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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Horrific alcohol reaction
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24 posts in this topic

Posted (edited)

Hey guys

im from the UK and this site is really helpful for me. I've been diagnosed with Coeliac disease (uk spelling) for 5 years now and I slowly became dairy intolerant, which makes sense and I live with this now... but now alcohol has turned on me. 

I don't drink often and I don't drink a lot (I used to in my uni years) but the reaction the next day (or same night) is horrific. 

I wondered if anyone else had this problem. 

I start with sweats and dizziness , then the stomach cramps cause chronic diarrhoea ... I then start to vomit until my body is empty .... this isn't the bad part. After my body is empty I go into a fit like state and cannot move walk talk or anything... the cold sweats start but I'm burning up. The stomach spasms are awful, I have to lie in bed flat with cold wet towels on my head and belly. I cannot speak or move for hours and feel so weak and unstable ..: this lasts all day and I can't eat or drink anything but I don't feel myself for three or four days. I avoid drinking but sometimes it's nice to go out and have some... am I alcohol intolerant??!! Does anyone else have this!? 

I obviously stick to gluten free drinks and have a very strict diet! Im a severe case! 

Thankyoy 

steph 

Edited by Stephanie kate
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these sound like celiac reactions  yes   ... basically avoid anything that causes the reaction   always

and find your self a great natural practitioner and   rebuild  your body .. Rest vitamins digestive enzymes and very strict diet 

Good Luck

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What did you drink and where did you drink it?   NOTE if you drink something at a bar using their glasses your asking for trouble BEER IS EVERYWHERE in most bars and a CC hell.   If it was at home and a non grain based liqour then I would be really concerned that it might just be alcohol. I personally can not really drink much of anything any more. I love rum, and I cook with it sometimes in sautes. I also have rum extract/butter rum extract/and rum emulsion I use in shakes, homemade keto pudding/ mixed into dishes. and even add some to drink to give it a rum flavor lol.

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Hi Stephanie, I'm also from the UK, I've found this site more helpful than anything we have! 

As already mentioned above, in my experience it could depend on what and where you were drinking. Gluten free food and drink isn't always (not usually) 100% gluten free as you may know, maybe you have become more sensitive to even a trace of gluten that is probably in gluten free food/drink. Is it possible you have a problem with corn, particularly high fructose corn syrup that is in a lot of alcoholic drinks? This was a big problem for me and the only alcoholic drinks I can tolerate are William Chase vodka and gin. I contacted the company last year and all their drinks are 100% gluten and corn free, made the old fashioned way with no additives, so maybe try their products if you like the occasional drink and see how you get on. If you drink out, not many pubs sell their products but I know Wetherspoons do and smaller wine bars may too. l was never a spirit drinker but I must say their products are absolutely lovely! Very easy on a compromised gut too considering it's alcohol.

I second the suggestion on seeing a natural health practitioner. I've recently started seeing a medical herbalist, as I've got nowhere with my now many food intolerances since going gluten free last year and I've noticed a difference in my health already. 

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I don't know what you drank or where.... so here are a few thoughts.

- sure, a dive bar might have dirty glasses and serve a cocktail in a beer glass?  But a nice reminder place, with a dishwasher, should be fine.  If it's a sketchy place, Stick to wine, then it's served in wine glasses that aren't used for beer or bottled ciders in the bottle.  

- ciders on tap might, just a slight chance, have an issue.  Because of beer on tap, mixed up lines, etc.

- you may have a problem with alcohol

- you may have issues with The  high sugar content of the drink.  I know I have similar issues if I drink serveral ciders of extra sugary brands

- are you positive it was a gluten-free drink?  Not this " redds Apple" pretending to be a cider - it's beer with apple flavor.  Or one of those " gluten removed " beers?

 

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Hi Steph and welcome :)

I'm yet another Brit, funny how the alcohol threads flush us out :D

I don't drink now but after a big night I used to get truly savage all day hangovers, much worse than those of my friends. They could include splitting headaches, vomiting, nausea, a 'fuzziness' in my head, sweats etc.  After I put the pieces together and went gluten free I had a 'big night' on cider only and the next day was a revelation. What I'd thought was a 'normal' hangover was, for me at least, anything but. With gluten out of the equation hangovers were a breeze! The difference was mind blowing and just one more example of how gluten had been messing with me over the years. So when I read your post my first thought was that there was some trace gluten contamination going on. However:

11 hours ago, Stephanie kate said:

I obviously stick to gluten free drinks and have a very strict diet!   

Obviously you've been at the diet for some considerable time now and know the score. I know Coeliac UK are firmly of the opinion that all spirits are safe but some (note some this a contentious one :D) members here will tell you they react to gluten based grain spirits for instance which distillation should render safe.  Then there's the dangers of shared lines if you're drinking say Strongbow in a pub as alluded to above. Lastly it its wine, there's the often cited but maybe apocryphal these days 'flour to seal the casks' possibility. Finally there's bar snacks, maybe a brand of nuts etc that you snack on that may have changed their production process? I'm sure you've thought of these already, but it may be useful if you post your alcoholic drink choices / bar snack of choice up here maybe someone will have some input?.  

The second thing which leapt out was:

11 hours ago, Stephanie kate said:

Im a severe case! 

Would you class yourself as super sensitive to cross contamination etc? Firstly that would make the cross contamination theory more compelling. You could test that out by having a drink at home under controlled circumstances to see whether the same issue arises? That could also answer the quantity question. Does one safe drink trigger it, two, three etc?

Finally, and this is one that I find difficult, knowing you have the gluten issue may lead you to assume it's that when it could be something else. I tend to attribute EVERYTHING in the world to gluten these days due to it being able to affect me in so many different ways. Crisis in Korea? Gluten. Russian tanks massing on the Ukrainian border? Check their wheat intake. Global warming? etc. So it may make sense to pursue some other ideas at the same time. Try: 

http://goaskalice.columbia.edu/answered-questions/suddenly-drinking-alcohol-makes-me-sick

http://www.steadyhealth.com/topics/very-abnormal-hangovers-thinking-it-could-be-allergy-to-alcohol

and a doctor's answer:

http://www.steadyhealth.com/medical-answers/abnormal-reactions-to-alcohol

Cheers :P

Sorry, best of luck!

Matt

 

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Hey Matt 

thanks for your reply fellow Brit! I this is very interesting... I am very sensitive to cross contamination... e.g. A sieve wasn't washed properly when I lived at my mums so when I had drained my gluten-free pasta .. I hadn't even eaten the dish before I started to pass out and go dizzy and hot .. calling for my bf and mum ( they had a great team going when I would have an episode) it's horrendous! 

The fatigue is something I imagine every coeliac suffers with! I have to nap a lot. 

Ok so the booze I drink most of is

-processo

-amaretto

-vodka, wine, cider (very rarely) 

when I drink at home I'm fine!!! 

I wonder if it's cross contamination from the bar or the level of alcohol?! 

I also had a jäger bomb shot on Friday (looked it up and a lot of people say it's gluten-free) 

it's a hard live but someone's got to do it!! 

Thanks for the reply! 

When you get poorly from gluten (and the other evil candidates) are you so bad you can't function and feel your body is about to snap? 

Kind regards 

steph 

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Wow guys just read all the replies Thankyou all so much!!! There are so many things you've all said that has triggered a light bulb in my little head! 

The glasses may not be clean!! 

I will put this to a test. One night I'll stick to bottles of cider (double checked are gluten-free) 

another I'll try the Gin or William chase vodka if I can find it! And see the effects.

if I loose many days due to these not working I'll see a practitioner and see what the deal is! 

Before I was diagnosed at Coeliac... I went to a herbalist who did a test and said corn is funny on my body!!! But then 18months later (when I became incontinant and lost a lot of weight) my bloods came back positive (after begging the docs and telling them it wasn't IBS) 

i don't tend to snack at bars on food but I must admit I never thought it could be the way it's served!! 

The humour and information has made me feel so much better 

thanks all 

xxx

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21 minutes ago, Stephanie kate said:

when I drink at home I'm fine!!! 

Ah....

4f952510825bb5c43c08058b110aa23a.jpg

Settles back, dons funny hat, smokes pipe, plays violin, injects heroin etc...

I think you need to treat yourself as your own science experiment. :) If you're ok at home with all of the drinks then you can almost certainly rule out alcohol intolerance and thank your bodies burgeoning super coeliac powers of gluten detection for the reaction. Clearly your powers have grown in the past five years young jedi...

TPlOssfMlwmbJck-800x450-noPad.jpg?148771

In which case maybe there's a drink you can order which would reduce this risk, maybe asking for the bottle and a clean glass, forgoing ice, straws etc, anything to simplify matters and reduce the number of contaminant variables. 

One thing I'd avoid would be 'mixers' from the shared line. Not because there's gluten filled drinks going through them, typically its just coke, lemonade and soda water, but because the nozzle sometimes dips into the drink that's being filled. Paranoid? Maybe, but I avoid them now and pay the extra for a bottle. 

A word on glasses. Most bars have a dedicated glass washer and they're good, to a point. I've worked behind a bar in the past and the washers are only on for a very short time, they can run up to 35 times an hour... I've seen lipstick on glasses from them and whilst the chances of contamination are probably slight...

Now if you're out for a night at different places, it will be very hard to work out where its happening. So my suggestion is to go out to one bar only and pick a decent one. Speak to a bartender or manager, explain to them just what a special snowflake you are :P  and get one definitely clean glass at the outset then keep it for the evening and just get it refilled. Pick one drink only and stick to it. I'd suggest wine as maybe its easier on the stomach than the bubbly prosecco and you can get the little bottles without any chance of contamination but that may be nonsense :)

See what happens...

If you're ok, then you have an answer. You've become more sensitive and your reacting to trace gluten.

*removes funny hat, discards pipe, hides syringe...

 

 

 

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If I am in a bar and it is super busy, I ask for a "to go" cup.  Why?  If a dishwasher is not being used (or demand is overwhelming it), bartenders are cleaning all the glasses the old fashioned way ( sinks, wash and rinse with disinfectant).  Good for killing bacteria I suppose, but maybe not for removing gluten traces.   No bar is going to slow down drink orders ($$$$$)  to wait for clean glasses from the dishwasher!   Is this all true?  I can not say.  I am just speaking from experience when I was barmaid 30 years ago before there were dedicated bar dishwashers.  

http://www.servicethatsells.com/blog/how-to-clean-a-beer-glass/

Even if this is "all in my head", I feel better clutching my "to go" cup and can relax.  😊

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35 minutes ago, cyclinglady said:

Even if this is "all in my head", I feel better clutching my "to go" cup and can relax

Sometimes that's almost as important as avoiding the gluten. There's times where I've not enjoyed myself because I'm more worried about the potential for getting glutened... 

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I will just share an experience I had..... I went to a steak house where there weren't a lot of safe options for me. So, I decided just to order a drink and eat later.  I asked the bar tender about how they made their margaritas - fresh lime juice, fresh orange juice and gluten free tequila. gluten-free all the way.  My husband went back to order for me and noticed that the bartender was juicing the limes and serving bread to the customers at the bar at the same time.  I would have totally drank that margarita had he not seen him doing that.  I decided to skip the margarita because of the high chance of CC

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JMG I have never laughed so hard! This was the best epic comment I've read! Thankyou so much! 

Your all teaching me so much! Love the 'my glass to go' idea!! I will be adopting this... can't believe the mucky glasses we must be drinking from! Shocking! 

Im still baffled how so many people don't understand cross contamination i.e. The crumbs on the work surface to cut the lime for your tasty beverage! 

Your all amazing Thankyou x

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On 4/30/2017 at 3:34 PM, TexasJen said:

I will just share an experience I had..... I went to a steak house where there weren't a lot of safe options for me. So, I decided just to order a drink and eat later.  I asked the bar tender about how they made their margaritas - fresh lime juice, fresh orange juice and gluten free tequila. gluten-free all the way.  My husband went back to order for me and noticed that the bartender was juicing the limes and serving bread to the customers at the bar at the same time.  I would have totally drank that margarita had he not seen him doing that.  I decided to skip the margarita because of the high chance of CC

This remended me of something. In some places the waitress station also has the bread for the tables. The waitress station also can have the water pitchers and glasses. I had consumed almost a full glass of water at one of those establishments before I noticed the couple of crumbs floating in the glass.  Since then in a restaurant or bar I always try to order something in a bottle or if drinking wine I ask them to give the glass a rinse under running water before they pour my drink.

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Morning guys! 

Ok project alcohol experiment - last night I had three bottled ciders with straw! Kept to the same straw and this morning... you guessed it!! Poorly lady!! 

Gluten trace couldn't have been the problem... so perhaps the sugar levels or just alcohol in general! I shall try Gin next time... same glass and mixer and see how this changes things! 

Any advice or thoughts? 

Steph 

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1 hour ago, Stephanie kate said:

Morning guys! 

Ok project alcohol experiment - last night I had three bottled ciders with straw! Kept to the same straw and this morning... you guessed it!! Poorly lady!! 

Gluten trace couldn't have been the problem... so perhaps the sugar levels or just alcohol in general! I shall try Gin next time... same glass and mixer and see how this changes things! 

Any advice or thoughts? 

Steph 

A Distilled gin should be safe, but perhaps you should have a non grain based alcohol? Like a rum which is made from molasses, unflavored just to be safe. I use Admiral Nelson, or Bacardi if I have to in cooking alot. Used to drink them quite a bit before some other gut issues came up.  My old personal favorite used to be 1-2 shots of rum in a root beer, cream soda, or orange soda.....OH how I miss thee.   -_- I make a substitute now with extracts and mineral water, but not quite the same.

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2 hours ago, Stephanie kate said:

three bottled ciders with straw!

Hi Steph,

Sorry you're not feeling too good. 

What was the brand of cider?

Matt

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Hi, sorry you're not feeling well. Just thought I'd mention, if you do have a problem with corn (as you mentioned previously is a possibility after you saw a herbalist) and you decide to try gin, I'd be careful of what mixer you have. The only mixer I can have these days is soda water due to corn being in everything. A few weeks ago I went out and the barmaid gave me tonic water with my gin instead of soda water and within minutes I came out in a rash all over my neck and chest and had a headache.

Good luck!

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I still have difficulty drinking  alcohol since my 2016 gluten challenge. I can't even do wine which was just fine and a go to drink prior to challenge. I can't even do watered down wine. My gi tract dislikes every attempt. Not sure if I'll ever be able to imbibe again. 

I hope things improve for you soon.

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Thanks for the replies guys! 

It waa koppaberg strawberry and lime flavour. 

It may be corn or sugar 

I'm thinking it may be time to hang up my drinking shoes :( 

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2 hours ago, Stephanie kate said:

Thanks for the replies guys! 

It waa koppaberg strawberry and lime flavour. 

It may be corn or sugar 

I'm thinking it may be time to hang up my drinking shoes :( 

This site mentions a couple of other possibilities before you have to throw alcohol out entirely:

https://www.healthcentral.com/article/understanding-alcohol-allergy-and-alcohol-intolerance

I was asking about the brand because I was thinking about sulphites and sure enough: 

Kopparberg ... Contains: Sulphur Dioxide/Sulphites ...

Histamine was another, apparently pear cider has high levels

You could try a low sulphites drink next time and maybe something without the flavourings and sweeteners that you'd get in a Kopparberg type drink?

Oh and check this guide out, for the cool cartoons if nothing else :)

http://www.wikihow.com/Tell-If-You-Have-Allergies-to-Liquor

http://pad2.whstatic.com/images/thumb/3/39/Tell-If-You-Have-Allergies-to-Liquor-Step-6-Version-2.jpg/aid1392330-v4-728px-Tell-If-You-Have-Allergies-to-Liquor-Step-6-Version-2.jpg.webp

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Posted (edited)

Personally, when it comes to alcohol, it depends on the type i have consumed.

Wine: gives me a migraine due to salycic acid content

Lager: gives me gut rot

Vodka (triple distilled) is find as long as I dont mix it with anything nasty like sugar or aspartame laced beverages (I usually opt for fizzy or soda water).

And so on and so forth.

Edited by Dawn_Ambrose
Repetition.
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On 7/12/2017 at 5:07 AM, Dawn_Ambrose said:

Personally, when it comes to alcohol, it depends on the type i have consumed.

Wine: gives me a migraine due to salycic acid content

Lager: gives me gut rot

Vodka (triple distilled) is find as long as I dont mix it with anything nasty like sugar or aspartame laced beverages (I usually opt for fizzy or soda water).

And so on and so forth.

Isn't lager a form of beer? If you are celiac you shouldn't be drinking lager unless it is gluten free.

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I live in the Paso Robles (Central CA Coast) Wine Region and know a great many people in the winery business. My wife has always been super sensitive to wines, until we learned what to look for. Sulfates - killer #1 for my wife. Like mentioned in posts above, they give her almost instant migraines. The problem is the wine maker. All wine has sulfates to control spoilage, but look for a wine maker that strives for high quality and as natural as possible. If they pop the barrel, they need to add more sulfates to control it from spoiling. So some wine makers just DUMP sulfates in so they don't have to be careful and worry. 2nd - what is it aged in. We have found that stainless steel aged wine (yes, some reds are starting to be processed that way) or whites are safe. If it is aged in American Oak, the tannins are too much for my wife. French Oak is the safest for her; low in tannins. Since she has learned this info, when we go tasting, she is careful to see how it feels in her mouth & throat; that is the ONLY way she can go to any winery. Funny, but when we eat out (before I was celiac disease), we would order Italian or French reds; we cannot risk the issues I mentioned. So now, if we go tasting, we will ask! Often, we are viewed as wine snobs, but if it's a question, she will taste, but spit it out (proper wine tasting method). For me, mixed drinks are ALL out, I can't risk it. So just stay save everyone, hope this can help a few of you....

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