Don't know what i did wrong last night

[tetloww]

Went in a hen do yesterday. Starting at 2 pm for drinks. 4 pm for cocktails and 3 course meal at 6pm. Ha my gluten free toast at 12 noon to put something in my stomach. Had a couple of drinks and 2 cocktails. ( this is mild for me but was being careful as it first time in ages for food an drink at the same time). Had garlic mushrooms for starter. Seabass rice and veg for main. And pineapple fritter (no batter) for dessert. Within half hour of eating I was ordering taxi to take me home. Once home straight to the toilet and still feel abit off this morning. Still learning but stuck on this one. Waitress ok,d all food ordering for gluten free x

[tmoxon]

Sorry you are feeling ill, just wondering whether the fritter was cooked in the same oil as the battered ones, basically it could be cross contamination, even when people know to be careful if they are busy I suppose its easy to forget and make a mistake and not even realise.

[tetloww in reply to tmoxon]

I have made fritters like this before and it's normally done In the syrup in the frying pan. Banana and pineapple they are lovely. I'm thinking more on the cocktails as I'm aware that some bottles of shorts have wheat in. ??? Rum. As they were all rum based cocktails. When I go out just drinking I'm fine. And if I go out for just something to eat as long as I'm careful I'm fine but the two together even tho I was really careful last night. I just really don't knowwhat iv done wrong

[Regalbirdy]

Hi.

I would have been nervous of the garlic mushrooms myself. If they aren't battered, then more often than not they are served in a sauce. I wouldn't put it past a chef to thicken the sauce using plain wheatflour without thinking.

Or they could have used a dodgy stock cube in your main course.

I also agree with tmoxon about the possibility of cross contamination.

Chalk this meal up to experience...!

Feel better soon.

[tetloww in reply to Regalbirdy]

Ummm yes thinking more along them lines as I was totally ok until half hour after eating. Lesson learned for me. Go in the kitchen and cook it myself haha. Normally takes a couple of days to get back on track so hopefully by tues I will be. Thanks for that

[Penel]

If you've had a break from alcohol, perhaps it was just too much for your system to handle?

[tetloww in reply to Penel]

I don't drink for a month and still no better. When I'm going out for food and drink I stop drinking about an hour before eating and drink water through the meal and for about an hour after. That's what I tried last night but ended up coming home early and also rushing to the toilet as soon as I got home. Annoying when I think I have come so far and thought I had prepped for the ok like I alway try to do an failed x

[pretender]

Half an hour is not a normal coeliac reaction to foods. Coeliacs usually suffer the following day (I do). To have that quick a reaction is quite possibly an allergy to something eaten/drank etc. I would be very inclined to look at what had been eaten/drank as I read that there was increased gluten intake in your meal overall.

[poing in reply to pretender]

pretender, I think there are a lot of celiacs who do have a pretty instant reaction to gluten. I'm not one of them, my reaction takes about 24-48 hours to get going and a week to substide, but that's just me, everyone is different. I've seen posts on this forum from people who know within 30 minutes that they've been glutened.

[Roxy-55 in reply to poing]

Yes, I've also had pretty immediate reactions sometimes. Yet at other times, it is an overnight thing. Maybe it's to do with how long you've gone without being 'glutened'. Or maybe, as pretender said, it's an allergy to something else. Personally, though, I feel it's all tied up with the gluten in some way. Sorry, Pretender ... I cn see your reply below. Formaldehyde(?!!!!) I always thought that was an embalming agent and used in industry .... it's certainly not something I'd expect to find in food.

[pretender in reply to Roxy-55]

Having taken over seven years to get this diagnosed I can state that what helped me was the Hypromellose in medications, I have had this tested, talked to me GP and Pharmacist and yet I am asking the manufacturer of Warfarin and MHRA if Hypromellose is in it as I am having usual reactions plus bad wheezing. As for food the alternative is Hydroxypropylmethylcellulose mainly bread type products.

Formaldehyde and its releasers are difficult to avoid the worst being cigarettes and exhaust fumes! It is surprising and little understood by GP's

[Regalbirdy in reply to pretender]

Pretender,

I am a coeliac - and I usually know in about an hour and a half if I have mistakenly ingested gluten. Everyone is different.

Kind regards,

R.B

[pretender in reply to Regalbirdy]

Hi regalbirdy, may I ask if you eat foods classed as "glutenFree" such as breads, prescribed foods etc.

[Regalbirdy in reply to pretender]

Yep - I have them regularly and normally I'm okay eating those products (the soya and dairy free ones anyhow). It's only when I make a genuine mistake I get issues. And as I said before, I usually know about it around an hour and a half later.

[pretender in reply to Regalbirdy]

Have you ever thought that your reaction might be more to do with overload of gluten?

[Regalbirdy in reply to pretender]

As I said before I have them quite often - without any problems. Mostly any glutenings I have occur when I'm eating out and somebody hasn't been as careful with my food as they promised to be.

[pretender in reply to Regalbirdy]

Since 2007 it is a very very rare occasion that I have gluten issues while eating out which is roughly once a week minimum and at different venue's from breakfast, lunch, evening meal and at carveries. not only in this country so it appears to me I have it about right with the Coeliac Disease and the allergy is subject to foods but learning that pretty quick.

[Regalbirdy in reply to pretender]

Glad to hear you are managing so well.

[pretender in reply to Regalbirdy]

In 2007 when I was first saw the gastro I excluded anything I knew that came from wheat and knew nothing of the GF diet then once diagnosed for the second time I came across the GF diet. From then on same symptoms kept reoccurring further investigations came up with the Formaldehyde Allergy (more food/beverage restrictions) and this in turn has produced Atrial Fibrilation as a result of my body suffering an allergic reaction and going into Panic mode (you are there but have no control) racing heart/high blood pressure/nose bleeds/skin rashes etc so because doctors do not listen I am placed on Warfarin which has again more food/beverage restrictions. These three conditions produce the same similar symptoms ie diarrhoea, tiredness, bloating etc so which one do I blame?

[Hidden in reply to pretender]

A couple of points here pretender, I think that you've been unfair with Regalbirdy by asking if she is overloading with gluten as whether RB eats codex wheat etc should not affect how quickly gluten affects her. With me it takes 6 to 8 hours before I get a full on gluten attack but my stomach churns and rumbles like a washing machine first which sets an alarm off for me. The other question we should ask is how does immodium instants work so quickly?

You also say about your formaldehyde allergy yet you are lucky in that you do not seem to be affected by floor coverings, especially newly laid carpets and vinyl. This to me shows how unique we all are and how when we have a immune issue our bodies react similarly but in their own unique way.

Lastly you're lucky that you've learnt to live with your issues so please try not to be so confrontational as 'we' all have our own issues and this is a support forum.

That's my 2p's worth.

[pretender in reply to Hidden]

Jerry in all fairness to all, I have experienced the same as most state which was put down to gluten and the same goes for the rash I aquired on my body etc which is put down to Dermatitis Herpetiformis by my GP by time and tests this indicated the allergy to be the cause. I have looked into the reactions that people claim and if you also do the same then you will also see there are four basic reactions and Coeliac Disease does not fit the short term reactions, I took this further and got my answers.

As for the Formaldehyde Allergy yes I do react to new floor coverings but avoid (the only treatment) My last Allergic reaction being at Enfidha airport Tunisia, a brand new building so spent the flight and trip home mostly sleeping. Now I go out very little because of exhaust fumes, smokers new builds as well as avoiding paints, cauliflower, grapes, mushroom etc etc.

My responses, questions are neither confrontational or patronising Jerry. I am a Coeliac like most on here but I have that under control and live a normal life as is possible and try helping others to find their answers and some like me maybe affected by the actual diet like you once claimed to me during our discussions.

[pretender in reply to pretender]

PS as you will see from my post "Ask the question you get the answer" I want to know why I am ill so it doesn't happen again and informing others gives them the opportunity to see any information I might provide, then its their option on what they do.

[pretender]

I think you will find that to react that quickly to an allergen is normally an IgE mediated response, Coeliac Disease does not fit into this type of response. I have had those concerns myself and had the IgE blood test for wheat which came back negative. My mediated response to an allergen is with Formaldehyde.(Patch tested 2013)

[exDancer]

All the same, unlike you pretender, I also react very quickly - within the hour anyway. I'm lucky in that I am usually OK within 24 hours, only feeling a bit 'wrung out'

[pretender in reply to exDancer]

I would advise anyone who reacts after eating or drinking anything to find out why by simply knowing what you have had and carrying out your own elimination trials rather than blaming something it might not be. Yes it does work it just takes time, should you google the types of reactions you can get ie types 1 to 4 you will see that Coeliac Disease does not fit into the immediate response type ie with in a short time.

[Hidden]

Some food could have been contaminated, or maybe it was just Mixing your alcoholic drinks???

[pretender]

Contrary to views or beliefs there is a carry over of proteins, gluten fragments in grain alcohols if you dispute this check out European Food Safety Authority putting gluten in the search box, you will find where gluten is hidden and to much for me so I would expect the reactions others claim.

[freelancer]

It might well be worth taking a look at the cocktail contents as mixers and things can have gluten in, even if you're OK with grain alcohol. Also if the problem was with the drinks it wouldn't be as immediate a reaction as everyone seems to be assuming. Or it could easily be contamination, depending on how clued up the kitchen is.

I'm another who can usually tell if I've had gluten well within an hour or so – I just start to feel a bit off, and it goes from there. I'm usually a bit better the next day then have the worst fatigue on the third.

[tetloww in reply to freelancer]

9 out if 10 I know within the hour whether iv had a drink or not. The diarrhoea comes after about 2 hours with wind An then the rib pain and right sided pain continues for a few days and feeling sick. I'm on day 2 now and it is all easing but havnt eaten since tea time yesterday. And left in a rush this morning so didn't plan my dinner. Dr tonight for hopefully a chat.

[pretender in reply to tetloww]

The right sided pain just under the ribs is when I have dairy products. Only diarrhoea I get is from my allergy, constipation from wheat, this luckily is less often these days.

[tetloww in reply to pretender]

Dairy products bloat me. Ie. can eat a 2 egg omelette not a 3. Can have cheese but spread out in the week now more than 3 times. Drink koko milk in tea. Wheat does cause my constipation that is why I had to come off it altogether as I ended up impacted. Not worked out the nausea yet it yhe cause of diarrhoea. Fed up with not getting answers

[tetloww]

Thanks you so much everyone for your replies. It seems we all have different reactions. Seen my own gp tonight and she is backing and supporting me all the way. Thinks it ridiculous that the consultant wants me to eat wheat and gluten for 4 months just to get a positive and has told me to see the dietician in Friday as planned but to go down the road of coeliac. This way now I will hopefully get the support of blood monitoring and whatever else is needed. I don't see the consult until 1st July with regards to all the tests I have had but go on holiday for the first time on my new dietary needs 5 days later. I'm hoping the dietician will help me with putting my weight back on that I have lost and also to raise my iron levels. Fingers crossed. Can anybody tell me what other follow ups coeliacs have to be advised with please

[tetloww]

Been to see go tonight an she is prepared to support me all the way even if consultant doesn't. She thinks it ridiculous that he has asked me to go back on wheat and gluten for 4 months just to get a positive. Seeing dietician of Friday to discuss and also help with putting weight back on that I have lost along with foods that will help with my iron levels etc. does anyone know what other things u need to monitor. I believe bones ??? Could be a problem if not absorbing nutrients etc. not seeing consultant until 1st July and go away 5 days later. Is it true that you can take things in suitcase if not going to place equipt for coeliac. And do they need to be prescribed or can I just chuck some bread in my suitcase etc. I'm getting so close now but still a lot to learn. Many thanks for all your answer

[Hidden in reply to tetloww]

Hi tetloww, a friend of mine had her boiler repaired and the engineer had been diagnosed as a coeliac by his GP. With no biopsy no referral to a Gastro the GP just said I know what's wrong with you you're a coeliac and you must avoid gluten.

I think there are advantages to having a formal diagnosis like follow up's to see that the villi has recovered, referrals for bone density scans and annual blood tests etc.

But you are not alone in being self diagnosed and if you know that gluten is making you ill and have avoided it for any length of time then a gluten challenge is even harder.

I think that what you have to do is make sure that you stay gluten free and do not feel that you have to justify your self diagnosis or feel that you have to convince anyone so that when you say to friends etc that you need a gluten free diet you say it with conviction and hopefully you'll start to feel better soon.

And in answer to this question, yes you can take gluten free food in your luggage and it's best that all food is unopened for obvious reasons, accept for a snack on the way kept in your hand luggage.

Whether food is from a prescription or the free from aisles is your choice. I'd put the bread in a food/lunch box rather than just chucking it in your suitcase LOL.

It is a steep learning curve and you have to take things one day and you're in good company on here as we're all gluten free for one reason or another.

You enjoy your holiday now.

[tetloww in reply to Hidden]

Haha. Yes I would keep the bread sealed I get the free from ciabattas and love them toasted. The place we going is where we always go and they knew I had a problem with food last year as they noticed my weight loss. Since then I have lost another stone. I know they are going to look after me and I'm already in contact with them for help and advice of if the are well up on gluten free. But it is Greece the land of the lovely bread haha and of course the lovely thick rich creamy sauces.omg there is no hope for me. Haha. I just wanted to put some bread in incase I need a snack at some point ( not just salad) it's always the things you can't have that you crave. Did you need a letter from gp to carry food ?

[Hidden in reply to tetloww]

I'd email your airline to see if they will let you have extra hand baggage as you need gluten free food and see if you need a letter confirming this.

And this might come in handy when out and about in Greece:

celiactravel.com/cards/greek/

[pretender in reply to Hidden]

It is good to see if any follow up to see if the villi have recovered which involves an endoscopy and biopsies, I had a follow up and told the Gastro I was having issues with the GF diet, I was offered a dietician. .persistence gave me a referral to a Professor in St Thomas' but never answered why the issue with the diet. After this I stopped wasting my time attending follow up's giving that gastro's time for Coeliac's who needed it.

[tetloww]

Ooo dear the above has now gone on twice cos I didn't think it had gone on the first time

[urbangirl]

Horrible experience for you. I just wondered if there was any glucose syrup in the cocktails? As you probably know glucose syrup can contain wheat. I have had really dreadful reactions to this stuff - usually a few hours later.

[tetloww]

I'm still struggling. Have tried my hardest to carry on eating but feeling so sick and bloated today. I tried eating little and often but every time I eat I just feel so sick. I'm going into the shattered stages now and really don't want to have to eat anything tomorrow. This is the worst I have been since last year. I have weddings and holidays to look forward to but am now thinking it going to be a bigger challenge than I thought it would.