We want to hear your stories about changes in your diet or eating habits

[Paul_Howard]

For July and August we would like to invite you to share any experiences you may have of changing your diet or eating habits to try and manage your lupus.

The food you eat can play an important role in your health and wellbeing. There is no simple answer which will cure your lupus symptoms, but some people do find that avoiding certain foods or eating a healthier diet can have a beneficial effect.

For this reason, we'd like to share the experiences of people with lupus who have noticed changes to their health as a result a different diet or eating habits. This could be a beneficial change or a detrimental one. Whether you have identified and avoided one particular food or if you had a more dramatic change we'd like to hear from you. Please send your story and photo of yourself to [e-mail]

We'll aim to post one or two stories a month (depending on how many we receive).

If you are interested in learning more about lupus and healthy eating, our booklet can be viewed online or downloaded from lupusuk.org.uk/images/pdf/H...

[Chantev]

Hi Paul

This is a great way to initiate the correlation between healthy eating and lupus. It dawned on me upon my second or third visit to my rheumatology consultant, he suggested that I have fish oil, reduce red meat and dairy products to help me to abate the inflammation. I took it on board and then started researching into the impact of diet on various health conditions, this was before the era of the Internet. I found a lot of info relating to arthritis but none to SLE. This is when I learnt about about the various acids in vegetables like aubergines, peppers, tomatoes which have been part of my staple diet. I loved cheeses, so that has to be phased out too. Gradually I noticed when I had real coffee, sometimes red wine I would suffer, I researched the effects of tannins and they had to go too. Citrus fruits too were noxious. So I rethought my eating habits, becoming a virtual vegetarian from a carnivore who used to like her steaks rare!!!! Fortunately I loved fish too, that became my main source of protein. so I created imaginative hot and cold salads with various types of fish. The Mediterranean types became my favourite grilled or barbecued. Its amazing how one can become resourceful and creative when needs be. Got rather bored with chickens and the mad cow scare did wonders to help me to keep away from any sort of beef...

Upon my rheumatology appointment I showed slight signs of improvement and reduced my medication, rather than taking nifedipine I decide to embark on a keep fit regime to help me improve my circulation (I also had Reynauds)...took up yoga and Pilates and to date have been hooked on them. My lupus has been quiescent for the past 15 years now, but I strayed away from my diet, morrocan food with heavy presence of peppers and aubergine, washed down with heavy bodied red wine followed by irresistible French cheeses...tempted to some real steak by my carnivorous sister...lo and behold two months ago went for my appointment my lupus had reared its ugly head again. Liver function was a concern. So hung my head shamefully and decided to go back to my healthy diet as I was threatened with more medications .I must point out that I have resisted the offer of steroids...am only recently gone back to Plaquenil 400mg daily, but did managed to get it down to 200 for a long time when I stuck to my diet.

As I have reverted to my diet for the past three months, I am awaiting eagerly for my appt and blood test results which is due on Monday, I sincerely hope that it would show some improvement. The registrar who is overseeing me is ultra efficient and extremely thorough she is one of the best I have seen over the past 23 years. She was baffled how I could have kept my SLE at bay for so long and then to regress.

This has been my journey, it would be interesting to hear of other people's experience. I have had my share of low immunity setbacks, had shingles, Bells Palsy to contend with, so it has not been plain sailing....

Chantev

[Paul_Howard Partner LUPUS UK in reply to Chantev]

Thank you very much for sharing your experiences. I hope that you get on well when you get your results on Monday. Let us know!

[yakamalayo]

I wanted to reply on here rather than by email as I'm really interested in seeing other people's replies as well, so hope others will also do that (the one below is great!).

My daughter was diagnosed with Lupus last October. After doing lots of online research she completely gave up gluten and dairy - not because she was aware of any reaction or intolerance, but as the first two things likely to help in healing the gut, where so much of the immune system is based. Most auto-immune advice which discusses nutrition highlights those two as the first culprits. She also gave up beef after a noticeable flare, and when she did go back onto dairy for one day (prior to doing a food intolerance test), she had a significant flare for the following few days. She also avoids refined sugar.

She eats lots of fresh fish, veg, spuds, rice and other 'natural' and wherever possible organic foods - its surprisingly easy to avoid gluten and dairy if you are cooking yourself (just switch milk for almond or soya milk, butter for olive oil or non-dairy spread, etc. etc. - there are loads of substitutes but she has natural rather than processed food almost entirely anyway). It does get harder when you eat out!

Her symptoms are now well under control - most of the time she feels completely normal which is fantastic. Last anti-dna had reduced, but was still significantly above normal. A bit of a flare for a few hours when she was out in the sun for 30 mins, middle of v. hot day with no sunscreen (oops!). Otherwise good. We have no idea if its the diet that's helping support her wellbeing, but it certainly won't be harming it so she is committed to sticking with it.

Look forward to hearing the outcome of your question - hope some clear indicators start to emerge!

[Paul_Howard Partner LUPUS UK in reply to yakamalayo]

Hi yakamalayo,

Thank you so much for sharing your daughter's experiences with us. As you say, it is hard to tell whether diet or medication is playing the bigger role - though I reckon there's a good chance of both. It's great that she has identified some foods that she reacts badly too so that she can avoid/limit them. I hope that her health continues to improve.

[yakamalayo]

Hi Paul. I just wondered if your question about diet and eating habits threw up any interesting correlations. I haven't seen a post with feedback from the question (might have missed it) - was there anything interesting?

[Paul_Howard Partner LUPUS UK in reply to yakamalayo]

Hi yakamalayo,

The blog posts in response to this can be found at:

healthunlocked.com/lupusuk/...

and

healthunlocked.com/lupusuk/...