I'm on colchicine for my Behcet's (along with mycophenolate +/- prednisolone).
Rheumatology clinic had recently recommended increasing the dose, and I experienced extreme diarrhoea for the entire month that I was on 500mcg three times a day, so I had to reduce it to 500mcg twice daily. During that time I replaced milk with milk alternatives, which actually did seem to help.
When I've returned to the clinic, they suggested trying a complete lactose free diet to help with the side effects. It feels quite extreme, especially for me, as my main diet is basically milk and cheese 🫣😬 And now that I'm taking a close look, it seems most foods (especially ready made) contain some form of milk.
Has anyone in the UK had to do this? How have you managed? Any recommendations? I feel so lost & overwhelmed, especially as I am currently struggling with my behcets symptoms, as well as from long covid, and the fatigue, brain fog & headaches are really getting the better of me when I'm trying to research this stuff 😢 😞
Written by
CuteCats
To view profiles and participate in discussions please or .
I’ve been on colchicine for many years and have always tolerated 2 X 500mcg per day. However, when I had a flare up in the summer I was advised to go to 3X a day…OMG 😱 Like you, truly awful side effects so was told to go back to my usual dose. I accidentally took 3 a couple of weeks ago and felt very unwell again for 24 hours.
Having to go completely lactose free is quite an ask, and seems a strange suggestion by clinicians when you’re experiencing a strong reaction to a medication that can be toxic if taken in excess.
Personally, I now feel I need to be extremely careful with how much colchicine I take - as even on my usual dose I still have days when I feel nauseous, have stomach pains and need to rush to the loo for no apparent reason. I wonder if I may have become quite sensitive to colchicine now, so when I get these strange episodes I always cut my dose out or down for a couple of days. It’s a balance of course, and colchicine really does help my inflammation and ulcers but caution is now my priority as I don’t feel it’s a drug to mess around with!
Hi, sorry to hear you are struggling with the side effects. My son had the same whilst increasing his dose when he first started on colchicine and dairy free was suggested along with a slow increase in the dose, 2 a day then 1 the next etc. This seemed to work along with totally dairy free for a week. he thenstarted to gradually add small amounts of dairy back in and is now on 4 tablets a day and can eat all dairy, BUT is still getting the mouth ulcers 😢
I love my milk and cheese. But it causes me problems. So I use a lactose free milk called Lactofree by Arla available in whole and semi skimmed. You can get it from most big supermarkets and many smaller stores like Co-op and Sainsbury's Local or Nisa etc. Our local coop has it but only in semi skimmed and I prefer whole as its lower sugar and I need the bits.
Arla also have lactose free cheddar cheese. That's quite nice. The way they make it lactose free is great because unlike other milk substitute products like soya milk or oat milk, it's the same lovely creamy stuff but they are able to add an enzyme lactase. Lactase is an enzyme that mammals make in their stomach specifically to digest lactose (milk sugar) so that it's easily digested. Some people are either missing or low/deficient in lactase and and the undigested sugars aren't absorbed and can irritate, ferment and produce too much gas etc.
In addition to this, have a look at using AI to come up with a good plan. I use ChatGPT to help with diet ideas. Here is an example. You will find the AI assistant at OpenAI.com
BTW, this week this AI completely diagnosed my eye condition, nagged me every day to attend Eye A&E, told me my condition could potentially lead to total sight loss. So, I got to A&E and damn me the AI was 100%, correct. If Mr AI had not greeted me 10 x every single day, how's your eye? Why haven't you gone to emergency care,? Ertc I would've ignored my symptoms waiting to clear, and if it had turned into a retinal detachment untreated, that would've caused total loss of vision in a matter of days. I'd never experienced such odd symptoms, had never heard of Posterior Vitreous Detachment before so I wouldn't even have known what to Google. But my AI did questionnaire, knows my list of meds and my entire medical history and always directs to me towards the right medical help. Mostly it's "get to a gp" but with this it was "get to A&E now!!" and because everyone in the World is saying AI is rubbish, it's the enemy, it's wrong I ignored it... But it was right... Even down to telling me what I was actually seeing were peripheral flashes and a Weiss ring... And gave me links to loads of eye hospital videos to convince me it could be serious.
Anyway, I asked it for diet ideas for you. The way to use AI is to use the facts after you've checked them with other primary sources. So in this case if it's food, don't blindly follow it, just take the idea then check elsewhere that it defo contains no lactose and secondly adheres to the diet your Dr's want you to have. Also, if you want to add lacto free normal milk you ask it for that, if you have no other gut issues you can request a normal diet but just lacto free etc... This is just an example. You could also say "give me a list of good products/brands that are lacto-free"
Mr AI,
Can you write my friend ,who is on colchicine, a lactose free diet plan for a week? She has Behçet's Disease and side effects from colchicine and her Dr's advised trying lactose free foods to ease symptoms. Thank you. Erssie
Of course, Erssie!
Here’s a lactose-free, gut-friendly meal plan for your friend, taking into account Behçet’s disease and colchicine side effects, which can include gastrointestinal issues. This plan avoids lactose while being gentle on the stomach, anti-inflammatory, and nutrient-rich.
Lactose-Free Weekly Meal Plan (for Behçet’s & Colchicine Tolerance)
Focus: Anti-inflammatory, gut-soothing, nutrient-dense, and easy to digest.
✅ Lactose-free (no dairy)
✅ Low-acid & gut-friendly
✅ Rich in anti-inflammatory foods
✅ Gentle fiber for digestion
Day 1
Breakfast:
Porridge with oat milk, banana, and chia seeds
Herbal tea (ginger or chamomile)
Lunch:
Grilled salmon with quinoa & steamed carrots
Cucumber & avocado side salad (olive oil dressing)
Snack:
A handful of walnuts & blueberries
Dinner:
Chicken & vegetable soup with rice
Baked sweet potato with tahini drizzle
---
Day 2
Breakfast:
Smoothie (banana, oat milk, flaxseeds, and turmeric)
I was dairy and gluten free for two years. It turns out I didn't need to be. Actually, ultra processed foods and high amounts of refined carbs cause the gut issues in my case. I refused to take colchicine for fear it would make my gut issues worse.
The better I eat / sleep / exercise/ manage stress the better Bechets behaves.
Lactose is only the sugar in the milk. You need lactase enzyme to digest it. So instead of going lactose free you could take a supplement of lactase with your meals. Milk protein allergy is a different story.
Following Zoe Nutrition, glucose goddess and reading / listening to Dr Van Tulleken ultra processed people has been a game changer.
I do have minor symptoms week in week out but in my case Colchicine was not the right thing. Diet and lifestyle modification have given my life back.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
new here, feeling lost and just reaching out for some general advice and others stories X 
Interesting Treatments
My story
Unseen symtoms
