So, i’m two weeks diagnosed via blood test and endoscopy biopsy.

Didn’t really have any symptoms until about 3 months ago, when i started to get stomach pains, Although think i may have just been ignoring symptoms that came and went over the last few years.

As I’ve come off the dreaded gluten, symptoms seem to have gotten worse –
nausea, cramps, bloating, night sweats, tiredness, major anxiety, constipation etc.

The consultant said 4-6 weeks and i should feel like a new man (i’m 34!)

Struggling a bit at the moment – any other Coeliacs care to share their experiences?

well your STW user name will need to change for a start.

How about nobeer247 or deliciousglutenfreealternitivebeer247?

solarpowered, occasional poster on here, is coeliac. Doesn’t seem to stop her doing much.

My mother-in-law is coeliac.

She has adapted pretty well to it and most restaurants/pubs are more aware of it & provide alternative menus. She rarely has trouble finding things to eat when out and about.

If you like ‘bready’ stuff then it might be a pain – as I understand it, the alternative options are getting better, but still not great.

They are also pretty expensive.

Regarding the beer thing…..this is quite interesting

http://www.nenevalleybrewery.com/NVB/Home.html

What are you struggling with??
Physical symptoms will go and (I believe) you’ll feel so much better!

Obviously some stuff has to go. Some stuff is easily substituted.
Get used to reading labels on food. As an eg some walkers crisps flavours have wheat in some don’t
GF bread isn’t brilliant, genius seems to be one of the better ones

Get the ceolic uk food checker app, its dead handy.

Eating out can be a bother. Currys and Chinese food can be dodgy, spices may have been bulked out with wheat.
That said loads of places have become GF savvy and either have a good range of options of a totally seperate menu
We cook loads from scratch, it’s much nicer and safer!!

I’ll point solarpowered over here for some first hand pointers..!

I’m Coeliac but diagnosed since I was 8 (I think?) so I’ve been eating gluten free for years now.

It’ll probably take a while to get used to the new diet and checking everything before you eat but it’s not so bad once you get used to it. Hope you like potatoes and rice 😉

The range of gluten free stuff you can get nowadays is huge compared to just a few years ago.

It used to be a nightmare with some foods as you never knew if “starch” was wheat or corn or something and just had to avoid certain foods unless you had the Coeliac Society’s little booklet. For example, Lilt in cans was ok but Lilt in bottles contained gluten but the ingredients looked identical (they added wheat starch to make it look cloudy. It’s ok now!).
Now thanks to EU regulations *cough* everything is labelled in the ingredients and it’s much easier.

I think i’m basically in withdrawal from gluten!

I felt fine yesterday, but woke up last night a big sweaty mess and didn’t sleep very well – feel crap today. The anxiety is also doing my head in!

I also have quite a lot of stress with work at the moment which isn’t helping

We do cook from scratch most nights, and i have joined Coeliac UK and downloaded the app onto my phone.

I’ve lived with coeliac disease for 7 years, during which time the variety and quality of gluten and wheat free products has increased dramatically (NB make sure everything you buy is gluten AND wheat free – the two are different and you are intolerant to both). After trying loads of different products I’ve found the Tesco Free From range to be best in terms of bread, pasta and cereal. I don’t really eat cake and biscuits but bought a Tesco g-f chocolate cake for my partner’s birthday which was yummy. Always check EVERY food label as ingredients such as malt barley and wheat can turn up in the most unlikely things – a lot of condiments contain either wheat or malt vinegar and even things such as Mars bars and Pringles are out because of the malt barley in the Mars nougat and Pringles are coated in flour. However, there are always alternatives and not necessarily the expensive gluten free stuff. As for the all important alcohol, Daura g-f beer is palatable, whilst Wold Top Brewery do a great range of g-f real ales including a fab porter. There are loads more to choose from, these just happen to be my favourites.
Regarding eating in cafes and restaurants, I simply don’t trust the kitchen – stating a dish is g-f is all well and good until the chef uses a knife/ board/ pan that has been used to cut or cook something containing wheat. Even someone failing to wash their hands in between arranging the bread rolls and putting your salad on the plate will cause problems (and once wheat or gluten has re-entered your system it takes around six weeks for your gut to recover).
I’m sorry if all this sounds drastic; you DO get used to being ultra-careful (eg don’t put your g-f bread into a toaster used for normal bread) and you WILL feel like an utterly different person once your system has recovered from trying to cope with something that is causing so many problems. Good luck!

http://www.firstchop.co.uk/en/

I also got diagnosed via blood test and biopsy about 2 years ago (I went to the doctors because I was feeling cr*p but also turned out I was hypothyroid which was the main issue). I am pretty much an asymptomatic coeliac so I get no upside for avoiding gluten but apparently I have to. So I came off it – was pretty easy tbh with the wide variety of GF options available.

Plus side – end up eating way less bread and cr*p junk food so keeping weight off easier and requires less willpower. I actually prefer GF pasta.

Watch out in restaurants – sometimes they forget you have ordered the GF option. If a pizza tastes good then they have probably forgotten/missed that you ordered GF version.

bex – Member

(NB make sure everything you buy is gluten AND wheat free – the two are different and you are intolerant to both)
Not necessarily true – I use Juvela gluten free wheat starch all the time in home baking and it’s fine for me and most coeliacs. This may vary for some.

Similarly gluten free oats will be fine for most but not others. Try them after you’ve been on the diet for a while.

My wife’s young sister is super sensitive, the tiniest amount of gluten will give her stomach pains. She has to get milk from cows that are not fed on wheat based feed! She was ok on this wheat starch at first but does not use it now, I believe she gets a slight reaction. She’s perfectly fine with oats.

Not Coeliac however I’m allergic to eggs! All the foods i used to enjoy i can no longer have – well i can but its painful and explosive 😀

Recently i’ve picked up one of those Nutri Ninjas and smoothies are pretty much all I’m having at the moment. Trying to keep them as green looking as possible. Having fun as i go along creating my own mixtures. Some of it is bloody awful but others are great.

I bring you gifts:

And for baking, glutafin select is imo the king of flours. It doesn’t handle quite right but better than anything else I’ve tried.

Now you don’t need to go to gluten free substitutes- you can just have an ungluteny diet. But it’s way easier to go straight to substitutes, especially at first and these are good. The peroni tastes the exact same as the real thing frinstance. There’s shitloads of good gf beers especially if you like IPA, these 2 you can get in tesco. Actually in general Tesco’s gluten free section is excellent.

As a mountain biker, get used to nakd bars and baked potatoes. Ultimately, I do make some compromises on the diet- I know I can drink most normal lager, and eat chips even if not cooked separately, I shouldn’t but I’ve made an informed choice there that I want some normalcy from time to time, ymmv. (a lot of commercial lagers are more or less gluten free anyway, it’s just that their quality control isn’t good enough to guarantee it)

bex – Member

Similarly gluten free oats will be fine for most but not others. Try them after you’ve been on the diet for a while.

Yeah, this is complicated. Avenin (oats) is a similar protein to gluten (wheat and other cereals) but not the same, so coeliacs by itself means you can eat pure oats, but some coeliacs are also oat intolerant. Also there’s a huge amount of outdated info on this as oat/wheat contamination used to be so universal that it was thought most coeliacs were oat intolerant.

Honestly, it doesn’t make much difference at all to how I live. I miss proper chinese food, the sainsburys gluten free pork pie was a life changer 😆 It’s more expensive to buy gf food but you may be able to get good stuff on prescription (I just get tons of glutafin select flour mix). Deserts are a bummer when eating out…

If you want a simple choice to grab food, head for a weatherspoons, they have a decent gf selection including deserts and beer. (the estrella galicia is very nice, it doesn’t turn up much in other places though)

Actually in general Tesco’s gluten free section is excellent.

Yep, already been hitting the Gluten Free section in Tesco.

Hopefully everything should settle down in the next few weeks, i think i’m being to impatient to expect everything to go back to normal straight away!

Ultimately, I do make some compromises on the diet- I know I can drink most normal lager, and eat chips even if not cooked separately, I shouldn’t but I’ve made an informed choice there that I want some normalcy from time to time, ymmv.

I assume you are Coeliac Northwind? Do you not get any symptoms if you drink normal lager?

Aye, coeliac and nope, I have a little wriggle room.

Now this is where it gets shady… I had no noticable symptoms before I was diagnosed (by blood test then biopsy). After a while on the diet I lost most tolerance so I can’t, frinstance, eat a slice of normal bread without feeling sick as a dog. But I can still deal with low levels.

That’s a sneaky temptation as well as a useful thing. Ultimately like i say I’ve made a personal decision, that once in a while I’ll go off it. Not often though and the rest of the time I’m strict about it. This isn’t good practice medically but like I say, it’s a slice of normalcy for me. And since I’m a hard-ass about it all the rest of the time it’s probably still in the ballpark of other people’s accidental misses.

(I didn’t tell my doctor this, and every time I go to the clinic they do the blood tests and I had another biopsy a while back and they all reckon I’m doing great with the diet 😉 )

Beer is complicated because like I mentioned, commercial mass produced lager generally has tiny (ie officially GF- under 20ppm) quantities of gluten in it, there’s been a fair amount of independent testing done of this. BUT, you just can’t rely on that- the tested bottle might not be typical, or might be from a different brewery. Basically QC and consistency is the issue. I’m fairly confident that if I get a peroni or a stella in a pub it’ll actually be gluten free but it’s still a risk, just one I’m personally OK with. For around the house I buy GF even though it’s more expensive. (actually, I have to say I’ve got much more into beer, going through the process of taste testing and hunting down brands, I never would have got excited about a new beer release in the past…)

This stuff is full of nuance and personal decision. Of course, the best advice is 100% avoidance and safety and I won’t recommend anyone do anything else. But it does work for me. I’m probably 99% avoidance…

The Westerham brewery do a nice range of Gf beers including a stout.

Now this is where it gets shady… I had no noticable symptoms before I was diagnosed (by blood test then biopsy).

This sounds like me – no real symptoms for 34 years then boom, a couple of weeks of stomach ache and i’m coeliac!

Did you have any kind of withdrawal symptoms from the gluten when you cut it out?

This is what i seem to be having trouble with at the moment, especially in the mornings, along with a bit of toilet anxiety!

gf is a strict coeliac – just needs managing and deffo has got easier over last 10 years and I’ve learned along the way – wheat flour coating on frozen chips to stop them sticking together arghhhh!!!!!!!!!!!!!!(see comment about labels below)

all supermkts(inc aldi where I am) have a (getting bigger all the time)free from section/range now(*Tesco bread as good as genius according to gf), just learn to read the labels carefully as there are quite a few standard products you can have e.g some sainsbury sausages are ok, Heck etc you just need to be careful when choosing

https://www.coeliac.org.uk/home/

top tip – if they ‘glaze over’ or immediately say ‘no problem’ in a restaurant or pub I’d walk.

I can tell you some stuff now .. and you can try or not ..

1/ Coming off is the worst part ….
Gluten (or more accurately the gliadins that is the amino acids that make gluten, and the other prolamines in grains (prolamine = collective term for wheat (gliadin), barley (hordein), rye (secalin) …) meaning they are water soluble amongst other things …

They are also exorphins meaning they bind to the opiate receptors
As such they can alter mood but they don’t quite bind properly…. (like endorphin, morphine, loperamide (immodium) and when your immune system mis-identifies these they are attacked and damage the same receptors

Anyway a buch of researchers and specialists at Nottingham published all this but gastro’s don’t want to ‘lose’ the disease so most ignore it. It is also of great interest to the company’s that are owned by the same directors as the Coeliac UK charity… who last I checked the charities accounts got fee office space and git paid for expensive consulting. (Lets say they have a vested interest in SELLING a brand)

Anyway … the point is coming down/off is always the worst part…. and can take a week or even 2… (with episodes decreasing in frequency after 2-3 days for me)

How MUCH gluten makes little or no difference to me (YMMV) … I can accidentally have a single breadcrumb knocked onto my plate or someone wipes a plate with the same cloth as say Soy Sauce or sticks the dishes/cutlery in a dishwasher together … all makes no odds… or I can have beer and pizza…. and be no more ill. The whole withdrawal may last longer, it’s difficult to say..

In practical trams this means I avoid being ‘glutened’ altogether … if you frequently chance it (e.g. eating out) or just stuff you don’t know but says gluten free on the label …. (e.g. anything coeliac UK have been paid to pretend it’s gluten free and endorse)

So to put it simply .. I avoid being glutened by accident …. every time I have to go through the withdrawal part which is the part really sucks….

2/ Given it take a week or two weeks to go through withdrawal overlapping means your constantly in withdrawal… hence I really try and avoid this.

3/ If you are eating products labelled GF then you are mostly likely eating gluten … trace amounts but still gluten and your immune system will react anyway … in other words it’s a bit like saying you are half pregnant or half got flu…. you sort of are or not.

This is unpleasant … because you are constantly in withdrawal.

So the best thing is to completely ignore anything labelled as GF … at least for 1-2 months ..
Get completely clear then try things one at once … e.g. specific packaged products

If you are sharing a house / kitchen you will similarly get caught out.
Crumbs, dishcloths etc.

(Oh and you obviously need to change your toothbrush from before)

Has anyone with coeliac had any experiences w/regards to taking probiotics (specifically Kefir)?

mum’s been coeliac for 70 years, since before it was officially a thing. Spent the first 5 years eating nowt but bananas really, and helped get coeliac society going properly in the 80s (there’s a reason it’s in HW). They used to produce a little booklet saying what was gluten free and what wasn’t (one i remember growing up was mini mars bars were okay, but normal ones weren’t).

It’s a lot better than it was (my grandmother (mum’s MiL) used to ask if cakes/biscuits/puddings were made with her ‘special flour’ and if so she’d go without). We were the only family to make pizza, never eat pasta etc. A decent bread maker has made a lot of difference to her.

It does really depend on how bad you are; you need to find your tolerance. It’ll take time.

As for beer, just rediscover the delights of craft cider!

Just a thought……. when I was diagnosed as allergic to wheat, I was told that a problem with lactose often went hand in hand with it. I was feeling really bad in a morning after having porridge, so switched to Lactose free milk and that seemed to solve the problem. I’m OK with a couple of cups of tea with normal milk, but other than than I stick to Lactose free and it seems to make a huge difference………maybe worth a try as these things are rarely as simple as they seem.
Good luck with the GF, I’m a couple of years into a wheat/gluten/dairy free diet, and apart from the occasional craving for a Staffordshire Oatcake or a proper portion of Chip Shop chips, it’s fairly easy to eat what you fancy. But knowing that getting it wrong can have serious health issues definitely helps!

Diagnosed gluten and wheat intolerant last year, proper careful food management, cook everything from base ingredients and I’ve managed to get my weight up from a very ill 9 stone to 12 stone 9lbs.
Didn’t feel cold at all this past winter, feel much stronger in myself.

Take your time, there are still lots of nice treats available

Our son was diagnosed at 18months old.
He was so poorly, after 6 weeks of constant vomiting and nursing a half lifeless child we ended up going to A&E in an attempt to rush through a future pediatric appointment that we were waiting for..

4 days later in hospital he was diagnosed as Coeliac.
It took him about 3-4 weeks to get ‘normal’ when on a strict GF diet.

He has been on a strict GF diet now for 4months. And now the effects of only a tiny piece of bread (given to him by another child at nursery) is disastrous. Vomiting, stomach pains, retching. It last about 3 hours but I imagine it lasts longer depending on the amount he ingests.

What I really wanted to add before I started hijacking with my own experiences was that we were told by the gut specialists at hospital that;

There is gluten NO tolerance level, it is an auto-imune disease, simple.
Do not test ‘normal’ food to see if you can get away with it. Even though you may feel fine (if you are lucky) the damage to your intestines/gut is still happening. The long term affects include early bone and joint issues among a host of other things.

So its a life changing diet change. People who think they can cheat it once in a while are causing longer term damage. Or they are not actually suffering from the Coeliac disease at all, rather more of a intolerance/allergic reaction to gluten. maybe.

There is a trigger to the faulty gene, childbirth, major operations, chronic stress, infections; thats why sometimes people only start to see the symptoms in later years.

You will be fine Beer247. Loads of support out there and the range of products is getting bigger.

Good luck with the regime beer. Facebook has been a massive help for me and your first group to follow is Beer4Coeliacs closely followed by ‘Coeliacs Eat Out Too’

With regard to bread, Sainsburys have started selling fresh baked GF bread in quite a few stores and it is fantastic.

I was diagnosed about 20 years ago now. Back in the day you had to get Gluten free products on prescription as there were next to no staples in the shops. Now its much easier. Thanks to Coeliac UK (worth looking into) labeling in shops and restaurants is getting much better, and the product range in supermarkets is excellent.
Loads of good advice above – so to add something new – holiday in Ireland. They have a very high diagnosis rate and so its the easiest place I’ve been to eat out.
On the plus side its the only auto-immune disease with a known trigger, so this allows you to eliminate it from your diet and become completely well again.

What I really wanted to add before I started hijacking with my own experiences was that we were told by the gut specialists at hospital that;

There is gluten NO tolerance level, it is an auto-imune disease, simple.

Wow are you in Nottingham ?
My experience is most specialists are GI specialists and dismiss any evidence that it affects the whole immune system. .. Nottingham had a special research group with neurologists and immune system experts rather than gastro-enterologists but no-one seems to have listened or read the papers …. The group leads was a guy with a Hungarian name I can’t remember right now) In fact when the papers on endorphin receptor damage were published Coeliac UK countered with a crossed grain article saying coeliacs only get depressed because of the restriction … (completely ignoring the published papers as if they didn’t exist)

This is the default stance (or last time I bothered reading their lies) of Coeliac UK … the directors of which owned their own companies that (last time I check the Charity accounts) get free offices at Coeliac UK and sell consulting to Coeliac UK and then license any company to use their logo that they copyrighted.

It also flies in the face of the WHO CODEX ALIMENTARUS (which is again paid for by the food industry) that claims “safe levels”

I can tell from my experience that there is NO SAFE LEVEL for me…. it doesn’t matter if it’s a single breadcrumb or even just washing the plates and cutlery with the same dishcloth or in the same dishwasher.

Further going back to the OP’s post…. anyone who is eating labelled GF is eating gluten… and hence they have NEVER been GF for longer than a day by accident but the withdrawal is worse than the actual…
This is the auto-immune and neurological part where your endorphin receptors are damaged so you feel depressed (as your body can’t actually make you feel happy) and the frequent bathroom trips…

A healthy person should suffer no more than 3-4 bouts of diarrhoea in a YEAR…. but many people say they are GF but have several per week/month

The reason I believe is they are in CONSTANT withdrawal and their IgG/IgA immune system is constantly active against gliadins because they have never been properly gluten free.

Do not test ‘normal’ food to see if you can get away with it. Even though you may feel fine (if you are lucky) the damage to your intestines/gut is still happening. The long term affects include early bone and joint issues among a host of other things.

I go further than that.. the problem is you have to test inaccurately labelled food as well. (i.e. the food that is <20 ppm so is labelled s GF… not to mentioned the shared production lines and one product being run on production line that previously had a gluten product and the deliberate ignorance of manufacturers who find it more convenient not to ASK the source of something like Maltodextrin or starch so they don’t need to delcare it.

The biggest problem is you can’t do that unless you are starting from being gluten free so many people might say they tried a lager etc. (obviously not kids but just an example) and they were NO WORSE… but no worse compared to getting trace gluten anyway….

So what is FEELING FINE when you have no baseline?

So its a life changing diet change. People who think they can cheat it once in a while are causing longer term damage. Or they are not actually suffering from the Coeliac disease at all, rather more of a intolerance/allergic reaction to gluten. maybe.

Welcome to my world being diagnosed late … and initially believing the then 200ppm limit.
I have peripheral neuropaphy which is not bad in itself… you can stick a screw (or nail or bit of wood) through my hand and out the other side and I barely feel anything… My lower legs are a max of scars s I can’t feel when they are being cut…. I can snag brambles etc. finish the ride and be leaking blood without even feeling it.

I also have some “no-name=for-it” problems with connective tissue. (My rheumatologist said he was treating me like other coeliac patients he’s had but can’t really say why or understand.. just what worked for other coeliacs with the same problems)

I’m nearly 50 so I have to live with this ..

I’d massively encourage anyone diagnosed or even suspecting to simply take a month and go completely GLUTEN FREE ….. don’t believe labels…. and just eat FRESH naturally GF

AFTER 1 month you are in a position to then TEST what is supposedly GF…. and perhaps you will find you can tolerate oats or can tolerate beer …. but at least you will know what actually being GF is and you are not creating cumulative damage to your body that will never be repaired and affect the rest of your life.

regarding tolerance, I have always followed the advise that coeliacs should treat gluten in the same way they treat rat poison – i.e. a little bit might not kill you but it definitely isn’t good for you.
Long term persistent inflammation is linked to a number of cancers so best avoided.

regarding tolerance, I have always followed the advise that coeliacs should treat gluten in the same way they treat rat poison

The difference is many people take Warfren every day just to stay alive and small amounts don’t do any damage unless you have vitamin K deficiency.

On the other hand there is no lower amount of gluten that does not cause damage.

The literature is at least agreed on this as it is in how it is worded. Even the “a little gluten is OK” papers that are funded by the food industry word this as “does no more damage than people [s]who claim to be but are not[/s] on a gluten free diet.”

These papers gloss over how they determine that the control’s are actually gluten free. (Which is they say “oh and you are on a gluten free diet aren’t you” – and the papers simply take for granted that the control group must be 100% GF when they know they are not … but they just tick the box their sponsors have asked to be ticked.