its in Australia too. Just come back from my CD diagnosis- after three months of extensive testing to make sure she got it right, which seems a lot for an imaginary illness. 😉
If celiac was an American invention then my British online friend wouldn’t have sent me a question about celiac for a school project. (Isn’t it cool how she’s doing a project on celiac for school? Way to go, British schools for raising celiac awareness)
If it was an American invention I wouldn’t have thrown up for an hour straight after accidentally eating gluten. If that’s not proof then I don’t know what is.
Kinda funny that she thought celiac is an “American Invention” considering in the not too distant past most American doctors thought it only affected Europe and not the US (never mind that we all pretty much descend from that continent …….[insert eye-roll here])
“what you mean you don’t eat no cake! That’s ok, I make pie….”
That’s funny. Theresa, that would be great on a t-shirt.
It’s an American thing grew up in Mexico and never heard about it till I moved to the US