Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Horrific alcohol reaction


Stephanie kate

Recommended Posts

Stephanie kate Rookie

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 

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



annlisa Rookie

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

Link to comment
Share on other sites
Ennis-TX Grand Master

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.

Link to comment
Share on other sites
strawberrymoon Apprentice

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. 

Link to comment
Share on other sites
kareng Grand Master

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?

 

Link to comment
Share on other sites
Jmg Mentor

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: 

Open Original Shared Link

Open Original Shared Link

and a doctor's answer:

Open Original Shared Link

Cheers :P

Sorry, best of luck!

Matt

 

Link to comment
Share on other sites
Stephanie kate Rookie

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 

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Stephanie kate Rookie

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

Link to comment
Share on other sites
Jmg Mentor
21 minutes ago, Stephanie kate said:

when I drink at home I'm fine!!! 

Ah....

4f952510825bb5c43c08058b110aa23a.webp

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.webp?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...

 

 

 

Link to comment
Share on other sites
cyclinglady Grand Master

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.  

Open Original Shared Link

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

Link to comment
Share on other sites
Jmg Mentor
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... 

Link to comment
Share on other sites
TexasJen Collaborator

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

Link to comment
Share on other sites
Stephanie kate Rookie

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

Link to comment
Share on other sites
ravenwoodglass Mentor
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.

Link to comment
Share on other sites
Stephanie kate Rookie

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 

Link to comment
Share on other sites
Ennis-TX Grand Master
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.

Link to comment
Share on other sites
Jmg Mentor
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

Link to comment
Share on other sites
strawberrymoon Apprentice

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!

Link to comment
Share on other sites
Awol cast iron stomach Experienced

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.

Link to comment
Share on other sites
Stephanie kate Rookie

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 :( 

Link to comment
Share on other sites
Jmg Mentor
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:

Open Original Shared Link

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 ciderOpen Original Shared Link

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 :)

Open Original Shared Link

Open Original Shared Link

Link to comment
Share on other sites
  • 2 months later...
Dawn-Ambrose Rookie

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.

Link to comment
Share on other sites
ravenwoodglass Mentor
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.

Link to comment
Share on other sites
michaelens Newbie

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....

Link to comment
Share on other sites
  • 1 month later...
JoanneC Newbie

Hi Steph:

I have had bad reactions to drinking inexpensively produced alcohol.  I believe the barrels that are used have traces of gluten.  I bought brandy and didn't realize on the label it says that Bourbon Barrels were used to age the brandy.  I just recently bought a Marsala to cook with.  In researching why it affected me so terribly, I read that some cooperages use wheat paste to seal the ends of barrels.  Live and learn.  

Blessings

 

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,810
    • Most Online (within 30 mins)
      7,748

    Niki111084
    Newest Member
    Niki111084
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      69k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • RMJ
      It will not undo all of the healing.  If it did, diagnosis of celiac disease would be much easier!  To have enough damage to see on an endoscopy requires several weeks of gluten ingestion. 
    • Jean Shifrin
      HI, I am new to this and am still in 'repair' mode, which I know will take time. But I'm wondering if anyone knows what happens if you ingest gluten after you have made a lot of progress in repairing your villi. Does anyone know if you just have a short-term issue? Or does an accidental ingestion of gluten derail all the work you've done and set you back to square one? Thanks.
    • Scott Adams
      Hydrolyzed wheat is wheat protein that has been broken down into smaller components through a chemical or enzymatic process called hydrolysis. This ingredient can be found in various products, including cosmetics, personal care items, and some food products. For people with celiac disease, hydrolyzed wheat is generally not safe to consume because it still contains gluten proteins, even in its broken-down form. Though hydrolysis reduces the size of these proteins, it doesn’t fully remove the components that trigger an autoimmune response in people with celiac disease. In food products, hydrolyzed wheat protein still poses a risk and should be avoided. With regard to the McDonald's French fries, the total amount of hydrolyzed wheat in the flavoring is small, and the amount that ends up in an order of fries is even smaller, and likely below 20ppm. McDonald’s states that the fries are gluten-free by ingredient and free from cross-contact with gluten-containing foods in their dedicated fryers. Third-party tests and statements by McDonald's confirm gluten levels are below the FDA threshold for gluten-free labeling (20 parts per million or less). So, while McDonald’s USA fries may be gluten-free based on testing, some people with celiac disease still approach them cautiously due to the past concerns and individual sensitivities.
    • trents
      Here is an excerpt from this article: https://pmc.ncbi.nlm.nih.gov/articles/PMC82695:   Studies have shown that various peptidases of fungal, plant, animal, or bacterial origin are able to hydrolyze gluten into harmless peptides. According to SDS‐PAGE pattern, proteolytic enzymes hydrolyze gliadins (Heredia‐Sandoval et al., 2016; Scherf et al., 2018; Socha et al., 2019; Wei et al., 2018, 2020). Bacterial peptidase (Krishnareddy & Green, 2017), fungal peptidase (Koning et al., 2005), and prolyl endopeptidases (PEPs) (Amador et al., 2019; Janssen et al., 2015; Kerpes et al., 2016; Mamo & Assefa, 2018) thoroughly degrade gliadin fractions to decrease gluten concentration and influence celiac disease. Aspergillus niger derived PEP (AN‐PEP) were assessed in clinical cases for their impact on modifying immune responses to gluten in celiac patients (Lähdeaho et al., 2014). Guerdrum and Bamforth (2012) reported that PEP addition in brewing technology decreased the prolamin and all of the identified immunopathogenic gluten epitopes in beer production (Akeroyd et al., 2016). On the contrary, many of the recent investigations which employed enzyme‐linked immunosorbent assay (ELISA), mass spectrometry, and Western blot analysis reported that PEP did not thoroughly destroy the whole gluten proteins (Allred et al., 2017; Colgrave et al., 2017; Fiedler et al., 2018; Panda et al., 2015), which indicates that beers treated with PEP are not safe for celiac disease patients. Anecdotally, this excerpt supports what we hear from the celiac community on this forum with regard to "gluten free" hydrolyzed wheat products and that is that some still react to them while many don't.
    • Scott Adams
      There aren't good studies that have been done on celiac disease remission, and I'm going from a distant memory of an older post here, but the longest remission that Dr. Stefano Guandalini from the University of Chicago Celiac Disease Center has witnessed was ~10 years, then the symptoms of celiac disease and the damage came back. The real issue though, is that you still could increase your risk of various related diseases and disorders by eating gluten, but again, celiac disease remission has not been studies enough to know what health risks you might face.
×
×
  • Create New...