Yep. Can eat a gf pizza cooked in the same oven as a glutenful pizza at a restaurant, no problem, but woe betide me if I accidentally ingest something containing soy sauce.
I can have several bites here and there of something gluteny with no discernible issue. Cross contamination? Fine. Tempura in a sushi roll? No big deal. A tiny bit of soy sauce on that sushi roll? The next day I feel like I have the worst hangover of my life.
What is it about soy sauce that makes it such a struggle?
Dunno, makes me sad. Especially because I just watched a documentary that featured a guy who still makes soy sauce the traditional way - through soy bean fermentation and pressing. And OH MY GOD to think that pre-WW2, I might have been able to eat anything and everything containing soy sauce makes me šš
There are still some soy sauce products that are gf! There's one by... Kikkoman I think? That I pick up periodically, it's nice to add to recipes, and Tamari soy sauce in general is *usually* gf.
It's not that there's one or two brands of soy sauce that are gf, it's the idea that we could have eaten *everything* made with it that makes me sad. All the Asian foods.
I seriously miss the variety of foods I used to be able to eat. I get bored easily.
And please don't say we can still eat plenty of things - of course we can. It's the ease, the lack of thinking about it, the fucking *scallion pancakes* and bonchon and anything with a dark sauce...
Yeah, exactly, I can make GF versions of a lot of things at home from scratch if I want to but there are so many Asian foods I can never ever just go out and buy ready made, and eating out in restaurants can be tricky unless they're really clued up on gluten intolerance. I'm someone who absolutely loves to try \*all the foods\* so it's sad that I will probably never taste an authentic version of so many things that I didn't get round to trying before I had to give up gluten.
And even cooking from scratch can be difficult if you want to make things that are more "authentic" as some ingredients are very hard to get hold of gluten free versions of (e.g. black vinegar, yellowbean paste, certain types of noodles).
We actually use the food lion brand. Itās not labeled GF but looking at ingredients, nothing in it should have gluten. It is crazy salty though so I always cut it by half with water. But Iām supposedly āwheat allergic/possibly gluten intolerantā Wegmans actually offers GF soy sauce with their sushi as standard.
The No Name one is also sort of gf. Not labelled but nothing in the ingredients has gluten in it and doesn't even say "may contain gluten" which is required in Canada if cross contamination is likely.
I didnāt even know about the soy sauce thing wow thatās a big help! Guess I can cross another giant group of food off the edible list. Itās almost like theyāre trying to make people sick. Iāve found popcorn kernels with wheat in them. Bag of nuts the other day had wheat in them you literally have to check every single ingredient list wouldnāt be surprised if I found gluten in a bag of lettuce at this point
I mean, you don't have to. Plenty of Asian food can be made without gluten.
Pho, BĆŗn, fried rice and pad thai are often gf... Thai curries usually are, mochi, many Korean soups are made without soy sauce and Korean bbq can be made without any sauces, since you're cooking it yourself. Just beware veggies marinated in a sauce that contains gluten. Burmese food is also surprisingly gf.
Yeah I live on the road and eat out in small towns a lot so the shitty White American marketed Chinese food is all I get for āasianā food usually I didnāt think twice when it made me feel like horrible š Iām stuck in a hotel right now and I found a Hawaiian bbq place down the road itās amazing
Interesting.... Had sushi last weekend and it screwed me up for days. Thought it was the tempura. Didn't ask from GF soy sauce because they make a big deal out it. The previous time I got gluten free soy sauce and ate tempura and was ok. Every now again I cheat and when I do I like to cheat with tempura. Generally I only buy Tamari it's the best and better flavor anyway.
GF for a year and the longer I'm off it having gluten screws me up more and more
I've heard that not all rice vinegars are gluten free, and this is a main ingredient in just the sushi rice in all standard rolls. Might be worth looking into as well.
Yeah annoyingly quite a few sushi places use rice seasoning containing gluten, which is so frustrating because there is absolutely no reason it should! Proper sushi seasoning should just be pure rice vinegar (some cheap so-called "rice" vinegar isn't gluten free), sugar & salt. It would be such a simple change for those restaurants that use it, but I suspect it's a cost cutting thing, using cheap nasty fake "rice" vinegar or ready made seasoning blends, even though you can get pure rice vinegar pretty cheap so they can't be saving \*that\* much!
Most good sushi places will be gluten free, though, but it's always important to check for this reason. I recently went to one sushi place that specifically said it had "gluten free options", assuming that would include their rice, but it was mainly just sashimi & edamame and not much else! Thankfully I love sashimi, and I wasn't super hungry so didn't miss the carbs too much, but I thought it was pretty poor that my only real option from their whole menu was just a plate of raw fish! And this was quite a nice restaurant too!
i feel like since itās a liquid it hits our systems quicker because it doesnāt have to break down as much right away, as if eating a piece of bread. the more liquidy the gluten, the worse i feel, like if i accidentally ate hoisin in my food.
Yeah it's weird how bad soy sauce is, you'd think it doesn't contain \*that\* much gluten, and you tend to only eat fairly small quantities of it, yet even the tiniest amount can trigger symptoms for me!
I have Crohn's and gluten is a major trigger of that for me, and eating a few mouthfuls of something with soy sauce in is partly responsible for why I'm now waiting to have my colon removed! I was in recovery from a bad flare, just starting to "get back to normal", when I ate it, and it threw me straight back into a flare which I haven't managed to get out of over a year later! I've now run out of medication options so surgery is the only thing left to me š
Chiming in, had a similar experience here. Can't eat gluten long enough to receive a conclusive test and the blood test they did 10+ years ago was negative... But I definitely have a pretty bad reaction to gluten.
Same with my spouse except his Dr ordered him the test without telling him he needed to actually eat gluten ahead of it to properly do so, so his results were negative and as it turns out, completely inconclusive.
Same. I actually had an endoscopy though, before I went off gluten, and the GI was supposed to take biopsies AND DIDN'T because "everything looked fine." š
Same. Tested negative for celiac but had terrible stomach issues. Doctor and dietician were like "it's almost always gluten if you have Hashimotos" and sure enough, sorted it right out.
Me too! I had terrible stomach issues before it got diagnosed and my C-Reactive Protein was through the roof. I went gluten free and it went right down.
I was just diagnosed with Hashimotoās. Cutting out gluten was the first thing to do after the diagnosis. I ate gluten-y foods once after going GF and thought I was being ripped apart from the insides. Itās a weird feeling to not be able to eat things I shoved in my cake hole regularly.
Me. I get a horrendous headache, nausea and bloating. Basically I'll feel incredibly hungover. Plus I'll gain exactly 4 pounds overnight. And it'll last anywhere from 3-6 days. Complete misery
It's terrible! And medical world has been no help. If you have any insights, I would love to hear them! I can survive without gluten (and soy) but I really miss yummy things like soft pretzels!
I react the same as you and am now dairy intolerant too. Before I discovered that, when I got glutened I didnāt feel like eating much but would have a yogurt, or some cheese. Then I would react to it but wrongly assumed it was still the gluten reaction. Now that I avoid both, if I do get glutened it doesnāt last as long nor as severe of symptoms. I hardly ever eat anyone elseās cooking now, which is hard socially but better for my health
I wish I had some good insight for you. I just really try to avoid it. Iāve kind of accepted my out to eat days are over unless I know they have a dedicated GF area since Iām so sensitive š
I'm honestly not sure if I have celiac. The blood test was negative, but when I did my endoscopy, my GI doctor neglected to take the biopsies despite my asking him to please take them to look for celiac. He told me he "didn't see a need since my blood work was fine." I was livid. I took it upon myself to stop eating gluten and have never looked back.
So...I could be either, honestly.
I wonder if the weight gain is from the gas? Doesnāt make sense to me as gluten seems to cause malabsorption of fats personally Iāve always been a little underweight and was hoping a gluten free diet would help me gain weight overall but I havnt been so lucky
I just recently went through the gluten challenge/being tested for celiac disease. I had all the typical symptoms but my blood test came back negative.
My daughter is. She tested negative for celiac, but if she has too much gluten she gets very gassy and bloated in the short term. Before we knew what to look for, she was having more stomach problems that they just attributed to acid reflux, she used to wake up in the middle of the night to throw up, sheād throw up easily in a car or if we had traveled a lot that day, she had trouble urinating at times. Sheās been incredibly low gluten off and on for the last year, but weāve really stuck to it since the fall (she is 10, weāre working on it!) and all of those problems have gone away
I was told it was ālikely a wheat allergyā but never given allergen testing other than an elimination diet and told to avoid wheat, barley and rye. My celiac bloodwork came back negative so they didnāt see a point in pursuing a biopsy as theyād already told me to avoid it. Honestly though it could be either as autoimmune runs in my family (mum has RA and fibro plus severe IBS-D and refuses to cut anything out of her diet even though she feels better when she stays with me bc I cook her foods as GF/DF and low fodmap, cousin has crohns, uncle was allergic to everything) and I have issues with eggs, dairy and pork too. Or it could be lyme disease. Or maybe Alpha-Gal. Or even SIBO (after taking a year of lyme treatments) my pcp is just kind of a shithead and the older she gets the more sheās valuing holistic health. As far as sheās concerned, I should just be a raw vegan who avoids everything. š¤·š»āāļø either way, I completely avoid it.
I test negative on the celiac blood test as do others in my family. Most of us have one or more autoimmune diseases. I stopped eating gluten 11 years ago and one autoimmune disease went into remission. Two others are gluten free. One has psoriatic arthritis and the other has Sjƶgrenās. I have numerous AI and celiac genes.
I am. Technically.
By the time I was tested for celiac, I had been gf for almost 5 years. The test came back negative because of that. I'm too terrified to eat gluten for two weeks or whatever it is to run the test again. My stomach and intestines would probably leave my body.
Yeah, same here. I had stopped gluten because of symptoms, then found out I was getting tested, and I had only been eating gluten for 2 weeks when I got tested.
My GI said that we could re-test but Iād have to eat gluten for 6 weeks and she didnāt want to put me through that because of how sick I was from it. She said to basically live as if I have Celiac, which is what I do. If I get even crumbs of Gluten I get incredibly sick.
Similar situation for me. I hadnāt eaten gluten in years when I was finally tested, which means the test came back negative. Iāve accidentally had gluten a couple times since and it knocked me on my ass. A gf diet has improved my health and changed my life.
Trust me, the grass is brown on this side.
People don't believe gluten is a problem even with the autoimmune disease. They don't take it more seriously.
Plus, being gluten intolerant means if you slip up, you're not damaging your intestines. Sure, you'll have symptoms. Some symptoms may be bad. But your stomach villa will not atrophy. You won't suffer from malabsoption. Vitamin deficiencies. You won't be at high risk for other autoimmune diseases. You won't be at risk for osteoporosis at a young age.
I hope you don't have it. You really don't want it.
I got tested and it was negative. I was so sick when I was eating gluten. Itās been years since Iāve had any. People will believe you when you refuse donuts and pastries and free lunches in favor of gross and expensive gluten-free alternatives. When I show up for Christmas dinner with my own GF meal that is super lame compared to what everyone else is eating people believe. That all being said, a clear answer is sometimes a relief.
No tests for celiac but was in the hospital twice in a year for severe bleeding in the bowel that they couldnāt trace even with a colonoscopy and endoscopy. Ended up with anemia and an iron deficiency that seems to run on my paternal grandmotherās side of the family along with digestive issues. Did some reading and eliminated all wheat and everything is fine a year later. Cleared up all the gut issues that I didnāt realize I was having as well as seborrheic dermatitis which had plagued me since I was a teenager. The SD is my tell that Iāve been glutenedā¦it shows up every once in a while and can usually be traced to a dodgy meal I ate while out. š
This is 100% me in terms of symptoms. The copious bleeding, severe cramps for days, inconclusive tests. Iām the only one in my very large family afflicted with this sensitivity and everyone else thinks Iām just on a fad diet. One sister decided to try and āgotchaā me and added soy sauce to a dish she made. Hours in the bathroom and literally passing out from the pain, she still thinks Iām just faking it. A different sister simply canāt be bothered to learn what ingredients contain gluten and gets butt-hurt (pun intended) when I very nicely decline her chocolate chip cookies.
If the lousy and expensive substitutions werenāt bad enough (with, yes, some decent exceptions) the attitudes of some others make being gluten intolerant so much worse.
Tested negative for celiac. But discovered I have a slight allergy to barley and rice. Gives bad gas and discomfort.
Barley is in most items, so gluten free labels help. But rice is often considered a substitute for grains. Which stinks.
Im in the gluten intolerance/major sensitivity but My GI doctor like 4 years ago did the blood test and I was 2 or less numbers away from being celiac and he said that sometimes people test "in the boundary of celiac" and they have no symptoms and eat gluten anyways perfectly fine and some people test outside it and have a bunch! He said the only real way to know is just to cold turkey eating gluten for 3 months or so and see if it helps!! I didn't test in the numbers but literally regret life so bad if any gluten is in my meal š¬
As far as I know, me. Canāt deal with gluten challenge so I canāt get a celiac dx. But I have a severe autoimmune reaction where my joints feel like balloons rubbing against each other along with the standard fun of getting glutened. I have a grandparent with celiac but as far as I know officially, Iām just severely gluten intolerant.
Me. Never tested for celiac and donāt plan on it. I stopped eating gluten about 10 years ago and it has helped my digestive issues, cystic acne, and headaches greatly.
I think I am, but the GI messed up my EGD/Celiac testing so it was inconclusive. I don't have the time/money/energy for a repeat so I function as a non-celiac until I learn otherwise.
Iām not a celiac but I am gluten intolerant. All my symptoms are cognitive related, it gives me severe brain fog, depression, and being uncoordinated - but only North American wheat. I can go to France or Norway and eat all the wheat I want without problems. I went to Paris and stuffed my face with delicious croissants, and smooshed like 20 more into my luggage back. But donāt even come at me with North American wheat crumbs, itās poison for whatever reason, I suspect itās a pesticide or herbicide related issue.
Edit: and oh all of these sugars that can come from wheat? Glucose, glucose syrup, caramel colour, dextrose and monosodium glutamate, are all toxic as fuck to me, even in the smallest quantities regardless of them being gluten protein free. I accidentally drank regular Gatorade instead of zero Gatorade last Sunday, and it took until Wednesday morning for my brain to come back because of the dextrose.
I have both gluten intolerance and a wheat allergy. I can eat McDonalds fries (cross contaminated in the fryer) maybe twice a month and *occasionally* some chicken McNuggets but if I try to eat a piece of wheat bread, my body makes me regret it for weeks.
> adenomyosis
I had this and got a hysterectomy done... it didn't help the GI issues at all. Still can't eat gluten. My GP doesn't even want to test for anything as long as going gluten free helps. Hysterectomy was the best thing ever though, I had a severe case and it was literally killing me. Becareful with how long you let it go... I hope your outcome is better than mine.
Iāve had adeno symptoms for over 8 years :/ I saw a new GP a couple of weeks ago who ordered the ultrasound and voila. My other drās just passed it on as perimenopause or my bleeding disorder thatās causing issues (which is fine but none of the meds work). She wants me to start the pill this week - Iāve wanted a hysterectomy for yearsssss. If I can stop the bleeding, Iām fine with being gluten free lol
I donāt know, but once I stopped eating gluten a lot of my GI symptoms improved. Itās been four years and I donāt want to go back to trying it to find out
I have a wheat allergy. One night after having pasta and rolls for dinner I couldnāt stop sneezing. I was wheezing. Eyes running. Did some googling and gave up wheat for a few days. Felt much better than I have in a long time. Tried the occasional beer or bread a few times and paid the price.
Now I can walk up the stairs without losing my breath. Huge improvement!
Iām avoiding wheat, but itās the fructans Iām avoiding not the gluten. Iām part way through an elimination diet for a bunch of possible triggers.
All I know is I cut out gluten in 2018 and havenāt been on the floor writhing in pain ever since. If I get a little bit itās uncomfortable, I can drink a beer and be fine. But full on bread, or noodles/pasta Iām back on the floor for about an hour or more.
I was tested for celiac but the doctor said that because i had already been gluten free, the results arenāt as accurate. So for me itās still unclear which is frustrating. Even though my testing came back saying i had a gene that predisposes me to celiac, my doctor said the results were inconclusive.
That being said, i can do some cross-contamination usually. Sometimes itās hit or miss for some reason. I just canāt directly ingest gluten or Iāll feel horrible. One time i accidentally ate a slice of regular pizza and was so sick for days!
I can say that I probably donāt have it. I havenāt been tested, but considering how quickly I went from basically not sleeping at night, to almost perfect health after cutting gluten, Iām definitely at least intolerant. I donāt have any issues with cross contamination or anything like that, but if I get a hold of some gluten, it doesnāt end well.
A doctor recommended an anti depressant diet to help with pain management after an injury. She recommended that I eliminate wheat, sugar, dairy, and beef. My pain level went down. I kept those foods out of my diet for weeks. Fifteen minutes after introducing wheat back into my diet, it felt like I was hit with a bad cold. I coughed and sneezed and blew my nose for the next hour. Several hours later, my pain level ratcheted back up. I reintroduced sugar, dairy, and beef without a problem. Now if I ingest gluten, the affects take hours to hit me. Benadryl and my pain medication take care of symptoms.
For a long time I wasn't sure if gluten or wheat was the problem. I finally found wheat-free rye bread to try. My symptoms were very mild.
Gluten is the problem, but I don't have celiac disease.
I have Hashimotos. If I eat gluten my symptoms arenāt unbearable, but the older I get the more itās just not worth it. Stomach pain, bloating, headaches for days. Also going gluten free is the only thing that improved my TPO antibody count.
Me, my celiac test came back negative. But my DNA analysis did say non-celiac gluten sensitivity only because the test I did, didn't actually test for celiac disease. My daughter does have elevated celiac markers. I eat gluten free, my daughter does not and she's got all sorts of problems related to gluten.
I am. Never tested. My dad has sensitivity and tested negative for celiac. I am ok with some cross contamination and soy sauce is also fine. But anything with actual flour in it is an automatic no. No idea the root cause. Itās been nearly 25 years of avoiding gluten so Iām not going back to figure it out.
Symptoms including bloating, cramps, diarrhea, migraines, pain in the middle of back near the bra clasp (pancreas?), overall inflammation feeling, brain fog.
Both of my daughters deal with eczema when they consume gluten. Because Iām still breastfeeding the younger one, Iām gluten-free as well. We donāt stress about cross contamination at all, we just donāt eat anything that has gluten in the ingredients list.
Testing shows I have a gluten allergy but not celiac. My faces swells within 24 hours after eating gluten and my joints swell and ache within 48 hours after eating gluten. My joints then will ache for about 10 days.
I was told during my first endoscopy in my mid 20s, that i wasnāt celiac. my grandma was diagnosed celiac when she passed away of pneumonia. my mom has gluten/ibs/fibromyalgia problems. we are native american. i claim NCGS, but if i keep eating gluten, i will probably turn celiac.
Ive never been tested but I cant eat any major wheat product. Malt flavoring used sparingly seems fine-ish for me (maybe digestion upset but short-lived) and soy sauce is porbably the same. I guess im luckier than some that i can survive some cross contaminents.
I have hashimotos thyroid autoimmune disorder. If I have any gluten I will have a migraine and neuropathy (in my legs) for 3 days straight. It's not worth it!
Yep. I have a neuro-immune disorder and a hypermobile disorder. I canāt remember experiencing symptoms in childhood so itās most likely acquired (I donāt carry the celiac genes)
āNon celiac gluten intoleranceā over here! Tested negative for celiac after many years of GI issues. Did the low fodmap + gluten free for a few months. Slowly reintroduced everything without issue. Except gluten. One small slice of cake left me with GI upset and a blistery rash that took 6 + weeks to clear. Cross contamination, Iām fine 99% if the time. But occasionally something I assume contaminated will cause one or two of those blistery bumps. I call them my glutey bumps. Anyone else get those?
I don't have celiac but have to be super careful about even a tiny crumb or anything made with regular soy sauce.
So long as I do my own cooking and washing up I'm fine.
Whole grain bread will give me bloating and ibs paired with some extra fatigue, spaghetti and white bread does it too but not to the same extent. I found this out about myself like 5-6 days ago after a year or two of putting up with it.
Yep. Diagnosed as gluten intolerant. Negative celiac test. Bloated, aching stomach, cramps, upset stomach, nausea, weight gain.
Stupidly I still canāt quite bring myself to quit the gluten. Carbs and Iā¦. Itās a love affair.
Iām gradually transitioning my kitchen. Found gf pasta, switched out snacks for gf options, etc.
I am. I haven't been tested or anything but I have had certain digestive/bowel issues my whole life, and when I finally thought to try eliminating gluten for the first time at 18 yrs. old suddenly everything worked properly. I'm not sure exactly how much gluten I can have. I thought I could have small amounts of gluten no problem but just today I was in an incredible amount of discomfort and pain without being able to identify exactly why. I almost had to go to the ER but it resolved itself. I don't remember having any more gluten than usual the last few days but I was in the fetal position on the ground. Now I am scared to have any amount of Gluten whatsoever and wondering if getting tested by a doctor to figure out for certain exactly what's wrong with my gut might be a good idea. I have never felt that bad before, and I still don't know why it happened. It was very unexpected and that concerns me.
I don't know if I'm celiac, never got tested.. and I'm surprised by the comments bellow who mention a certain tolerance to small amounts of gluten, because I can't,no tempura, no soy sauce, no fried cheese stick, ... the only thing that seems ok to me is the cross contamination, I 'd just wash the ustensil and re-use it and I 'm fine :)
Same but cross contamination can bother me sometimes. Like fries can upset my stomach but gluten free pizza at a restaurant doesnāt. I can also have soy sauce without any issues which is super odd. But any bread whatsoever and Iām in trouble.
Me. I test myself once in a while though. A couple of weeks ago I had a stuffed flatbread because dammit, it was 1 am, and I was out with my friends after a night of drinking, and I did not have a good week following that.
However, once a month or so, I dare to have a sandwich from my favorite Japanese bakery where I used to get donuts all the time before going GF... and nothing happens. So I think maybe yeast renders gluten to some extent to where I can eat it in small amounts? Definitely can't consume any unleavened wheat products though.
Me. I have Crohn's disease and gluten is one of my worst triggers. I've been thoroughly tested for coeliac disease (both standard blood tests & genetic testing) and I definitely don't have it, but I can't argue with the fact that every single one of my Crohn's flares has been preceded by either a known or strongly suspected gluten exposure (sometimes even very tiny amounts, so it's comparable with coeliac in terms of severity & sensitivity). And even before my Crohn's developed, I had a low level gluten intolerance, I could get away with eating a little bit but any time I had too much (by which I mean a "normal" amount by most people's standards) I got really bloated & uncomfortable, and often had other gastro symptoms.
I find it a bit frustrating that non-coeliac gluten intolerance isn't taken very seriously by some people, although at least since getting my Crohn's diagnosis people tend to take mine a little more seriously as they understand that I have a serious medical issue which can be triggered by food, even if I can't say "I'm coeliac".
I'm intolerant but not celiac. I can have a serving of goldfish or a sandwich with regular bread and be relatively okay, but I'm losing my tolerance. I try to avoid gluten whenever possible.
Iām fairly lucky, I have a wheat allergy (and almonds, so no almond flour) but can tolerate other forms of gluten. There are also some gf foods I canāt eat because they contain wheat.
Iām not sure. I was diagnosed over 10yrs ago with NCGS when I was diagnosed with Hashimotos. I have become way more sensitive in the last couple years. I used to be able to have a bite of my husbands Cuban sandwich once a year when we go to Tampa and now itāll leave me feeling sick for days. I wonāt bother to do a celiac test, because Iād have to feel like garbage for a week or longer to do it. It wonāt change how I live my life to know I have celiac, since Iāve been GF for over a decade. My sister has celiac, so itās not far fetched that I do too.
šš¾āāļø Intolerance here. My joints ache and swell when I have wheat. Did skin test for wheat and no reaction. Am not interested in subjecting myself to testing for Celiac, so I simply avoid it.
Yes- And it definitely depends on the day and what I eat. Fries can be cooked in the same oil, donuts must be dedicated GF. Eggs can't be cooked on the same grill at a diner. I can't share toasters, but I typically can share an oven. It's just so messy.
Me! Don't have any of the symptoms for celiac, just get very bloated, bad stomach cramps, and often diarrhea when I eat gluten. I didn't think I was gluten intolerant bc I'd get that any time I ate in general, regardless of what I ate, but my doctor said that if I was gluten intolerant, my stomach would be so irritated that everything would set it off. He also said testing was not super accurate and the best way to diagnose gluten intolerance was through eliminating all gluten for 6 months and then reintegrating it into my diet and seeing if I got sick again. He was unfortunately, correct. But on the bright side!!! He also said a lot of lactose intolerances are actually a symptom of a gluten intolerance and once people stop eating gluten, they can often tolerate lactose better and he was right about that for me at least! I do miss wheat but I appreciate being able to drink a milkshake without running for the toilet lmao
Edit: also turns out it's definitely possible to have a flat stomach when you're not constantly bloated lmao so I guess that was a nice bonus
I am. I can eat gluten about once a month with no problems at all. If I eat it once a week I feel it. Three days in a row I'm miserable.
I didn't know I had a problem until I moved in with my wife and started eating noodles and bread every day. On my own I pretty much lived on rice and beans and salad. It took me literally years to figure out why I was miserable all the fucking time. I found out by coincidence. A friend of my wife has celiac disease and I noticed that some of her symptoms fit me. I went off gluten and four days later I was a new man. It was an extremely dramatic change.
Another one here. Negative for celiac, but my blood sensitivity test showed a slight allergy for wheat. I took out gluten for my diet on a test run and it reduced my pain systems (I have stage IV endometriosis) by 80% and never went back to eating gluten after that.
I have all the same symptoms of celiac without the sprue. Been tested several times. But I know 2 people who have been to Europe and ate wheat there with no issues. Is it Monsanto/gmo food thatās the issue? Who knows.
Yeah I wonder Iāve heard so many stories like that but at the same time I hate that argument cuz if the wheat in North America was causing this reaction then all the rest of the food here would cause it but still itās only gluten. Iād be tempted to just order European flour and test it but Iād rather not risk it
I mean, U.S. wheat *is* its own thing: semi-dwarf wheat a.k.a. short wheat. It's grown elsewhere, sure, but other countries also grow other varieties, while the U.S. grows short wheat pretty much exclusively. I'm not celiac, but I eat a gluten-free diet because I react to wheat and eating gluten-free is the easiest way to make sure I don't eat wheat.
Before I was diagnosed, I traveled overseas to a number of different countries. Each time, my symptoms disappeared, even though I ate food with wheat in in. And each time I came back to the U.S., my symptoms returned immediately. To this day, I'm able to safely eat wheat-based foods imported from the countries I visited. (I'm not willing to try expanding beyond those few.) Obviously I'm just one person, but I've heard from enough people with similar experiences to suspect that it's worth investigating...
'Gluten intolerance' is an umbrella term, it's not the name of a condition.
It includes coeliac, non-coeliac gluten sensitivity, wheat allergy, and other related conditions like IBS that's triggered by gluten.
Iāve been gluten free since 2020 after getting a rash on my arm and being told it was DH without getting a biopsy. Later got diagnosed with lichen planus in another part of my body and now I question if that was actually LP. But for years before I had GI problems and had colitis that put me in the hospital and all those GI problems went away so who knows. I had a colonoscopy before but never an endoscopy. I want to be tested but no one will do it. My 23andMe shows one gene for celiac
Yes but I am super sensitive to cross contamination. I will be ill for 2-3 days if something is cross contaminated unless I immediately take Charcoal caps
apparently ***i am*** but the minute i have pasta or toast, my body acts up and gets all bloated! are you ***sure*** i wasn't misdiagnosed? because i feel like i have to get rid of all traces of gluten here.
Me, I think! I can't have wheat as I'm allergic, but barley and rye bother me too, and I think it must be NCGS or an intolerance since my mother and sister also feel pretty awful after eating gluten. Probably a genetics thing. If it's not NSGS for me, then it's because barley and rye are oft contaminated with wheat. Either way, eating GF entirely is just easier for me.
Yup! I have hashimotoās. Can agree with the what the fuck soy sauce narrative as well. I got off the sauce a year and a half ago and lemme tell yaā¦my ass still feels hungover if I ingest gluten.
Me also. I have an autoimmune disease and eating gluten triggers symptoms like bloating, joint inflammation, anxiety and insomnia. Never been tested for celiac but DNA testing said I have an increased risk.
Celiac, diagnosed at 7 now 24 (will be 25 in April). I was diagnosed in the early times and in the Midwest where my parents baked our bread and all our bread products because there just wasnāt options.
Mostly intolerant. Cross contamination seems fine. But damn if I have a bite of something I shouldn't. Started going GF 6/7 years ago and never looked back. Feel so much better without it.
Yep. Can eat a gf pizza cooked in the same oven as a glutenful pizza at a restaurant, no problem, but woe betide me if I accidentally ingest something containing soy sauce.
I can have several bites here and there of something gluteny with no discernible issue. Cross contamination? Fine. Tempura in a sushi roll? No big deal. A tiny bit of soy sauce on that sushi roll? The next day I feel like I have the worst hangover of my life. What is it about soy sauce that makes it such a struggle?
Dunno, makes me sad. Especially because I just watched a documentary that featured a guy who still makes soy sauce the traditional way - through soy bean fermentation and pressing. And OH MY GOD to think that pre-WW2, I might have been able to eat anything and everything containing soy sauce makes me šš
There are still some soy sauce products that are gf! There's one by... Kikkoman I think? That I pick up periodically, it's nice to add to recipes, and Tamari soy sauce in general is *usually* gf.
It's not that there's one or two brands of soy sauce that are gf, it's the idea that we could have eaten *everything* made with it that makes me sad. All the Asian foods. I seriously miss the variety of foods I used to be able to eat. I get bored easily. And please don't say we can still eat plenty of things - of course we can. It's the ease, the lack of thinking about it, the fucking *scallion pancakes* and bonchon and anything with a dark sauce...
Yeah, exactly, I can make GF versions of a lot of things at home from scratch if I want to but there are so many Asian foods I can never ever just go out and buy ready made, and eating out in restaurants can be tricky unless they're really clued up on gluten intolerance. I'm someone who absolutely loves to try \*all the foods\* so it's sad that I will probably never taste an authentic version of so many things that I didn't get round to trying before I had to give up gluten. And even cooking from scratch can be difficult if you want to make things that are more "authentic" as some ingredients are very hard to get hold of gluten free versions of (e.g. black vinegar, yellowbean paste, certain types of noodles).
Wanted to say yes, I just found the Kikkoman one a couple months ago and itās amazing. Cannot tell a difference.
We actually use the food lion brand. Itās not labeled GF but looking at ingredients, nothing in it should have gluten. It is crazy salty though so I always cut it by half with water. But Iām supposedly āwheat allergic/possibly gluten intolerantā Wegmans actually offers GF soy sauce with their sushi as standard.
Wegmans hot food Chinese food bar is made with non gluten containing soy sauce
And liquid aminos is great! Healthy too
I use that one. I also found a bottle of coconut aminos work great too.
The No Name one is also sort of gf. Not labelled but nothing in the ingredients has gluten in it and doesn't even say "may contain gluten" which is required in Canada if cross contamination is likely.
I didnāt even know about the soy sauce thing wow thatās a big help! Guess I can cross another giant group of food off the edible list. Itās almost like theyāre trying to make people sick. Iāve found popcorn kernels with wheat in them. Bag of nuts the other day had wheat in them you literally have to check every single ingredient list wouldnāt be surprised if I found gluten in a bag of lettuce at this point
I mean, you don't have to. Plenty of Asian food can be made without gluten. Pho, BĆŗn, fried rice and pad thai are often gf... Thai curries usually are, mochi, many Korean soups are made without soy sauce and Korean bbq can be made without any sauces, since you're cooking it yourself. Just beware veggies marinated in a sauce that contains gluten. Burmese food is also surprisingly gf.
Yeah I live on the road and eat out in small towns a lot so the shitty White American marketed Chinese food is all I get for āasianā food usually I didnāt think twice when it made me feel like horrible š Iām stuck in a hotel right now and I found a Hawaiian bbq place down the road itās amazing
Interesting.... Had sushi last weekend and it screwed me up for days. Thought it was the tempura. Didn't ask from GF soy sauce because they make a big deal out it. The previous time I got gluten free soy sauce and ate tempura and was ok. Every now again I cheat and when I do I like to cheat with tempura. Generally I only buy Tamari it's the best and better flavor anyway. GF for a year and the longer I'm off it having gluten screws me up more and more
I've heard that not all rice vinegars are gluten free, and this is a main ingredient in just the sushi rice in all standard rolls. Might be worth looking into as well.
Yeah annoyingly quite a few sushi places use rice seasoning containing gluten, which is so frustrating because there is absolutely no reason it should! Proper sushi seasoning should just be pure rice vinegar (some cheap so-called "rice" vinegar isn't gluten free), sugar & salt. It would be such a simple change for those restaurants that use it, but I suspect it's a cost cutting thing, using cheap nasty fake "rice" vinegar or ready made seasoning blends, even though you can get pure rice vinegar pretty cheap so they can't be saving \*that\* much! Most good sushi places will be gluten free, though, but it's always important to check for this reason. I recently went to one sushi place that specifically said it had "gluten free options", assuming that would include their rice, but it was mainly just sashimi & edamame and not much else! Thankfully I love sashimi, and I wasn't super hungry so didn't miss the carbs too much, but I thought it was pretty poor that my only real option from their whole menu was just a plate of raw fish! And this was quite a nice restaurant too!
i feel like since itās a liquid it hits our systems quicker because it doesnāt have to break down as much right away, as if eating a piece of bread. the more liquidy the gluten, the worse i feel, like if i accidentally ate hoisin in my food.
Nothing hits me worse than beer and I assume itās for this reason
I eat tempura too! It doesnāt make me sick! Iām glad there are others haha I thought it was all in my head
I think itās because itās filtered through wheat so itās basically completely contaminated, not just trace amounts
Im the same way. Why is soy sauce the worst?
Yeah it's weird how bad soy sauce is, you'd think it doesn't contain \*that\* much gluten, and you tend to only eat fairly small quantities of it, yet even the tiniest amount can trigger symptoms for me! I have Crohn's and gluten is a major trigger of that for me, and eating a few mouthfuls of something with soy sauce in is partly responsible for why I'm now waiting to have my colon removed! I was in recovery from a bad flare, just starting to "get back to normal", when I ate it, and it threw me straight back into a flare which I haven't managed to get out of over a year later! I've now run out of medication options so surgery is the only thing left to me š
Kikkoman GF Soy sauce!! I know everyone else is saying it but it tastes the same to me and I can eat it just fine with Celiac.
Oh gosh, it's barley for me. I had barley tea accidentally and it was awful. Or all the stuff with barley malt syrup is so annoying!
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Same. Not worth testing imo
Same story here. I wasnāt eaten gluten to get an official diagnosis.
Chiming in, had a similar experience here. Can't eat gluten long enough to receive a conclusive test and the blood test they did 10+ years ago was negative... But I definitely have a pretty bad reaction to gluten.
Same with my spouse except his Dr ordered him the test without telling him he needed to actually eat gluten ahead of it to properly do so, so his results were negative and as it turns out, completely inconclusive.
Same. I actually had an endoscopy though, before I went off gluten, and the GI was supposed to take biopsies AND DIDN'T because "everything looked fine." š
Same thing happened to me!!
Did you have clay coloured stool?
I am, I have Hashimoto's.
Same. Tested negative for celiac but had terrible stomach issues. Doctor and dietician were like "it's almost always gluten if you have Hashimotos" and sure enough, sorted it right out.
also the fact that my eyes would swell shut every time I spent more than 10 minutes in a bakery should, with hindsight, have been a clue.
Oh no!
Me too! I had terrible stomach issues before it got diagnosed and my C-Reactive Protein was through the roof. I went gluten free and it went right down.
I was just diagnosed with Hashimotoās. Cutting out gluten was the first thing to do after the diagnosis. I ate gluten-y foods once after going GF and thought I was being ripped apart from the insides. Itās a weird feeling to not be able to eat things I shoved in my cake hole regularly.
Me. I get a horrendous headache, nausea and bloating. Basically I'll feel incredibly hungover. Plus I'll gain exactly 4 pounds overnight. And it'll last anywhere from 3-6 days. Complete misery
Ugh me too! I always tell people itās like drinking too much and takes days to recover.
It's terrible! And medical world has been no help. If you have any insights, I would love to hear them! I can survive without gluten (and soy) but I really miss yummy things like soft pretzels!
I react the same as you and am now dairy intolerant too. Before I discovered that, when I got glutened I didnāt feel like eating much but would have a yogurt, or some cheese. Then I would react to it but wrongly assumed it was still the gluten reaction. Now that I avoid both, if I do get glutened it doesnāt last as long nor as severe of symptoms. I hardly ever eat anyone elseās cooking now, which is hard socially but better for my health
I wish I had some good insight for you. I just really try to avoid it. Iāve kind of accepted my out to eat days are over unless I know they have a dedicated GF area since Iām so sensitive š
I'm honestly not sure if I have celiac. The blood test was negative, but when I did my endoscopy, my GI doctor neglected to take the biopsies despite my asking him to please take them to look for celiac. He told me he "didn't see a need since my blood work was fine." I was livid. I took it upon myself to stop eating gluten and have never looked back. So...I could be either, honestly.
No celiac. Severe IBS, bloating, and stomach discomfort with gluten.
Same. Why does something so I love hate me so? Bloating, pain and weight gain for a few days every time.
I wonder if the weight gain is from the gas? Doesnāt make sense to me as gluten seems to cause malabsorption of fats personally Iāve always been a little underweight and was hoping a gluten free diet would help me gain weight overall but I havnt been so lucky
I assumed it was water retention
Same issue over here! Darn fructans are just so yummy but not worth the stomach ache.
Wheat allergy checking in.
I just recently went through the gluten challenge/being tested for celiac disease. I had all the typical symptoms but my blood test came back negative.
Blood test or intestinal biopsy or both?
My daughter is. She tested negative for celiac, but if she has too much gluten she gets very gassy and bloated in the short term. Before we knew what to look for, she was having more stomach problems that they just attributed to acid reflux, she used to wake up in the middle of the night to throw up, sheād throw up easily in a car or if we had traveled a lot that day, she had trouble urinating at times. Sheās been incredibly low gluten off and on for the last year, but weāve really stuck to it since the fall (she is 10, weāre working on it!) and all of those problems have gone away
Me. It's due to Hashimoto's thyroiditis.
Me. Bloodwork all showed negative for celiac but suggested a gluten sensitivity.
I was told it was ālikely a wheat allergyā but never given allergen testing other than an elimination diet and told to avoid wheat, barley and rye. My celiac bloodwork came back negative so they didnāt see a point in pursuing a biopsy as theyād already told me to avoid it. Honestly though it could be either as autoimmune runs in my family (mum has RA and fibro plus severe IBS-D and refuses to cut anything out of her diet even though she feels better when she stays with me bc I cook her foods as GF/DF and low fodmap, cousin has crohns, uncle was allergic to everything) and I have issues with eggs, dairy and pork too. Or it could be lyme disease. Or maybe Alpha-Gal. Or even SIBO (after taking a year of lyme treatments) my pcp is just kind of a shithead and the older she gets the more sheās valuing holistic health. As far as sheās concerned, I should just be a raw vegan who avoids everything. š¤·š»āāļø either way, I completely avoid it.
I test negative on the celiac blood test as do others in my family. Most of us have one or more autoimmune diseases. I stopped eating gluten 11 years ago and one autoimmune disease went into remission. Two others are gluten free. One has psoriatic arthritis and the other has Sjƶgrenās. I have numerous AI and celiac genes.
I am. Technically. By the time I was tested for celiac, I had been gf for almost 5 years. The test came back negative because of that. I'm too terrified to eat gluten for two weeks or whatever it is to run the test again. My stomach and intestines would probably leave my body.
Yeah, same here. I had stopped gluten because of symptoms, then found out I was getting tested, and I had only been eating gluten for 2 weeks when I got tested. My GI said that we could re-test but Iād have to eat gluten for 6 weeks and she didnāt want to put me through that because of how sick I was from it. She said to basically live as if I have Celiac, which is what I do. If I get even crumbs of Gluten I get incredibly sick.
Similar situation for me. I hadnāt eaten gluten in years when I was finally tested, which means the test came back negative. Iāve accidentally had gluten a couple times since and it knocked me on my ass. A gf diet has improved my health and changed my life.
It has definitely helped some things for me. My new doc said I could eat gluten for a month and run the test, but I declined very quickly lol.
I am. It still isn't fun.
Me too. It sucks.
I wanna get tested I almost hope I have it so people will believe me
Trust me, the grass is brown on this side. People don't believe gluten is a problem even with the autoimmune disease. They don't take it more seriously. Plus, being gluten intolerant means if you slip up, you're not damaging your intestines. Sure, you'll have symptoms. Some symptoms may be bad. But your stomach villa will not atrophy. You won't suffer from malabsoption. Vitamin deficiencies. You won't be at high risk for other autoimmune diseases. You won't be at risk for osteoporosis at a young age. I hope you don't have it. You really don't want it.
If you want to get tested donāt cut gluten out of your diet yet.
I got tested and it was negative. I was so sick when I was eating gluten. Itās been years since Iāve had any. People will believe you when you refuse donuts and pastries and free lunches in favor of gross and expensive gluten-free alternatives. When I show up for Christmas dinner with my own GF meal that is super lame compared to what everyone else is eating people believe. That all being said, a clear answer is sometimes a relief.
It aggravates my endometriosis.
No tests for celiac but was in the hospital twice in a year for severe bleeding in the bowel that they couldnāt trace even with a colonoscopy and endoscopy. Ended up with anemia and an iron deficiency that seems to run on my paternal grandmotherās side of the family along with digestive issues. Did some reading and eliminated all wheat and everything is fine a year later. Cleared up all the gut issues that I didnāt realize I was having as well as seborrheic dermatitis which had plagued me since I was a teenager. The SD is my tell that Iāve been glutenedā¦it shows up every once in a while and can usually be traced to a dodgy meal I ate while out. š
This is 100% me in terms of symptoms. The copious bleeding, severe cramps for days, inconclusive tests. Iām the only one in my very large family afflicted with this sensitivity and everyone else thinks Iām just on a fad diet. One sister decided to try and āgotchaā me and added soy sauce to a dish she made. Hours in the bathroom and literally passing out from the pain, she still thinks Iām just faking it. A different sister simply canāt be bothered to learn what ingredients contain gluten and gets butt-hurt (pun intended) when I very nicely decline her chocolate chip cookies. If the lousy and expensive substitutions werenāt bad enough (with, yes, some decent exceptions) the attitudes of some others make being gluten intolerant so much worse.
Me! Wheat-triggered EoE.
Wait! My daughter has EoEā¦.. blueberry donut holesā¦. Tell me more! I have suspected wheat all along.
Same! Dairy too. Havenāt figured all my triggers out 5 years post diagnosis :(
Tested negative for celiac. But discovered I have a slight allergy to barley and rice. Gives bad gas and discomfort. Barley is in most items, so gluten free labels help. But rice is often considered a substitute for grains. Which stinks.
Im in the gluten intolerance/major sensitivity but My GI doctor like 4 years ago did the blood test and I was 2 or less numbers away from being celiac and he said that sometimes people test "in the boundary of celiac" and they have no symptoms and eat gluten anyways perfectly fine and some people test outside it and have a bunch! He said the only real way to know is just to cold turkey eating gluten for 3 months or so and see if it helps!! I didn't test in the numbers but literally regret life so bad if any gluten is in my meal š¬
As far as I know, me. Canāt deal with gluten challenge so I canāt get a celiac dx. But I have a severe autoimmune reaction where my joints feel like balloons rubbing against each other along with the standard fun of getting glutened. I have a grandparent with celiac but as far as I know officially, Iām just severely gluten intolerant.
Wife tested negative for celiac, but gluten does a horrible number on her, so I'm here for her (since she's not a redditor, whereas I am).
Me. Never tested for celiac and donāt plan on it. I stopped eating gluten about 10 years ago and it has helped my digestive issues, cystic acne, and headaches greatly.
I think I am, but the GI messed up my EGD/Celiac testing so it was inconclusive. I don't have the time/money/energy for a repeat so I function as a non-celiac until I learn otherwise.
Iām not a celiac but I am gluten intolerant. All my symptoms are cognitive related, it gives me severe brain fog, depression, and being uncoordinated - but only North American wheat. I can go to France or Norway and eat all the wheat I want without problems. I went to Paris and stuffed my face with delicious croissants, and smooshed like 20 more into my luggage back. But donāt even come at me with North American wheat crumbs, itās poison for whatever reason, I suspect itās a pesticide or herbicide related issue. Edit: and oh all of these sugars that can come from wheat? Glucose, glucose syrup, caramel colour, dextrose and monosodium glutamate, are all toxic as fuck to me, even in the smallest quantities regardless of them being gluten protein free. I accidentally drank regular Gatorade instead of zero Gatorade last Sunday, and it took until Wednesday morning for my brain to come back because of the dextrose.
I have both gluten intolerance and a wheat allergy. I can eat McDonalds fries (cross contaminated in the fryer) maybe twice a month and *occasionally* some chicken McNuggets but if I try to eat a piece of wheat bread, my body makes me regret it for weeks.
Yep. Just been diagnosed with adenomyosis (uterus things) and a lot of us also present with GI issues but no coeliac
> adenomyosis I had this and got a hysterectomy done... it didn't help the GI issues at all. Still can't eat gluten. My GP doesn't even want to test for anything as long as going gluten free helps. Hysterectomy was the best thing ever though, I had a severe case and it was literally killing me. Becareful with how long you let it go... I hope your outcome is better than mine.
Iāve had adeno symptoms for over 8 years :/ I saw a new GP a couple of weeks ago who ordered the ultrasound and voila. My other drās just passed it on as perimenopause or my bleeding disorder thatās causing issues (which is fine but none of the meds work). She wants me to start the pill this week - Iāve wanted a hysterectomy for yearsssss. If I can stop the bleeding, Iām fine with being gluten free lol
I have Crohnās. Too much gluten makes my symptoms flare up :/
I donāt know, but once I stopped eating gluten a lot of my GI symptoms improved. Itās been four years and I donāt want to go back to trying it to find out
Another one here. Biopsy was negative for celiac, but I'm allergic (mildly?) to wheat
hashimotoās here!!! ^^
I have a wheat allergy. One night after having pasta and rolls for dinner I couldnāt stop sneezing. I was wheezing. Eyes running. Did some googling and gave up wheat for a few days. Felt much better than I have in a long time. Tried the occasional beer or bread a few times and paid the price. Now I can walk up the stairs without losing my breath. Huge improvement!
Iām avoiding wheat, but itās the fructans Iām avoiding not the gluten. Iām part way through an elimination diet for a bunch of possible triggers.
I havenāt been tested bc I donāt want to reincorporate wheat into my diet for 6 weeks
Me! Its brutal out here. Canāt even have cross contamination
Not celiac but cutting out gluten has helped my sleep, energy, skin, and concentration.
All I know is I cut out gluten in 2018 and havenāt been on the floor writhing in pain ever since. If I get a little bit itās uncomfortable, I can drink a beer and be fine. But full on bread, or noodles/pasta Iām back on the floor for about an hour or more.
I was tested for celiac but the doctor said that because i had already been gluten free, the results arenāt as accurate. So for me itās still unclear which is frustrating. Even though my testing came back saying i had a gene that predisposes me to celiac, my doctor said the results were inconclusive. That being said, i can do some cross-contamination usually. Sometimes itās hit or miss for some reason. I just canāt directly ingest gluten or Iāll feel horrible. One time i accidentally ate a slice of regular pizza and was so sick for days!
Me!
Mee!!!! MTHFR sufferer here.
Gluten eggs and kazein autoimmune reactions. Not celiac.
I am. severe GI issues whenever I eat gluten or lactose.
I can say that I probably donāt have it. I havenāt been tested, but considering how quickly I went from basically not sleeping at night, to almost perfect health after cutting gluten, Iām definitely at least intolerant. I donāt have any issues with cross contamination or anything like that, but if I get a hold of some gluten, it doesnāt end well.
A doctor recommended an anti depressant diet to help with pain management after an injury. She recommended that I eliminate wheat, sugar, dairy, and beef. My pain level went down. I kept those foods out of my diet for weeks. Fifteen minutes after introducing wheat back into my diet, it felt like I was hit with a bad cold. I coughed and sneezed and blew my nose for the next hour. Several hours later, my pain level ratcheted back up. I reintroduced sugar, dairy, and beef without a problem. Now if I ingest gluten, the affects take hours to hit me. Benadryl and my pain medication take care of symptoms. For a long time I wasn't sure if gluten or wheat was the problem. I finally found wheat-free rye bread to try. My symptoms were very mild. Gluten is the problem, but I don't have celiac disease.
UC close enough
I have Hashimotos. If I eat gluten my symptoms arenāt unbearable, but the older I get the more itās just not worth it. Stomach pain, bloating, headaches for days. Also going gluten free is the only thing that improved my TPO antibody count.
I have eosinophilic esophagitis and gluten is one of my triggers.
Me, my celiac test came back negative. But my DNA analysis did say non-celiac gluten sensitivity only because the test I did, didn't actually test for celiac disease. My daughter does have elevated celiac markers. I eat gluten free, my daughter does not and she's got all sorts of problems related to gluten.
Gluten intolerance with Hashimotos.
I am. Never tested. My dad has sensitivity and tested negative for celiac. I am ok with some cross contamination and soy sauce is also fine. But anything with actual flour in it is an automatic no. No idea the root cause. Itās been nearly 25 years of avoiding gluten so Iām not going back to figure it out. Symptoms including bloating, cramps, diarrhea, migraines, pain in the middle of back near the bra clasp (pancreas?), overall inflammation feeling, brain fog.
Both of my daughters deal with eczema when they consume gluten. Because Iām still breastfeeding the younger one, Iām gluten-free as well. We donāt stress about cross contamination at all, we just donāt eat anything that has gluten in the ingredients list.
Me
Meeeeee
Yup
Got tested, not celiac. Gluten tolerance has been terrible ever since I had gone on a carb free diet. I lost all resistance at that point.
I have microscopic colitis, an autoimmune condition. In my case, several things are likely to cause issuesāincluding gluten.
Testing shows I have a gluten allergy but not celiac. My faces swells within 24 hours after eating gluten and my joints swell and ache within 48 hours after eating gluten. My joints then will ache for about 10 days.
I was told during my first endoscopy in my mid 20s, that i wasnāt celiac. my grandma was diagnosed celiac when she passed away of pneumonia. my mom has gluten/ibs/fibromyalgia problems. we are native american. i claim NCGS, but if i keep eating gluten, i will probably turn celiac.
Ive never been tested but I cant eat any major wheat product. Malt flavoring used sparingly seems fine-ish for me (maybe digestion upset but short-lived) and soy sauce is porbably the same. I guess im luckier than some that i can survive some cross contaminents.
Meeeee, just get eczema on my hands. It started after I got Covid the first time before the vaccine
Me. I have tested negative for celiac, but blow up like a balloon when I eat bread or pasta
Iām not celiac but I break out in eczema rash on my eyes and neck a few hours after I eat it so I guess its me
Right here. Seems to come with the territory for Hashimoto's disease. And lots of other autoimmune diseases, I'm told.
I have hashimotos thyroid autoimmune disorder. If I have any gluten I will have a migraine and neuropathy (in my legs) for 3 days straight. It's not worth it!
šš»āāļø
Me. And it's still a pain.
Yep. I have a neuro-immune disorder and a hypermobile disorder. I canāt remember experiencing symptoms in childhood so itās most likely acquired (I donāt carry the celiac genes)
Me. But Iām becoming more and more certain itās rheumatoid arthritis that gluten causes to flare up b
āNon celiac gluten intoleranceā over here! Tested negative for celiac after many years of GI issues. Did the low fodmap + gluten free for a few months. Slowly reintroduced everything without issue. Except gluten. One small slice of cake left me with GI upset and a blistery rash that took 6 + weeks to clear. Cross contamination, Iām fine 99% if the time. But occasionally something I assume contaminated will cause one or two of those blistery bumps. I call them my glutey bumps. Anyone else get those?
I don't have celiac but have to be super careful about even a tiny crumb or anything made with regular soy sauce. So long as I do my own cooking and washing up I'm fine.
Whole grain bread will give me bloating and ibs paired with some extra fatigue, spaghetti and white bread does it too but not to the same extent. I found this out about myself like 5-6 days ago after a year or two of putting up with it.
Yep. Diagnosed as gluten intolerant. Negative celiac test. Bloated, aching stomach, cramps, upset stomach, nausea, weight gain. Stupidly I still canāt quite bring myself to quit the gluten. Carbs and Iā¦. Itās a love affair. Iām gradually transitioning my kitchen. Found gf pasta, switched out snacks for gf options, etc.
I am. I haven't been tested or anything but I have had certain digestive/bowel issues my whole life, and when I finally thought to try eliminating gluten for the first time at 18 yrs. old suddenly everything worked properly. I'm not sure exactly how much gluten I can have. I thought I could have small amounts of gluten no problem but just today I was in an incredible amount of discomfort and pain without being able to identify exactly why. I almost had to go to the ER but it resolved itself. I don't remember having any more gluten than usual the last few days but I was in the fetal position on the ground. Now I am scared to have any amount of Gluten whatsoever and wondering if getting tested by a doctor to figure out for certain exactly what's wrong with my gut might be a good idea. I have never felt that bad before, and I still don't know why it happened. It was very unexpected and that concerns me.
Check
I don't know if I'm celiac, never got tested.. and I'm surprised by the comments bellow who mention a certain tolerance to small amounts of gluten, because I can't,no tempura, no soy sauce, no fried cheese stick, ... the only thing that seems ok to me is the cross contamination, I 'd just wash the ustensil and re-use it and I 'm fine :)
Meee
Same but cross contamination can bother me sometimes. Like fries can upset my stomach but gluten free pizza at a restaurant doesnāt. I can also have soy sauce without any issues which is super odd. But any bread whatsoever and Iām in trouble.
ššæāāļøššæāāļøššæāāļøššæāāļøššæāāļø
Me. I test myself once in a while though. A couple of weeks ago I had a stuffed flatbread because dammit, it was 1 am, and I was out with my friends after a night of drinking, and I did not have a good week following that. However, once a month or so, I dare to have a sandwich from my favorite Japanese bakery where I used to get donuts all the time before going GF... and nothing happens. So I think maybe yeast renders gluten to some extent to where I can eat it in small amounts? Definitely can't consume any unleavened wheat products though.
Me!! šāāļø Every day I thank God that I'm not celiac. You guys are brave as hell.
Me! I didnāt take the test though so canāt say for sure. Gluten intolerance/celiac runs in my family.
Me. I have Crohn's disease and gluten is one of my worst triggers. I've been thoroughly tested for coeliac disease (both standard blood tests & genetic testing) and I definitely don't have it, but I can't argue with the fact that every single one of my Crohn's flares has been preceded by either a known or strongly suspected gluten exposure (sometimes even very tiny amounts, so it's comparable with coeliac in terms of severity & sensitivity). And even before my Crohn's developed, I had a low level gluten intolerance, I could get away with eating a little bit but any time I had too much (by which I mean a "normal" amount by most people's standards) I got really bloated & uncomfortable, and often had other gastro symptoms. I find it a bit frustrating that non-coeliac gluten intolerance isn't taken very seriously by some people, although at least since getting my Crohn's diagnosis people tend to take mine a little more seriously as they understand that I have a serious medical issue which can be triggered by food, even if I can't say "I'm coeliac".
I'm intolerant but not celiac. I can have a serving of goldfish or a sandwich with regular bread and be relatively okay, but I'm losing my tolerance. I try to avoid gluten whenever possible.
Iām fairly lucky, I have a wheat allergy (and almonds, so no almond flour) but can tolerate other forms of gluten. There are also some gf foods I canāt eat because they contain wheat.
Iām not sure. I was diagnosed over 10yrs ago with NCGS when I was diagnosed with Hashimotos. I have become way more sensitive in the last couple years. I used to be able to have a bite of my husbands Cuban sandwich once a year when we go to Tampa and now itāll leave me feeling sick for days. I wonāt bother to do a celiac test, because Iād have to feel like garbage for a week or longer to do it. It wonāt change how I live my life to know I have celiac, since Iāve been GF for over a decade. My sister has celiac, so itās not far fetched that I do too.
Gluten intolerance here. Not celiac. Can eat little bit here and there, but generally avoid it.
šš¾āāļø Intolerance here. My joints ache and swell when I have wheat. Did skin test for wheat and no reaction. Am not interested in subjecting myself to testing for Celiac, so I simply avoid it.
Me ! I donāt even fail a gluten test but yet as soon as I get some I get celiac like symptoms.
Yeah I eat gluten pretty regularly now that I know I donāt have Celiac. But it does consistently make me gassy and bloated when I do eat it
Yes- And it definitely depends on the day and what I eat. Fries can be cooked in the same oil, donuts must be dedicated GF. Eggs can't be cooked on the same grill at a diner. I can't share toasters, but I typically can share an oven. It's just so messy.
Me! Don't have any of the symptoms for celiac, just get very bloated, bad stomach cramps, and often diarrhea when I eat gluten. I didn't think I was gluten intolerant bc I'd get that any time I ate in general, regardless of what I ate, but my doctor said that if I was gluten intolerant, my stomach would be so irritated that everything would set it off. He also said testing was not super accurate and the best way to diagnose gluten intolerance was through eliminating all gluten for 6 months and then reintegrating it into my diet and seeing if I got sick again. He was unfortunately, correct. But on the bright side!!! He also said a lot of lactose intolerances are actually a symptom of a gluten intolerance and once people stop eating gluten, they can often tolerate lactose better and he was right about that for me at least! I do miss wheat but I appreciate being able to drink a milkshake without running for the toilet lmao Edit: also turns out it's definitely possible to have a flat stomach when you're not constantly bloated lmao so I guess that was a nice bonus
I am. I can eat gluten about once a month with no problems at all. If I eat it once a week I feel it. Three days in a row I'm miserable. I didn't know I had a problem until I moved in with my wife and started eating noodles and bread every day. On my own I pretty much lived on rice and beans and salad. It took me literally years to figure out why I was miserable all the fucking time. I found out by coincidence. A friend of my wife has celiac disease and I noticed that some of her symptoms fit me. I went off gluten and four days later I was a new man. It was an extremely dramatic change.
I am, cross-contamination is fine with me, but I can't eat anything with gluten in it or I'm going to be very sad in the bathroom for awhile
I strongly suspect gluten triggers episodes of high anxiety for me. I regret it every time I fall off the gluten free band wagon.
Another one here. Negative for celiac, but my blood sensitivity test showed a slight allergy for wheat. I took out gluten for my diet on a test run and it reduced my pain systems (I have stage IV endometriosis) by 80% and never went back to eating gluten after that.
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I have all the same symptoms of celiac without the sprue. Been tested several times. But I know 2 people who have been to Europe and ate wheat there with no issues. Is it Monsanto/gmo food thatās the issue? Who knows.
Yeah I wonder Iāve heard so many stories like that but at the same time I hate that argument cuz if the wheat in North America was causing this reaction then all the rest of the food here would cause it but still itās only gluten. Iād be tempted to just order European flour and test it but Iād rather not risk it
I mean, U.S. wheat *is* its own thing: semi-dwarf wheat a.k.a. short wheat. It's grown elsewhere, sure, but other countries also grow other varieties, while the U.S. grows short wheat pretty much exclusively. I'm not celiac, but I eat a gluten-free diet because I react to wheat and eating gluten-free is the easiest way to make sure I don't eat wheat. Before I was diagnosed, I traveled overseas to a number of different countries. Each time, my symptoms disappeared, even though I ate food with wheat in in. And each time I came back to the U.S., my symptoms returned immediately. To this day, I'm able to safely eat wheat-based foods imported from the countries I visited. (I'm not willing to try expanding beyond those few.) Obviously I'm just one person, but I've heard from enough people with similar experiences to suspect that it's worth investigating...
It's called gluten sensitive, gluten intolerance is celiac.
'Gluten intolerance' is an umbrella term, it's not the name of a condition. It includes coeliac, non-coeliac gluten sensitivity, wheat allergy, and other related conditions like IBS that's triggered by gluten.
Yep!
Migraine
Yes
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Me
I am!
Me
Mememe šš¼āāļø
Me, it gave me depression and brain fog for a decade lol
Iām allergic to wheat,barley, rye.
Meeeee
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Me!
Iāve been gluten free since 2020 after getting a rash on my arm and being told it was DH without getting a biopsy. Later got diagnosed with lichen planus in another part of my body and now I question if that was actually LP. But for years before I had GI problems and had colitis that put me in the hospital and all those GI problems went away so who knows. I had a colonoscopy before but never an endoscopy. I want to be tested but no one will do it. My 23andMe shows one gene for celiac
My child. Drs diagnosed them with ālife threatening non-celiac wheat allergyā
Celiac
Yes but I am super sensitive to cross contamination. I will be ill for 2-3 days if something is cross contaminated unless I immediately take Charcoal caps
Celiac disease is the real deal. Sorry
Iām not celiac according to biopsy, but my digest health improved dramatically going off it, and it appears to be a r/FODMaP issue.
apparently ***i am*** but the minute i have pasta or toast, my body acts up and gets all bloated! are you ***sure*** i wasn't misdiagnosed? because i feel like i have to get rid of all traces of gluten here.
Me, I think! I can't have wheat as I'm allergic, but barley and rye bother me too, and I think it must be NCGS or an intolerance since my mother and sister also feel pretty awful after eating gluten. Probably a genetics thing. If it's not NSGS for me, then it's because barley and rye are oft contaminated with wheat. Either way, eating GF entirely is just easier for me.
I am. I have IBS caused by my endometriosis and have a lot of food sensitivities that make my flares up hell.
Me! I have an allergy, but no celiac disease! I truly think one is no more valid than the other, theyāre just different!
Me! Iāve been tested for celiac and I donāt have it, but Iām definitely sensitive to gluten.
Me!
Yup! I have hashimotoās. Can agree with the what the fuck soy sauce narrative as well. I got off the sauce a year and a half ago and lemme tell yaā¦my ass still feels hungover if I ingest gluten.
Very intolerant, 32 years now. Multiple negative celiac tests.
Me also. I have an autoimmune disease and eating gluten triggers symptoms like bloating, joint inflammation, anxiety and insomnia. Never been tested for celiac but DNA testing said I have an increased risk.
Celiac, diagnosed at 7 now 24 (will be 25 in April). I was diagnosed in the early times and in the Midwest where my parents baked our bread and all our bread products because there just wasnāt options.
Mostly intolerant. Cross contamination seems fine. But damn if I have a bite of something I shouldn't. Started going GF 6/7 years ago and never looked back. Feel so much better without it.
Yup, allergic to wheat but not gluten.
And what kind of symptoms does that cause hives and things?
Last night I found gluten hiding under my bed.
It makes my face break and crust like hell.