r/CoeliacUK

Hello folks, recently stopped drinking alcohol and looking for some recommendations for some tasty gluten free and alcohol free beers?

Thanks in advance for any suggestions!

Currently pregnant and sick with HG and I have a real ick for the GF alternative taste you get in bread, crackers and pasta products...but I also need those products as I can't stomach anything else. So I guess I am asking which products any of you recommended for having the least of the GF taste and texture 😅 i am in NI if thats useful. My last pregnancy it got so bad I went back to gluten products because if my body attacks me like this anyway, what extra harm will gluten do right? Well it did ruin my iron and vitamin stores and gave me worse reflux etc... so trying to avoid that.

Hello all!

I was wondering if any of you are okay drinking vodka? seen as its made from wheat grain.

I'm not Coeliac but have a wheat allergy, so many of the things that apply to you guys apply to me too.

I'm off booze due to perimenopause anyway, but I really fancy a vodka which used to be my go to drink before my wheat allergy diagnosis. So yeah just wondering how people get on with it?

Thank you ❤️

For as long as I can remember, no matter what I eat, I always get stomach pain and digestive trouble. It's never been consistent (different feelings of pain in different areas of the abdomen, sometimes constipation other times diarrhoea etc), but I have never eaten anything without a negative consequence. Because of this, I was on a gluten free diet for a year when I was 14, but I gradually gave up on it because nothing changed and I never went back, I just pretended it was normal or wasn't happening so I wouldn't have to address it.

Thing is, I just got diagnosed with Coeliac. My TTG test came back as 157 late last year. I was scheduled for an endoscopy twice, but due to my anxiety around needles and medical procedures, I couldn't do it (I attempted it once and they couldn't find a vein because I was so tense and shaking, second time I couldn't get myself to attend the appointment). So instead, they referred me to someone else, which I later found out was the Coeliac clinic. They diagnosed me over the phone on the spot, and referred me to get tested for osteoporosis, and I just did that test today.

I'm really confused and I really don't know what I'm supposed to do. Eliminating gluten isn't really an option, I already struggle enough to find things I can eat (I'm autistic), and now all of my safe foods aren't safe anymore? My mental difficulties with food have gotten a lot worse since the first time I went gluten-free, and I get nauseous so easily, I don't know if I can do it again.

I find it really frustrating that I spent most of secondary school trying to figure out what the cause of my digestive troubles were and got no concrete answers, then the past 3-4 years trying to get a diagnosis or some kind of treatment for the chronic pain and fatigue I've been dealing with and got nothing, but suddenly now they've figured it all out and I just get handed a diagnosis with no explanation or advice other than 'go on a gluten free diet'? It kind of feels like a punch in the face, honestly.

I mostly just needed to vent, but if anyone has been in a similar position and/or has some advice, it would be appreciated 😊

Very high Ttg IgA (136) but negative endomysial IgA. I've been referred to Gastroenterology but I went through this whole scenario back in 2019... had the biopsy which showed negative. The only difference is this time my TTG is way higher. Thoughts? Has anyone had similar blood work results and been diagnosed with coeliac?

I have some questions about the UKs laws of labeling their gluten free foods and was hoping someone on here would be able to help me be less confused. so i am from Australia and here our laws are very very strict and for a product to be labelled gluten free or to not have to declare gluten on their food it has to have absolutely no gluten and absolutely no cross contamination. From my research i have been doing about the UK, their law is that food has to be under 20mg/kg to be labelled gluten free and under 100mg/kg to be labeled low gluten. my question is how are these actually gluten free??? because they’re still containing gluten? i’m a very strict coeliac myself and im just a bit nervous and might be over thinking but if i eat the gluten free food in the uk that has gluten in it will it make me sick because i have had 0mg of gluten in my food for years? if anyone has any advice or information it would really help me and my nerves, thank you!

Hi all, I’ve got an endoscopy in a couple of days for my suspected coeliac diagnosis as I’ve been having reoccurring nausea. I’ve read so many stories to the point I’m considering cancelling.

I’ve asked for general anaesthetic and they have refused and said they only consider it for patients who have had a failed attempt at the endoscopy, and will only be giving me sedation.

I have a severe fear of vomiting and gagging in general so this is causing me a great deal of anxiety.

Please give me your positive endoscopy experiences.

Thanks!

Hi everyone. I was diagnosed 8 days ago. I am a 38 year old male in the UK. I have been gluten free since the diagnosis but did eat a couple gluten containing foods in that time (very small amounts). I just wondered if anyone has had the following symptoms:
Muscle twitches (various body parts and last maybe 2 - 4 seconds in duration) and muscle aches
Exacerbation of other ailments (worsening of shoulder bursitis tendonitis and sciatica that has lasted for over 2 months)
Stomach cramps
Ghost poos (wanting to go but no pay off)
My vitamin D was at 91nmol on April 10th

My symptoms were bad about three weeks ago. I had all the symptoms above along with mouth ulcers and this massive blotch of really red skin in my neck. That’s calmed down now thankfully

I just wondered if anyone had similar issues/experiences. I noticed that having this illness seems to worsen hypochondria which doesn’t help.

Thank you 😀

My daughter has Celiac, ordered the gluten friendly meal, and was served a standard meal with a regular roll of bread on a flight from New York City to Tokyo. Flight attendants basically shrugged and said oops. I spoke with customer service who told me she should just not eat in public, they did an internal investigation, but I need to read the Terms and Conditions closer (the CS agent admitted she had no idea what Celiac is, but also had no problem telling me that people with allergies are solely responsible for what they are served when eating out of the home).

I raised it to the DOT and received the response below. It is shocking to think there are actual humans writing these responses and answer - G-d forbid they ever have an allergy of their own to deal with I bet their tone would change real fast...

I guess when you're a corporation with a near monopoly, basic humanity and decency doesn't matter.

---------------------

From:

Annie ******

Global Customer Solutions

United Airlines Corporate Office

DOT/CRO Disability Manager

We acknowledge receipt of your concerns submitted to the United States Department of Transportation regarding your daughter's recent experience with United Airlines. Thank you for taking the time to speak with me directly about the bread roll served to *****. Please accept our sincere apologies for any distress this matter has caused. We are pleased to learn that your daughter is doing well.

We have conducted a thorough review of this incident and have addressed this matter internally to ensure continued adherence to our service standards. Our Gluten-Friendly meal option is designed to accommodate customers with specific dietary needs. However, as clearly stated on our website, we cannot guarantee that these meals are 100% gluten-free. 

While we make every effort to communicate this policy transparently during the special meal selection process, we regret that ***** experienced headaches and nausea after consuming the bread roll. You're welcome to call me at ***** if you would like to discuss this further. 

Thank you for your time. We hope to regain your trust on your next journey.

I was diagnosed a few months ago and still yet to find some good supermarket burger buns that don’t fall apart, or go the other way and are weirdly stodgy, or have a gross aftertaste!

I don’t like the ones by Genius or Promise (unless they do multiple types which I may not have tried), or Asda or Tesco own brand…can anyone give me a good rec?

After years of traveling with celiac disease, the single most important thing I bring isn't a snack bar or gluten-free crackers.

It's a doctor's note in English.

 Here's why it matters more than you think:

1. Airlines, Most European airlines will give you a free GFML (gluten-free meal) if you request it in advance. Some require proof. A doctor's letter gets it approved with zero pushback.

 2. Customs, If you're carrying a large amount of gluten-free specialty food across borders, customs agents can get curious. The letter explains everything.

 3. Restaurants in countries with low celiac awareness ,In places like Thailand or Turkey, showing a medical document changes the conversation completely. You go from "picky tourist" to "medical condition."

Ask your GP for a one-page English summary of your diagnosis. It takes them five minutes and it's worth its weight in gold.

 

What's the one travel item you never leave home without? Would love to build a list from this community.

Not the bread. Not the pasta.

The thing that gets me the most is just going to a café or bar and ordering a normal beer.

No questions. No checking labels. No “is this gluten-free?” awkwardness. Just a Stella or a Duvel like everyone else and you’re done.

It sounds so small, but it’s actually one of those things you only notice when it’s gone.

Now every time I’m out with friends there’s this little mental step in the background:
what can I safely drink here? is there even anything for me?

Meanwhile everyone else just… orders whatever and moves on with their life.

I don’t even miss alcohol that much. I miss the simplicity.

The feeling of just being part of the moment without having to think about it.

It’s weird how something so normal becomes the one thing you notice the most

We are passing through/by

Doncaster

Sheffield

Nottingham

Leicester

Northampton

Luton

(Birmingham on the way back!)

But happy to travel a bit extra for somewhere special 👀

Suggestions in london also welcome as we are staying a couple days!

Huge thanks for any suggestions!

(My partner will eat anything!)

apologies in advance i am just gonna rant because i have no one to talk about this with.

i’ve just been diagnosed with coeliac in my early 20s after experiencing chronic fainting for the last 5 months due to IDA. i’m struggling with my diagnosis so much, i feel incredibly isolated and i’ve also struggled with anorexia in my teenage years so the thoughts of food being a fear again is haunting me (although different fears it’s definitely a slippery slope for me) i think i just wanna ramble but any advice, meal ideas etc would be greatly appreciated!!

ive experienced a variety of symptoms for 6+ years but have never had gastro related symptoms so my drs were previously investigating me for chronic pain + fatigue in my teens. in the last year i did relapse with my ed and i can’t help but think this was my fault for triggering this on myself which is so stupid. i’m also just in disbelief that i could possibly have coeliac but it does make so much sense. i’m also being investigated for POTS or related issues as i have been having heart irregularities.

overall i’m just incredibly overwhelmed with everything going on. i have insane anxiety around fainting now, and despise going anywhere on my own because i am so worried. i regularly have panic attacks in public when i feel symptoms coming on. previously my safety net in these times was always “i need food” and now im terrified to eat anything i don’t make myself at home. im also vegetarian so finding gf & vegetarian food on the go is very difficult for me as im a picky eater anyways and very texture focused

i don’t know a single other coeliac or even gluten intolerant person to talk to about any of this. i’ve been reading constantly and watching videos to try and understand but i am just overwhelmed. there’s so much to know and so much to be scared of and i feel so hopeless now. i live with friends and they are being supportive but i still feel lonely and they don’t understand the extent of my fear. i know it will get easier as i readjust my lifestyle and find different things to enjoy, places to eat and favourite foods but everything is daunting. i miss my previous safe foods i am a creature of habit.

i’m also just scared for how long it will take my body to heal. obviously this is something i need to discuss with my doctor anyways, but the thought of potentially experiencing chronic fainting for until my body can finally absorb nutrients properly again is killing me. someone please tell me it will be okay and my life is not over

Since they announced they'll be gluten free certified I have been checking every bottle in every shop and NONE have the new labels.

Had to look it up online to check it wasn't a fever dream, it was not.

Multiple online supermarkets have this info for Sarsons malt vinegar (ironic as it's fuckin useless if you're online shopping)

Now Gluten-Free certified!**We are in the process of rolling out our new labels updated with the Crossed Grain trademark. All bottles with the following batch codes are Gluten-Free certified. If you can't see the Crossed Grain trademark, please check the batch code to confirm Gluten-Free status:

240805-PB00022925

240802-PB00023002

240731-PB00022755

240710-PB00022306

240521-PB00021104

240731-PB00022755

240805-PB00022925

240710-PB00022306

240612-PB00021600

240805-PB00022925

240731-PB00022755

240710-PB00022306

240802-PB00022755

240711-PB00022306

240801-PB00022755

240628-PB00022017

240730-PB00022755

240131-PB00018670

Hi everyone, I am being tested on 02/06 and read that I shouldn't exclude gluten from my diet so as to avoid an inaccurate result. All well and good.

But, I don't particularly want to spend the next 2-3 weeks on the loo or cramping. Can I limit the bad foods for a period and then the week before add them in again, or does the test need a longer sample time, like a diabetes blood test that represents a 3 month period?

Just got sent this exciting news which I thought people might be excited to see.

Hello!

I absolutely love matcha for years but only had it at very certain places or at home. Now that it's become so popular does anyone know of any high street chain that have safe matcha? I usually avoid coffee shops because of the oat milk and find that it's harder to explain coeliac disease there than at restaurants!

Hi,

Does anyone have any experience with eating inside Wembley Stadium? It says on their website they have gluten free options, but I highly doubt they’re coeliac safe. Also, has anyone ever requested to bring their own food into the stadium, I plan to submit a medical exemption form on their website, but I’m just wondering how accommodating they’ll be. Thanks. 😊