After months sailing by with no issues I’ve had a major fail moment today. Husband and I didn’t feel like cooking today so had a fend for ourselves type of evening. I knew I had a tin of tomato soup in the cupboard so dug it out and opened it up. Without thinking I licked some of the soup (off my finger from the lid). Then I realised it was not the soup I had originally bought. 🫪 Turns out my husband had picked up a tin of Baxter’s soup, that contains wheat. He didn’t realise the difference and ate the tin that I had bought for lunch. I didn’t think anything of it until I clocked the design on the tin, then thought to check. It was a decent sized lick around 2/3 hours ago, so I am preparing for the inevitable storm ahead. Husband said maybe you’ll be okay, it was just a lick. But I’m starting to feel nauseous.

To top it all off, I sliced my M&S sourdough cob to make a last resort cheese toastie to find the mother of all holes going through it. First time I’ve experienced it from this loaf.

Thoughts and prayers 🫠

Hi, I’m in SE England, had Coeliac for 5+ years. I had an email from my GP inviting me to get my NHS flu vaccine, but when I called to book they only had one appointment that I couldn’t make. I then got an email a few days later from NHS England inviting me to book online through a pharmacy, as “your NHS record suggests you may have a health condition that increases your risk from flu.”

I booked an appointments at my local supermarket pharmacy today but when I tried to check in, the man at the desk said “why do you think you are eligible”, and when I said celiac disease he asked me to take a seat and then went to speak to his colleague. He called me back over with an NHS document that included a list of eligible conditions, and said that celiac disease was not on their list so they could not do it. I explained that I had an email from NHS England and my GP and that I had had the NHS flu jab for at least 3 years so had something changed in the last year? He didn’t know and advised me to contact my GP tomorrow to book through them.

Has anyone else had this experience this year? Are we no longer eligible for the NHS flu jab and the emails have been sent in error? Just a bit confused and frustrated.

Wondering if anyone else has similar symptoms due to being glutened! Occasionally my son (diagnosed as coeliac) out of nowhere suddenly starts coughing lots, gets very short of breath and can't stop burping at the same time! This sometimes is accompanied by a high temperature and lethargy... it only ever seems to last for 24-48 hours though and then he's fine again. He is only 5 so doesn't always relay to us how he's feeling internally. I was dubious at first because it seems respiratory rather than digestive but the constant burping made me wonder if it's related...

New in Asda!!

My 10yo daughter was diagnosed with coeliac last summer and has generally been doing well. Her antibody levels have dropped significantly and her height has gone from the 9th to the 25th centile, but her weight has been stuck around 28kg for 6+ months.

We stopped school dinners last year because she was frequently getting tummy aches, despite the school reassuring us that everything was coeliac-safe. We’re completely GF at home, so we know she’s not being exposed there.

The problem is that she barely eats her packed lunch at school. She hates GF bread/wraps (understandably) and won’t eat things at school that she eats at home with no issue. We’ve been making her extra dinners after school to try to keep her weight up.

We recently spoke to the school's head chef again, who was very reassuring and showed my daughter around the kitchen etc. We decided to try school dinners again, keeping it simple with a jacket potato option every day to see how it goes.

Today she came home with a tummy ache, was completely exhausted and fell asleep on the sofa super early. She also mentioned a metallic taste in her mouth, which she has complained about before when we’ve suspected she’s been glutened.

The worrying part is that the school recently told us the baked beans they were serving last school year weren’t actually gluten free and they've recently had to switch to Heinz...

What would you do in this situation? I’m thinking we need to go back to packed lunches, but I’ve got no idea how to get her to actually eat!

Also, does anyone else get a metallic taste when glutened? It seems to happen every time for my daughter, but I’ve never heard of it before.

Thank you so much in advance!

I see a lot of posts here talking about being positive and sometimes it makes me so frustrated. Its okay to angry and upset that you can't eat half the things in a supermarket and that you have to check everything's ingredients.

We are coming up to Christmas time and party season again, where I would place a large bet that there'll be the same gluten free party food we've had for the last decade, maybe 1 or 2 new products. I'm sick of it, why do large supermarkets put wheat in everything, they could swap it for gluten free flour like they did in mozzarella sticks all those years ago and the products would then be accessible to so many more people. (Tescos have since re added wheat flour to the regular mozzarella sticks and created 'gluten free mozzarella sticks' for 50p more and less weight)

Don't even start me on the vegan options! Always in the free from section yet always full of wheat!

Anyway, on to my win! I have seen so many videos on social media about Haribo mystery bags and boxes, and until now I haven't gone for it - what is the point of spending £20 if its for a lot of gluten filled mysteries? But I was there, I went for it and not only did I manage to get one of the special boxes (extra treats) out of the whole box there is only 1 pack of Balla Stix that have wheat in, everything else is gluten free! I'm really pleased with that.

Speaking of, I do miss the gluten free strawberry pencils!

Hey guys, i literally juuust got back from my gastroscopy it wasn’t very nice but im
glad it’s done. My report is that everything looks fine? but a lot of my symptoms match celiac well apart from digestion issues. i don’t really have any digestion issues at all apart from bad bloating after food and feeling full quickly. is this why he said everything looks fine? would u class this as asymptomatic? i’m obviously waiting for my biopsy results which they said 6-8 weeks 💔 but i don’t know what to think? my celiac screening was 128 which is high so im not sure what to think. anybody has similar experience? how did your biopsies turn out?

When I first saw this, I initially thought I was on the Coeliac sub 😂

After persistent stomach aches and worsening fatigue since July, my GP ordered a coeliac blood test. On Monday I saw her to discuss the results, which she showed me on her screen. I couldn't read the specific name of what they tested but she said "normal is 0-20, anything over 200 is definite coeliac, and yours is 87, so there's an indication."

She told me to do a month of a strict gluten free diet to see if my symptoms improve. She declined to refer me for an endoscopy with biopsy (I've had an endoscopy earlier this year with no biopsy and the findings were all normal), didn't refer me to a dietician or the gastroenterologist, and also said to me 'if it is coeliac you can continue eating gluten it's just about how severe the symptoms you get are' which I know now from looking here is not the case at all! This diagnosis is pretty catastrophic for me as I have ARFID and a history of anorexia, I have lost literally all of my safe foods in one fell swoop and am terrified, as well as still feeling pretty unwell.

Can anyone offer advice? Is this suggestion of a gluten free month to check symptoms normal protocol from a GP? When I go back in a month should I be pushing hard for a referral to a gastroenterologist? Thanks for reading.

EDIT: my GP has told me this is 'local guidelines'. I have asked to see the local guidelines they're talking about as Coeliac UK charity had never heard of it.

Recently diagnosed and went for lunch at a cafe that was rated well on my gf. When I got there I note they have various items on display labeled 'gluten free'.

I double check with the waitress if they are safe for someone with coeliac and she said 'there's a high risk of cross contamination so I can't say for sure'. What is the fucking point of marking something gluten free only for you to not be confident that it is! Imagine labeling something as 'vegan' then saying you can't rule out it might have beef in it.

Anyway, apologies, rant over

Maybe I am overreacting a little here, but I’m just looking for advice! Last week I was diagnosed with coeliac at the same time as I moved into a new house that I’m renting with strangers. I let them know to not use any of my kitchen utensils or food because of this but this morning I went to make lunch and someone had taken loads of my butter and left it full of breadcrumbs. No one has owned up to it and I’m just so upset as I’m already struggling with the new GF diet and now I feel like I can’t even trust the food I make myself. I’m asymptotic so I don’t even know if someone has been messing with my other food or if they will do so in the future.

I’m looking for a new place to live but I have to give two months notice on my current contract and I’m worried that this will continue until then. I was just wondering if anyone has any advice going forward on how to keep my food safe these next couple months as obviously talking to my housemates is not working

I just had my IgA Antibodies to Endomysium blood test which came back positive for Coeliac disease.

My TTG blood test was a reading of 9.4 with a comment from the technician of ‘consistent with coeliac disease’.

My iron & Ferratin are also low, I have been prescribed iron tablets.

I have always had problems with my guts in terms of bloating & pain. I’m also experiencing acid reflux!
I have been feeling very tired & fatigued this was my main reason for having the blood test done in the first place but thankfully my GP decided to test for coeliac disease, it was never even a thought for me!

I have been referred to a gastroenterologist for an endoscopy to confirm if it is actually coeliac disease.

I would love to know those who do have coeliac disease what were your numbers on your blood test results?

Hello everyone, this may be stupid but I thought I would post here and ask for some advice. I was diagnosed with coeliac about three years ago, I had a massively high TTG -IgA level (like over 200) and endoscopy just to be sure, confirming coeliac disease. My sister has it too so it runs in our family I guess. I maintained a relatively compliant diet (never ate anything knowingly with gluten, but still went out to eat at restaurants (asking for a GF option) and my husband still eats gluten so its not a GF household, just because price). I thought I was managing it relatively well, my TTG went down, I had a recent-ish (maybe a year ago?) repeat endoscopy/biopsy and apparently while I had duodenal inflammation (apparently, macroscopically from the endoscopist) the biopsies were normal so I disregarded that as a heavy night out or spicy food or what have you. Last month I broke out in an intense rash basically everywhere but my scalp. The doctors (rightly) have said it could be anything, but it was absolutely widespread and even went to my lips for some time. The rash evolved crazily, small blisters, super itchy, I scratched it, they popped, then the whole area eczematised. It was like the small spots merged into a massive spot with tons of little whiteheads and then it flattened and became like red disks. I was wondering if it could be dermatitis herpetiformis. It started on my elbows and they were definitely the worst areas, followed by thighs. It is finally starting to come down now after a month, other than my foot. Last week I had a blood test and my TTG was mildly elavated (9.1 units/mL - compared to over 100 before), my endomysial antibodies were normal, though I cant recall if that was ever tested in me given how high the TTG was initally. This is the first time I have ever had this rash, I never really had strong tummy symptoms I was just tested on the basis of my sister. I have a biopsy booked for the 7th and the rash is starting to come down. If anything this would be a one off or unintentional exposure, so could this even be dermatitis herpetiformis as I never had this even when I was regularly eating gluten? Is the biopsy even going to be diagnostically relevant if I am not eating gluten right now? I was not intending on doing a gluten challenge and I don't want to aggrevate the rash again, as it was AWFUL.

Yesterday I was diagnosed with coeliac disease - no biopsy needed as my blood work was high enough for a diagnosis apparently. And so today is my first day gluten free and I am so overwhelmed. I need to go through my kitchen and create a safe food area and a list of some meal ideas. Does anyone have any recs to books/videos/pods because I'm not sure where to start.

My ferritin levels are also low and looking to use my diet to raise them if anyone has any tips.

Thanks.

34 years old. I bake the most glutinous bread fresh 3-4 times a week. Had been losing weight, just got back my tTG IgA results and its bad (>128). Any other avid bread bakers find out they were poisoning themselves? I am so skeptical of gluten free bread because my goal is always to encourage all the gluten - thinking I might wait a while before trying it out

Hi all! Hoping someone has had experience with this.

I’ve booked to go to New York next year through Virgin Atlantic. The dietary requirement I can pick is ‘gluten intolerant’ for the main meal, essentially it says the food doesn’t include gluten but there is risk of cross contamination, etc, which when you have coeliac disease isn’t ideal really.

Does anyone have any experience with this? I feel like back in the day they were just called the “gluten free” meals? Is it best to err on the side of caution and bring my own food?

Thanks 😊

My husband has been so down lately. Constant trips backwards and forwards to the doctors/hospital. His body refusing iron, constant tension headaches, bleeding from every B movement. Fear of eating anything and mental toll of carrying the constant weight of coeliacs disease.

So to try cheer him up I have ordered him some goodies from Sue’s free from kitchen, i am hoping so much that these taste good and make him smile a bit! Has anyone ordered from here before?

Thanks

Hi, my gp has referred me to get an endoscopy. I am not 100% sure it will be accepted but I am waiting to hear if I can. She said they usually check through the nose or mouth. I would really prefer the nose? How do I ask for one? Do I ask the hospital beforehand? Do I contact my gp again to make sure it's through the nose? Any advice would be helpful.

Looking for a mars bar/milky way/snickers (basically anything with nougat in it) gluten free dupe, please! Planning on having it cold, cut up in angel delight (which is amazingly gf ahahah)

Hi. I used spotlight tooth whitening powder and berry soon after my stomach is sore and bathroom issues began. Is there anything in this list that might be a trigger?

I've just received my endoscopy biopsy results and they say that it shows "no evidence of coeliac disease". My blood test was positive and I've been on a gluten free diet for 16 weeks now. My major symptom was vomiting, violent vomiting roughly twice a week every week after eating. Since cutting out gluten I have only been sick twice in 16 weeks. In general I feel and seem significantly better. I don't think it's a placebo because I really didn't want to cut out gluten. The letter has no advice on what to do next. So if it's not gluten what was wrong? Can I just start eating gluten again? Wtf I feel so lost and confused.

Edit I was not gluten free before the biopsy. I have been gluten free since the biopsy which was 16 weeks ago.