Because I’m so sensitive to azo dyes, the yellow & red colouring added to medication etc I’m suffering every day with awful stomach cramps and diarrhoea . It’s like suffering with food poisoning everyday.
Has anybody had this problem and found a solution
?
Hello! You are not alone. You don’t say which medication you’re on, although most of them can have an impact because of the colouring. I switched to Stalevo from Sinemet over four years ago and it took me over a year to stop feeling sick and experiencing diarrhoea mostly for the first half of every day, which was a lot. My neurologist was sensitive to my complaints and sent me to a specialist - internist with specialisation in nutrition and she ordered a battery of blood tests and the gut test - which meant having to send a stool sample to the lab. The blood showed some inflammation and I also received a complete report of the bacteria situation in the gut. It turned out I had way too many harmful ones and not enough good ones. I do eat very healthy, vegetarian and minimum processed foods but medication does mess it up. The doctor prescribed three weeks of antibiotics for the gut and anti-parasitics which killed the bad ones - so to speak - and then she prescribed probiotics for six weeks. It was much better but she said I would have to check LPB regularly in blood tests (Lipo-binding protein) which is a good indicator for the gut situation. At the following test, it had gone up, and she said it was definitely medication so she prescribed L-glutamine which is an amino acid that supports the digestive system. I take it on an empty stomach (tasteless powder diluted in water) with probiotics (which I had to continue to take)- I have tested taking it before and after the first morning Stalevo and it doesn’t seem to affect it either way - at least this is my experience. I no longer have gut issues and glutamine is fine to take long term as are probiotics. However, it is really important to discuss this with the doctor because of everyone’s specific medical profile.
I think that Stalevo has a really bad coating for some people and my symptoms disappeared almost completely after I started combining Stalevo with Madopar (in some EU countries it’s called Prolopa). Not adding it but replacing some doses.
Best of luck.
Thank you AlexT,
I presently take Co-Careldopa in varying strengths each day, I was diagnosed in 2018 .
Over the years I have tried Entacapone, Madopar dispersible, Opicapone and Neuro patches.
I was advised recently to stop the Madopar, taken 1st thing and the Opicapone, nightly purely because my digestive system started to suffer 2 years ago with the introduction of these 2 meds.
A GP immediately jumped to the conclusion it was my IBS that was the problem but finally my Parkinson’s nurse advised me to stop Madopar etc.
I have been waiting to see a gastroenterologist since January 2024 and I have finally got an appointment for September this year.
I been trying to research as much as possible about the PD meds as I don’t want to waste consultants time if they or the Parkinson’s are the cause of my situation.
I am very sensitive to colouring so it’s a mine field of information as I’ve had varying brands of co-careldopa supplied because of drug shortages.
As you can imagine my world has become very small as the debilitating effect it has on me.
Hey ho, onwards and upwards as they say.
I will go armed with information and suggestions of blood tests etc.
As my Mum always used to say ‘there is always someone worse off’ so wish me luck.
I hope everyone out there is faring better , best wishes to you all
Hi @Redkite53 thank you for sharing this with us. It sounds like you’ve been through such a long and exhausting journey, and waiting this long for a gastro appointment must have been incredibly hard.
Going in well‑prepared will make a huge difference. If you need to talk to someone before your appointment, our helpline is free, confidential and here for you on: 0808 800 0303. Wishing you the very best for September, and hoping you get some clear answers soon 
The Parkinson’s UK Moderation Team