Alcohol intolerance and behcets?

[emilyb93]

Happy new year all! I hope you are all doing well, or as well as you can be 😊

I have a question about Behçets and alcohol.

Apologies if this has already been asked, I did have a look but couldn’t find anything.

For years I have not been able to drink alcohol without being sick. On most occasions for example If I am out with friends for a meal/ few drinks, I can have a drink (one or two) and then need to be sick pretty much immediately. After being sick on most occasions I can come back to the table/ my friends and continue the evening (gross I know, but needs must - plus always carry chewing gum and mouthwash lol)

Regardless of how much I drink (one glass or five) wine or spirits.. trust me I have tried every type of alcohol available considering it may have been a wheat allergy ect ect. I am guaranteed to be sick and if I’m not I will have the most excruciating bloated tummy ache and have to leave. If I am not sick and leave it until the next morning my body cannot take the alcohol staying overnight and I am violently ill the next day.

I know the short answer is do not drink, however I am 26, try to be as social as I can when fatigue is not crippling me.. but I wanted to know if this is a behcets thing or something else unrelated that I have to research more 🙃

To note: I have been to therapy regarding behcets and brought up my intolerance to alcohol. Together with the therapist it was decided that if the ‘good night’ with friends or a celebration outweighs the trauma of being sick in the restaurant / club loo, I will drink but If not I will stay home/ not drink.

Any advice, help, info, experience shared would be much appreciated.

Best wishes,

Portia

[sam0511]

Tricky one this - what meds do you take? Reason I ask is I used to take Azathioprine - off now, and I found I had lactose intolerance, gluten intolerance and had to watch for salycilates in food and drink. Wine is a big no even now. Usually Gin and Tonic - and Gin is all the rage now. Now I have stopped I can eat dairy again - can eat bread etc - but wine and beer - no.

[emilyb93 in reply to sam0511]

Hi Sam, thank you for responding!! I take colchicine- I was on azathioprine a few years back too. I had been tested for allergies privately years ago but nothing major came back. I think I will try and do this again. All alcohol seems to be a no go for me at the moment!! Thanks again

[TomTomC]

I couldn’t drink for a few years, because my Behcet’s caused autoimmune hepatitis, I was about 27, when this happened, I went yellow and lost half my body weight, I couldn’t eat for a month or get out of bed. Prednisone was used to try to treat it. However my liver was affected for years after and I wasn’t able to drink for 3-4 years following this acute attack.

[emilyb93 in reply to TomTomC]

Tom, many thanks for responding!! I had no idea behcets could cause hepatitis! I am going to look into this.

Good point to mention regarding steroids.. I did not think of the impact of taking them for so many years. I have had my liver tested when taking steroids though and nothing major came back. I will need to check this out. Thank you!

[Saassii]

The lowest possible histamine containing alcohol with the highest filtration of microbes from fermentation that is tolerable is a gluten free vodka. I don't tolerate alcohols well at all either and find my mouth blisters horribly etc. But I can do a little gluten free vodka. BUT the mixer is equally important to have least reactivity. I mix with soda water or mineral water. Add a FRESH piece of lemon or lime, no chemical flavorings.

This option (The vodka) was recommended by Professor Janice Joneja through the mastocytosis society.

There's too much yeast and histamine in wines, beers and all the dark liquors.

I'd be very curious to see how this goes for you.

You could do a low histamine diet overall to drop your reactivity. If I eat high histamine foods and beverages I'll vomit and blister like while, sometimes haemorrhages. I've found low histamine, NO grain and NO molds, has been a tremendous difference to me. Ended ongoing UTI type aggravation and thrush issues, bloating etc. I derived all of this information from Professor Janice Joneja's Physicians handbook which I've studied extensively, along with Professor Theo Theoharides, Dr Sandeep Gupta, Dr Gill Carnahan, Dr Anne Maitland, Dr Lawrence Afrin and a few others.

Behçhet's is mediated by mast cell involvement. That means the immune system is over reacting to something/s environmental, it's generally microbial ie molds, bacteria, virus.... And those are all commonly found in water damaged buildings and their affected materials. You'll also find lower levels of those contaminates in dust. So keep your environment especially clean. No carpets. Put plugs into sinks when not in use to stop off-gassing from biofilms in drains coming into pollute indoor air unnecessarily. (One sink in an operating theatre and patients die of bacterial infection. Beds closest to the sinks on wards have the highest incidence of bacterial infection.)

[rooser1 in reply to Saassii]

i agree with vodka. and it has to be specific ones. I only work with potato.

[Papapickle]

Hi

I used to love a good drink every now and again but since my symptoms really kicked in I cannot tolerate alcohol. I wish that I could have a drink and relax like I used to but to do so causes the most horrendous hangovers and even just after 2 glasses of wine or spirit and mixer I feel the next day that it has wiped out the effectiveness of any meds. (I am not on any that interact significantly).

I choose now not to, my friends don’t really get it, but I feel so much better for not even on those awful days.

All the best.

[emilyb93 in reply to Papapickle]

Thank you for your message. I have the same experience and I am really considering not drinking at all.. my friends do kind of get it but then it feels really depressing to have to keep reminding some. I suppose this is just the story of my life now haha!

[rooser1]

how quickly do you get sick after consuming? can you give an example of what drinks? specific names?

I found that I work best with a potato vodka like luksusowa vodka or grey goose, tito's will give me a headache immediately (corn).

I use seltzer/soda water and a ton of lime. VERY refreshing, less likely of a hangover.

If im feeling spry, i wll do a good rye (which surprisingly is okay) with a diet cola, its rare though, i dont like galloping down artificial things like that).

wines, i can do very dry red and whites. i can only drink most local wineries around me, something about commerical made wines just really mess with me.

sorry for all the misspellings, my nails are way too long and i dont feel like fixing either of two.

[emilyb93 in reply to rooser1]

Thanks for your message! So I can be sick pretty much 10/15 mins after drinking.. I can also hold it and then be sick all night/ next day. So much so that it has make me vomit blood! I have tried every drink (I think) except beer as it is too bloating. Mostly I drink white wine or rum.. did try vodka and still the same. I can’t figure it out!! Thank you for the advice- and the comment about your nails made me laugh!!

[rooser1 in reply to emilyb93]

is it just with alcohol or with liquids or with other foods too?

[emilyb93 in reply to rooser1]

Only with alcohol, it has never happened with food. I did read somewhere that it could be that my body cannot break down the enzymes?! I need to do more research if I want to have a cheeky glass of wine!