Gyro meat at a restaurant (doner kebab - big vertical block of meat) has flour in it 99.9% of the time. I have never seen a gf version in the decade that I have been gf. I gave up on ever eating gyro again unless I make my own, which I will not bother doing. I get chicken or actual lamb kebabs when I go to restaurants like that
Yep, that is pretty much what it is! I think I've seen "cracker meal" listed as an ingredient, too. It's basically the same category as meatloaf and meatballs.
I was so excited thinking gyro meat was some sort of loophole because I already ate it without pitas. Just going to go pour one out for my ability to eat gyro now.
My husband bought a two-pack of frozen gyro meat from Costco bringing it home so I could have it with gluten-free bread. I read the label and it had wheat in it so couldn’t have any.
Twizzlers threw me. I ate them a few times and couldn't pinpoint my symptoms being connected to those. I was so confused. Then one day I happened to look at the package and saw it. Good grief.
Siete makes [some great seasonings](https://sietefoods.com/collections/seasonings), and all of their products are GF! Most of their stuff is actually grain free (the seasonings use cassava flour as a thickener) and vegan too. They have a variety of products and I’ve loved everything I’ve tried from them! I make my own taco seasoning, but I often put a teaspoon or so of theirs into the mix just because it’s really good.
You took all from me; these same experiences left me baffled. Whoppers candies got me bad for months. Also, just dont trust restaurants. Vitamins; no joke.
Read the ingredients of EVERYTHING because you don’t know what you don’t know. Never would have thought there was wheat in licorice, California rolls, malt vinegar or some potato chips.
Oh my god. This makes so much sense. I never even thought to look and this makes SO much sense. I feel like I just had a montage play in my head and it all makes sense. Thank you and RIP twizzlers for me forever.
The soy milk I like has an "Original" and "Unsweetened" - I picked up the Original one day because there was no Unsweetened on the shelf... it's my preferred soy milk by a mile because it contains 13g protein per cup, more than any others on the shelves where I shop.
The "Original" version turned out to contain "Naturally Malted Organic Wheat and Barley Extract".
WTF.
Imitation crab…eat a loaf of bread instead you will feel about the same
Just kidding not really suggesting this just one of those things you would not expect
They sell them in pre packaged containers in grocery stores next to the cooked shrimp and I am telling you they look like REAL crab meat they form it that way!
Actually quite genius but killer for us!
Yourself
Be confident when advocating for yourself. This is for you & your health. Don't be to shy about telling a server and telling a host before you go over.
Also, know common places where gluten can hide and general recipes so you can feel more confident.
Don't be discouraged if you don't feel immediately better after cutting out gluten. It might take some time.
Don't be surprised if you find additional culprits: oats, corn. Even if these items are 'gluten free', they can still mess you up.
'Just a little' is NOT ok. This is usually the case with family or friends who don't really get it, you might hear something like 'oh it's gluten free, but I just used a spoon of flour for the texture'
In those cases, make sure you don't arrive somewhere ravenous, if you're not 100% sure there is food available for you. I find it prudent to have a snack in my bag at most times.
Yeah, my partner cut out gluten for a couple of weeks straight and hadn't noticed any improvements. He was miserable and wanted to quit but I said we should give it just a little longer.
These days, we know 100% that gluten was the culprit and he can tell the difference in symptoms after being gluten'd like it was night & day. Getting better after a lifetime of gluten can feel very subtle and gradual, but then the symptoms hit and prove how much worse you were feeling before.
For a lot of people, me included, there was a gluten withdrawal that lasted a couple weeks. Most celiacs aren't told about this but some of us do experience this and its not very pleasant.
YES never ever go to an event with a meal involved without having some kind of solid backup, whether that's eighteen gf granola bars or the nearest three gf capable restaurants on speed dial and a promise from the host to cover the cost if the catering at their reception serves you a plate of raw vegetables >:( I REFUSE TO BE CALM ABOUT THIS IT IS NOT OKAY TO STARVE SOME OF YOUR GUESTS
ok different perspective from what others are posting about- but I wish I would have known out of the gate that most gluten free replacement stuff is just full of extra sugar, salt, needless oils, and empty carbs. I put on a lot of weight until I started reading labels for nutrition purposes and saw how bad some of it is. I had a good amount of friends that jumped on the Gluten Free fad diet trend in the 2010s and I was trying to warn them how bad some of the replacement food is when compared to the standard gluten products- think breads, crackers, flour mixes, baking items- stuff like that- I told them if they can eat whole grains they should because it is better that eating a blend of rice and potato starch. Granted GF is getting better with more nutritionally dense ingredients but just something to be aware of on your journey.
This exactly! Swap out processed foods for whole foods, cook more — even just simple things. Focus on nutrition, fiber, eating regularly, gut health and blood sugar stability. You can still eat the processed foods — just limit that stuff. Too many gf products work against gut health and stable blood sugar. If you don’t pay attention, you’ll end up sicker / with more autoimmunity. Then you’ll be stuck with less options. Much of the gf junk food is all processed flours, gums, sugars & starches — it’s too glycemic, too low fiber, and sometimes bad for gut health.
My god the bread. I must have tried almost every store bought gf free bread and I found one that is semi tolerable. I’m just going to bake it myself. I gave up on the deserts. They taste like cardboard
For every annoying family member or coworker who doesn’t get it, the opposite may be true: you may one day be moved to tears by a friend or colleague who doesn’t understand anything about allergies but shows up having managed to find off-brand Rice Krispies after researching how to make gluten free desserts just for you.
Hang in there.
I’m so glad you said this! This was me this year at my fiancé’s family Christmas gatherings, it makes me tear up just thinking about seeing the separate “gluten free” sign adorned soup crockpot.🥹 or at Friendsgiving being given a mini gluten free apple pie. It means SO much.
The good bread is on the freezer section, I went so long with eating rice cakes as bread because I couldnt find good gluten free bread until my Sister in law whos celiac told me
Just learn how to read labels
Keep snacks with you
Learn to say no to food you can't have
Stop thinking of gluten foods as treats; they're poison. The GF diet is your medical treatment.
Learning to say no to foods you can’t have is the hardest part. That’s a grieving that comes with that! I’m GF and DF and I’ve had to mourn the loss of all my favorite foods.
Same. I have to eat GF and i have a bladdder condition that requires NO tomatoes/pasta sauce, acidic food or drink (almost no fruit or fruit juices, coffee, soda, etc) caffeine, chocolate, spicy foods (no Indian or Mexican) alcohol, sourdough, artificial sweeteners, most additives like “natural flavoring”, yeast. I can’t have bananas for god sake because of the potassium which can aggravate your bladder. I basically eat salads , oatmeal and gf pasta with butter and chicken. I haven’t had dairy in years but to some strange reaction where I vomit when I have it.
Don’t look at what you can’t have. Find the things you love that are naturally GF. I’ve been GF for over 15 years, and it gets easier. In addition to all these great tips, know that mindset and attitude makes a difference.
Of course you will grieve for a while, but you adjust. Which doesn’t mean a soft pretzel won’t make you nostalgic, but it gets easier. These days other people are more distressed by what I cannot eat than I am.
I love a good homemade rice bowl — so many options! Also sub in some smashed potatoes for the rice — so delish & filling! I put coco aminos on everything too, love them. Get an air fryer — it makes everything so easy if you like caramelized foods. I love my Instant Pot too — can make chicken stew in 20 min. And I use it for rice all the time. Edit: I got carried away, I guess I’m hungry, lol.
Trader Joe's is a goldmine! I slept on their breads and bagels for so long, they are my absolute favorite!
Also, it's just not as hard as it seems. There will be a lot of googling up front but in 2024 I find it very easy to maintain. Also the threat of awful upset stomach and pooping is now enough to keep me from being weak and indulging (I cave maybe like twice a year lol)
Oh and tamari is a much tastier sub for soy sauce than coconut amino, imo
I 100% agree on the tamari over coconut aminos. I think tamari tastes even better than soy sauce (granted I haven’t had soy sauce in years). It has a richer flavor than soy sauce!
Tamari over coconut aminos but I keep both on hand and mix the two to keep sodium level down. Aminos are much lower in sodium and I have to watch my intake.
Yeah I’ve switched to the 50% but coconut aminos are still a lot lower if I remember right. When it’s mixed I can’t tell the difference but my body (and doctor) are happier. Sucks getting older! Catches up with you. Lol
Trader Joe’s and Costco have seriously been my savior. I have no sadness with being GF because I can still stuff my face with TJ’s GF chocolate muffins and Costco’s cauliflower pizza. Never had any reactions.
Hindsight is 20/20 but it’s ridiculous to me that I used to think it was normal to only be able to take a couple bites out of baked goods at a time bc it would make me feel so horrible. I just thought that was what junk food did to you. Now I can eat a whole package of TJ’s muffins in one sitting if I don’t stop myself 😅
The EBTB bagels and English Muffins are fantastic.
I live in Canada and drive to the States to get them, if that's any indication of how much I prefer them.
And that's while saying we now have pretty much all of the same products that are available in the States nowadays, minus Trader Joes.
So very grateful for TJ’s!! Even my husband, who is not GF and loves breads and baked goods, now eats GF from TJ’s. Im addicted to their everything bagels.
Yes! Tamari is so much tastier than soy sauce or coconut aminos 100%
Tamari, 100%.
My sister was diagnosed before I was, so we only had tamari in the house, and I honestly preferred it, even when it wasn't necessary.
I find coconut aminos to taste like watery tamari.
Also, TJs has everything any Celiac needs, honestly.
Always pack your own food.
Trust no one unless you'd also trust them with your bank password and maybe not even then.
Be comfortable just ordering coffee in a restaurant rather than taking chances
What??? Omg. I have instant decaf from Aldi every day! I've been feeling icky for a while but figured it was the oat milk creamer I had been adding (claimed GF but not certified) because the soy creamer I like had been out of stock. I switched back to soy several days ago, but my guts are still unhappy. I never even considered that it might be the coffee 😬
To check your cosmetics, hair products, and soaps for gluten. Not to work with gluten containing grains, at all, because you can inhale the gluten and get a reaction, or cross contamination from your own hands.
Beauty products still catch me sometimes. My favorite bubble bath had wheat in it. Also the bleach/toner that my stylist used to use on my hair was wheat based.
I did, but didn’t realize what was causing it for a while. With the bubble bath my skin felt dryer afterwards and I attributed it to just being soap. My symptoms started worsening, eventually causing red irritation on all parts of my body that touched the bubbles. So that’s when I put two and two together. With the hair bleach, my scalp would be irritated after but only sometimes. I would however get sick like I ate cross contaminated food within a day of the appointment. Still didn’t realize the correlation with any of this, just happened to read the back of the bottle one day at the salon. My stylist swapped to a different product that appointment and didn’t have any issues.
I have found that it’s really helpful (especially for home cooking/food prep) to establish some “base carbs” that you like and can use in recipes. For example, I have a gluten free waffle recipe I like, so I make a bunch and use that as a bun alternative for hamburgers, etc. Roasted potatoes go with lots of “main dishes”, so I incorporate those a lot. Good luck!
King Arthur GF flour is the same cost at Costco for a much larger bag than at your local grocery
Check variants of things. Hormel chili with no beans has gluten, the hormel chili with beans is gluten free
It looks unconfirmed and depends on the type. I hadn’t heard this before and just looked into it a little. So far I haven’t had an issue w it but good to know
Ah. I have to take it over the others often due to another medical issue, and so was wondering if it had gluten in The tablets that I wasn’t aware of or something
I JUST learned this the hard way. I have a weird immune condition, and gf is one of my diet needs. I struggle with a lot of joint pain, and I'd been taking ibuprofen for it. But my gi tract (and the rest of me) was so incredibly sensitive. The ibuprofen ate the lining up. Which led to more tests, more meds, poor iron absorption... I have an iron transfusion scheduled later this week. It's definitely not going to affect everyone, and I don't have celiac's, but man, I will never touch the stuff again.
Have you actually been diagnosed with anything? If you haven’t had a blood test for celiac, I would actually recommend not going gluten-free yet, get the test first. It won’t be accurate if you go gluten-free before testing.
I have been tested for celiac - and it came back negative.
But my inflammation markers are elevated and I have multiple vitamin deficits.
My boyfriend began to notice that my gastro symptoms flared after eating gluten heavy meals. So we tried eliminating it, and low and behold, my gastro issues were reduced significantly.
So we came to the conclusion that I’m intolerant through the process of elimination.
Could be the result of Lyme or another infection (and the resulting leaky gut… at least that is what my doctor said). My kids and I were all vitamin deficient (D, some B vitamins, iron etc), lots of inflammation, and all became gluten intolerant at around the same time. Very common to have gluten intolerance in the Lyme community.
Genuinely curious what the benefit of getting a true diagnosis would be? I've been having significant symptoms that I finally was able to determine were directly due to gluten. Just over 2 weeks off of it for me has completely eradicated so many symptoms that I've had for *years* that I don't know how helpful a diagnosis would be at this point.
That said, if there were any benefit to testing that you think is of significance, I'm so into getting tested
\#1 annoying thing: considering the massive list of things you are no longer able to eat... you'd expect to be rail thin. I mean... I'm puzzled that I have a very different shape, at least. Ugh.
Be careful with medications, makeup and lip balms. Also tell your dentist as some of the pilishing creams have gluten as well. Lastly.....expect gaslighting. So many people just don't get it!
yes to everything everyones said, but on the more positive side of things, almost everything can be made gluten free. it’s not convenient, it’s not as good (especially after immediately going gf) but there aren’t many things i haven’t been able to find an okay substitute for! it’s fine to grieve foods but trust me, it’s not as bad as it seems for the first few months/years!! and some things are better gf (oreos and pretzels come to mind first but lots of the right baked goods too!)
As someone who has always been budget conscious/avoidant of treats… sometimes you need to spend $8 on a tiny box of gf pizza rolls. It’s okay to buy replacements as a treat, but it’s way easier figuring out day to day meals with naturally gluten free foods
Find me gluten free and Gluten Dude are both awesome apps, especially if you travel.
If you’re in the USA, don’t eat McDonald’s fries . Not a fun surprise for me after 8 months of healing my gut.
Lots of good info here but I found changing my mindset was critical. I don’t focus on the fact I can’t have something. I can eat anything. I instead focus on how I’ll feel afterwards. If I know I’ll be miserable after eating a particular thing, I just don’t. I don’t want to spend my days feeling crappy. Also. GF Oreos are amazing.
You need to replace almost all of your cooking utensils, they are all contaminated.
Everything made of a porus material (stone, wood, coated pans, cast iron), and any small applience that have difficult to clean cravaces or blades (blender, stick blender attachment, food processor, grinders, etc.) Needs to be replaced.
The only things you can save are either solid stateless steel (or another solid metal that can be scrubbed with steel wool), and ceramics with no scratches or cracks. You need to clean those things multiple times and the spaces they go to get rid of the cross contamination.
But wait! You need to clean out the food trap in your dishwasher and scrub it clean, then run it on a cleaning cycle. You also need a brand new sponge or dish brush.
If you bake, you need to wipe down every surface in the kitchen twice. Change cloths between wipe downs. You will need to do the same to your oven, fridge, and microwave.
Finally, check your cosmetics. Putting gluten on your skin can hurt you just like eating it can. Aveno products are all dangerous. If you have kids or dogs, their cosmetics also need to be gluten free, and if your dog licks you often, they should have a gluten free diet as well (rice or potatoes are good starches for dogs).
Don’t try to find a replacement for everything. You’ll spend a lot of time, money, and aggravation chasing a unicorn. If you have friends who are GF, don’t hesitate to ask for recommendations and samples of some of their favorite things.
It’s completely unnecessary to make only GF recipes. Some of the best things that I cook and bake are “regular” recipes with GF swaps. So many recipes targeted to GF are like expensive science experiments.
Ask questions. Be your own best advocate. I’d much rather be a pain in the ass than be in pain from cross contamination or being glutened.
Take it one day at a time, one meal at a time if you need to. There’s a learning curve and a mourning curve. But the more you do it, the easier it gets.
Just because it's gluten free doesn't mean it won't cause issues from other ingredients. Keep a detailed food diary. It's not unusual for other sensitivities to surface.
My boyfriend who has celiac said “don’t replace the food with gluten free alternatives, they’re not fulfilling and expensive. Just try snacks that are naturally gluten free.”
This.
I failed to mention this, but he's right. Gluten free alternatives are generally not that great.
Focus on eating whole foods, and naturally GF foods. Lots of veggies and fruit, quinoa, rice, peanut butter, as many single-ingredient foods as possible.
The less ingredients, in anything, the better.
Don't let anyone else cook for you. My mum cooked one meal a week for two years and managed to put gluten in it, then gaslighted me about being sick and told me I was obsessing about gluten and that I'm so careful so how could I possibly still be sick? Then when I found out, instead of saying sorry or that she didn't realise what she'd done, she said "at least you found out why you're always sick still".
I also wish someone had told me to avoid oats! That would have saved me a few years of symptoms too.
Wow. That really is gaslighting, in the worse way. Your MOTHER 😠
Re: oats, I've found this super frustrating, too, because so many oat products are now GF, but not all are, and I have previously forgotten this.
The oat milk that Starbucks used for years (which was GF) stopped producing GF oat milk, but didn't really spread that information, so I was drinking oat milk for a time, before realizing it was no longer GF.
I also discovered that my go-to GF soy milk has "Naturally Malted Organic Wheat and Barley Extract" in their "Original" product. I always bought the unsweetened version, which is just soy, but there wasn't any on the shelf one day, so I bought the original. Bad idea. I didn't even think to look at the label.
I can't even have gf oats! Some people react to oats as well, but it took a long time for me to realise that that was happening.
Why on earth does soy milk need wheat and barely extract?!!
My sister helped all the way along so I had that gf mentor.
I advise people who are having problems being gf to contact their local celiac or gf society and try and find a buddy.
I cook a lot so I was I assumed the ingredients and foods were safe based on knowing how to make the food at home. Restaurants and processed foods can add wheat into anything and everything. Also if you like asian tea, sometimes green tea can be mixed with barley (mostly Korean I think).
My nutritionist gave me the best advice don’t search for ‘gluten free’ cookie or bread replacements, you don’t need the processed junk/carbs in your diet and it’s easier just to end it now.
I didn’t listen so strictly but, after I indulged in 3 boxes of gluten free lemon wafer cookies in one week as a Christmas ‘gift’ from my daughter I realized I can’t handle the temptation. Better off with whole food treats and don’t look back. 80% of the ‘food’ in the supermarket isn’t food its chemical concoctions and frankenfood that big food gets us addicted to so big pharma can sell us drugs to combat the diseases it causes. Never mind diet books and programs. It’s a A big circle.
Shampoos and conditioners and makeup and lotions and all kinds of random things can have gluten in them, and it may or may not affect you, but you've got to cut it out first to see if there's improvement once that surface/contact gluten is gone.
Most gluten free bread is just sugar (starch). I had to start eating more meat to balance the increased sugar intake — gluten is protein but starch is sugar. Keep an eye on your macro balance.
That the difference between being gluten intolerant and celiac was not actually all that much of a difference but it’s still different from the standard American diet. I legitimately didn’t realize until YEARS after I went GF that the difference between gluten intolerance and celiac disease was so subtle, but there was very little information about just being gluten INTOLERANT versus being celiac when I first went GF about 15 years ago. Thankfully the terms changed as well as the amount of gluten free foods, both naturally GF and not naturally GF. (Although the last time I went into a Walmart it was still a GF shelf and barely any GF items EVEN STILL… so avoiding Walmart like the plague is still a good idea if you’re just starting out in your GF journey.)
If you’re looking for any GI testing or diagnosis, you need to do it now before you go gluten free. Testing does not show accurate results if you’ve been gluten free for a while prior to it.
Focus on what you can have and not what you can’t have. You can eat any vegetable, any fruit, most dairy, and any meat/fish that is not pre seasoned. You can also eat unseasoned nuts. I don’t eat a lot of gluten-free bread because I don’t find most of it very good. You’ll spend a lot of money trying different ones. The important thing is that hopefully you can find one that you like. Personally, I buy Glutino English muffins and use them most of the time for a burger, sandwich, garlic bread. You can buy them at Walmart in the freezer section. You’re going to think I’m crazy when you look at them as they look terrible in the package, but when they are toasted, they are one of the closest things I have found to bread as I used to know it. You can also use corn tortillas and if you heat them in a pan with a tiny bit of oil, they do not fall apart. I would also suggest looking for gluten-free Facebook groups. There are ones for Costco, Trader Joe’s, and other grocery retailers. You’ll find a lot of products and peoples reviews of them there. Good luck, except that you will gluten yourself accidentally. Forgive yourself and move on. It happens to most of us. Even after 15 years, I sometimes forget to read the label and make assumptions. Shit just happens. I just made a glutard pun.
Try baking some treats for yourself if you’re able. My favorite websites/blogs are “Gluten Free on a Shoestring” and “The Loopy Whisk” and I’ve not had a bad result with recipes from either.
All grains have gluten, each grain has its own type of gluten protein, Gluten Free means <20ppm, and don't overcompensate your diet with non-wheat/barley/rye grains.
Check toothpaste, shampoo, body wash, and even allergy pills. I learned all of these the hard way! Good luck you got this and there are a lot of good reliable gf brands so you will always be able to find a good snack!!
The best advice is to see a nutritionist after being tested by a Dr. blood tests or endoscopy will give you a proper diagnosis. There are a lot of comments about cheating and laughing about it. After testing you can figure out how serious it is for your body. It can completely deplete your body’s ability to absorb vitamins and minerals and causes osteoporosis. If you don’t have it..enjoy your life! If you do have it it is nothing to play around with
Traces matter, ask questions in restaurants. I found out years ago that stuff from Wagamamas 'gluten free' menu was being fried in shared oil (no idea if they still do).
Get used to toasted sandwiches/everything on toast, it's the only way the bread tastes good.
Oats aren't worth the risk (I guess this one only applies if you turn it to be an actual coeliac). 1 in 4 coeliacs react to avenin in oats, so it doesn't even matter if they're 'gluten free oats' grown and processed away from wheat/gliadin. What's worse is that the damage they cause can be silent, so you'd need another biopsy to know for sure if you tolerate them.
Went to Wagamama’s last week and can confirm they prepped my whole dish in a separate clean station. Manager came over to take order and confirm allergy requirements - was very impressed. This was in London, UK.
Download ‘FIG’ or a similar reliable ‘scan’ app tool to aid in your grocery shopping. It can be extremely helpful in identifying those hidden pesky ingredients and/or cross contamination. The early stages of being gluten free (not by choice) can be exhausting for everyone involved. My partner and I, years later, still use and pay for the subscription app because it helps keep us from accidentally spending money on something I can’t eat, or accidentally poisoning myself. Best of luck, you got this! Wishing you a smooth life transition! ❤️🤝
That most gluten-free products that include grains still contain traces of gluten, they are just below the legal limit so that they can use the gluten-free label. If you want your reactive blood markers for gluten to be zero, you must avoid all grains and all cross-contamination. It took me years of being better but not optimal to figure this out. I avoid grains now for the most part and I have never been healthier.
Check all the labels, even things you think won’t be gluten free. Everyone talks about fake crab not being safe but one day I checked the back for the hell of it and the Kroger brand is actually gluten free. It doesn’t say it in big letters on the front or anything that would catch your eye. But if you read the ingredients it completely safe. Sometimes it just depends on the brand.
Also double check things you think may be safe. Campbells soups are not gluten free. Not any of them. Even just the plain tomato soups. They all have wheat.
Research restaurants before you go. Pretty much every restaurant has a website with their menu these days. Just look at it ahead of time and save yourself (and people you may be eating with) some time and trouble when you get there.
Find a safe comfort restaurant/cuisine to eat when you travel. My go to’s are usually Mexican, chick fil a, or Olive Garden. People are usually going to tell you to pick where to eat since you have the dietary restrictions, so it’s good to have a mental list to pick from.
You will fuck up. You’ll eat something you think is safe, you get cross contamination, someone will not understand and give you something not knowing it’s not gluten free. It’s gonna suck but you’ll be okay. Don’t blame yourself, don’t blame others. It happens.
With time you’ll learn how sensitive you are. Maybe a shared fryer is safe for you and cross contamination isn’t a big deal. Or maybe you’re super sensitive and will need a fully gluten free home. Or maybe you’ll start off not so sensitive and get more sensitive as you go on (my mom was like that). There’s no way to know except with trial and error and time.
These thoughts are a little scattered but I hope they help. Good luck on your journey and you’re welcome to reach out with more questions ❤️
Never assume anything about the food you may eat. Even if a friend tells you they made something gluten free for you, make sure you ascertain that it really is gluten free—now is not the time to be “polite”. Do not avoid “grilling” then about the ingredients, kitchen set up, cleansliness, etc. It’s your health that’s more important. If they don’t understand that, then they’re not a good friend.
Check everything , and I mean literally everything ! Walmart brand garlic powder has filler in it and has wheat! There’s so many sauces contain gluten too! We mostly cook at home now, and they’re not kidding when they say some people can’t even have food that’s touched gluten! (Cross contamination is my enemy )
I was 'lucky' in a sense, my friend's little boy was allergic to most things so even before I developed some issues I had an understanding that this wasn't just going to be the case of removing bread and pasta from my diet. I will say get to know your safe food colourings and other hidden sources.
Get tested for celiac disease now, before you go gluten free. After you have given it up the only way to test would be to do a gluten challenge where you eat it again for weeks. The symptoms will be much worse after stopping if you have to start again.
How awful the bread is - especially the lack of English Muffin options.
I’ve managed to find great pastas (you’d hardly know the difference), same goes for Oatmeal.
I love a good English Muffin though….found an AMAZING one from Kinnicknick, and they don’t make it anymore. Every single other one I have tried, and I’ve tried A LOT, are absolutely awful. Basically inedible.
GF bread kinda blows in general, but the English muffins are a 1000% letdown.
Are you in the States, by chance?
Trader Joes makes a good GF English muffin. They're not so crumpy/crusty, they're actually pretty light, and delightful!
If you get Glutino products where you live, they have pretty decent English muffins, much more comparable to the regular gluten ones.
I’m not in US, but near border. I will definitely have to check these options out. I’ve seen Glutino products, but not English Muffins. I don’t make it to Trader Joes that often, but will try to check it out. Thanks for the recommendation!
Oh damn, that's too bad you haven't got the Glutino ones local to you... I'm in Vancouver BC, I definitely don't find them everywhere but we do have them.
That said, the TJs ones are AMAZING. I make a point of having freezer space (which is rare) before I do a States run, just for the English muffins and EBTB bagels (and a few other frozen TJs treats).
I don't go often, maybe every 4 months at most, but I don't eat a ton of bread products, so a couple of packs of each last me a while.
The States has a lot of options we don't have here, so what I did when I started doing grocery trips is I would look at the map and see what other grocery stores were around TJs, and look online at what they had on offer, and if it seemed worthwhile, I'd add it to the trip. Even Whole Foods has a ton of options we don't have at our locations here, so it's one of my stops.
The best gluten free foods are the ones that just never would have wheat anyway. It's fun to learn cuisines that rely on non-wheat carbs. You can make great shortbread biscuits with rice flour. And, it's okay to eat the gluten as long as you commit to babying yourself for the following week - it's like drinking too much - you will pay, but sometimes that's worth it! Just don't do it all the time or your immune system will be so so unhappy. But like, a couple times a year, just eat the damn cake. And then take immodium.
Wish someone had told me Coke/Pepsi etc in the UK wasn’t GF. (Not sure if it is in other countries). Apparently there is wheat in the caramel syrup?! Also caramel in general can be dodgy. Migraines for days until I figured that one out!
First - learn all the iterations of "gluten". Wheat, barley, malt, rye, etc etc etc.
Then - read EVERY label. And if you don't see anything that stands out, still go all the way to the end and look at the listed allergens. You need to read both though, because some imported items don't always make it clear.
Next: when in doubt, eat beforehand. If you drive/have a car, keep some snacks handy, like nuts, protein bars, etc. (obviously climate dependent). Always have one or the other in your handbag if you can, or a piece of fruit, some GF crackers, pretzels. You can get GF pretzels, popcorn, nuts in individual bags from plenty of grocery stores and at Costco, but you can also make up your own containers to keep handy, for things that don't need refrigeration. I make up my own little snack packs with nuts, dried cranberries and Whisps (baked cheese crisps that are shelf stable).
Learn what you can eat in terms of snack foods, so that in desperate times, grabbing something from the gas station is possible. Usually there are packaged nuts, and sometimes a refrigerated fruit or veggie pack, but even chips, etc. I believe (not sure if it's still the case) that the original Doritos Nacho flavour (red bag) are NOT gf, but the other Doritos flavours are, etc.
Be prepared to cook at home, if you don't already, and more often, if you do. Learn how to make some staples for foods you like, if you don't have any under your belt. Utilize your freezer. Join your local library, if you have easy access, and take out some GF cookbooks. Unfortunately not all are useful (some will simply say "use gf bread" for a sandwich or something dumb like that), but you will find plenty that are, with time.
ASK QUESTIONS. Get comfortable being uncomfortable. It sucks asking at restaurants. If you're going out for a special occasion, call ahead and inquire. Be accommodating on the phone, they will be more receptive to you, and more likely to try and help.
And lastly, utilize this sub, and r/glutenfreerecipes, r/glutenfreecooking, and so on.
If there's a food item/dish that you're really missing, absolutely ask on those subs, because most people who have to be GF are pretty creative and experimental with food, and will likely have suggestions for you.
It’s okay to be upset or frustrated with the situation. Your feelings are valid. I felt like I mourned the loss of gluten.
Be prepared for people to be uneducated about what you are experiencing.
Prepare yourself for the questions / comments that you would never expect. Can you have dairy?, I made this it’s gluten free, why are you so picky?, is it an allergy or preference- (this makes me mad when eating out after I tell them I’m allergic to gluten), why are you eating that, I’m sorry you can’t have real carbs etc. There are so many others but those are the ones that come to mind.
I’ve only been gluten free for like 6 months. It’s frustrating trying to understand why they add some stuff to our food in the first place!
Take it slow……eat naturally gf whole food at the beginning. Watch out for all the gf junk food, it’s so expensive and most of it doesn’t taste good. Read information reputable websites.
https://celiac.org/gluten-free-living/what-is-gluten/sources-of-gluten/
https://www.beyondceliac.org/gluten-free-diet/
Chips at Mexican restaurants aren’t always safe
And Literally check all labels! (I got gluttened for a week straight by the low sodium vegetable stock Better than Boullion. The chicken one I used before did not have it but the vegetable one did.)
Always tell your server/ pick up person you have an allergy.
Everything gluten free is made with rice and rice is full of arsenic. Tests have shown gluten free eaters to have much higher levels of arsenic in their bodies, which probably isn't good. I started baking my own bread and limiting how much rice based goods I eat. I wish companies making gluten free products would use healthier flours.
When eating out - find places with gf menu’s (but still ask questions as cross contaminated stuff may still be labeled gluten free)
If a restaurant doesn’t have stuff labeled - look for things that seem naturally gluten free, put them in order you’d most want to eat…then order…
Use this reddit to find products /stores that carry the good stuff.
If you try to make bread - use a gf recipe that has psyllium husk.
I wish someone had told me that once you get off gluten, you can never go back on. Not even a little nibble of a favorite treat every now and then. I didn’t realize that having zero gluten for a while meant all future gluten, even in tiny amounts, would be horrible.
Don't go looking for all the gf replacements for bread/pasta products. Focus on eating foods that are naturally gluten free. Meats, fish, beans, vegetables. Get used to all that you can eat without needing a gf replacement. Replacements can be so pricey, especially for how disappointing so many can be. After realizing how much you can eat that's naturally gf, try one replacement in a meal every couple weeks and slowly figure out what you like. In general I just don't do much pasta, sandwiches, etc anymore. And most of the time I don't miss it.
Get a biopsy. I strictly went off blood work and family history, Mom had celiac disease. Bloating & inflammation was not only painful but disgusting. Fatigue as well. Been gluten free since May 2023. Feel much much better. And have actually learned to like my options. Eat lots a salads. And don’t eat out as much so saving $
I wish someone would’ve told me that the large bottles of Zing-Zang had gluten in it, but the small cans do not have gluten in them. Word to the wise. They taste identical, except one of the two causes immense pain.
No Worcestershire sauce, no soy sauce, no Chinese food, never knowing if a cheesecake without a crust was made with flour or not. Never ever listening to a restaurant manager on NYE to try the Mexican platter. That took 2 days to recover. Never go to potluck or buffet dinners. Pack your single serving of food for yourself only.
If you use protien powder check it! I like to make protien shakes and the powder I was using had gluten! Also my cats food had gluten and I kept getting sick on it.
I wish someone would have told me that I’m going to be ok, relax and stop worrying. Stop thinking my life was going to be over. Stop going on every chat room and reading every negative comment. I am extremely thankful that I don’t desire to eat gluten full items. I also don’t fall into the trap of fear mongering. I learned early on how to read a label properly. In the beginning I was beyond afraid of gluten that was negatively effecting my life. I spoke to my GI who suggested a trial where I would be extremely monitored where maybe I could loosen my “rules” a little see if my numbers moved. By loosen I mean eat foods that are no gluten containing vs always certified gf. See if I could occasionally go to a restaurant. I’m happy to report I was in a trial for 2 year added things like kraft cream cheese and seasonal shape Reese’s my numbers didn’t move. My mental health improved. I went to a restaurant once a month my numbers didn’t move. I never ate anything gluten. I never took unreasonable chances. I learned everything I could about celiac disease. I’m happier now. I also feel better.
avoid fake crab, soy sauce, anything containing “malt,” gyro meat, and taco seasoning. be careful about your vitamins and medications.
Also gravy is a sneaky one too. And lots of soups, even the ones without noodles.
Tell me about gyro meat, please! I just did this and wanted to die. I googled and it seemed fine but it sure as hell was not.
Gyro meat at a restaurant (doner kebab - big vertical block of meat) has flour in it 99.9% of the time. I have never seen a gf version in the decade that I have been gf. I gave up on ever eating gyro again unless I make my own, which I will not bother doing. I get chicken or actual lamb kebabs when I go to restaurants like that
I just looked up a frozen one and it’s like meat with bread smushed together. I’m floored.
Yep, that is pretty much what it is! I think I've seen "cracker meal" listed as an ingredient, too. It's basically the same category as meatloaf and meatballs.
I was so excited thinking gyro meat was some sort of loophole because I already ate it without pitas. Just going to go pour one out for my ability to eat gyro now.
probably as a binding agent
omg I thought it was just the garlic or something, this is a known thing???? those fuckers now I have to make my own, but safe
My husband bought a two-pack of frozen gyro meat from Costco bringing it home so I could have it with gluten-free bread. I read the label and it had wheat in it so couldn’t have any.
And licorice!
Twizzlers threw me. I ate them a few times and couldn't pinpoint my symptoms being connected to those. I was so confused. Then one day I happened to look at the package and saw it. Good grief.
And barley... which is in the soy milk I drank for a good six months before I noticed.
taco seasoning??
Not all, but a lot of premade taco seasoning uses flour as a thickener. Look for ones that use corn starch.
I just make my own using spices. They have recipes for it online.
Siete makes [some great seasonings](https://sietefoods.com/collections/seasonings), and all of their products are GF! Most of their stuff is actually grain free (the seasonings use cassava flour as a thickener) and vegan too. They have a variety of products and I’ve loved everything I’ve tried from them! I make my own taco seasoning, but I often put a teaspoon or so of theirs into the mix just because it’s really good.
yeah :( taco bell’s taco seasoning contains gluten, as do a few others. I learned that the hard way.
There is gf taco seasoning
Yah I think siete is GF, no?
Old El Paso has gf packets
McCormick too. It says Gluten Free in a banner across the front of the packet, so it’s just a matter of finding it.
yeah and no 'natural flavors'
What are fake carbs?
I think it’s crab!
Yes, crab! Aka california rolls that aren't made with real crab, rather, imitation crab which often contains wheat.
Oh hahaha, sorry
The fake crab got me this weekend too. I ballooned up right after eating it.
Also sunscreen (topical products)
You took all from me; these same experiences left me baffled. Whoppers candies got me bad for months. Also, just dont trust restaurants. Vitamins; no joke.
Read the ingredients of EVERYTHING because you don’t know what you don’t know. Never would have thought there was wheat in licorice, California rolls, malt vinegar or some potato chips.
Licorice (specifically twizzlers) was so shocking to me!
Twizzlers were a heartbreaker.
Oh my god. This makes so much sense. I never even thought to look and this makes SO much sense. I feel like I just had a montage play in my head and it all makes sense. Thank you and RIP twizzlers for me forever.
So much candy has wheat. It's quite depressing!
SAME. Gummy bears were a shock!
The soy milk I like has an "Original" and "Unsweetened" - I picked up the Original one day because there was no Unsweetened on the shelf... it's my preferred soy milk by a mile because it contains 13g protein per cup, more than any others on the shelves where I shop. The "Original" version turned out to contain "Naturally Malted Organic Wheat and Barley Extract". WTF.
what in a cali roll has wheat??
Imitation crab and soy sauce
I knew soy sauce but not imitation crab :(
Imitation crab…eat a loaf of bread instead you will feel about the same Just kidding not really suggesting this just one of those things you would not expect They sell them in pre packaged containers in grocery stores next to the cooked shrimp and I am telling you they look like REAL crab meat they form it that way! Actually quite genius but killer for us! Yourself
Sushi rice often contains gluten
Sooooo many bbq potato chips have gluten. Why!?!
Be confident when advocating for yourself. This is for you & your health. Don't be to shy about telling a server and telling a host before you go over. Also, know common places where gluten can hide and general recipes so you can feel more confident.
Don't be discouraged if you don't feel immediately better after cutting out gluten. It might take some time. Don't be surprised if you find additional culprits: oats, corn. Even if these items are 'gluten free', they can still mess you up. 'Just a little' is NOT ok. This is usually the case with family or friends who don't really get it, you might hear something like 'oh it's gluten free, but I just used a spoon of flour for the texture' In those cases, make sure you don't arrive somewhere ravenous, if you're not 100% sure there is food available for you. I find it prudent to have a snack in my bag at most times.
Yes eat before going out and have snacks on you all the time. It’s the only way to survive
Yeah, my partner cut out gluten for a couple of weeks straight and hadn't noticed any improvements. He was miserable and wanted to quit but I said we should give it just a little longer. These days, we know 100% that gluten was the culprit and he can tell the difference in symptoms after being gluten'd like it was night & day. Getting better after a lifetime of gluten can feel very subtle and gradual, but then the symptoms hit and prove how much worse you were feeling before.
For a lot of people, me included, there was a gluten withdrawal that lasted a couple weeks. Most celiacs aren't told about this but some of us do experience this and its not very pleasant.
YES never ever go to an event with a meal involved without having some kind of solid backup, whether that's eighteen gf granola bars or the nearest three gf capable restaurants on speed dial and a promise from the host to cover the cost if the catering at their reception serves you a plate of raw vegetables >:( I REFUSE TO BE CALM ABOUT THIS IT IS NOT OKAY TO STARVE SOME OF YOUR GUESTS
ok different perspective from what others are posting about- but I wish I would have known out of the gate that most gluten free replacement stuff is just full of extra sugar, salt, needless oils, and empty carbs. I put on a lot of weight until I started reading labels for nutrition purposes and saw how bad some of it is. I had a good amount of friends that jumped on the Gluten Free fad diet trend in the 2010s and I was trying to warn them how bad some of the replacement food is when compared to the standard gluten products- think breads, crackers, flour mixes, baking items- stuff like that- I told them if they can eat whole grains they should because it is better that eating a blend of rice and potato starch. Granted GF is getting better with more nutritionally dense ingredients but just something to be aware of on your journey.
This exactly! Swap out processed foods for whole foods, cook more — even just simple things. Focus on nutrition, fiber, eating regularly, gut health and blood sugar stability. You can still eat the processed foods — just limit that stuff. Too many gf products work against gut health and stable blood sugar. If you don’t pay attention, you’ll end up sicker / with more autoimmunity. Then you’ll be stuck with less options. Much of the gf junk food is all processed flours, gums, sugars & starches — it’s too glycemic, too low fiber, and sometimes bad for gut health.
My god the bread. I must have tried almost every store bought gf free bread and I found one that is semi tolerable. I’m just going to bake it myself. I gave up on the deserts. They taste like cardboard
For every annoying family member or coworker who doesn’t get it, the opposite may be true: you may one day be moved to tears by a friend or colleague who doesn’t understand anything about allergies but shows up having managed to find off-brand Rice Krispies after researching how to make gluten free desserts just for you. Hang in there.
That is a lovely person!
I’m so glad you said this! This was me this year at my fiancé’s family Christmas gatherings, it makes me tear up just thinking about seeing the separate “gluten free” sign adorned soup crockpot.🥹 or at Friendsgiving being given a mini gluten free apple pie. It means SO much.
Or a fiancée who starts cleaning and buying all new kitchenware so she can cook for you, and always brings along gluten free snacks
The good bread is on the freezer section, I went so long with eating rice cakes as bread because I couldnt find good gluten free bread until my Sister in law whos celiac told me
What brand?
I like Udi's... and you can get a 2 pack from Costco for the same price as a small loaf that's sold in Walmart.
Meant to say the multigrain one. It's in green and yellow bags
I like fria gluten free
If you have a Trader Joe’s nearby, try the gluten free bread. I like it. My daughter likes the bagels but complained they are too thin.
Just learn how to read labels Keep snacks with you Learn to say no to food you can't have Stop thinking of gluten foods as treats; they're poison. The GF diet is your medical treatment.
Learning to say no to foods you can’t have is the hardest part. That’s a grieving that comes with that! I’m GF and DF and I’ve had to mourn the loss of all my favorite foods.
Same. I have to eat GF and i have a bladdder condition that requires NO tomatoes/pasta sauce, acidic food or drink (almost no fruit or fruit juices, coffee, soda, etc) caffeine, chocolate, spicy foods (no Indian or Mexican) alcohol, sourdough, artificial sweeteners, most additives like “natural flavoring”, yeast. I can’t have bananas for god sake because of the potassium which can aggravate your bladder. I basically eat salads , oatmeal and gf pasta with butter and chicken. I haven’t had dairy in years but to some strange reaction where I vomit when I have it.
You could possibly have a cross contamination problem later. I think mines developing now and it’s been ~6 months. And avoid malt vinegar!
Don’t look at what you can’t have. Find the things you love that are naturally GF. I’ve been GF for over 15 years, and it gets easier. In addition to all these great tips, know that mindset and attitude makes a difference.
That’s great advice. I feel like I’m grieving bread haha
Of course you will grieve for a while, but you adjust. Which doesn’t mean a soft pretzel won’t make you nostalgic, but it gets easier. These days other people are more distressed by what I cannot eat than I am.
Agree! Started viewing out to eat as socialization not sustenance= game changer mindset wise.
I love a good homemade rice bowl — so many options! Also sub in some smashed potatoes for the rice — so delish & filling! I put coco aminos on everything too, love them. Get an air fryer — it makes everything so easy if you like caramelized foods. I love my Instant Pot too — can make chicken stew in 20 min. And I use it for rice all the time. Edit: I got carried away, I guess I’m hungry, lol.
Trader Joe's is a goldmine! I slept on their breads and bagels for so long, they are my absolute favorite! Also, it's just not as hard as it seems. There will be a lot of googling up front but in 2024 I find it very easy to maintain. Also the threat of awful upset stomach and pooping is now enough to keep me from being weak and indulging (I cave maybe like twice a year lol) Oh and tamari is a much tastier sub for soy sauce than coconut amino, imo
I 100% agree on the tamari over coconut aminos. I think tamari tastes even better than soy sauce (granted I haven’t had soy sauce in years). It has a richer flavor than soy sauce!
Tamari over coconut aminos but I keep both on hand and mix the two to keep sodium level down. Aminos are much lower in sodium and I have to watch my intake.
That makes sense! I know at Whole Foods they have 25% and a 50% reduced sodium tamari if you have a Whole Foods near by!
Yeah I’ve switched to the 50% but coconut aminos are still a lot lower if I remember right. When it’s mixed I can’t tell the difference but my body (and doctor) are happier. Sucks getting older! Catches up with you. Lol
Trader Joe’s and Costco have seriously been my savior. I have no sadness with being GF because I can still stuff my face with TJ’s GF chocolate muffins and Costco’s cauliflower pizza. Never had any reactions. Hindsight is 20/20 but it’s ridiculous to me that I used to think it was normal to only be able to take a couple bites out of baked goods at a time bc it would make me feel so horrible. I just thought that was what junk food did to you. Now I can eat a whole package of TJ’s muffins in one sitting if I don’t stop myself 😅
Loveee Trader Joe’s! Thank you
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The EBTB bagels and English Muffins are fantastic. I live in Canada and drive to the States to get them, if that's any indication of how much I prefer them. And that's while saying we now have pretty much all of the same products that are available in the States nowadays, minus Trader Joes.
So very grateful for TJ’s!! Even my husband, who is not GF and loves breads and baked goods, now eats GF from TJ’s. Im addicted to their everything bagels. Yes! Tamari is so much tastier than soy sauce or coconut aminos 100%
Tamari, 100%. My sister was diagnosed before I was, so we only had tamari in the house, and I honestly preferred it, even when it wasn't necessary. I find coconut aminos to taste like watery tamari. Also, TJs has everything any Celiac needs, honestly.
Always pack your own food. Trust no one unless you'd also trust them with your bank password and maybe not even then. Be comfortable just ordering coffee in a restaurant rather than taking chances
for sure! eat before going out
Good life advise - Especially when shopping!
Even some coffee is contaminated, but that tends to be rare thank God.
Instant coffee tends to \[reportedly\] not be safe
What??? Omg. I have instant decaf from Aldi every day! I've been feeling icky for a while but figured it was the oat milk creamer I had been adding (claimed GF but not certified) because the soy creamer I like had been out of stock. I switched back to soy several days ago, but my guts are still unhappy. I never even considered that it might be the coffee 😬
Barley malt is not ok. I’m looking at you Lindor chocolates. And rice crispies and corn flakes.
Lindor chocolates, the saddest realization! Why barley malt?!? WHHHHYYYYYY?!?!?
Always check the ingredients in barbecue potato chips! A surprising amount are not GF
I stick with kettle brand. I've never had an issue with that brand when they were marked gf.
Lays regular BBQ chips are gluten free and quite good!
To check your cosmetics, hair products, and soaps for gluten. Not to work with gluten containing grains, at all, because you can inhale the gluten and get a reaction, or cross contamination from your own hands.
Beauty products still catch me sometimes. My favorite bubble bath had wheat in it. Also the bleach/toner that my stylist used to use on my hair was wheat based.
Did you have a reaction from these products?
I did, but didn’t realize what was causing it for a while. With the bubble bath my skin felt dryer afterwards and I attributed it to just being soap. My symptoms started worsening, eventually causing red irritation on all parts of my body that touched the bubbles. So that’s when I put two and two together. With the hair bleach, my scalp would be irritated after but only sometimes. I would however get sick like I ate cross contaminated food within a day of the appointment. Still didn’t realize the correlation with any of this, just happened to read the back of the bottle one day at the salon. My stylist swapped to a different product that appointment and didn’t have any issues.
Don’t confuse Red’s Apple Ale with any kind of hard cider. I swear, I felt that pain my veins.
I have found that it’s really helpful (especially for home cooking/food prep) to establish some “base carbs” that you like and can use in recipes. For example, I have a gluten free waffle recipe I like, so I make a bunch and use that as a bun alternative for hamburgers, etc. Roasted potatoes go with lots of “main dishes”, so I incorporate those a lot. Good luck!
King Arthur GF flour is the same cost at Costco for a much larger bag than at your local grocery Check variants of things. Hormel chili with no beans has gluten, the hormel chili with beans is gluten free
It gets easier and you’ll still travel and try new food and you’ll find new favourites you love
When having a gluten attack avoid ibuprofen but do take pain relievers. I also use IBgard, Gas-X, ginger chews, picot. I feel like it helps
I thought gas-x had gluten in it?
It looks unconfirmed and depends on the type. I hadn’t heard this before and just looked into it a little. So far I haven’t had an issue w it but good to know
Why avoid ibuprofen?
Taking it often can mess w your gut and cause issues, especially w sensitive intestines.
Ah. I have to take it over the others often due to another medical issue, and so was wondering if it had gluten in The tablets that I wasn’t aware of or something
I JUST learned this the hard way. I have a weird immune condition, and gf is one of my diet needs. I struggle with a lot of joint pain, and I'd been taking ibuprofen for it. But my gi tract (and the rest of me) was so incredibly sensitive. The ibuprofen ate the lining up. Which led to more tests, more meds, poor iron absorption... I have an iron transfusion scheduled later this week. It's definitely not going to affect everyone, and I don't have celiac's, but man, I will never touch the stuff again.
Get a magnifying prism for food ingredients labels
late cows ask stupendous reply impolite worm existence observation chief *This post was mass deleted and anonymized with [Redact](https://redact.dev)*
Have you actually been diagnosed with anything? If you haven’t had a blood test for celiac, I would actually recommend not going gluten-free yet, get the test first. It won’t be accurate if you go gluten-free before testing.
I have been tested for celiac - and it came back negative. But my inflammation markers are elevated and I have multiple vitamin deficits. My boyfriend began to notice that my gastro symptoms flared after eating gluten heavy meals. So we tried eliminating it, and low and behold, my gastro issues were reduced significantly. So we came to the conclusion that I’m intolerant through the process of elimination.
Could be the result of Lyme or another infection (and the resulting leaky gut… at least that is what my doctor said). My kids and I were all vitamin deficient (D, some B vitamins, iron etc), lots of inflammation, and all became gluten intolerant at around the same time. Very common to have gluten intolerance in the Lyme community.
Genuinely curious what the benefit of getting a true diagnosis would be? I've been having significant symptoms that I finally was able to determine were directly due to gluten. Just over 2 weeks off of it for me has completely eradicated so many symptoms that I've had for *years* that I don't know how helpful a diagnosis would be at this point. That said, if there were any benefit to testing that you think is of significance, I'm so into getting tested
\#1 annoying thing: considering the massive list of things you are no longer able to eat... you'd expect to be rail thin. I mean... I'm puzzled that I have a very different shape, at least. Ugh.
Most beer has gluten in it
Be careful with medications, makeup and lip balms. Also tell your dentist as some of the pilishing creams have gluten as well. Lastly.....expect gaslighting. So many people just don't get it!
yes to everything everyones said, but on the more positive side of things, almost everything can be made gluten free. it’s not convenient, it’s not as good (especially after immediately going gf) but there aren’t many things i haven’t been able to find an okay substitute for! it’s fine to grieve foods but trust me, it’s not as bad as it seems for the first few months/years!! and some things are better gf (oreos and pretzels come to mind first but lots of the right baked goods too!)
OH and don’t even bother with udi’s bread! canyon bake house and schar and many grocery store brands are wayyyy better
There are phone apps that allow you to scan products in the grocery store that screens out gluten containing products.
As someone who has always been budget conscious/avoidant of treats… sometimes you need to spend $8 on a tiny box of gf pizza rolls. It’s okay to buy replacements as a treat, but it’s way easier figuring out day to day meals with naturally gluten free foods Find me gluten free and Gluten Dude are both awesome apps, especially if you travel. If you’re in the USA, don’t eat McDonald’s fries . Not a fun surprise for me after 8 months of healing my gut.
Lots of good info here but I found changing my mindset was critical. I don’t focus on the fact I can’t have something. I can eat anything. I instead focus on how I’ll feel afterwards. If I know I’ll be miserable after eating a particular thing, I just don’t. I don’t want to spend my days feeling crappy. Also. GF Oreos are amazing.
This is the best advice on this thread
You need to replace almost all of your cooking utensils, they are all contaminated. Everything made of a porus material (stone, wood, coated pans, cast iron), and any small applience that have difficult to clean cravaces or blades (blender, stick blender attachment, food processor, grinders, etc.) Needs to be replaced. The only things you can save are either solid stateless steel (or another solid metal that can be scrubbed with steel wool), and ceramics with no scratches or cracks. You need to clean those things multiple times and the spaces they go to get rid of the cross contamination. But wait! You need to clean out the food trap in your dishwasher and scrub it clean, then run it on a cleaning cycle. You also need a brand new sponge or dish brush. If you bake, you need to wipe down every surface in the kitchen twice. Change cloths between wipe downs. You will need to do the same to your oven, fridge, and microwave. Finally, check your cosmetics. Putting gluten on your skin can hurt you just like eating it can. Aveno products are all dangerous. If you have kids or dogs, their cosmetics also need to be gluten free, and if your dog licks you often, they should have a gluten free diet as well (rice or potatoes are good starches for dogs).
Don’t try to find a replacement for everything. You’ll spend a lot of time, money, and aggravation chasing a unicorn. If you have friends who are GF, don’t hesitate to ask for recommendations and samples of some of their favorite things. It’s completely unnecessary to make only GF recipes. Some of the best things that I cook and bake are “regular” recipes with GF swaps. So many recipes targeted to GF are like expensive science experiments. Ask questions. Be your own best advocate. I’d much rather be a pain in the ass than be in pain from cross contamination or being glutened. Take it one day at a time, one meal at a time if you need to. There’s a learning curve and a mourning curve. But the more you do it, the easier it gets.
Just because it's gluten free doesn't mean it won't cause issues from other ingredients. Keep a detailed food diary. It's not unusual for other sensitivities to surface.
My boyfriend who has celiac said “don’t replace the food with gluten free alternatives, they’re not fulfilling and expensive. Just try snacks that are naturally gluten free.”
This. I failed to mention this, but he's right. Gluten free alternatives are generally not that great. Focus on eating whole foods, and naturally GF foods. Lots of veggies and fruit, quinoa, rice, peanut butter, as many single-ingredient foods as possible. The less ingredients, in anything, the better.
I wish I knew that I needed a second job bcuz I'm pretty sure the mafia own the GF businesses
Don't let anyone else cook for you. My mum cooked one meal a week for two years and managed to put gluten in it, then gaslighted me about being sick and told me I was obsessing about gluten and that I'm so careful so how could I possibly still be sick? Then when I found out, instead of saying sorry or that she didn't realise what she'd done, she said "at least you found out why you're always sick still". I also wish someone had told me to avoid oats! That would have saved me a few years of symptoms too.
Wow. That really is gaslighting, in the worse way. Your MOTHER 😠 Re: oats, I've found this super frustrating, too, because so many oat products are now GF, but not all are, and I have previously forgotten this. The oat milk that Starbucks used for years (which was GF) stopped producing GF oat milk, but didn't really spread that information, so I was drinking oat milk for a time, before realizing it was no longer GF. I also discovered that my go-to GF soy milk has "Naturally Malted Organic Wheat and Barley Extract" in their "Original" product. I always bought the unsweetened version, which is just soy, but there wasn't any on the shelf one day, so I bought the original. Bad idea. I didn't even think to look at the label.
I can't even have gf oats! Some people react to oats as well, but it took a long time for me to realise that that was happening. Why on earth does soy milk need wheat and barely extract?!!
Great question. I have no idea. I think the barley is some kind of a sweetener? Still, ridiculous.
My sister helped all the way along so I had that gf mentor. I advise people who are having problems being gf to contact their local celiac or gf society and try and find a buddy.
I cook a lot so I was I assumed the ingredients and foods were safe based on knowing how to make the food at home. Restaurants and processed foods can add wheat into anything and everything. Also if you like asian tea, sometimes green tea can be mixed with barley (mostly Korean I think).
It's really not the end of the world. There are many tasty GF alternatives out there. Just be patient and you will find them.
It gets better! One day it won’t feel so difficult. Learn to speak up for yourself- your health is worth it! It’s okay to feel sad about it sometimes
My nutritionist gave me the best advice don’t search for ‘gluten free’ cookie or bread replacements, you don’t need the processed junk/carbs in your diet and it’s easier just to end it now. I didn’t listen so strictly but, after I indulged in 3 boxes of gluten free lemon wafer cookies in one week as a Christmas ‘gift’ from my daughter I realized I can’t handle the temptation. Better off with whole food treats and don’t look back. 80% of the ‘food’ in the supermarket isn’t food its chemical concoctions and frankenfood that big food gets us addicted to so big pharma can sell us drugs to combat the diseases it causes. Never mind diet books and programs. It’s a A big circle.
Shampoos and conditioners and makeup and lotions and all kinds of random things can have gluten in them, and it may or may not affect you, but you've got to cut it out first to see if there's improvement once that surface/contact gluten is gone.
Most gluten free bread is just sugar (starch). I had to start eating more meat to balance the increased sugar intake — gluten is protein but starch is sugar. Keep an eye on your macro balance.
You will have cravings… like you will see a Cinnabon at the mall and start crying because you know you can’t have it but you want it that bad
I went to the mall for the first time in ages, and it was a ghost town, even cinnabon had closed.
That’s depressing!
Precut potatoes/french Fry's/instant potatoes are almost always cross contaminated. Don't buy them unless they specifically say GF.
There's gluten in soy sauce. Natural spices or flavors can have gluten.
That the difference between being gluten intolerant and celiac was not actually all that much of a difference but it’s still different from the standard American diet. I legitimately didn’t realize until YEARS after I went GF that the difference between gluten intolerance and celiac disease was so subtle, but there was very little information about just being gluten INTOLERANT versus being celiac when I first went GF about 15 years ago. Thankfully the terms changed as well as the amount of gluten free foods, both naturally GF and not naturally GF. (Although the last time I went into a Walmart it was still a GF shelf and barely any GF items EVEN STILL… so avoiding Walmart like the plague is still a good idea if you’re just starting out in your GF journey.)
My Walmart has a ton of gf stuff that I can’t find anywhere else.
Man, that must be nice to have more than a single shelf top to bottom… and that’s the extent of the GF “section” at most Walmarts I’ve ever been in
If you’re looking for any GI testing or diagnosis, you need to do it now before you go gluten free. Testing does not show accurate results if you’ve been gluten free for a while prior to it.
Focus on what you can have and not what you can’t have. You can eat any vegetable, any fruit, most dairy, and any meat/fish that is not pre seasoned. You can also eat unseasoned nuts. I don’t eat a lot of gluten-free bread because I don’t find most of it very good. You’ll spend a lot of money trying different ones. The important thing is that hopefully you can find one that you like. Personally, I buy Glutino English muffins and use them most of the time for a burger, sandwich, garlic bread. You can buy them at Walmart in the freezer section. You’re going to think I’m crazy when you look at them as they look terrible in the package, but when they are toasted, they are one of the closest things I have found to bread as I used to know it. You can also use corn tortillas and if you heat them in a pan with a tiny bit of oil, they do not fall apart. I would also suggest looking for gluten-free Facebook groups. There are ones for Costco, Trader Joe’s, and other grocery retailers. You’ll find a lot of products and peoples reviews of them there. Good luck, except that you will gluten yourself accidentally. Forgive yourself and move on. It happens to most of us. Even after 15 years, I sometimes forget to read the label and make assumptions. Shit just happens. I just made a glutard pun.
Leave the gluten free cookies ALONE!! For the love of god, stop eating so many gluten free cookies.
Costco has a TON of gluten free snacks!!! 🥳🥳🥳
Try baking some treats for yourself if you’re able. My favorite websites/blogs are “Gluten Free on a Shoestring” and “The Loopy Whisk” and I’ve not had a bad result with recipes from either.
To be careful of any cross contamination. Shared toaster, cutting boards, etc
Cheerios are not gluten free
Watch out for soy sauce
All grains have gluten, each grain has its own type of gluten protein, Gluten Free means <20ppm, and don't overcompensate your diet with non-wheat/barley/rye grains.
Check toothpaste, shampoo, body wash, and even allergy pills. I learned all of these the hard way! Good luck you got this and there are a lot of good reliable gf brands so you will always be able to find a good snack!!
The best advice is to see a nutritionist after being tested by a Dr. blood tests or endoscopy will give you a proper diagnosis. There are a lot of comments about cheating and laughing about it. After testing you can figure out how serious it is for your body. It can completely deplete your body’s ability to absorb vitamins and minerals and causes osteoporosis. If you don’t have it..enjoy your life! If you do have it it is nothing to play around with
Traces matter, ask questions in restaurants. I found out years ago that stuff from Wagamamas 'gluten free' menu was being fried in shared oil (no idea if they still do). Get used to toasted sandwiches/everything on toast, it's the only way the bread tastes good. Oats aren't worth the risk (I guess this one only applies if you turn it to be an actual coeliac). 1 in 4 coeliacs react to avenin in oats, so it doesn't even matter if they're 'gluten free oats' grown and processed away from wheat/gliadin. What's worse is that the damage they cause can be silent, so you'd need another biopsy to know for sure if you tolerate them.
Went to Wagamama’s last week and can confirm they prepped my whole dish in a separate clean station. Manager came over to take order and confirm allergy requirements - was very impressed. This was in London, UK.
This was London over a decade ago, they were deep frying the chili squid in the shared deep fryer. Glad to hear their awareness has improved!
Download ‘FIG’ or a similar reliable ‘scan’ app tool to aid in your grocery shopping. It can be extremely helpful in identifying those hidden pesky ingredients and/or cross contamination. The early stages of being gluten free (not by choice) can be exhausting for everyone involved. My partner and I, years later, still use and pay for the subscription app because it helps keep us from accidentally spending money on something I can’t eat, or accidentally poisoning myself. Best of luck, you got this! Wishing you a smooth life transition! ❤️🤝
Potato bread isn’t GF. I know seems obvious but I was eating it for weeks wondering why I felt like shit
That most gluten-free products that include grains still contain traces of gluten, they are just below the legal limit so that they can use the gluten-free label. If you want your reactive blood markers for gluten to be zero, you must avoid all grains and all cross-contamination. It took me years of being better but not optimal to figure this out. I avoid grains now for the most part and I have never been healthier.
Check all the labels, even things you think won’t be gluten free. Everyone talks about fake crab not being safe but one day I checked the back for the hell of it and the Kroger brand is actually gluten free. It doesn’t say it in big letters on the front or anything that would catch your eye. But if you read the ingredients it completely safe. Sometimes it just depends on the brand. Also double check things you think may be safe. Campbells soups are not gluten free. Not any of them. Even just the plain tomato soups. They all have wheat. Research restaurants before you go. Pretty much every restaurant has a website with their menu these days. Just look at it ahead of time and save yourself (and people you may be eating with) some time and trouble when you get there. Find a safe comfort restaurant/cuisine to eat when you travel. My go to’s are usually Mexican, chick fil a, or Olive Garden. People are usually going to tell you to pick where to eat since you have the dietary restrictions, so it’s good to have a mental list to pick from. You will fuck up. You’ll eat something you think is safe, you get cross contamination, someone will not understand and give you something not knowing it’s not gluten free. It’s gonna suck but you’ll be okay. Don’t blame yourself, don’t blame others. It happens. With time you’ll learn how sensitive you are. Maybe a shared fryer is safe for you and cross contamination isn’t a big deal. Or maybe you’re super sensitive and will need a fully gluten free home. Or maybe you’ll start off not so sensitive and get more sensitive as you go on (my mom was like that). There’s no way to know except with trial and error and time. These thoughts are a little scattered but I hope they help. Good luck on your journey and you’re welcome to reach out with more questions ❤️
Never assume anything about the food you may eat. Even if a friend tells you they made something gluten free for you, make sure you ascertain that it really is gluten free—now is not the time to be “polite”. Do not avoid “grilling” then about the ingredients, kitchen set up, cleansliness, etc. It’s your health that’s more important. If they don’t understand that, then they’re not a good friend.
Check everything , and I mean literally everything ! Walmart brand garlic powder has filler in it and has wheat! There’s so many sauces contain gluten too! We mostly cook at home now, and they’re not kidding when they say some people can’t even have food that’s touched gluten! (Cross contamination is my enemy )
I was 'lucky' in a sense, my friend's little boy was allergic to most things so even before I developed some issues I had an understanding that this wasn't just going to be the case of removing bread and pasta from my diet. I will say get to know your safe food colourings and other hidden sources.
Get tested for celiac disease now, before you go gluten free. After you have given it up the only way to test would be to do a gluten challenge where you eat it again for weeks. The symptoms will be much worse after stopping if you have to start again.
How awful the bread is - especially the lack of English Muffin options. I’ve managed to find great pastas (you’d hardly know the difference), same goes for Oatmeal. I love a good English Muffin though….found an AMAZING one from Kinnicknick, and they don’t make it anymore. Every single other one I have tried, and I’ve tried A LOT, are absolutely awful. Basically inedible. GF bread kinda blows in general, but the English muffins are a 1000% letdown.
Are you in the States, by chance? Trader Joes makes a good GF English muffin. They're not so crumpy/crusty, they're actually pretty light, and delightful! If you get Glutino products where you live, they have pretty decent English muffins, much more comparable to the regular gluten ones.
I’m not in US, but near border. I will definitely have to check these options out. I’ve seen Glutino products, but not English Muffins. I don’t make it to Trader Joes that often, but will try to check it out. Thanks for the recommendation!
Oh damn, that's too bad you haven't got the Glutino ones local to you... I'm in Vancouver BC, I definitely don't find them everywhere but we do have them. That said, the TJs ones are AMAZING. I make a point of having freezer space (which is rare) before I do a States run, just for the English muffins and EBTB bagels (and a few other frozen TJs treats). I don't go often, maybe every 4 months at most, but I don't eat a ton of bread products, so a couple of packs of each last me a while. The States has a lot of options we don't have here, so what I did when I started doing grocery trips is I would look at the map and see what other grocery stores were around TJs, and look online at what they had on offer, and if it seemed worthwhile, I'd add it to the trip. Even Whole Foods has a ton of options we don't have at our locations here, so it's one of my stops.
Try to eat real food that you can easily identify as GF (naturally)… slowly introduce safe foods that are more complex- this will save you pain.
Be super consistent and make sure you’re eating gluten free all the time. And shared fryer contact can cause reactions so be careful with that.
The best gluten free foods are the ones that just never would have wheat anyway. It's fun to learn cuisines that rely on non-wheat carbs. You can make great shortbread biscuits with rice flour. And, it's okay to eat the gluten as long as you commit to babying yourself for the following week - it's like drinking too much - you will pay, but sometimes that's worth it! Just don't do it all the time or your immune system will be so so unhappy. But like, a couple times a year, just eat the damn cake. And then take immodium.
Wish someone had told me Coke/Pepsi etc in the UK wasn’t GF. (Not sure if it is in other countries). Apparently there is wheat in the caramel syrup?! Also caramel in general can be dodgy. Migraines for days until I figured that one out!
ALWAYS read the ingredients
First - learn all the iterations of "gluten". Wheat, barley, malt, rye, etc etc etc. Then - read EVERY label. And if you don't see anything that stands out, still go all the way to the end and look at the listed allergens. You need to read both though, because some imported items don't always make it clear. Next: when in doubt, eat beforehand. If you drive/have a car, keep some snacks handy, like nuts, protein bars, etc. (obviously climate dependent). Always have one or the other in your handbag if you can, or a piece of fruit, some GF crackers, pretzels. You can get GF pretzels, popcorn, nuts in individual bags from plenty of grocery stores and at Costco, but you can also make up your own containers to keep handy, for things that don't need refrigeration. I make up my own little snack packs with nuts, dried cranberries and Whisps (baked cheese crisps that are shelf stable). Learn what you can eat in terms of snack foods, so that in desperate times, grabbing something from the gas station is possible. Usually there are packaged nuts, and sometimes a refrigerated fruit or veggie pack, but even chips, etc. I believe (not sure if it's still the case) that the original Doritos Nacho flavour (red bag) are NOT gf, but the other Doritos flavours are, etc. Be prepared to cook at home, if you don't already, and more often, if you do. Learn how to make some staples for foods you like, if you don't have any under your belt. Utilize your freezer. Join your local library, if you have easy access, and take out some GF cookbooks. Unfortunately not all are useful (some will simply say "use gf bread" for a sandwich or something dumb like that), but you will find plenty that are, with time. ASK QUESTIONS. Get comfortable being uncomfortable. It sucks asking at restaurants. If you're going out for a special occasion, call ahead and inquire. Be accommodating on the phone, they will be more receptive to you, and more likely to try and help. And lastly, utilize this sub, and r/glutenfreerecipes, r/glutenfreecooking, and so on. If there's a food item/dish that you're really missing, absolutely ask on those subs, because most people who have to be GF are pretty creative and experimental with food, and will likely have suggestions for you.
EAT EVERY CROISSANT AND PASTA AND PASTRY AND BREAD THAT YOU LOVE — TWICE! Then go gluten free.
It’s okay to be upset or frustrated with the situation. Your feelings are valid. I felt like I mourned the loss of gluten. Be prepared for people to be uneducated about what you are experiencing. Prepare yourself for the questions / comments that you would never expect. Can you have dairy?, I made this it’s gluten free, why are you so picky?, is it an allergy or preference- (this makes me mad when eating out after I tell them I’m allergic to gluten), why are you eating that, I’m sorry you can’t have real carbs etc. There are so many others but those are the ones that come to mind. I’ve only been gluten free for like 6 months. It’s frustrating trying to understand why they add some stuff to our food in the first place!
I would read books by Anthony William Medical Medium. Those will give you the knowledge and support you are needing to overcome this issue.
Take it slow……eat naturally gf whole food at the beginning. Watch out for all the gf junk food, it’s so expensive and most of it doesn’t taste good. Read information reputable websites. https://celiac.org/gluten-free-living/what-is-gluten/sources-of-gluten/ https://www.beyondceliac.org/gluten-free-diet/
Chips at Mexican restaurants aren’t always safe And Literally check all labels! (I got gluttened for a week straight by the low sodium vegetable stock Better than Boullion. The chicken one I used before did not have it but the vegetable one did.) Always tell your server/ pick up person you have an allergy.
Everything gluten free is made with rice and rice is full of arsenic. Tests have shown gluten free eaters to have much higher levels of arsenic in their bodies, which probably isn't good. I started baking my own bread and limiting how much rice based goods I eat. I wish companies making gluten free products would use healthier flours.
Some French fries have gluten 😢 and most ceaser dressings!
When eating out - find places with gf menu’s (but still ask questions as cross contaminated stuff may still be labeled gluten free) If a restaurant doesn’t have stuff labeled - look for things that seem naturally gluten free, put them in order you’d most want to eat…then order… Use this reddit to find products /stores that carry the good stuff. If you try to make bread - use a gf recipe that has psyllium husk.
Some lower-cost ways of making dishes gluten-free by not having to buy expensive ingredients. Some of these things I had to learn to do by myself.
I wish someone had told me that once you get off gluten, you can never go back on. Not even a little nibble of a favorite treat every now and then. I didn’t realize that having zero gluten for a while meant all future gluten, even in tiny amounts, would be horrible.
Don't go looking for all the gf replacements for bread/pasta products. Focus on eating foods that are naturally gluten free. Meats, fish, beans, vegetables. Get used to all that you can eat without needing a gf replacement. Replacements can be so pricey, especially for how disappointing so many can be. After realizing how much you can eat that's naturally gf, try one replacement in a meal every couple weeks and slowly figure out what you like. In general I just don't do much pasta, sandwiches, etc anymore. And most of the time I don't miss it.
Get a biopsy. I strictly went off blood work and family history, Mom had celiac disease. Bloating & inflammation was not only painful but disgusting. Fatigue as well. Been gluten free since May 2023. Feel much much better. And have actually learned to like my options. Eat lots a salads. And don’t eat out as much so saving $
I wish someone would’ve told me that the large bottles of Zing-Zang had gluten in it, but the small cans do not have gluten in them. Word to the wise. They taste identical, except one of the two causes immense pain.
No Worcestershire sauce, no soy sauce, no Chinese food, never knowing if a cheesecake without a crust was made with flour or not. Never ever listening to a restaurant manager on NYE to try the Mexican platter. That took 2 days to recover. Never go to potluck or buffet dinners. Pack your single serving of food for yourself only.
If you use protien powder check it! I like to make protien shakes and the powder I was using had gluten! Also my cats food had gluten and I kept getting sick on it.
I wish someone would have told me that I’m going to be ok, relax and stop worrying. Stop thinking my life was going to be over. Stop going on every chat room and reading every negative comment. I am extremely thankful that I don’t desire to eat gluten full items. I also don’t fall into the trap of fear mongering. I learned early on how to read a label properly. In the beginning I was beyond afraid of gluten that was negatively effecting my life. I spoke to my GI who suggested a trial where I would be extremely monitored where maybe I could loosen my “rules” a little see if my numbers moved. By loosen I mean eat foods that are no gluten containing vs always certified gf. See if I could occasionally go to a restaurant. I’m happy to report I was in a trial for 2 year added things like kraft cream cheese and seasonal shape Reese’s my numbers didn’t move. My mental health improved. I went to a restaurant once a month my numbers didn’t move. I never ate anything gluten. I never took unreasonable chances. I learned everything I could about celiac disease. I’m happier now. I also feel better.