I don't know if it's because I was diagnosed earlier in life or from my medical background I know that celiac disease is not like IBS or Ehlers Danlos, in the sense, it's a relatively straightforward diagnosis positive anti tth and a biopsy, eat gluten free, best supportive care when accidentally glutened.

Things are overcomplicated, so many pseudoscientific discussions being had worsening people's anxieties, some degree of obsessive self victimisation.

You are a person with a chronic illness yes, but you are a person.

EDIT : Did not expect this post to blow up, I was being cheeky sorry to those who feel hurt. I am learning about the US healthcare system in these comments, and honestly baffled and bamboozled because to me you guys are describing an insane healthcare system and illogically long diagnosis times. So all the raging at me is valid, I did not know and still don't understand what the hell is going on that doctors are not doing simple screens.

EDIT 2: To the doctor colleagues, I'm going off of patients experiences with very limited data on how the US health system functions, so going based off of my clinic context.I appreciate demographics/cost/differing structure of referrals/ability to perform investigations or have certain investigations/referrals approved through primary care might look different . Where I'm practicing, we slap on a celiac screen to blood tests even as a just in case for completeness so great variability of experience without seeing the medusa underneath.

I see so many people on this separate talk about their experiences with getting diagnosed, and how they felt hopeless in the beginning, and I just wanted to talk about how my life changed.

Growing up I was always the sick one and the doctors could not figure out for the life of me why. It became a toss-up of so many different diagnoses; it wasn’t funny anymore. I began to gain weight rapidly, doctors told me I just needed to exercise but I was incredibly tired half the time — I began to sleep at 5pm - 12pm, my parents assumed I was just a depressed teen, partially true, but my body felt like it was killing itself. Then the seizure-like symptoms came on; I was full conscious and could retain everything but I would lay there for what felt like hours “seizing,” the brain fog became so much worse, and I just felt like a shell of a person. Many doctors told me I was making it up for attention, and unfortunately I believed them.

Then hallucinations, delusions, and other out of character things began to happen. And oh the rage I felt.

It took 9 years for a doctor to run a full body panel and figure out I had celiac disease, the numbers were incredibly high to the point that he diagnosed me right on the spot.

The delusions and extreme paranoia? Beginning of Gluten-induced psychosis.

The seizure-like symptoms? All went away the moment I went completely gluten-free. I did not have epilepsy nor any other disorder.

The brain fog? Gone.

It took a long time for me to fully accept that I had celiac disease. It’s normal to have slip ups, to get frustrated with how people treat you. It’s normal to be upset that someone won’t date you because of your restrictions. I remember crying because I didn’t want to cook, now I love experimenting. The disease isn’t the end even if it feels like it, and eventually it gets better.

Though I will say I miss a good croissant I didn’t have to make.

Hello everybody! I have been a part of this subreddit for the past 3 years ever since I got diagnosed with celiac. My diagnosis was based off of the verbal confirmation of the doctor’s office who did my endoscopy and biopsy while I was in the ER. The thing is, even with eating gluten free I have been experiencing the same symptoms for years. I thought it was due to cross contact or lack of nutrition absorption. I was hospitalized maybe 10-12 times in the 3 years. Went into $10,000+ in medical debt because of it.

Then a couple days ago my husband was looking through my chart and realized that every reference to my celiac was word of mouth and based off of the assumption that my biopsy was positive. He needed up finding my biopsy and it says negative, rule out celiac. I also tested negative for the blood test 4 times and my antibodies never changes even when I was eating gluten. On that same night we did the ultimate test and I ate a Dino chicken nugget. I felt nothing. Absolutely nothing.

We believe what I actually have is chs, Cannabis Hypermesis Syndrome. Which was noted in my chart but NEVER once did they tell me that could be a possibility. So I was unknowingly making myself sicker and sicker by self medicating through the pain and nausea.

The reason I share this isn’t to brag or give anyone false hope, I share this in hope that if anyone else out there is going through something like this - please investigate your own chart very thoroughly. Do not trust doctors to, they don’t have the time or the care that you will. Please don’t wait 3 years of suffering to do so.

Hi, I am not coeliac but I’ve just got a question because I’ve got a coeliac in my life. So it’s my friend’s birthday soon and I am making her a cake, her boyfriend is coeliac and to include him I bought some gluten free cake for him.

Would this make you feel outcasted or like an afterthought? What do you guys prefer someone does in these situations?

I’m newly diagnosed with celiac, and I really just miss the days where I could order whatever I wanted at a restaurant. I barely try new foods now because I just don’t know if they’re safe. The fun of traveling and eating has been taken from me. I can’t eat out in peace anymore.
I hate being the center of attention lol, so asking in a restaurant about regulations, fryers, and safety precautions is exhausting.

Like, I went out to a restaurant the other day and told the waiter I had a gluten allergy and asked about whether they had dedicated fryers because I had seen online that they did. He said if I had a “real” allergy, then no, the fryers weren’t safe. I know some people do it because it’s a popular diet now, but if I’m asking, obviously it’s because I have a medical reason to be concerned. It was just frustrating to be met with that kind of response.

I know I’m still new to all of this, but it’s honestly overwhelming. Does it get easier with time? I miss enjoying food without having to worry about everything.

The main thing I've noticed is anyone that is afraid for any reason seems to get downvoted to hell and back. Why? Is it really to avoid spreading paranoia, or just that some are so jaded that others being paranoid is annoying? Not trying to start anything, just curious on peoples' reasoning.

Hey everyone! I’m 30 (F), in Melbourne, and at my wits end with my stomach.

I’ve had tummy issues for my entire life; regularly got constipated as a kid and felt ‘sick’ a lot (turns out I was lactose intolerant and probably gluten intolerant). My parents just dismissed my concerns and told me I was either overreacting or being a hypochondriac 🥲

As I got older, I worked out the lactose intolerance, then saw a gastroenterologist at 19 did a gastroscopy & colonoscopy and diagnosed IBS as he couldn’t find anything. He did no other investigations, no breath test or gluten loading etc. just diagnosed GERD, IBS and prescribed antacids.

That was a bit over 10 years ago. Since then I’ve had random vomiting episodes, reflux, diarrhoea, constipation, fluctuations between the two, bloating so bad I feel like my stomach is going to explode.
I’ve had brain fog and other symptoms that align with being glutened but idk if that’s POTS or other crossovers (was diagnosed with POTS last year). I also have endometriosis stage 4, and my bowel has been impacted, so that’s a factor as well. Last year I lost about 15kg due to POTS, endo and possibly gluten, but again, I can’t be sure.

I just spent 6 months in Southeast Asia, eating GF 95% of the time, and my gut felt the best it has in years. This was despite the semi-regular food poisoning. I finally started to put some weight and muscle back on, gained energy, sleeping better, digesting better. I just felt lighter and like my stomach finally had a chance to breathe or something (idk how else to explain). In the last 2 weeks, we were in Malaysia, and most of the food was super heavy and had MSG and gluten. My stomach LOST IT- vomiting most meals, constipated, depressed, anxious. I could not wait to get home (I attributed it to the heaviness of food at the time).

The only thing that helped me during that time was domperidone, which I discovered in Laos, and has been more effective for my nausea/ vomiting than any other medication I’ve had.

I got home about 1 month ago, and the first week, I was great and we weren’t eating gluten. It slowly crept back in though, as it’s just what we’re used to cooking and eating at people’s houses etc, and my stomach is back to explosive diarrhoea, exorcist vomiting, bloating & distension, fatigue, brain fog, loss of appetite. There might be other symptoms I haven’t noticed.

I guess I’m just wondering- what do the lived experience experts think? I want to go see another gastroenterologist and get checked again, but I’ve had SO many disastrous experiences with doctors and specialists over the past 10 years that I have been putting it off 🥲 thank you if you’ve read this far. Any advice, experience and recommendations are very welcome 🙌♥️

It’s my freshman year at college, and so far I’ve gotten glutened at least once a week and it’s making me miss my classes. I’m already in contact with my school’s disability services and dining services, I have an apartment style dorm with a kitchen, but no matter what I do to prevent getting glutened, it always ends up happening.
I’ve only been diagnosed with celiac for 2 years, so my parents think I should have a leave of absence or withdrawal until I’m feeling better. I understand where they’re coming from, but I’m just so in love with my school and I’m feeling very lost. If there’s anyone who went through something similar, please let me know what you chose to do 🙏🙏🙏

The pizza is delicious. The cheesesteak is not. The texture of the "pocket" is soooo good in the air fryer. It reminds me of a normal biscuit fresh out of the oven. Flaky, kind of, but crisper.

LAUNDRY DETERGENT! I've been washing my clothes with this stuff for years. For some reason today I was bored and turned the bottle around. "wheat proteins (gluten)". WHAT?!

...is this a problem? Do I need to throw away all my clothes now? I've washed everything in this. Bed linens, my fancy knits have soaked in this for every wash for YEARS.

Click the Gluten-free test section and play the audio file. It's an AI claiming to be the founder Colleen and she says she was diagnosed when she was 15 years old which was "a couple days ago" WTF they shouldn't advertise this shit if it's not 0 ppm this is garbage fuck gluten fuck silent celiacs fuck you for accepting this stupid gluten filled world fuck

Listen, gluten free baking is hard, nerve racking and down right scary, but this recipe is so so so damn good. I’ve made others that promised gold and gave me hockey pucks. I made these two days ago and have eaten all of them. Every time I think I may be over reacting on how good they are, i see my boyfriend eating TWO at a time!! i mean, i dream about these cookies. Thank you to the baker who made this recipe!! Gluten Free Mode Chocolate ChipCookies is a gift from the gods. I have no pictures to provide because we devoured them so fast. I will not be okay until everyone has had these.

Hi, I am looking for advice and not judgment, please. I myself have celiac so I understand the disease and the severity of leaving it untreated with not cutting out gluten.
At the advice of my doctor, I had my 14-year-old tested and she has silent celiac, confirmed with bloodwork and a recent endoscopy. I was shocked as she never had GI issues or growth issues, etc.
I am struggling to get her to cut out gluten (outside of the home as our household is GF) as she is refusing to accept her diagnosis and “shuts down” when we try to talk to her about it. She is very angry about it. She won’t share it with anyone and doesn’t understand why she needs to cut out gluten since she feels fine.
I am looking for resources or advice on what to do. Thank you in advance for any thoughts or if you have dealt with this before. I am in tears as I write this as I feel like a lost parent.

My favorite drink from Starbucks is the almond milk sugar cookie latte- I know (or think) the drink from the actual store is safe as long as I do almond milk and have them clean everything. Is the new sugar cookie latte creamer from the store celiac safe? It says almond milk but then in the ingredients it says it has oat flour…. Anyone know?

for the last year, i have been experiencing symptoms commonly associated with celiac's. gut issues after eating glutened products, unrelated blood tests that show signs of an autoinmune condition, and so on. i was supposed to have an appointment today, but it got moved. and i don't know how much longer i can take continuing to eat gluten before getting checked, since i know if i go gluten free without a diagnosis i can never know for sure if i have celiac's. just today i got a symmetrical rash on my inner thighs, as in, the rash was on the exact same place at both sides. i get tummy pain and cramps so severe i feel like i'm dying, and sometimes the pain moves to my back or causes shortness of breath. i'm deeply worried and need some advice

Only symptom really has been recurrent canker sores every like 2-6 weeks for over 6 years now. No GI symptoms. Mom’s been gluten free for about a decade now but never diagnosed and her celiac testing was always negative, no other family history of (diagnosed) autoimmune diseases. All my celiac screens were negative, but IGG was elevated so they sent me to a GI.

GI said she’s not really worried about the IGG because the IGA was in a normal range. She sent me to go get a genetic test for celiac and told me to go gluten free for 4-6 weeks in case I have a non-celiac wheat allergy that could improve by cutting it out. She wants to avoid a biopsy if at all possible.

I’m on day 3 of a gluten free diet and I’m really depressed. I bake and cook a lot, and I have a couple local bakeries/restaurants I rotate between every weekend. I just feel like I’m staring down a lifetime of losing a major part of my routine and my identity. I know you can still bake and eat things, but I’ve lived both sides of it for several years and I know it’s not the same.
I just got the blood draw done today, and I know it’s going to be weeks before the results come back and then they have to interpret the results. The waiting is agonizing.

With things like this, I often have bad luck, and I feel like if anyone is going to have a mostly asymptomatic case of celiac, it’s going to be me. I’ve seen my mom suffer so I know I have it easier than a lot of people going through this, but having a first degree relative with GI issues and a gluten intolerance is scaring the hell out of me.

Does anyone have any tips for dealing with the waiting and wondering?

So many snacks as a celiac! I'm glad major companies are accommodating to us who don't have the option too.

I got glutened a few days ago and I had my usual symptoms of cross contamination (nausea, body aches, fatigue, brain fog, migraine, etc). I had a new symptom this time, i got weirdly shaky after eating crackers and felt like I was going to pass out. Usually when I have a reaction, I have some symptoms last for a few days/weeks afterward - just some lingering nausea, constipation, that kind of thing. But now I’m noticing a lot of new symptoms and some that last a lot longer. I have a lot of hair shedding, like at least double the amount I usually do. I feel shaky if I get even a smidge hungry. And last time I got glutened, I couldn’t drink for about a month without waking up after feverish.

I was wondering if anyone else has these weird symptoms too, if it could be something else, or if my reactions are only getting worse as I’m getting older (I am 25 now, got diagnosed when I was 16)

Im waiting to get bloodwork to see if i have celiac. I only stopped eating gluten briefly and after noticing the immediate relief requested a test, bc of the brief gap my dr told me to eat lots of gluten for two weeks before getting bloodwork. Ive done a week with the usual symptoms of bloating, gas pain, nausea, diahrea etc which is all normal for me but I’ve recently started having this issue where if i eat anything at all regardless of if it has gluten, my stomach cramps immediately after swallowing and its a debilitating kind of pain. Usually fades into nausea after a half hour or so but its extremely intense and sometimes makes me puke immediately after i ate. Should i be concerned abt this new symptom or is it normal?

Hi, my dad just gifted me his ninja creami that I used to use pre diagnosis A LOT. I never mixed in many gluten topping but there likely has been minor amounts of gluten either from cc or add ins like oreos. I mostly used it for frozen ice desserts. The rest of the machine I plan on deep cleaning and otherwise feel comfortable with thankfully. RN I want to avoid buying new containers if I can so I was wondering how others might go about it. Ofc I plan on deep cleaning them but I wonder if that'd be enough

Hi everyone! I've been on a GF diet for around 10 months now. Based on my latest test results, I don't have any bad vitamin or mineral deficiencies, yet every now and then I still experience significant muscle fatigue even after a very light run or a little bit of weightlifting at the gym (working out with the lightest weights and mostly with elastic bands).

I also experience quite bad knee pain after running or even just going on long walks. I've double-checked with my doctors, and they've confirmed that I don't have arthritis.

I know I'm still at the beginning of my long journey, but is this normal? I thought my energy levels would improve a lot after months on a GF diet. Am I doing something wrong?

I’m very careful with my diet and only eat food made by me at home, so I guess gluten contamination isn’t really in the picture here.

Has anyone experienced anything similar or dealt with these kinds of issues?

I'd appreciate any opinions or advice.

Thank you all!

For as long as I’ve had celiac (since 2019), I’ve noticed I react to products that are labeled gluten-free but aren’t certified gluten-free. I’m pretty convinced it’s cross-contamination because I know my sensitivities and none of the ingredients in these products are an issue for me. I rarely have issues with certified GF products, but I consistently react to general mills products like fruity pebbles, cheerios, and chex, as well as trader joe’s GF sandwich bread and hamburger buns. So many people on here swear these products are safe for celiacs, so why am I always reacting to them? Anyone else experience this? And as far as I know my celiac is well managed, my blood test was normal and my endoscopy showed my intestines are healed.