Paleo diet and Lupus

[mandypops]

I have what my consultant believes is Lupus, I've been ill for 20 years now, but was told it was ME for ages and nothing they could do until I found my lovely consultant in Lincoln. I read on these blogs that some people have found the Paleo diet to be helpful and they could manage without their steroids ( I have 2 steroid injections a year now ) and I am trying the diet and find it quite easy and don't feel hungry. Could others let me know their experience of the Paleo diet please ??

[Hidden]

Hi Mandypops. Sorry you've struggled for so long but glad you've found a good consultant now. I have Sjögren's and have tried lots of disease modifying drugs and steroids - currently on max dose of Mycophenolate mofetil.

I'm also on AIP/ Paleo. It doesn't seem to have reduced my inflammation levels at all but I haven't found it hard to keep going and I'm slowly losing weight, blood pressure has gone right down from high to low end of normal. I feel that I have to try to balance the guilt I always feel for taking powerful drugs by being ultra health conscious about what I eat. No single diet has ever made any real difference to any of my health conditions - but avoiding refined foods, drinking plenty of water and trying to lose weight by keeping low carbs helps me to feel I'm at least doing all that I can to help myself.

[mandypops in reply to Hidden]

Thank you, I don't find the diet difficult either, I made a batch of small cakes with coconut flour and coconut oil, and blueberries so if I feel I need a snack, I've got something to have which isn't breaking the diet !! I too would like to stop the steroid injections eventually but they're the only thing that keep me sane at the moment. I take 400 mg of hydroxychloroquine daily but it doesn't seem to help me much. I also take meds for high blood pressure which runs in the family, but I hope that if I lose some weight that may be helped too, I only need to lose about a stone and a half and I'm already losing weight. Thanks for the book recommendations, I'll be reading those and I wish you good health and happiness.

[Treetop33]

I'm on autoimmune Paleo too. It's early days yet and I won't find out if it's had an effect yet, but I feel quite well on it (my body 'likes' it, and tells me when I've eaten something it doesn't like). My grand plan is to come off steroids (which doesn't help with gut healing issues apparently, though if you need it you need it), stay on the hydroxy and the diet and see what gives. I am a natural skeptic so this is as far as I'm prepared to go.

Two good books are The Paleo Approach by Sarah Ballentyne and The Healing Kitchen by the same (quick and easy recipes).

I feel absolutely starving all the time though (that'll be the Pred), and my nutritionist says I need to pay more attention to blood sugar issues. In fact when I did address that it got better. She also said I need to manage stress, and indeed Paleo is a whole lifestyle approach, not just food.

Good luck with it. Definitely worth paying attention to diet etc and I've learned lots about the immune system through the reading.

[mandypops]

I think it's good to try the diet as it is basically healthy eating, which can only be good for us. I think I may ask to see a nutritionist to make sure I'm not missing anything. Good luck to you too, let's persevere and hopefully find better health 😊

[Bakbre]

Hi Mandypops

Can you tell me who the "lovely Consultant in Lincoln" is please. The reason I ask is I am having all sorts of trouble even getting to see a consultant at Lincoln at all, never mind the same one!

We moved to Lincolnshire from Yorkshire 2 years ago where I came under York Hospital. They could be quite haphazard sometimes but I have found Lincoln Hospital to be much, much worse. They have a help line where you can speak to a specialist nurse which I have done on a few occasions. At the time they have agreed that I needed to be seen quickly by a consultant and they have squeezed me into an appointment, only for me to get a letter 2 days later telling me that the appointment has been cancelled and giving me another one for much later. They are unbending and do not seem to care at all. I have even spoken to the Admin Manager who again made me an appointment, only for me to turn up and it wasn't a consultant I was seeing but the specialist nurse who had said I needed to be seen by a consultant!

I have been under the Rheumatology Dept there for the last 2 years and have seen 3 different locum Consultants, all who have had different treatment plans on how to treat my UCTD and RA. They also have different theories on what medication I should be on, none of which have quite worked. This has resulted in my having been on steroids for the past 6 months which is the only way I can be out of chronic pain. I am also on Hydroxychloroquin and Lefludomide.

According to the last locum seen at the beginning of February (who was Libiyan and who was the one who put me on long term steroids) I should be seen every 2 months for a check up. Some hope - when I rang at the beginning of May to see where my appointment was I was told that the locum had actually written down on my notes every 4 months instead of the 2 he told me, so I couldn't be seen until the 4 months were up. I argued of course but I was told in no uncertain terms that has that was what the consultant had written and they would not change it. I got an appointment letter through the post for the end of June which was then subsequently cancelled, another one for July which again has just been cancelled and I am now supposed to have an appointment for 18th August, that's if it is not cancelled. All of which means it is going to be nearly 7 months when I get to see someone. I have told my GP who has said that he can move to Grimsby Hospital but I have been told that that place is even worse and even my GP has agreed and also said that it would probably take longer to get an appointment there.

I would appreciate it very much the name of who you see. You never know maybe if I get some continuity of consultant I might get a treatment plan that actually works!

Sorry to go on but I am really, really getting fed up.

[mandypops in reply to Bakbre]

Oh no, sorry to hear this, you're having a terrible time, the way you've been treated is shameful ! The consultant I see is Dr Obaid, however I have private medical insurance, which makes a huge difference ! I do know that she also sees patients at Lincoln County hospital , and she is always busy. She is the first doctor / consultant who actually listened, and she is always so kind. Perhaps you could ask your GP to be referred to her, although from your past experience at LCH, I don't know how long you would be getting an appt. I can totally understand why you are so fed up, I do hope that you soon get the treatment you need. It is bad enough being ill and feeling rubbish all the time, without being messed about by those who are supposed to be treating you. All the best ! 😊

[Bakbre in reply to mandypops]

Thanks for your reply, it was much appreciated. I have an appointment to see my GP on Monday next week and I am going to mention trying to get to see Dr Obaid, you never know I might just get lucky!

Thanks once again.

[Cann]

My diet is probably as near to paleo as I can get in this modern age, but even then I have to muscle test myself for what and when I need something to eat. Difficult life, but I believe mine could be to do with not listening to my body for years and just doing what my brain told me!

[mandypops in reply to Cann]

I am so hoping this diet will help me, I did try avoiding wheat several years ago and felt much better, however I let my good intentions lapse. I'm very determined now though, I don't want to be on steroid injections forever ! I'm actually finding the new diet easy, and never feel hungry which is lucky I suppose . I'm making lots of things with coconut flour and use coconut milk, and it's lucky I like eggs ! Hope you stick to your diet, I'm sure healthy eating must be helpful 😊

[Cann in reply to mandypops]

I can't take coconut milk, but can take almond milk - we are all so different and need to find out what is right for us. Good luck!

[Paul_Howard Partner LUPUS UK]

Hi mandypops ,

It's a good idea to discuss any radical changes in your diet with your consultant before starting because not all diets are suitable for everyone. A paleo diet often includes large amounts of red meat which are associated with increased heart-disease and cancer risks (which are already greater for people with lupus. In addition, it includes insufficient levels of calcium and vitamin D which are needed for good bone health (which is important if you are on steroid treatment - and would be needed for your teeth).

It is important to bear in mind that lupus presents differently in everyone and what works for one person can potentially be harmful for another. It is important to get individualised advice about any potential repercussions for your health or interactions with treatments.

For more information about lupus, healthy eating and diet, take a look at our blog article here - lupusuk.org.uk/diet-and-hea...

[mandypops in reply to Paul_Howard]

Many thanks for your advice😀😀 I did speak with my consultant last week about the Paleo diet, and she said it would be good to try it. I'm aware it may not be the best for everyone, but it can't be as bad as a mcDonalds diet !! I don't eat beef or lamb anyway, and I do take vit D supplements. I'll give it a go, and see how I get on. Thank you again, it's good this forum is monitored 😊

[Treetop33 in reply to Paul_Howard]

I think it'd be good to read the Paleo approach before deciding whether this holistic approach is good or bad in some way. It certainly helped me understand the whys and hows rather than rely on stuff you find on the Internet. With AIP though I find my vegetable consumption has gone up radically and I've been correctly been able to identify food intolerances. You also need to check other issues such as blood sugar balance.

With the heart I thought the latest thinking was that heart disease was caused by inflammation (bingo) and some medics/researchers think that is diet related i.e. too much sugar and processed carbs?

I have to say I got a bit irritated with my consultant when he said there's 'no Lupus diet.' I think having a nutritionist on hand to help with diet and lifestyle changes that you do need to make would be very helpful. That way it would be less speculation and at home guessing and more systematic and supported.

That's my pennies worth anyway. I will report back on AIP if I notice anything significant.

[Hidden]

Hi,i have changed to the lchf way of eating mid january.

Have managed to get down to 5pred, reduced tramadol to 3 a day and now reduced mtx to 3 a week.

Much less pain, feel good in myself,love the food and

can now cook a meal every day for myself. There is no comparison to the way i was last year and the last 7 years.

Best of all after trying every diet imaginable i am now (in the last 2 months) losing weight! I am so chuffed.

I am not saying i am cured, also have coeliac,fibro,arthritis and am hypothyroid.

What I'm saying is don't ever give up hope to feeling better.

Best wishes

Ursi

[mandypops]

Thank you, I'm not sure what the lchf diet is, but I'm pleased it's working for you. I've been ill for 20 years now and never drastically changed my diet, although I've always eaten fairly healthily, so now I am going to try a different approach, and hopefully feel much better. All the best 😊

[Hidden in reply to mandypops]

Low carb high fat

X

[Tui16]

I have just read the Auto Immune Fix by Tom Bryan. There are also YouTube videos from him. So much of what he says makes sense and all his research and work with Functional Medicine show what an impact diet may have on the whole immune system, all linked back to leaky gut. I have just started on 3 week plan with no gluten, dairy or processed sugar and so see how things progress

[mandypops in reply to Tui16]

Hope it goes well for you, I'm certainly much better since starting Paleo, although I'm not as strict with it as I was, I've not yet had a relapse, it's working for me 😊