I was told yesterday I have behcet's - Behçet's UK

Behçet's UK

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I was told yesterday I have behcet's


am unsure what that means for my family and the future but I guess that will come to light in time I am going to be starting new treatment but also carrying on with others too so yet more pills to take every day :-(

one thing I was wondering is there anyone who has had to go dairy free and could help me out with what I can eat as I am not enjoying food at all. All I seem to want is the things I cant have :-( which gets me to the point where I get stressed and upset I have eaten dairy food since being born and now my body decides it don't like it any more :-(

Thanks Nicky

3 Replies


Firstly welcome to this site. Being told I had Behçet's was emotionally difficult so I can totally empathise with what you must be going through right now. Part of me was relieved that I actually had a diagnosis as it took about 4 years of going round the houses at the hospital before I got diagnosed.

I can't tolerate dairy now either and know all too well how difficult avoiding dairy can be. I tolerate soya and there are lots of soya products out there now. Swedish Glacé do some yummy dairy free ice cream and Alpro so milk and yogurts. Most supermarkets have their own label dairy free alternatives too, which tend to be cheaper. I have found the unsweetened ones are better than sweetened. Once you get used to it having to avoid dairy isn't that bad.

Hope you get on meds that suit you quickly.

Any more questions just ask. I'm by all means no expert but will help if I can. C x x

I have reduced dairy using Alpro and othe soya products., similarly I have reduced gluten and both have helped. Do you have to avoid all dairy or just lactose? Which treatment have you started? Behcet's is a journey. You get more used to it. You are in good company here.

Hi thanks for the reply's I'm finding that I fancy everything I cant have at them moment :-(

having to avoid anything that's contains milk atm I cant stomac milk, cheeses, yogurts, butter or margarine or anything that contains then which is a bummer coz I had them every day lol I have been buying dairy free milk but am now finding that I cant have things like biscuits and cakes.

They have to start me off on prednisolone for 6 weeks as the other one they wanted to put me on (cant remember the name) I cant have atm as they said the blood test show that my body wont break it down faster enough of something :-( so need to think about what they are going to give me

Thanks Nicky

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