r/CoeliacUK

Does anyone eat stuff from Grape Tree? Their package labels are so odd. I just can’t fathom how a bag of whole nuts or raisins could “may contain” every allergen under the sun. It makes me think they’re being really over-cautious and maybe they mean “produced in a factory that also handles xyz”. Which normally I would be okay with eating, given that my kitchen at home handles gluten as does every restaurant I go to. We just have separate areas and take precautions! But I don’t know - I’m not obviously symptomatic so I could be making the wrong choice here.
Does anyone eat anything from Grape Tree? Used to love it and always felt like avoiding the whole shop was overkill.

Motorbiker (not a pedal bike)

I've been coeliacsince 2017, and I ride. Anyone who does both knows the specific hell I'm about to describe.

You're 40 miles into a ride, you're hungry, and you pull over in some village you've never been to. Everyone else just walks into the nearest pub. Me? I'm stood outside googling "gluten free near me," reading menus through the window, ringing ahead to ask if they understand cross-contamination, and half the time giving up and eating a bag of crips in a car park because it's not worth the risk.

I did the NC500 (Scotland) on my bike, genuinely one of the best trips of my life, and some of my strongest memories are of being absolutely starving (in the loose terms) because there was nowhere I could safely eat for miles. On what should've been the trip of a lifetime.

ireland was similar, Wales was pretty good..

And it made me angry. Not sad, angry. Because the information exists, other coeliacs have been to these places, they know which ones are brilliant, it's just locked in their heads or buried in FB posts / threads or Insta that vanish. There was no way to be that bit more spontanios, when you're actually stood there, hungry, deciding.

So I'm curious, fellow coeliacs (bikers or not)

how do you handle eating out somewhere new? What's your system? Do you plan every stop in advance, or wing it and hope? I feel like we've all just quietly accepted this as normal and I'm not sure we should have.

Quick question for anyone who was at Finsbury Park yesterday, what was the food situation like? Were there any vendors offering gluten free food? Going to Wolf Alice tomorrow and trying to plan ahead as I have to eat a gluten free diet.

I was diagnosed as Coeliac about 7 months ago and have of course been strictly sticking to a GF diet. Feeling better in myself but still struggling with stomach issues, i am starting to feel perhaps I may also have crohn’s disease?

What are the overlap in symptom? Mine are struggling to go to the toilet even when feeling the need to, terrible lower left stomach pain (much worse when exercising, it makes me fold over in pain) Sometimes blood in stool. It is mentally getting to me a bit, thinking my pain and issues were over for this to continue.

Is this all just Coealic or could it be something else?

I feel like waiting circa 6 months to get an endoscopy and biopsy results is just not working for a lot of people. The staff I've encountered have always been fantastic but man, these waiting times are really long - especially given you have to keep eating plenty of gluten leading up to your blood test and endoscopy. I'm still waiting for the biopsy results of mine to come back - been over 2 months since I had the scope...

What do you reckon - is there a more effective / efficient solution the NHS should consider? And how can it take that long to get biopsy results... What is the bottleneck?

Hi everyone! Just after some advise/to see if anyone has had a similar experience.

I was diagnosed with Coeliac in January at the ripe old age of 35 and quite out of the blue. Following this I (obviously) cut all gluten out of my diet. Everything started great, I was feeling better, the symptoms that had prompted my original trip to the GP went away (mostly urgent diarrhoea as soon as I woke up and loose stools a couple of times in the day). In March I had a follow up blood test and my markers had gone from 130 odd to 46 so looked like I was doing all the right things.

Fast forward to the end of May and my symptoms came back and haven't gone away since. At first I assumed I had been CC but surely they would have got better by now? For context, my household is completely GF, I make all of my own food when I go into the office, I have avoided 'may contain' to the best of my knowledge and I rarely eat out anymore (when I do I research the restaurant to within an inch of its life to make sure its as safe as possible). Since diagnoses I have pretty much stopped attending social situations for fear of CC and I haven't eaten at any friends or relatives houses.

Has anyone has similar experiences? I am pretty much freaking out because I am not sure when more I can do and I feel like it has all been for nothing. I really feel like I am trying my best and I'm just so sick of being sick.

My daughter is 12 and was diagnosed with coeliac disease 2 years ago so has been gluten free since then. She had her review bloods and appointment with the dieticians this week and her TTG levels came back at 11. This is a massive difference since they were mega high when she was diagnosed. However the dietician said they should ideally be no more than 5 so she must still have gluten in her system and we need to review what we are doing. She doesn't seem to be showing any symptoms currently. We have had 2 occasions over the past 2 years where she has accidentally eaten gluten and she will vomit within an hour or 2 so it's very clear when it happens!

Has anyone else had this situation? Is there anything in particular that made a difference to bring the result down to safe levels? She has a fully separate kitchen area at home, her own equipment, separate food storage, we have a dedicated gluten free oven, we are careful choosing where we eat out, her school caters for her correctly. The only thing I can think of is minor cross contamination from surfaces or hands so being more strict about washing and wiping down even when we eat out. She does have a 3 year old sister who still eats gluten so can sometimes be hard to stop her covering the place in crumbs! But we keep eating areas as separate as possible.

Any advice would be amazing! Thank you all!

Hi everyone,

Not sure if this is the right place to post this, and I apologise if not, but I'm really struggling.

For a bit of background: I'm 17 and know I have some sort of intolerance to gluten. My doctor wanted to me to eat gluten for 6 weeks and get a blood test for coeliac, but I couldn't make it 6 weeks so I just decided not to - I don't think it is anyway.

I've been trying my best not to eat gluten for about a year now and I'm going pretty well. Occasionally, I accidentally eat something with gluten and I always get horribly painful acid reflux that lasts multiple days, constipation and a hard, bloated stomach.

Recently I've been trying gluten free recipes as alternatives for my old favourite foods. It's been going well so far - I made cheese scones earlier this week with no issues. But tonight for dinner (about 3 hours ago), I made a gluten free pizza dough and had pizza for dinner. I used instant yeast in the dough and googled it multiple times to make sure it was gluten free and it was. About half an hour ago I started getting horrible acid reflux and the other usual symptoms.

Also I had homemade soup last week and got acid reflux, bloating etc afterwards. It turns out there was yeast extract in the stock.

Was the yeast not gluten free, or is it possible I don't have a problem with gluten at all and it's the yeast giving me this reaction? Thank you for any help!

To keep this brief and light but I have diarrhoea bad every other week as a min or just not normal stools majority of the time. Kept a strict gluten free diet yet this always happens.

Have 2 coffees a morning, don’t smoke or drink - healthy diet.

GP wise I’ve gone a few times over the years they may do bloods or a stool test but nothing’s coming up. It’s getting tough at this point as I know it’s not normal and it’s grim and uncomfortable.

Is there a different way for diagnosed coeliac’s to access additional testing that’s not through GP tests? I don’t have a consultant or anything like that but something is not right.

Got private medical if that helps with Bupa?
Apologies I know no one likes talking about this area of coeliacs but don’t really know where to turn.

Pretty upset about the Aldi marmite saga.

Not only is it derived from wheat and barley, I got in touch with food standards (why do you have to get in touch only with your local department, when it's a countrywide issue- I'm in Yorkshire which is an area I think doesn't give a damn about celiac like somewhere in Bristol or Brighton would). The woman has listened to aldi telling her it isn't a legal requirement to declare wheat or barley, and the page on the trading standards page which disputes this says Page Not Found . Incredibly frustrating. Does anyone have evidence that this is in face against UK law? And does anyone want to report it to their local trading standards or know how to report to a centralised one. The whole process was incredibly difficult. I'm just upset people will continue to be ill from this and Aldi doesn't have to issue a statement or change the label.

Also I highly doubt they test the PPM.

I got really ill from eating a tiny bit, if I had made a gravy from it and eaten the amount I usually do, I can only imagine.

Email from trading standards:

Good afternoon,

I have been in contact with the Primary Authority for Aldi and have received the following response:

The yeasts used in Grandessa Mighty Yeast Extract are grown on substrates from Barley, Wheat and Molasses. During the yeast extract production process, the gluten content is reduced to a level of ≤20 parts per million (ppm) which is considered as gluten-free according to legislation, and allergen declaration is not required.

Just wanted to share because I am SO happy and need people who understand!

My daughter has just turned 5.. her TTG just before her 4th Birthday was at 2733!!

Wr have just had her most recent results back and shes at 36.6.. i could not be happier for her and feel proud of all our hard work to get those levels down!

This might even mean she is allowed to try oats again soon if her consultant agrees.

Wooooooo!!!!!

Help discerning labs while I wait!

I have a follow up with my GI in a couple weeks. In the meantime, I’m left wondering if I’m truly celiac or not with these labs! I actually had an upper endoscopy before bloodwork due to intermittent GI distress (pain, cramping, diarrhea, mucus, and sometimes constipation) and general fatigue/ achiness. The scope found inflammation/ increased IELs (I believe Marsh 1) of my small intestine. I was tested for celiac and sibo. I did not do the gluten challenge, just had two weeks of ensuring I ate a lot of gluten and a normal-ish diet before that (maybe was somewhat low in gluten/ dairy due to me trying to avoid stomach upset).

Here is my bloodwork:

HLADQ2: positive

HLADQ8: negative

Ttg Iga: 4 u/ml (weak positive)

Immunoglobulin A: 300 mg/dl (normal)

EMA: negative

DPG IGA: 34 units (high positive)

Also mildly anemic and low in Vit D.

SIBO was also positive.

What do you think? 🤔

Hi everyone

I know this sounds ridiculously stupid so would really appreciate not getting the "you shouldnt have done it" replies. I already know this and I cant do anything to change it.

I should start by saying Im otherwise incredibly strict with cross contamination. But...

When I was first diagnosed in 2016, I stopped eating Walkers crisps but then I read somewhere that Walkers crisps only contain the warning as they're produced in the same factory that handles gluten and that this was effectively a legal requirement but the production lines are separate. Because of this I have been eating Walkers crisps for the past 10 years.

It seems the label at some point has changed to 'may contain..' but I didnt realise.

Does anyone have any helpful advice/information on this?

Edit: Just a got a reply from Walkers.

"Although we have robust controls in place to minimise the risk of allergen cross-contamination, products can only be labelled as "gluten-free" when they have been verified to contain no more than 20 parts per million (ppm) of gluten."

"To help consumers make informed choices, we include "made in a factory which also handles..." statements on our packaging. These statements highlight both the allergens intentionally present in the product and any potential low risk of cross-contamination during manufacturing."

Seems like this the issue is not being able to continually verify the gluten-free label. A bit like the "we cannot 100% guarantee warning" that the restaurants have to give us.

I will avoid "may contain" going forward in any case.

Thanks

My situation feels a bit unusual so I'd really appreciate some advice. I had about two months of being as itchy as it is possible to be (symmetrically on both sides of my body, arms, legs, top of my butt, and at my scalp line). I cannot overstate how itchy it was – it would wake me in the night, I was itching 24 hours a day and I was seriously questioning how I could carry on. After the doctor told me twice it was eczema (it wasn't) a really helpful doctor wondered about Dermatitis Herpetiformis and gave me a blood test.

These are the results:
IgA Antibodies to Endomysium: POSITIVE (no figures are given)
Tissue Transglutaminase IgA level 8.1 u/ml: Equivocal (underneath it says "Comment Consistent with Coeliac disease")

Now I'm waiting for referrals to both gastroenterology and dermatology. My first question is how long is this likely to be? I've been told to keep eating gluten until it happens, but surely if it's a long time it's better to stop damaging myself and just do a gluten challenge in the weeks before the appointment? I tried to ask the GP that but was told they have no idea and I just need to wait.

And then the other weird thing – the itching has cleared up and I haven't cut down on the gluten. Is this consistent with DH/Coeliac? Could it just have been a flare, or was it something else after all? I even tried to get a private appointment while it was bad, but I ended up cancelling because even that was weeks away and I was scared I'd waste the money if the lesions couldn't be biopsied anymore. I'm covered in scars but the itching has stopped (for about 3 or 4 weeks now) and I'm at least so thankful for that. I do feel a bit abandoned by the NHS though, considering how bad I was last time I spoke to the doctor.

So:
- How long is it likely to be before I get the gastro appointment and biopsy?
- Would you keep eating gluten until then, or stop until I hear I have an appointment?
- Considering the Tissue Transglutaminase IgA is only equivocal, is there any way this isn't CD/DH if the antibody test is positive?
- Is it normal for symptoms to come and go (flare) if you have CD/DH?

For what it's worth, I don't have any gut symptoms, but do have things like brain fog and fatigue which could theoretically be caused by gluten.

Thank you so much in advance!

Hey all,
Diagnosed with Coeliac since last year. Always went to classic chain restaurants when going out (pho/nandos/wagamama) but broke up with my gf recently and need to unfortunately restart the dating process.

Do you know any classy restaurants in London that would be good for dates? I’m tired of calling restaurants just for them to tell me that cross contamination is an issue.

Any help would be appreciated, thanks!

Hi everyone,
I’ve been lurking here for just over a year whilst I’ve been going through the diagnosis process with two of my children. My 15 year old recieved his endoscopy results today confirming a diagnosis of coeliac disease. We were seen immediately after by a dietician which was fantastic as I’d expected to be put on a waiting list. However the dieticians advice on may contains contradicts everything I’ve read over the last year.

He advised that they now don’t tell patients to avoid may contains anymore and they are fine to eat. I probed further and he said he went to a conference a couple of years ago which was attended by many professionals as well as coeliac uk, and they all agreed that the risk of being glutened by a may contain is very small and that companies mostly add those to cover themselves. He said there was a study that tested foods with a may contain and foods without them and the results were both similar. And as the may contain is voluntary for a company to add it could be possible for two different companies to make the same product on the same line and one would have a may contain rand the other would not.

I appreciate that guidance changes and of course being able to include may contains in my sons diet would make the transition easier and less restrictive, but after spending a year reading they should be avoided I’m reluctant to accept they’re okay.

He did say that they advise its okay to eat may contains as long as their bloods continue to decrease and if in a couple of years they were not within normal limits or just above then he would advise to cut them out.

Has anyone else received the same advice?

My other son is awaiting second blood tests to confirm his diagnosis and when he does I’ll have the opportunity to speak to his doctor and potentially another dietician so I’ll ask them about it but in the mean time I’d appreciate any advice!

I‘m recently diagnosed (2 weeks) and looking for some advice. I’ve heard/seen a lot of people say that their reactions to gluten get much worse after adopting a strict gluten free diet. I‘d be interested to know if this is people’s general experience? And what symptoms do you get?

I’m finding navigating cross contamination/eating out or on the go a bit overwhelming and it would be good to know what other people’s experiences have been!