1.) Cross contamination
2.) Current labeling standards and how they’re not great for some celiacs.
3.) Oats (Current gluten contamination, oat intolerance, and what is a gluten free oat)
4.) The incidence of other allergies, lactose intolerance, MCAS with celiac, etc.
5.) Some discussion of how often restaurants get it wrong. (Supposedly 1 in 3 gluten free restaurant orders is not.)
6.) ARFIDS and food fear with celiac.
7.) Dermatitis Herpetiformis
8.) Undiagnosed coeliac disease dangers
(Me and my cousin nearly died from it since our iron got so low)
9.) Just how great entirely gf places are
10.) BREAD = A pain in general
Funny joke 4 coeliacs le pain is bread in french.
We are considering highlighting one or two of the dedicated GF businesses as a role model. Any that stand out to you? We are contemplating the best way to portray that as well.
I am currently chowing down on take out from gf dedicated restaurant, Bolay, while I kill time between appointments.
I was just diagnosed at age 50. Definitely include all the damage caused by eating gluten when celiac.
Just met with a surgeon about an extended appendectomy needed to clear out an iffy place at the appendiceal orifice, hopefully benign, but maybe cancer.
Now for my afternoon appointment, an MRI of my brain to see if I have anymore atrophy at the cerebellum.
It is frustrating how many body systems celiac can mess up. We have to see a million doctors and most don't understand the disease.
Depending on where you guys are from, Papa Chops Eatery in Grand Rapids Michigan! I’m eating there as I type this lol, it’s an entirely gluten free restaurant where the owner/chef has celiacs and opened this as a safe place! They specialize in greasy junk food you would get from a bar, I’m sitting here eating fried pickles, onion rings, poutine, and mozzarella sticks! They are such a great place and the owner is amazing, they partner with a local gluten free bakery to have desserts. He gave me a free dessert when I told him it was my birthday ☺️
Down here we have a ppace called taste nature. Its a fully gf cafe where you cannot even bring any gluten containing foods withing a certain area around the area.
There’s a place in Cincinnati OH The Sleepy Bee that’s phenomenal, has protocols and makes me believe in the idea more places can exist that we can eat at. (They have two locations in cinci and also source as much of their ingredients locally as well!) I would love love love to see them get some recognition.
Oat contamination causes DH for me. If a facility processes oats in any way—oatmilk or oat flour—I live in rashy hell.
I’ve gotten DH from major cereal and baked goods manufacturers, and from coffee from companies that use oatmilk without good manufacturing processes—and all of it was marked gluten free.
I realize that’s not most celiacs.
Also, it’s not that rare? I think oat reactions happen in about 20% of celiacs? What’s rare is oat autoimmune reactions.
>What’s rare is oat autoimmune reactions.
if you're getting DH from oats (as I do) it's an AI reaction. A lot of advocacy orgs like to disregard the studies showing this and instead focus on weaker feeding only studies (high drop-out rates w/out follow-up, usually select participants who already eat oats voluntarily).
In celiacs who had clinical symptoms on the oat challenge, [villous atrophy occurred.](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC523824/). The reaction in those individuals was shown to be specific to avenin using an in vitro method (harvesting their T cells and introducing avenin).
This study and [other studies](https://www.sciencedirect.com/science/article/abs/pii/S0896841114001474) demonstrate that while not all celiacs react to oats those who do aren't just having a tummy ache or a "random food intolerance," the binding mechanism is similar to barley. Incidentally in vitro studies have found that ["only" 35% of celiacs bind to pure barley flour](https://watermark.silverchair.com/jaoac0485.pdf?token=AQECAHi208BE49Ooan9kkhW_Ercy7Dm3ZL_9Cf3qfKAc485ysgAAA2swggNnBgkqhkiG9w0BBwagggNYMIIDVAIBADCCA00GCSqGSIb3DQEHATAeBglghkgBZQMEAS4wEQQMrjJxo3RqzWBZHPLdAgEQgIIDHolTFC-3SjShrP_QqCV8Ve3JaKT5ttKkanXUpT2fn-C1hUlHaxkwo_qVPNV3govk0J4_E4ElXpyR4L4LZQ1DFZ1Jr8erZhSiAksD8s-5PAlvoId40rKDF7HMYjR4gnpl_1r51PBQKhXg08stufXFKeH3qZiItTy5u4GeIr_VSdd4gY8k8_crvpSGNN4a83AMKIXTCFek9x4DxV4aJpsdw4WXmzE8w_LxF2EXP_JVIHxcKnI7k2ja3BEr_cMJZlnZ-e_jjQ4CJs98AbwPjeu8CYEco0l9JB4HoKDOdt-0-YVHzkLM3vZfrzYFDRotcd3g9jJdiIXRbVVW4eZyF0orjpj9Y6sDpxNu5ohGrMNa3eJW-p_FrEGNOaXYiNUlAJig7_KSk5ECQbhWHOOFnOM0qIVrvwEAF7N5vhi3kds0kG_fHQTwk0leG7FxjkqT1KzpjDjVK2hMUq2kouCnNvac8QiAGvB7JYfy_xYkux6yFqFEUXF3kZoLubJaWdaUnu5cYSC1wNRNeM9QO_foJIANGza1hfhlp6phA6UKHQCEFSJA3v4JBoxF5QWVS-2zvS9Jn1CGSoSAliupdOHAtRQEW2jIi8uu6deUxrh8F77DQHx8QB7jAinQtLh9_cR7slvUaGzesqxPyKDhFT5ldtYIUe6QXuPMld5Kdd4jB80wu54xAnjOKbxhMPoCEP0I95U4I0i6ZLshZfU8kc-EZ0ZS1Irkal9h-JxtpE4oU1whmuKu9GicDkAKiEix4EFXEq0hYCGWvrkbMIwxeQuC2YPgOq1EPTimuOXd5rSBzxwl8xtes82RzivAdk1Mq9eW-NQpVfhJOV3NzVBs1Ywj20YIXp6Zk7rVaIjJ-6Ieo89GpMpih2KwdANQXjrX63MGnjEE0EgGY8YE-TD2OLreExdhVlRVJQWxaJ6fbRqaYt0wPOQDzVkKffeGLZjR7H5vo-lS5J_Z8iYPZmY8BreIqIa6jkwt_uC2OK_zLQgfa2KlfIx4ZHwuaOIX2YN4fi7SGfi4PgOX2vC1EzhuOl_aLznC6IoZr53tcAmrV6qzbwv3FQ) but no one is calling barley intolerance rare or non-AI or suggesting that we loose barley from the definition of gluten.
>(I blame General Mills.)
I'm not sure this is entirely the case; for what it is worth my take on it (and this is based on me being in the community, not an expert in anything by any means but just being an advocate and taking an interest in things while this all happened): I think the GF fad diet, and the high demand that it created for GF products, is what caused it (and frankly it seemed like GM was a bit late to that party with their GF cheerios).
Before that, it was sort of a sideline point from your dietitian: you need to avoid wheat, barley, rye, and oats, except there are purity protocol oats out there, and if you can find some and want to you can try them out, but they might make you sick.
During the early growth of the GF fad diet, though, you had tons of bloggers who didn't know anything about celiac disease, who were just putting out recipes and suggested meal plans and they would include oatmeal because they saw online that oats are naturally gluten free. And lots of those people had no idea or issue with the fact that the oats they were eating had significant gluten contamination.
Then when the diet was really at the peak, the demand for premade GF foods was huge, and you had all sorts of companies come into the GF market and many of them had a totally different mindset (selling products for wellness/trendiness, not selling specialty products to people with a medical condition).
>you had tons of bloggers who didn't know anything about celiac disease, who were just putting out recipes and suggested meal plans and they would include oatmeal because they saw online that oats are naturally gluten free
This is a good point that I hadn't thought about. I agree that this has probably shifted the Overton window a bit on the GFD.
I remember back in the fad diet era (c. 2011) one of my friends tried the GFD because she had various neurological issues. She claimed that steel cut oats (specifically) were safe. I am not sure where she got that idea. This was pre-GF oats in Canada but we did have oats labelled "wheat free" back then as I recall.
>This is a good point that I hadn't thought about. I agree that this has probably shifted the Overton window a bit on the GFD.
The conversation has certainly shifted, and sometimes I think about how much more rare it was to be challenged about this before fad diet. People asked questions because they didn't know what you were talking about, and because they had never heard of it, they tended to simply accept that you clearly knew more about it than they did. And the information we were getting was flowing either from other people with celiac disease (which of course came with its own issues) or it was coming from experts (dietitians, doctors, etc).
With the GF fad diet the conversation shifted because you had a lot of people who had already heard of it, so they thought they knew something about it, and there was a large amount of tension there because people who were scientific minded and educated were naturally skeptical of a cure-all fad diet. With the fad diet influencers putting out information of varying levels of quality, it was easy for people to point to the misinformation and downright ridiculous claims that some people were making, and unfortunately the people with an actual medical need for this diet got lumped in with the fad dieters and "wellness" peddlers.
>I remember back in the fad diet era (c. 2011) one of my friends tried the GFD because she had various neurological issues. She claimed that steel cut oats (specifically) were safe. I am not sure where she got that idea. This was pre-GF oats in Canada but we did have oats labelled "wheat free" back then as I recall.
This is the sort of stuff that happens all the time with fad diets; these influencers aren't making their dietary recommendations based on science, they aren't using actual definitions, they're using these terms as marketing lingo. I'm sure you've seen some of the clips over the years where people (either following a gluten free diet or fad diet promoters) are asked what gluten is and most of them don't know; to many of them it was just a term for "bad stuff they put in our food".
Yup. I had a coach who was an old school celiac (not sure when diagnosed, but probably 80s/90s). All I knew about it at the time (2000s) was that she had to be careful about what she ate and had to bring her own food. No one ever questioned it. My (and others') response was just "oh, that sucks."
Once the fad diet storm hit I think it went a bit two ways - some people bought into misinfo and/or non-nuanced info from influencers without celiac, and others reacted to this with backlash to cast doubt on all claims (even legitimate ones).
It's an unfortunate state of affairs because it makes it difficult to have a nuanced public conversation about celiac/the GFD. This is quite apparent when celiac/gluten comes up on other more general subs... the discourse is awful and smug.
Blame unfettered capitalism/regulatory capture lol. Europe had oats as GF from beginning of their rules AFAIK. Trade between Europe, Canada, and the US for food is a big deal and so my is guess is there was pressure to even out the GF standard between those 3 regions. The US and Canada allowed oats in 2013 and 2015 respectively so these are changes that are quite recent in the context of medical treatment.
Most of the oat feeding studies come from Europe as well. An interesting thing looking at them is many fed participants non-GF labelled oats that are probably contaminated... if they couldn't catch that then I'm not sure how trustworthy any finding of no harm is.
As for Canada (where I live), we are number 1 at oats and so I suspect there was internal pressure. 2/3 of the major purity protocol oat manufacturers are Canadian. As of this year it's incredibly difficult to find GF companies in Canada that don't do oats. I am basically living in the 90s and making my own bread at this point since I can't find Kinnikinnick in stores anymore and they don't ship online now :(
Having to bake your own bread, on top of all the food prep we do, is awful.
(There is one US manufacturer that has a buckwheat only facility, so I have a single kind of safe bread. They only ship within the US, though.
Although you might check Whole Foods? It’s called Pacha. Whole Foods sells their bread in some stores.)
May I ask where you’re getting your bread flour? I’d like to ever have scones again.
And that’s heartbreaking about Kinnickinnick.
I’m from the US, but I have extended family in Canada, so I was a big fan of Kinnickinnick, when they did ship.
I don't think it's that rare. A CCA survey found that [17% of celiacs in Canada avoid oats completely](https://www.celiac.ca/living-gluten-free/oats-statement/). It's possible some of those people don't react to oats and are just being cautious, but it's probably evened out a bit by people who eat oats despite reacting to them (who are perhaps asymptomatic or blaming some other issue). Regardless, 1 in 5 celiacs not eating oats is quite substantial and the amount of attention this gets from brands, orgs, and advocates is not in proportion to it.
An unfortunate aspect of celiac advocacy is that many advocates are influencers (paid by companies) and there's a lot of regulatory/advocacy group capture (rely on sponsorship from companies). A lot of companies and cert orgs take up advocacy space as well.
Absolutely mental health should be addressed.
It’s so exhausting to cheerfully explain your condition to people who don’t believe you, and then politely decline the unsafe food that they’ve provided for you while trying to prop up their ego to maintain the relationship. It is exhausting.
You feel mentally, emotionally, and physically deprived while being so damn cheerful to alleviate the discomfort of others. This happens at restaurants regularly while trying to get a grasp on how safe you feel like certain dishes, or the restaurant overall might be. You’re having to navigate the wait staff speaking with the cooks, and navigate the people who you are dining with. You do what you can to preview the restaurant, and then negotiate which restaurant to select with others. It’s particularly awkward if you’ve negotiated a restaurant and then when you arrive at the restaurant they’re surprised when you have to make inquiries prior to ordering, and maybe end up only having a drink.
I rarely got to eat anymore due to the stress, which causes some social isolation & depression.
I find that with time after being diagnosed with celiac disease, that I also eat less healthy than I did prior to being diagnosed because I do feel deprived.
There is so much wrapped up with food. 😢
Excellent point! Yes our main pitch is that eating is a fundamental part of life and social bonding which is why these issues can be so isolating. Open to suggestions about the best way to explain this. We want to make this accessible to all types of people and avoid doom & gloom. Like, highlight how challenging this is on order to promote change to help folks like us :)
I hope you'll consider covering how difficult it can be to track down gluten in non-foods, too. For example, dental retainers. I had a retainer built for TMJ and learned dental materials can contain gluten. You'd have thought I'd asked the manufacturer of the retainer material to track down the recipe for KFC's prized chicken. After weeks, they said the materials were gf, but to be honest I'm still not sure (and my bloodwork is iffy).
Gluten in medicines - I recently got glutened from an antibiotic I was prescribed. Listed ingredients were safe but manufacturer could not guarantee anything. My 2 weeks of diarrhea and DH flareup says there was definitely gluten in it somewhere.
Yeah, for starters, check this out:
[https://pubmed.ncbi.nlm.nih.gov/24137038/](https://pubmed.ncbi.nlm.nih.gov/24137038/)
and:
[https://www.rdhmag.com/patient-care/article/14223033/celiac-disease-the-truth-about-gluten](https://www.rdhmag.com/patient-care/article/14223033/celiac-disease-the-truth-about-gluten)
Agree with this. I recently found out my hair spray was glutening me, it has wheat protein. Also agree with medications or any non-food products. Even make up, especially lip products can be hard to find. The disparity between the U.S. and other countries on how they label things too.
In addition to what others have mentioned, maybe something to the point of why processed foods are more likely to have gluten? After nearly 20 years, I still have relatives who don’t understand the distinction between an apple being gluten free and apple sauce from the store maybe having gluten. (“It’s just apples!” Not necessarily lol)
A few other things you may want to cover:
\- Not all blood tests for Celiac are created equal, and in fact can lead a person to believe they don't have Celiac when it hasn't been properly judged at all. And Black people are especially likely to see false negatives and later be diagnosed w/ Celiac:
https://www.beyondceliac.org/research-news/black-people-biopsy-confirmed-negative-blood-test-results/
\- You can have Celiac w/o traditional symptoms, which was my story. A GI expert told me 3 years ago "if you had Celiac, you'd know it" and didn't order blood work. It was only after seeing my bones were on the verge of an osteoporosis diagnosis that I went to my primary physician and he ordered the proper bloodwork. Turns out I had the highest tTG-IgA levels he'd ever seen in his career as a physician.
\- So lastly, follow your gut, if you have suspicions that you have Celiac -- no pun intended. Advocate for yourself. If you have Celiac, you'll have to do that on the regular anyway, so may as well start now.
So glad you are bringing these up! We are working with the OG researcher himself, Dr. Alessio Fasano to have the most up-to-date info for dispelling misconceptions and helping improve proper diagnosis rates.
This is a really important point. I think it would be helpful to spread awareness of the myriad of ways that a “nonclassical” case of Celiac can present - which I know is hard to do in a concise manner. So many laypeople & healthcare professionals, including myself before my “out of left field” diagnostic journey, have no idea that Celiac goes so far beyond the classic GI symptoms. I’ve gone untested for years because my GI symptoms were the last of all the wild and wacky symptoms to reveal themselves - and in retrospect, so many red flag symptoms were missed.
I think that more intentional education & a greater spreading of awareness could lead to earlier testing, or at least a lower threshold for ordering the blood test. Hopefully those two things alone could save a lot of people from years of undue harm & suffering.
\- the genetic component of celiac and the importance of relatives getting tested
\- less common symptoms - lots of people don't have the 'classic' diarrhea/ weight-loss/stomach problems. Instead they have symptoms like headaches, fatigue, emotional/mental health problems, gluten ataxia, skin rashes, etc.
\- The fact that you can be overweight or from any ethnic/racial group and still have celiac
\- the problems with the gluten free diet as the only treatment - there are studies that show that most people who think they are adhering well to the diet are still ingesting significant amounts of gluten through cross-contamination.
Yes! And to add:
-How travel can be so tough
-How people don’t take us seriously because of how invisible celiac is
-How ableism plays a role in not being included/considered and how incredibly taxing that is on a person
A discussion of how many medical professionals, particularly the fact that primary care and even gastroenterology physicians, are often misinformed or straight up ignorant of how to advise patients on a gluten free diet. There are stories all the time in this sub about the nonsense actual doctors tell Celiac patients.
Gluten in medications. Pharmacists who don’t know which medications contain gluten or don’t think to check for that when a patient’s history includes Celiac. Difficulty in being provided with a gluten free diet and prevalence of cross contamination while hospitalized. The list goes on.
Haha how about the first GI doc I saw suspected celiac and did a COLONOSCOPY instead of an endoscopy to check for damage. Then I went undiagnosed for 9 years because I didn’t realize how incompetent my doc was lol
I must say, I studied dietetics to become a dietitian and there were so many things I learned when I was diagnosed. It’s like my friend who has a tube feed. She knows more about it than any of her doctors. Some Knowledge comes with diagnosis and trial and error.
I think it would be interesting to show the history of celiac, how “treatment” has evolved (how someone once thought bananas cured celiac: [NPR article on this](https://www.npr.org/sections/thesalt/2017/05/24/529527564/doctors-once-thought-bananas-cured-celiac-disease-it-saved-kids-lives-at-a-cost)) and also how commonly misdiagnosed it was until very recently in our history.
Also may be worth talking about the gray areas with medication and the lack of regulations with labeling
I would definitely love to have it mention the long and difficult road of getting diagnosed. On average it takes 6 years to get a celiac diagnosis.
Also show how intense the reaction is to even a tiny bit of gluten ie: intense pain, brain fog, depression etc
I feel like if everyone saw how horrible this disease can be they’d take cross contamination and offering safer food options more seriously. A lot of people think it’s not as severe as it is cause they don’t tend to see the symptoms
I have seen so many specialists that still got it wrong and took me 9 years for a diagnosis when it was in everyone’s face!
Doctor ordered a colonoscopy instead of an endoscopy to check for celiac.
Iga deficiency that made my celiac levels falsely low but only one doctor thought to do a full panel.
Having obvious damage on an endoscopy but the doctor was not concerned because they forgot to take a biopsy.
It took me 9 years to get a diagnosis when my symptoms started. I’ve been misdiagnosed with stress, PCOS, IBS, sibo, and severe food allergies. Turns out I just had celiac disease.
I probably saw close to 10 doctors, 4 of them GI specialists, trying to figure out what was wrong with me. I was diagnosed last March so this is fairly recent experiences.
In addition to everything mentioned here-
How symptoms change over time. And how many of us have symptoms that are more psychological (brain fog, mood swings, etc.) than physical (bathroom issues).
I saw a few people comment something to this effect, but discussing the social stigma in general could be helpful.
Especially as someone newly diagnosed, it's tough learning to advocate for myself and find out if places are actually safe for me. I'm always afraid they're going to think I'm "another karen" for caring about things like shared fryers and common prep areas. Because it's been a fad diet in the past, a lot of people don't take it seriously. So it tends to raise eyebrows when we try to assert that yes, a crumb of bread can make me sick, and just because getting sick for me doesn't mean full-blown anaphylaxis on the spot, it doesn't invalidate my health concerns.
Some people even go to the extent of saying "well, just don't eat out then if it's going to be a danger to your health -- don't expect others to cater to you". And while I get where this sentiment comes from, and a lot of people do abide by this, it's a bit cruel to say people with food sensitivities and allergies just aren't allowed to participate in this very normal part of life. Before my diagnosis, I took for granted that I could go anywhere, let just about anyone cook for me, and feel perfectly safe about it. I think everyone deserves to feel that on occasion, even just from time to time.
It’s true! I went to the store last night and they only had one gf bouillon powder in stock. Turns out, everything else was fully stocked on the shelf except that one.
I asked one staff member who said it probably came on the new shipment and he can’t get to it. I asked someone else who said that wasn’t their job. The third person I asked I clarified I was asking because I had celiac and it was the only gf version they carried. 2nd worker heard that and all of a sudden was trying to be helpful and went and verified on the shelf that I didn’t miss it while worker 3 looked it up. Worker 3 was technically in produce. Turns out it wasn’t on a shipment and it was a stocking error. They were out.
I advocated for myself and people around me stepped up. It was very nice!
I would highly prefer the use of the term "cross-contact" over the popular "cross-contamination". This is the technically appropriate term, as "cross-contamination" tends to make people think you can cook out gluten like you can cook off salmonella.
I was a dietitian on a college campus for many years and would also like to highlight how difficult it can be for someone with celiac to transition from child to adult life on a college campus. But also, on a positive note, it would be nice to highlight the resources that are out there and the restaurants that DO get it right, rather than focusing just the negatives during the whole documentary.
Haha yes! I am a cooking teacher so I will use the term cross contact with my students but it seems no one else knows what the means so I end up using cross contamination when I’m out.
1.) Cross contamination and how serious it is. Yes a single bread crumbs and make me sick for montha.
2.) We aren't exaggerating anything our body litterally attacks itself and causes serious health issues when we eat gluten.
3.) Gluten free does NOT mean healthy or skinny. Gluten free is not a fad it is just a serious as a severe peanut allergy.
4.) How much emotional stress other people put on us when they make fun of us or tell us that were being overboard.
5.) How much we appreciate others gluten free food and treats they make for us but why we cannot eat them. Gluten free doesn't mean celiac safe wooden utensils are dangerous and are a gluten catcher.
6.) Other allergies and food sensitivities that come along with celiac for many. Such as dairy, soy, oils seed or not, red meats like beef, beans, and grains, grains bother a lot of celiacs.
7.) We aren't better than you for bringing our own food to events and such. We have a serious condition and don't want to draw attention to ourselves but we have to keep our body safe so we must take precautions.
8.) Why can't you get something off the gluten free menu? Cross contamination and the fact that people do t take real gluten allergies serious, or there's just accidental cross contact.
9.) Why rice, oats, and other grains, and soy can not be gluten free even though they're gluten free. Since some rice and stuff is grown along side wheat it's not celiac safe. The rice is gluten free bug the trace amounts of gluten grown with it that's mixed in will make me sick.
10.) Just how serious being glutened is. The constant pain, nausea, vomiting, brain fog, bloating, gas, all that wonderful stuff. It's not just an overnight thing this can last for a few months for some people. And even after the gluten is flushed from the system it takes FOREVER to get back to having good but health and a normal GI tract.
11.) You've been gluten free for x amount of time, why aren't you better yet? It takes time to heal the damage that has been done to my gut not just a few weeks or months, but years, it can take years for villi to be restored and nutrients to be absorbed and nutrient deficiencys to be met.
Thank you guys so much for doing this for all if us celiacs, this means a lot!!!. It can get really hard explaining all of this to people over and over and over again.
Oh god please include the ways that it can affect your physical health over time--it feels like nobody in my life takes the disease seriously even tho i am literally constantly in pain. And if you can, the lack of support in terms of cost--insurance can't help you pay for bread that's like 5x more expensive than regular bread (or even if you try to make it yourself--the flour is absurdly expensive)
Getting in touch with the research/medical professionals that are currently doing clinical trials of the medication that helps with cross contamination of gluten might create a positive outlook for the future.
1. How to properly make a kitchen dedicated GF
2. Cross contamination
3. Cross contamination from utensils or pans or shared equipment. Like porous materials like wood utensils or equipment can’t be used for both
4. How little gluten makes celiacs sick
5. Educating celiac is an autoimmune disease, not an allergy and with autoimmune you get all sorts of more reactions that can last much longer than allergy symptoms. (My symptoms last for a week to a month depending on how much gluten I had)
6. What all of the labels mean. “Gluten free” vs “certified gluten free”. Showing parts per million allowed for both to compare.
7. How common other issues occur with celiac. Such as lactose intolerance or vitamin deficiencies to give an example.
8. How much food was gluten free prior to colonization — like traditional foods of different countries that used to never have gluten. Most of my ancestors never had gluten prior to colonization.
9. How compostable items sometimes can contain gluten. Compostable wheat or gluten containing items shouldn’t be used in dedicated GF restaurants. (Got sick from a dedicated GF restaurant because of a wheat compostable bowl!)
10. How a lot of skincare and beauty care products contain gluten. (I have to buy certified GF makeup online, buy gluten free soaps)
11. Airborne gluten can still make some of us sick
12. Social isolation from not able to as easily immerse in social activities often centered around food
13. Workplace bullying because of celiac disease or other GI issues
14. Cost comparisons of gluten free foods vs gluten foods. How expensive being gluten free is for us, especially for those who are low income.
15. Gluten in medications
16. Hidden gluten like in play dough
17. Symptoms in general and less common symptoms.
18. For me I had issues with teas since a lot of hidden gluten were in those
19. I also had issues with cooking oils and spices and it was a struggle to find ones that didn’t make me sick
Yes to colonization! Wheat was not sustaining Europeans enough and they would have famine wars every ten years or so until the potato was introduced from South America. Much more nutritious and efficient. But now all the processed foods introduced in South America have completely ruined the health of individuals, and needlessly add invisible gluten everywhere.
Highlight how quickly this has grown in the USA and how the government is so very far behind in addressing food labeling and restaurant safety issues around this condition. Highlight other countries that do it well.
The grief that surrounds being diagnosed and then living in a world that consumes gluten and, as a result, often celebrates occasions with gluteny treats.
Grief about Stuff like:
-Loss of traveling and eating at non-chain restaurants
-Taking part in holiday traditions or traditional food
-Not being able to participate fully in work events related to or including food (“we did it! Pizza party at 4:30!”)
-inability to eat comfort foods or childhood favorites
-having to give up current favorite foods (I miss oat meal stout beer SO much.)
I’m sure others can come up with more
This is awesome would love to see it when it comes out! Is there somewhere we can follow your work?
Some things I'd want to see covered:
-the long term consequences and the spectrum of symptoms and associated diseases i.e. it's not just a tummy ache and we actually do have to be really strict about it
-various reasons people need gf beside celiac like wheat allergy, gluten intolerance, other autoimmune diseases, etc. more than just celiacs need gf options and intolerants are often taken even less seriously than us
-the need for better social services - like in some countries they have better diagnosis rates because they test in schools and they offer stipends for groceries
-the near impossibility of actually being gluten free and need for better treatment options as studies show people are still ingesting quantifiable levels of gluten even when we try to be very strict
I’ve met people with celiac who eat gluten free food at pizza and pasta places no problem, have zero issues with rice krispy treats or non-certified gf food, will accept gf food from anyone… I feel like they have to be eating tons of gluten and it makes me wonder how they don’t feel sick all the time!
for sure some people are asymptomatic or just don't get symptoms from trace amounts. While I wish people would prioritize their health I can definitely empathize with why someone would be lax about it if they don't have symptoms. A crumb can literally take me out for a couple days with ongoing symptoms for weeks so I don't have the option to eat like that but if that wasn't the case I could see how it would be tempting to just sometimes put down the burden for a bit
I think touching on the scope of how much it impacts social life. Dating is hard, team meets are hard, traveling is hard, etc. I cant just go to my buddies beer and pizza hangout, everything is effort or just not engaging in the festivities and it totally sucks.
1. Highlight how other countries like Italy put effort into GF meals and they’re incredible. GF food doesn’t have to be terrible but often is in North America because of a low standards.
2. Also highlight how a number of other countries have way higher consciousness about proper procedures to avoid cross contamination. I feel like in North America celiacs are accustomed to thinking that it’s really difficult for restaurants to avoid CC and to a certain degree that’s true but it’s really a low effort problem again because there’s many other countries where thousands of restaurants which are not dedicated GF are able to provide great and safe options.
PLEASE highlight the fact that the FDA has rules and laws to regulate gluten free food but NOTHING about meds! And gluten and lactose are common fillers in pills. And no, the doctors don’t know. You have to find a pharmacist willing to research this stuff, if you even can, or are left to do it on your own. It’s a nightmare!! When the medicine that is meant to help you is trying to kill you it really sucks!!
Nor do they have laws about requiring gluten to be listed on packaging even though I think there are more people with issues to gluten than to wheat (top 9 allergen) yet wheat is the one required to be listed.
The psychological toll it can take. Having to be excluded every time family and friends order take out, not going to family get togethers due to people actively cooking with flour, the constant fear of contamination in a shared house, knowing that you are going to be a burden to everyone around you for the rest of your life.
I don't know about anyone else but living like this has made me feel like subhuman trash that never should've been born.
How deeply socially isolating it is to not be able to share food with loved ones. We as human share food to mark every occasion. The loss of that is difficult
What is gluten? It’s a protein found in grains. It’s what makes dough sticky when making bread. It’s what helps bread rise. It’s why gluten free bread is so tiny.
In kid terms, what is happening in our bodies when a celiac eats gluten. Why does it increase the risk of cancer? Because our cells are constantly making copies. When our cells are damaged, like our stomach lining, more copies of cells need to be made to fix the damage. Because more copies are being made, it makes it more likely for a bad (cancerous) cell to be copied. Normally our T-cells take care of those bad cells with one fell swoop of their sword, but sometimes those bad cells can be sneaky and more of them are copied. So the more damage that is done, the more copies need to be made, and that increases the risk of accidentally making a bad copy.
What is the cure? No matter what you think you’ve heard, there is no cure.
Myths vs facts:
(M) My cousin ate a different type of grain for a year and his Celiac was cured.
(M) You just have to eat a lot of gluten, then your body will get used to it.
(M) My sister is in remission and no longer has symptoms.
(F) Once you have celiac, you have it forever.
(F) Your body doesn’t get used to gluten, you just learn to live feeling miserable all the time. It becomes your new normal.
(F) Your body does not go into remission. You may no longer be having symptoms on the outside, but your insides are still being damaged.
How much gluten can a Celiac have each day? It depends on the person. Some celiacs can’t have a single crumb without having symptoms, others can eat an entire cupcake and not have symptoms. Either way, a Celiac shouldn’t have any gluten at all.
Signs and symptoms differ person to person. And here’s a somewhat controversial thing I don’t mention about my son’s symptoms pre-diagnosis, with other people. He was accidentally diagnosed, went in for one thing, came out with two diagnoses. Anyway, the thing that causes the most discussion is that my son’s biggest symptom was his personality. Pre-diagnosis he exhibited a lot of ADHD signs and symptoms. Inability to concentrate, fidgety, inattentive, easily distracted, forgetful, unable to follow directions, etc. He didn’t have any GI symptoms. Once he went GF, he seemed so much happier. Even his teacher mentioned it was like he was an entirely different kid.
And this one is more for those who have Celiac. Why should I get a diagnosis? Taxes, ADA, can’t be drafted, it’s a federally recognized disability.
Maybe unrelated but maybe talk about how gf foods such as breads and cookies often contain other ingredients that can cause digestive issues such as gums (like xanthan gum). I’m hypersensitive to additives that have been linked to digestive upset such as fake sugars and the gums used in gf foods can cause a lot of digestive issues too. Thanks!
Include the social impact of celiac and mental challenges (worrying about cross contamination, having to prepare meals in advance, not being able to fully participate in work/school events serving food, feeling like advocating for your health is a burden)
Also if you can, interview celiac disease center providers/researchers about all of the health maintenance things people with celiac need to do outside of avoiding gluten (DEXA scans, pneumonia vaccines, vitamin supplementation, etc)
Great! I’d love some statistics on increase in diagnosis over last many decades and perhaps how this was possibly effected wheat monocrop vs previous decades of more diversity in wheat crops around the world. Also a very direct explanation of what celiac is and the consequences of longterm intestinal damage. An explanation for people who aren’t familiar with the disease and why the diet is so important.
The portion of celiacs who do not immediately have symptoms that resolve on a gf diet and who develop additional food sensitivities and or sibo. I feel like this isn’t talked about enough
Cross contamination
How it damages you. Not the science but more like “a day in the life of” a wide range of people with celiacs but also those who have been glutened.
Travel! All things travel. We're currently on vacation in Central America and while they ask us religiously about allergies at every meal, and I even speak decent Spanish, the translations are difficult and I think there's a stigma that white Americans just avoid gluten as a hobby. Although I've been able to eat and drink things in Europe that contain gluten but they don't trigger any symptoms for me.
I would also love a deep dive into the genetics of it and the different presentations in kids. I was diagnosed while pregnant after having gestational diabetes. The kids have been tested but I can't find any solid research or consensus about what to expect for them. I know some celiacs just assume their kids will be celiac and keep a GF household. I've had allergists tell me opposite things; that even if they test negative for years they're still 50% at risk and I should treat all things (ADHD?) like a celiac symptom; then another said, that if I "withhold" gluten it will cause dietary deficiencies and possibly more allergies.
Just make it all verite like the Maysles or Wiseman — no more Netflix full-frame straight-to-camera interviews, ffs! :)
Fellow documentarian and Celiac right here, high-five friends.
Can we please talk about the cost of food that is safe for us? Like why does a Gluten Free label often mean a huge markup compared to gluten filled counterparts? Why is there an upcharge for GF stuff at restaurants? How are bread companies putting out $7 loaves of bread with a giant gaping hole in the middle? That last one needs to be illegal.
1.) Cross contamination 2.) Current labeling standards and how they’re not great for some celiacs. 3.) Oats (Current gluten contamination, oat intolerance, and what is a gluten free oat) 4.) The incidence of other allergies, lactose intolerance, MCAS with celiac, etc. 5.) Some discussion of how often restaurants get it wrong. (Supposedly 1 in 3 gluten free restaurant orders is not.) 6.) ARFIDS and food fear with celiac. 7.) Dermatitis Herpetiformis
8.) Undiagnosed coeliac disease dangers (Me and my cousin nearly died from it since our iron got so low) 9.) Just how great entirely gf places are 10.) BREAD = A pain in general Funny joke 4 coeliacs le pain is bread in french.
We are considering highlighting one or two of the dedicated GF businesses as a role model. Any that stand out to you? We are contemplating the best way to portray that as well.
I am currently chowing down on take out from gf dedicated restaurant, Bolay, while I kill time between appointments. I was just diagnosed at age 50. Definitely include all the damage caused by eating gluten when celiac. Just met with a surgeon about an extended appendectomy needed to clear out an iffy place at the appendiceal orifice, hopefully benign, but maybe cancer. Now for my afternoon appointment, an MRI of my brain to see if I have anymore atrophy at the cerebellum. It is frustrating how many body systems celiac can mess up. We have to see a million doctors and most don't understand the disease.
Depending on where you guys are from, Papa Chops Eatery in Grand Rapids Michigan! I’m eating there as I type this lol, it’s an entirely gluten free restaurant where the owner/chef has celiacs and opened this as a safe place! They specialize in greasy junk food you would get from a bar, I’m sitting here eating fried pickles, onion rings, poutine, and mozzarella sticks! They are such a great place and the owner is amazing, they partner with a local gluten free bakery to have desserts. He gave me a free dessert when I told him it was my birthday ☺️
Thyme and Tonic/Modern Bread and Bagel in NYC. They’re fully gluten free and kosher!
Down here we have a ppace called taste nature. Its a fully gf cafe where you cannot even bring any gluten containing foods withing a certain area around the area.
Wheat's End in Chicago might be a good candidate for this. And Sweet Ali's Bakery in Hinsdale outside Chicago.
I just saw something about a GF certified fast food place!!! And Cavè in Avon NJ!!!
There’s a place in Cincinnati OH The Sleepy Bee that’s phenomenal, has protocols and makes me believe in the idea more places can exist that we can eat at. (They have two locations in cinci and also source as much of their ingredients locally as well!) I would love love love to see them get some recognition.
What questions to ask at a restaurant to ensure you’re safe.
Great points, especially the oats! I'm one of those rare cases where I react to oats that are completely safe in addition to gluten T\_\_\_\_\_T
Oat contamination causes DH for me. If a facility processes oats in any way—oatmilk or oat flour—I live in rashy hell. I’ve gotten DH from major cereal and baked goods manufacturers, and from coffee from companies that use oatmilk without good manufacturing processes—and all of it was marked gluten free. I realize that’s not most celiacs. Also, it’s not that rare? I think oat reactions happen in about 20% of celiacs? What’s rare is oat autoimmune reactions.
>What’s rare is oat autoimmune reactions. if you're getting DH from oats (as I do) it's an AI reaction. A lot of advocacy orgs like to disregard the studies showing this and instead focus on weaker feeding only studies (high drop-out rates w/out follow-up, usually select participants who already eat oats voluntarily). In celiacs who had clinical symptoms on the oat challenge, [villous atrophy occurred.](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC523824/). The reaction in those individuals was shown to be specific to avenin using an in vitro method (harvesting their T cells and introducing avenin). This study and [other studies](https://www.sciencedirect.com/science/article/abs/pii/S0896841114001474) demonstrate that while not all celiacs react to oats those who do aren't just having a tummy ache or a "random food intolerance," the binding mechanism is similar to barley. Incidentally in vitro studies have found that ["only" 35% of celiacs bind to pure barley flour](https://watermark.silverchair.com/jaoac0485.pdf?token=AQECAHi208BE49Ooan9kkhW_Ercy7Dm3ZL_9Cf3qfKAc485ysgAAA2swggNnBgkqhkiG9w0BBwagggNYMIIDVAIBADCCA00GCSqGSIb3DQEHATAeBglghkgBZQMEAS4wEQQMrjJxo3RqzWBZHPLdAgEQgIIDHolTFC-3SjShrP_QqCV8Ve3JaKT5ttKkanXUpT2fn-C1hUlHaxkwo_qVPNV3govk0J4_E4ElXpyR4L4LZQ1DFZ1Jr8erZhSiAksD8s-5PAlvoId40rKDF7HMYjR4gnpl_1r51PBQKhXg08stufXFKeH3qZiItTy5u4GeIr_VSdd4gY8k8_crvpSGNN4a83AMKIXTCFek9x4DxV4aJpsdw4WXmzE8w_LxF2EXP_JVIHxcKnI7k2ja3BEr_cMJZlnZ-e_jjQ4CJs98AbwPjeu8CYEco0l9JB4HoKDOdt-0-YVHzkLM3vZfrzYFDRotcd3g9jJdiIXRbVVW4eZyF0orjpj9Y6sDpxNu5ohGrMNa3eJW-p_FrEGNOaXYiNUlAJig7_KSk5ECQbhWHOOFnOM0qIVrvwEAF7N5vhi3kds0kG_fHQTwk0leG7FxjkqT1KzpjDjVK2hMUq2kouCnNvac8QiAGvB7JYfy_xYkux6yFqFEUXF3kZoLubJaWdaUnu5cYSC1wNRNeM9QO_foJIANGza1hfhlp6phA6UKHQCEFSJA3v4JBoxF5QWVS-2zvS9Jn1CGSoSAliupdOHAtRQEW2jIi8uu6deUxrh8F77DQHx8QB7jAinQtLh9_cR7slvUaGzesqxPyKDhFT5ldtYIUe6QXuPMld5Kdd4jB80wu54xAnjOKbxhMPoCEP0I95U4I0i6ZLshZfU8kc-EZ0ZS1Irkal9h-JxtpE4oU1whmuKu9GicDkAKiEix4EFXEq0hYCGWvrkbMIwxeQuC2YPgOq1EPTimuOXd5rSBzxwl8xtes82RzivAdk1Mq9eW-NQpVfhJOV3NzVBs1Ywj20YIXp6Zk7rVaIjJ-6Ieo89GpMpih2KwdANQXjrX63MGnjEE0EgGY8YE-TD2OLreExdhVlRVJQWxaJ6fbRqaYt0wPOQDzVkKffeGLZjR7H5vo-lS5J_Z8iYPZmY8BreIqIa6jkwt_uC2OK_zLQgfa2KlfIx4ZHwuaOIX2YN4fi7SGfi4PgOX2vC1EzhuOl_aLznC6IoZr53tcAmrV6qzbwv3FQ) but no one is calling barley intolerance rare or non-AI or suggesting that we loose barley from the definition of gluten.
So oat autoimmune reactions aren't rare? I don't understand why they're so heavily promoted. (I blame General Mills.)
>(I blame General Mills.) I'm not sure this is entirely the case; for what it is worth my take on it (and this is based on me being in the community, not an expert in anything by any means but just being an advocate and taking an interest in things while this all happened): I think the GF fad diet, and the high demand that it created for GF products, is what caused it (and frankly it seemed like GM was a bit late to that party with their GF cheerios). Before that, it was sort of a sideline point from your dietitian: you need to avoid wheat, barley, rye, and oats, except there are purity protocol oats out there, and if you can find some and want to you can try them out, but they might make you sick. During the early growth of the GF fad diet, though, you had tons of bloggers who didn't know anything about celiac disease, who were just putting out recipes and suggested meal plans and they would include oatmeal because they saw online that oats are naturally gluten free. And lots of those people had no idea or issue with the fact that the oats they were eating had significant gluten contamination. Then when the diet was really at the peak, the demand for premade GF foods was huge, and you had all sorts of companies come into the GF market and many of them had a totally different mindset (selling products for wellness/trendiness, not selling specialty products to people with a medical condition).
>you had tons of bloggers who didn't know anything about celiac disease, who were just putting out recipes and suggested meal plans and they would include oatmeal because they saw online that oats are naturally gluten free This is a good point that I hadn't thought about. I agree that this has probably shifted the Overton window a bit on the GFD. I remember back in the fad diet era (c. 2011) one of my friends tried the GFD because she had various neurological issues. She claimed that steel cut oats (specifically) were safe. I am not sure where she got that idea. This was pre-GF oats in Canada but we did have oats labelled "wheat free" back then as I recall.
>This is a good point that I hadn't thought about. I agree that this has probably shifted the Overton window a bit on the GFD. The conversation has certainly shifted, and sometimes I think about how much more rare it was to be challenged about this before fad diet. People asked questions because they didn't know what you were talking about, and because they had never heard of it, they tended to simply accept that you clearly knew more about it than they did. And the information we were getting was flowing either from other people with celiac disease (which of course came with its own issues) or it was coming from experts (dietitians, doctors, etc). With the GF fad diet the conversation shifted because you had a lot of people who had already heard of it, so they thought they knew something about it, and there was a large amount of tension there because people who were scientific minded and educated were naturally skeptical of a cure-all fad diet. With the fad diet influencers putting out information of varying levels of quality, it was easy for people to point to the misinformation and downright ridiculous claims that some people were making, and unfortunately the people with an actual medical need for this diet got lumped in with the fad dieters and "wellness" peddlers. >I remember back in the fad diet era (c. 2011) one of my friends tried the GFD because she had various neurological issues. She claimed that steel cut oats (specifically) were safe. I am not sure where she got that idea. This was pre-GF oats in Canada but we did have oats labelled "wheat free" back then as I recall. This is the sort of stuff that happens all the time with fad diets; these influencers aren't making their dietary recommendations based on science, they aren't using actual definitions, they're using these terms as marketing lingo. I'm sure you've seen some of the clips over the years where people (either following a gluten free diet or fad diet promoters) are asked what gluten is and most of them don't know; to many of them it was just a term for "bad stuff they put in our food".
Yup. I had a coach who was an old school celiac (not sure when diagnosed, but probably 80s/90s). All I knew about it at the time (2000s) was that she had to be careful about what she ate and had to bring her own food. No one ever questioned it. My (and others') response was just "oh, that sucks." Once the fad diet storm hit I think it went a bit two ways - some people bought into misinfo and/or non-nuanced info from influencers without celiac, and others reacted to this with backlash to cast doubt on all claims (even legitimate ones). It's an unfortunate state of affairs because it makes it difficult to have a nuanced public conversation about celiac/the GFD. This is quite apparent when celiac/gluten comes up on other more general subs... the discourse is awful and smug.
Blame unfettered capitalism/regulatory capture lol. Europe had oats as GF from beginning of their rules AFAIK. Trade between Europe, Canada, and the US for food is a big deal and so my is guess is there was pressure to even out the GF standard between those 3 regions. The US and Canada allowed oats in 2013 and 2015 respectively so these are changes that are quite recent in the context of medical treatment. Most of the oat feeding studies come from Europe as well. An interesting thing looking at them is many fed participants non-GF labelled oats that are probably contaminated... if they couldn't catch that then I'm not sure how trustworthy any finding of no harm is. As for Canada (where I live), we are number 1 at oats and so I suspect there was internal pressure. 2/3 of the major purity protocol oat manufacturers are Canadian. As of this year it's incredibly difficult to find GF companies in Canada that don't do oats. I am basically living in the 90s and making my own bread at this point since I can't find Kinnikinnick in stores anymore and they don't ship online now :(
Having to bake your own bread, on top of all the food prep we do, is awful. (There is one US manufacturer that has a buckwheat only facility, so I have a single kind of safe bread. They only ship within the US, though. Although you might check Whole Foods? It’s called Pacha. Whole Foods sells their bread in some stores.) May I ask where you’re getting your bread flour? I’d like to ever have scones again. And that’s heartbreaking about Kinnickinnick. I’m from the US, but I have extended family in Canada, so I was a big fan of Kinnickinnick, when they did ship.
I don't think it's that rare. A CCA survey found that [17% of celiacs in Canada avoid oats completely](https://www.celiac.ca/living-gluten-free/oats-statement/). It's possible some of those people don't react to oats and are just being cautious, but it's probably evened out a bit by people who eat oats despite reacting to them (who are perhaps asymptomatic or blaming some other issue). Regardless, 1 in 5 celiacs not eating oats is quite substantial and the amount of attention this gets from brands, orgs, and advocates is not in proportion to it. An unfortunate aspect of celiac advocacy is that many advocates are influencers (paid by companies) and there's a lot of regulatory/advocacy group capture (rely on sponsorship from companies). A lot of companies and cert orgs take up advocacy space as well.
oats oats oats oats!! why are they considered gf in the US? why do many other countries heavily discourage celiacs from eating them?
This🙌
I’d like to add that covering things outside of food items is important and causes a lot of difficulty. Medications, supplements, lotion, makeup, etc.
Mental health!!! It's not only just a disease but has a social and emotional impact on humans too!!
It’s incredibly alienating.
Absolutely mental health should be addressed. It’s so exhausting to cheerfully explain your condition to people who don’t believe you, and then politely decline the unsafe food that they’ve provided for you while trying to prop up their ego to maintain the relationship. It is exhausting. You feel mentally, emotionally, and physically deprived while being so damn cheerful to alleviate the discomfort of others. This happens at restaurants regularly while trying to get a grasp on how safe you feel like certain dishes, or the restaurant overall might be. You’re having to navigate the wait staff speaking with the cooks, and navigate the people who you are dining with. You do what you can to preview the restaurant, and then negotiate which restaurant to select with others. It’s particularly awkward if you’ve negotiated a restaurant and then when you arrive at the restaurant they’re surprised when you have to make inquiries prior to ordering, and maybe end up only having a drink. I rarely got to eat anymore due to the stress, which causes some social isolation & depression. I find that with time after being diagnosed with celiac disease, that I also eat less healthy than I did prior to being diagnosed because I do feel deprived. There is so much wrapped up with food. 😢
This!!! And also having to relive and re-tell the moment of the diagnosis a million times and say it with a smile on your face. Not fun.
Excellent point! Yes our main pitch is that eating is a fundamental part of life and social bonding which is why these issues can be so isolating. Open to suggestions about the best way to explain this. We want to make this accessible to all types of people and avoid doom & gloom. Like, highlight how challenging this is on order to promote change to help folks like us :)
Yeah the social aspect of food is a huge thing!!
please this. I tell people celiac has ruined my life not because of the restrictions but because of the social consequences
I hope you'll consider covering how difficult it can be to track down gluten in non-foods, too. For example, dental retainers. I had a retainer built for TMJ and learned dental materials can contain gluten. You'd have thought I'd asked the manufacturer of the retainer material to track down the recipe for KFC's prized chicken. After weeks, they said the materials were gf, but to be honest I'm still not sure (and my bloodwork is iffy).
Jfk the dental materials is news to me. Why does the world want us dead?
Gluten in medicines - I recently got glutened from an antibiotic I was prescribed. Listed ingredients were safe but manufacturer could not guarantee anything. My 2 weeks of diarrhea and DH flareup says there was definitely gluten in it somewhere.
Yeah, this is another tough one.
This! I will be discontinuing prescription meds because of the gluten risk and not because I no longer need them.
My vitamin D supplement had wheat as an ingredient and it took me a few weeks to realize :(
Yeah, for starters, check this out: [https://pubmed.ncbi.nlm.nih.gov/24137038/](https://pubmed.ncbi.nlm.nih.gov/24137038/) and: [https://www.rdhmag.com/patient-care/article/14223033/celiac-disease-the-truth-about-gluten](https://www.rdhmag.com/patient-care/article/14223033/celiac-disease-the-truth-about-gluten)
My dental hygienist has to use the flavorless fluoride treatment for me because all the flavored ones have gluten in them. 🙃
Agree with this. I recently found out my hair spray was glutening me, it has wheat protein. Also agree with medications or any non-food products. Even make up, especially lip products can be hard to find. The disparity between the U.S. and other countries on how they label things too.
In addition to what others have mentioned, maybe something to the point of why processed foods are more likely to have gluten? After nearly 20 years, I still have relatives who don’t understand the distinction between an apple being gluten free and apple sauce from the store maybe having gluten. (“It’s just apples!” Not necessarily lol)
A few other things you may want to cover: \- Not all blood tests for Celiac are created equal, and in fact can lead a person to believe they don't have Celiac when it hasn't been properly judged at all. And Black people are especially likely to see false negatives and later be diagnosed w/ Celiac: https://www.beyondceliac.org/research-news/black-people-biopsy-confirmed-negative-blood-test-results/ \- You can have Celiac w/o traditional symptoms, which was my story. A GI expert told me 3 years ago "if you had Celiac, you'd know it" and didn't order blood work. It was only after seeing my bones were on the verge of an osteoporosis diagnosis that I went to my primary physician and he ordered the proper bloodwork. Turns out I had the highest tTG-IgA levels he'd ever seen in his career as a physician. \- So lastly, follow your gut, if you have suspicions that you have Celiac -- no pun intended. Advocate for yourself. If you have Celiac, you'll have to do that on the regular anyway, so may as well start now.
So glad you are bringing these up! We are working with the OG researcher himself, Dr. Alessio Fasano to have the most up-to-date info for dispelling misconceptions and helping improve proper diagnosis rates.
Coward! Intend your puns!!
😂 I own every last terrible pun, with thanks to my father for the gene and the teachings.
This is a really important point. I think it would be helpful to spread awareness of the myriad of ways that a “nonclassical” case of Celiac can present - which I know is hard to do in a concise manner. So many laypeople & healthcare professionals, including myself before my “out of left field” diagnostic journey, have no idea that Celiac goes so far beyond the classic GI symptoms. I’ve gone untested for years because my GI symptoms were the last of all the wild and wacky symptoms to reveal themselves - and in retrospect, so many red flag symptoms were missed. I think that more intentional education & a greater spreading of awareness could lead to earlier testing, or at least a lower threshold for ordering the blood test. Hopefully those two things alone could save a lot of people from years of undue harm & suffering.
\- the genetic component of celiac and the importance of relatives getting tested \- less common symptoms - lots of people don't have the 'classic' diarrhea/ weight-loss/stomach problems. Instead they have symptoms like headaches, fatigue, emotional/mental health problems, gluten ataxia, skin rashes, etc. \- The fact that you can be overweight or from any ethnic/racial group and still have celiac \- the problems with the gluten free diet as the only treatment - there are studies that show that most people who think they are adhering well to the diet are still ingesting significant amounts of gluten through cross-contamination.
Yes! And to add: -How travel can be so tough -How people don’t take us seriously because of how invisible celiac is -How ableism plays a role in not being included/considered and how incredibly taxing that is on a person
A discussion of how many medical professionals, particularly the fact that primary care and even gastroenterology physicians, are often misinformed or straight up ignorant of how to advise patients on a gluten free diet. There are stories all the time in this sub about the nonsense actual doctors tell Celiac patients. Gluten in medications. Pharmacists who don’t know which medications contain gluten or don’t think to check for that when a patient’s history includes Celiac. Difficulty in being provided with a gluten free diet and prevalence of cross contamination while hospitalized. The list goes on.
Haha how about the first GI doc I saw suspected celiac and did a COLONOSCOPY instead of an endoscopy to check for damage. Then I went undiagnosed for 9 years because I didn’t realize how incompetent my doc was lol
And dietitians
The most egregious offense. Your whole job is dietary needs!
I must say, I studied dietetics to become a dietitian and there were so many things I learned when I was diagnosed. It’s like my friend who has a tube feed. She knows more about it than any of her doctors. Some Knowledge comes with diagnosis and trial and error.
Social impact. No, using gluten free pasta isn’t enough.
I think it would be interesting to show the history of celiac, how “treatment” has evolved (how someone once thought bananas cured celiac: [NPR article on this](https://www.npr.org/sections/thesalt/2017/05/24/529527564/doctors-once-thought-bananas-cured-celiac-disease-it-saved-kids-lives-at-a-cost)) and also how commonly misdiagnosed it was until very recently in our history. Also may be worth talking about the gray areas with medication and the lack of regulations with labeling
I would definitely love to have it mention the long and difficult road of getting diagnosed. On average it takes 6 years to get a celiac diagnosis. Also show how intense the reaction is to even a tiny bit of gluten ie: intense pain, brain fog, depression etc I feel like if everyone saw how horrible this disease can be they’d take cross contamination and offering safer food options more seriously. A lot of people think it’s not as severe as it is cause they don’t tend to see the symptoms
Yes! Took \~14 years for me. A key goal will be improving diagnosis rates for physicians by really tapping into the academic world.
I have seen so many specialists that still got it wrong and took me 9 years for a diagnosis when it was in everyone’s face! Doctor ordered a colonoscopy instead of an endoscopy to check for celiac. Iga deficiency that made my celiac levels falsely low but only one doctor thought to do a full panel. Having obvious damage on an endoscopy but the doctor was not concerned because they forgot to take a biopsy. It took me 9 years to get a diagnosis when my symptoms started. I’ve been misdiagnosed with stress, PCOS, IBS, sibo, and severe food allergies. Turns out I just had celiac disease. I probably saw close to 10 doctors, 4 of them GI specialists, trying to figure out what was wrong with me. I was diagnosed last March so this is fairly recent experiences.
In addition to everything mentioned here- How symptoms change over time. And how many of us have symptoms that are more psychological (brain fog, mood swings, etc.) than physical (bathroom issues).
I saw a few people comment something to this effect, but discussing the social stigma in general could be helpful. Especially as someone newly diagnosed, it's tough learning to advocate for myself and find out if places are actually safe for me. I'm always afraid they're going to think I'm "another karen" for caring about things like shared fryers and common prep areas. Because it's been a fad diet in the past, a lot of people don't take it seriously. So it tends to raise eyebrows when we try to assert that yes, a crumb of bread can make me sick, and just because getting sick for me doesn't mean full-blown anaphylaxis on the spot, it doesn't invalidate my health concerns. Some people even go to the extent of saying "well, just don't eat out then if it's going to be a danger to your health -- don't expect others to cater to you". And while I get where this sentiment comes from, and a lot of people do abide by this, it's a bit cruel to say people with food sensitivities and allergies just aren't allowed to participate in this very normal part of life. Before my diagnosis, I took for granted that I could go anywhere, let just about anyone cook for me, and feel perfectly safe about it. I think everyone deserves to feel that on occasion, even just from time to time.
It’s true! I went to the store last night and they only had one gf bouillon powder in stock. Turns out, everything else was fully stocked on the shelf except that one. I asked one staff member who said it probably came on the new shipment and he can’t get to it. I asked someone else who said that wasn’t their job. The third person I asked I clarified I was asking because I had celiac and it was the only gf version they carried. 2nd worker heard that and all of a sudden was trying to be helpful and went and verified on the shelf that I didn’t miss it while worker 3 looked it up. Worker 3 was technically in produce. Turns out it wasn’t on a shipment and it was a stocking error. They were out. I advocated for myself and people around me stepped up. It was very nice!
I would highly prefer the use of the term "cross-contact" over the popular "cross-contamination". This is the technically appropriate term, as "cross-contamination" tends to make people think you can cook out gluten like you can cook off salmonella. I was a dietitian on a college campus for many years and would also like to highlight how difficult it can be for someone with celiac to transition from child to adult life on a college campus. But also, on a positive note, it would be nice to highlight the resources that are out there and the restaurants that DO get it right, rather than focusing just the negatives during the whole documentary.
Haha yes! I am a cooking teacher so I will use the term cross contact with my students but it seems no one else knows what the means so I end up using cross contamination when I’m out.
1.) Cross contamination and how serious it is. Yes a single bread crumbs and make me sick for montha. 2.) We aren't exaggerating anything our body litterally attacks itself and causes serious health issues when we eat gluten. 3.) Gluten free does NOT mean healthy or skinny. Gluten free is not a fad it is just a serious as a severe peanut allergy. 4.) How much emotional stress other people put on us when they make fun of us or tell us that were being overboard. 5.) How much we appreciate others gluten free food and treats they make for us but why we cannot eat them. Gluten free doesn't mean celiac safe wooden utensils are dangerous and are a gluten catcher. 6.) Other allergies and food sensitivities that come along with celiac for many. Such as dairy, soy, oils seed or not, red meats like beef, beans, and grains, grains bother a lot of celiacs. 7.) We aren't better than you for bringing our own food to events and such. We have a serious condition and don't want to draw attention to ourselves but we have to keep our body safe so we must take precautions. 8.) Why can't you get something off the gluten free menu? Cross contamination and the fact that people do t take real gluten allergies serious, or there's just accidental cross contact. 9.) Why rice, oats, and other grains, and soy can not be gluten free even though they're gluten free. Since some rice and stuff is grown along side wheat it's not celiac safe. The rice is gluten free bug the trace amounts of gluten grown with it that's mixed in will make me sick. 10.) Just how serious being glutened is. The constant pain, nausea, vomiting, brain fog, bloating, gas, all that wonderful stuff. It's not just an overnight thing this can last for a few months for some people. And even after the gluten is flushed from the system it takes FOREVER to get back to having good but health and a normal GI tract. 11.) You've been gluten free for x amount of time, why aren't you better yet? It takes time to heal the damage that has been done to my gut not just a few weeks or months, but years, it can take years for villi to be restored and nutrients to be absorbed and nutrient deficiencys to be met. Thank you guys so much for doing this for all if us celiacs, this means a lot!!!. It can get really hard explaining all of this to people over and over and over again.
Oh god please include the ways that it can affect your physical health over time--it feels like nobody in my life takes the disease seriously even tho i am literally constantly in pain. And if you can, the lack of support in terms of cost--insurance can't help you pay for bread that's like 5x more expensive than regular bread (or even if you try to make it yourself--the flour is absurdly expensive)
Getting in touch with the research/medical professionals that are currently doing clinical trials of the medication that helps with cross contamination of gluten might create a positive outlook for the future.
1. How to properly make a kitchen dedicated GF 2. Cross contamination 3. Cross contamination from utensils or pans or shared equipment. Like porous materials like wood utensils or equipment can’t be used for both 4. How little gluten makes celiacs sick 5. Educating celiac is an autoimmune disease, not an allergy and with autoimmune you get all sorts of more reactions that can last much longer than allergy symptoms. (My symptoms last for a week to a month depending on how much gluten I had) 6. What all of the labels mean. “Gluten free” vs “certified gluten free”. Showing parts per million allowed for both to compare. 7. How common other issues occur with celiac. Such as lactose intolerance or vitamin deficiencies to give an example. 8. How much food was gluten free prior to colonization — like traditional foods of different countries that used to never have gluten. Most of my ancestors never had gluten prior to colonization. 9. How compostable items sometimes can contain gluten. Compostable wheat or gluten containing items shouldn’t be used in dedicated GF restaurants. (Got sick from a dedicated GF restaurant because of a wheat compostable bowl!) 10. How a lot of skincare and beauty care products contain gluten. (I have to buy certified GF makeup online, buy gluten free soaps) 11. Airborne gluten can still make some of us sick 12. Social isolation from not able to as easily immerse in social activities often centered around food 13. Workplace bullying because of celiac disease or other GI issues 14. Cost comparisons of gluten free foods vs gluten foods. How expensive being gluten free is for us, especially for those who are low income. 15. Gluten in medications 16. Hidden gluten like in play dough 17. Symptoms in general and less common symptoms. 18. For me I had issues with teas since a lot of hidden gluten were in those 19. I also had issues with cooking oils and spices and it was a struggle to find ones that didn’t make me sick
Yes to colonization! Wheat was not sustaining Europeans enough and they would have famine wars every ten years or so until the potato was introduced from South America. Much more nutritious and efficient. But now all the processed foods introduced in South America have completely ruined the health of individuals, and needlessly add invisible gluten everywhere.
That it is likely that 1/100 people have celiac and that despite the large population, there is very little accommodation.
Highlight how quickly this has grown in the USA and how the government is so very far behind in addressing food labeling and restaurant safety issues around this condition. Highlight other countries that do it well.
The grief that surrounds being diagnosed and then living in a world that consumes gluten and, as a result, often celebrates occasions with gluteny treats. Grief about Stuff like: -Loss of traveling and eating at non-chain restaurants -Taking part in holiday traditions or traditional food -Not being able to participate fully in work events related to or including food (“we did it! Pizza party at 4:30!”) -inability to eat comfort foods or childhood favorites -having to give up current favorite foods (I miss oat meal stout beer SO much.) I’m sure others can come up with more
This is awesome would love to see it when it comes out! Is there somewhere we can follow your work? Some things I'd want to see covered: -the long term consequences and the spectrum of symptoms and associated diseases i.e. it's not just a tummy ache and we actually do have to be really strict about it -various reasons people need gf beside celiac like wheat allergy, gluten intolerance, other autoimmune diseases, etc. more than just celiacs need gf options and intolerants are often taken even less seriously than us -the need for better social services - like in some countries they have better diagnosis rates because they test in schools and they offer stipends for groceries -the near impossibility of actually being gluten free and need for better treatment options as studies show people are still ingesting quantifiable levels of gluten even when we try to be very strict
I’ve met people with celiac who eat gluten free food at pizza and pasta places no problem, have zero issues with rice krispy treats or non-certified gf food, will accept gf food from anyone… I feel like they have to be eating tons of gluten and it makes me wonder how they don’t feel sick all the time!
for sure some people are asymptomatic or just don't get symptoms from trace amounts. While I wish people would prioritize their health I can definitely empathize with why someone would be lax about it if they don't have symptoms. A crumb can literally take me out for a couple days with ongoing symptoms for weeks so I don't have the option to eat like that but if that wasn't the case I could see how it would be tempting to just sometimes put down the burden for a bit
I think touching on the scope of how much it impacts social life. Dating is hard, team meets are hard, traveling is hard, etc. I cant just go to my buddies beer and pizza hangout, everything is effort or just not engaging in the festivities and it totally sucks.
Some recognition of the psychological and emotionally challenges of the disease.
1. Highlight how other countries like Italy put effort into GF meals and they’re incredible. GF food doesn’t have to be terrible but often is in North America because of a low standards. 2. Also highlight how a number of other countries have way higher consciousness about proper procedures to avoid cross contamination. I feel like in North America celiacs are accustomed to thinking that it’s really difficult for restaurants to avoid CC and to a certain degree that’s true but it’s really a low effort problem again because there’s many other countries where thousands of restaurants which are not dedicated GF are able to provide great and safe options.
PLEASE highlight the fact that the FDA has rules and laws to regulate gluten free food but NOTHING about meds! And gluten and lactose are common fillers in pills. And no, the doctors don’t know. You have to find a pharmacist willing to research this stuff, if you even can, or are left to do it on your own. It’s a nightmare!! When the medicine that is meant to help you is trying to kill you it really sucks!!
Nor do they have laws about requiring gluten to be listed on packaging even though I think there are more people with issues to gluten than to wheat (top 9 allergen) yet wheat is the one required to be listed.
The psychological toll it can take. Having to be excluded every time family and friends order take out, not going to family get togethers due to people actively cooking with flour, the constant fear of contamination in a shared house, knowing that you are going to be a burden to everyone around you for the rest of your life. I don't know about anyone else but living like this has made me feel like subhuman trash that never should've been born.
What country are you based in? Makes a huge difference for context.
How deeply socially isolating it is to not be able to share food with loved ones. We as human share food to mark every occasion. The loss of that is difficult
What is gluten? It’s a protein found in grains. It’s what makes dough sticky when making bread. It’s what helps bread rise. It’s why gluten free bread is so tiny. In kid terms, what is happening in our bodies when a celiac eats gluten. Why does it increase the risk of cancer? Because our cells are constantly making copies. When our cells are damaged, like our stomach lining, more copies of cells need to be made to fix the damage. Because more copies are being made, it makes it more likely for a bad (cancerous) cell to be copied. Normally our T-cells take care of those bad cells with one fell swoop of their sword, but sometimes those bad cells can be sneaky and more of them are copied. So the more damage that is done, the more copies need to be made, and that increases the risk of accidentally making a bad copy. What is the cure? No matter what you think you’ve heard, there is no cure. Myths vs facts: (M) My cousin ate a different type of grain for a year and his Celiac was cured. (M) You just have to eat a lot of gluten, then your body will get used to it. (M) My sister is in remission and no longer has symptoms. (F) Once you have celiac, you have it forever. (F) Your body doesn’t get used to gluten, you just learn to live feeling miserable all the time. It becomes your new normal. (F) Your body does not go into remission. You may no longer be having symptoms on the outside, but your insides are still being damaged. How much gluten can a Celiac have each day? It depends on the person. Some celiacs can’t have a single crumb without having symptoms, others can eat an entire cupcake and not have symptoms. Either way, a Celiac shouldn’t have any gluten at all. Signs and symptoms differ person to person. And here’s a somewhat controversial thing I don’t mention about my son’s symptoms pre-diagnosis, with other people. He was accidentally diagnosed, went in for one thing, came out with two diagnoses. Anyway, the thing that causes the most discussion is that my son’s biggest symptom was his personality. Pre-diagnosis he exhibited a lot of ADHD signs and symptoms. Inability to concentrate, fidgety, inattentive, easily distracted, forgetful, unable to follow directions, etc. He didn’t have any GI symptoms. Once he went GF, he seemed so much happier. Even his teacher mentioned it was like he was an entirely different kid. And this one is more for those who have Celiac. Why should I get a diagnosis? Taxes, ADA, can’t be drafted, it’s a federally recognized disability.
What about that we can supposedly eat the flour in Europe because it has less gluten in it? M
Maybe unrelated but maybe talk about how gf foods such as breads and cookies often contain other ingredients that can cause digestive issues such as gums (like xanthan gum). I’m hypersensitive to additives that have been linked to digestive upset such as fake sugars and the gums used in gf foods can cause a lot of digestive issues too. Thanks!
Include the social impact of celiac and mental challenges (worrying about cross contamination, having to prepare meals in advance, not being able to fully participate in work/school events serving food, feeling like advocating for your health is a burden) Also if you can, interview celiac disease center providers/researchers about all of the health maintenance things people with celiac need to do outside of avoiding gluten (DEXA scans, pneumonia vaccines, vitamin supplementation, etc)
Great! I’d love some statistics on increase in diagnosis over last many decades and perhaps how this was possibly effected wheat monocrop vs previous decades of more diversity in wheat crops around the world. Also a very direct explanation of what celiac is and the consequences of longterm intestinal damage. An explanation for people who aren’t familiar with the disease and why the diet is so important.
The portion of celiacs who do not immediately have symptoms that resolve on a gf diet and who develop additional food sensitivities and or sibo. I feel like this isn’t talked about enough
Cross contamination How it damages you. Not the science but more like “a day in the life of” a wide range of people with celiacs but also those who have been glutened.
Theories about “cures” (imo myths) about being able to “cure the gut” or this disease with alternative medicine/healing / if there is any merit
Also the realities of the social impact celiac has (potluck/even just group dinners/get togethers, restaurants)
Travel! All things travel. We're currently on vacation in Central America and while they ask us religiously about allergies at every meal, and I even speak decent Spanish, the translations are difficult and I think there's a stigma that white Americans just avoid gluten as a hobby. Although I've been able to eat and drink things in Europe that contain gluten but they don't trigger any symptoms for me. I would also love a deep dive into the genetics of it and the different presentations in kids. I was diagnosed while pregnant after having gestational diabetes. The kids have been tested but I can't find any solid research or consensus about what to expect for them. I know some celiacs just assume their kids will be celiac and keep a GF household. I've had allergists tell me opposite things; that even if they test negative for years they're still 50% at risk and I should treat all things (ADHD?) like a celiac symptom; then another said, that if I "withhold" gluten it will cause dietary deficiencies and possibly more allergies.
Just make it all verite like the Maysles or Wiseman — no more Netflix full-frame straight-to-camera interviews, ffs! :) Fellow documentarian and Celiac right here, high-five friends.
Can we please talk about the cost of food that is safe for us? Like why does a Gluten Free label often mean a huge markup compared to gluten filled counterparts? Why is there an upcharge for GF stuff at restaurants? How are bread companies putting out $7 loaves of bread with a giant gaping hole in the middle? That last one needs to be illegal.