I've been trialling a new eating plan for about three months and have been holding off posting my results to you all because I know diets can be a contentious subject in Lupus land. (so please don't shoot me!)
I've got Lupus and have been on Azathiaprine, Prednisalone (30mg), and Hydrochloraquine for nearly a year now. My symptoms and blood results have been getting gradually worse so I decided to take 3 months off work this summer to try and halt the progression of this disease and save my career. I've always considered a vegan diet to be helpful in alleviating the god awful symptoms until my attention was drawn to the GAPS plan.
I've been on it now for three months. Its a difficult plan to follow at first and the change to eating meat was a bit of a task, but now I'm well and truly into the swing of it.
I sat in my consultants office two weeks ago to be told that my ESR has dropped rapidly to only 28 (the lowest its ever been) and my aneamia has improved from 9.6HB to 11.6HB. She waffled on about my compliments improving too but its usually at this point that she loses me! I feel amazing well. I have energy to walk the dogs for miles, my mind is so clear that I've actuallly started to read again. I feel quite well, so much so that my consultant has taken me off Azathiaprine and I've dropped my steroids with a view to coming off them completely. Its important to state that my consultant believes it was the Azathiaprine that has made me feel well and she has disregarded my change in diet. I have no scientific proof to back up my belief that this GAPS plan is working for me but I just wanted to share my experience with you. Of course there are other factors that may have improved my symptoms such as me not stressing about work or the end of the warmer weather so I'm keeping an open mind there.
I want to advise anyone who thinks they might take up this plan not to lower your meds without your doctors say-so or to expect it to cure you. We all know that Lupus is unpredictable and what works for some may not work for others but I'm sure it's working for me and just thought I'd pass it on.
Good luck
Acorn
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Acorn1
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Hi accorn ,what is the GAPS plan???it must have been quite a challenge going from vegan to eating meat ?i find fish much better to digest ,after all our digestive system is often hypersensetive ,saying that i do eat meat also ,im just about to embark on a low sugar low yeast gluten free antimflamatory plan ,wish me luck ,dreading the withdraw!keep healthy ,brave;)))
Your eating plan sounds similar to GAPS. It's based on lowering sugars found in wheats, dairy etc in order to starve the bad bacteria in our gut that releases toxins into our blood stream causing inflammation. I eat high strength probiotics and make my own Sauer kraut in order to produce good bacteria and strengthen my gut. It's a totally new way of eating and a bit of a pain when eating out, but at least I can go out now and enjoy myself. Really hope it works for you Brave. Let me know how it goes. The GAPS book I use is by Dr Natasha Campbell-McBride.
Glad to hear your feeling better. Really positive. Im certain that diet affects us, although my consultant would probably disagree. He says we need a normal balanced diet. Im keen to try it out. Life has been awful for the last year and i need to do something about it. Please can you explain gaps? What kinds things do you eat? Thanks so much for sharing this
It's mainly organic meat and veg and some fruits. No potatoes, dairy, wheat, pulses and chemicals. I make my own bread with coconut flour and it takes a bit of imagination and research but after 3 months I'm into a routine. I make lots of stews and soups and boil lots of bones for the goodness. It's a big lifestyle change but whenever I got fed up with it I just thought of me laid on my couch unable to move! That soon spurs me on to make another batch of soup! I got the book from Amazon, author above.
P.s I also eat lots of offal like kidneys and lambs liver that I get from Riverfords or Riverswale. It's an organic meat and veg company who I rely on to do this plan. X
Hi Acorn, Can you tell me if this is similar to the diet trail that has been conducted by l think St Thomas's in London, l have recently been to see a dietician as l am having real issues with things like bread, pasta etc and no matter where l go weight watchers,slimming world l am finding it extremely hard to lose any weight.
Can l buy this book from regular book shhops or do l have to order on line ?
Hope you continue to feel good, and enjoying you dog walks.
That sounds interesting. I'm not aware of any research that's been done about this way of eating but I haven't searched for any either. My experience is that most Lupus eating plans claim to work (and I've tried them!) but this one seems to hit the spot.
I'm sure WHSmith will order it in for you. I'm afraid I started to put weight on at first because it advocates eating good fats like Avocado and Ghee. But I've levelled it out a bit now and started doing more exercise with my new found energy. It took about six weeks of eating like this before I began to feel any difference. Let me know if you need any advice. I'm no expert but I've had a bit of time to work it out and I've found a few things that make it easier.
Regarding the question of diets and lupus- allow me to tell you of my experience.I have had an SLE/ vasculitic type illness for over 30 years,recently re-diagnosed as Microscopic Polyangiitis, symptoms and treatment haven't changed , only the nomenclature!I lost my kidneys to this horrible disease, amongst many other problems over the years,but after a time on dialysis I had a (non-related) transplant 25 years ago this month. Amazingly, my kidney is still working despite all the toxic drugs I've had to take, including 9 years on Cyclophosphamide after a post-partum flare-up was badly managed.I had two babies in the two years post my transplant, a son and then 11 months later, a daughter, I was very healthy during pregnancy, had normal labours,both babies fine and have grown into beautiful, fit and intelligent individuals,who both graduated from Liverpool University with good degrees last year.For the past 26 years I have been vegetarian, as are both of my children from birth, and I am convinced this is the reason why my kidney has done so well.I believe that the kidneys in particular struggle with animal protein, and if you have any kind of renal issue you shouldn't be eating meat.I also think it is a generally healthier diet for other elements of the disease such as arthritis and heart/circulatory problems(to say nothing of the ethical issue, but that's just my personal belief) Doctors , and I have experienced many over the past 3 decades, do not seem to take diet seriously at all, unless it is specified in the treatment of certain illnesses, e.g. coeliac or dialysis, but when I have mentioned being a strict vegetarian, several have commented on it being a possible reason for the longevity of my transplant.Having been permanently on steroids for 30 years, my weight has remained fairly steady at around 8 and 1/2 stone for most of that time, and my bones are still in pretty good shape.I would strongly recommend a vegetarian diet to everyone, but especially those whose health is already compromised.
That’s my experience as well , specialist seem to disregard diets except for specific reasons what you have written avoid burdening kidneys with protein if they are affected by lupus
Thanks all for info!:)im definately looking into yeasts in our bodies ,and for me i beleive its a systemic problem ,also am very interested to read up on dreaded parasites that often take hold of immunocompromised folk like us lupies ,also i have read up on leaky gut syndrome ,so very true i beleive !The one thing i have spent extra time is researching the healing properties of garlic,omg!its so amazing for us ,anti-fungal ,anti bacterial,anti -viral ,if your stomache and family (lol!) can take it then pack as much in your diet as possible ,be warned....raw garlic can be very irritating ,lighlty cooked i find better,good luck and good health to all ,brave
Thanks so much for posting Acorn. It's so good to hear that you are feeling better and coming off some of your drugs! As you might remember I've had a really rough time with drugs, being intolerant to Hydroxy and Steroids. By 'intolerant' I mean that the side effects were worse (and dangerous in the case of steroids) than the symptoms they were supposed to be treating. I too have been looking for natural ways to treat lupus and have also been doing a version of the GAPS diet with the help of a Nutritional Therapist.
Back in June I started incorporating some of the GAPS ideas into my diet: boiling up the chicken bones after a roast to make lots of chicken stock which I use to make soups and stews during the following week, which helps to heal the gut; learning how to make Kefir yoghurt with soya milk (very easy) to eat every day before breakfast, which is full of beneficial bacteria which help support and rid the gut of the 'bad' bacteria; I eat a lot of avocados and fresh organic fruit and veg; I take large amounts of Turmeric (in capsules or added to my food) as this is anti-inflammatory, anti-bacterial etc; I'm gluten free and mostly sugar free and dairy free as these are inflammatory inducing foods; I am going to try making my own saurcraut soon too. I still eat potatoes and some gluten free breads like pitta. I still avoid red meats and processed meats like bacon and salami as they have an inflammatory effect.
I am happy to report that I am also feeling much better. I have more energy. I am now almost totally drug free (I've managed to wean myself off my 3 a day Naproxen painkillers with the consent of my GP) and I only take them occasionally, usually around that time of the month when things are more likely to flare. I feel so much happier and in control of my life. My head feels a lot clearer, which helps me make better decisions for myself too which means I've been able to keep stresses to a minimum by thinking and planning things better. I feel like I'm on a positive spiral.
I agree with what you said Acorn about how some things work for some and not for others and not to reduce medication unless your doctor knows about it. There is no 'one size fits all' when it comes to diet.
Thanks for your contribution. I actually think its you that alerted me to GAPS several months ago when you asked another blogger her opinion on it, so thank you!
I too eat Advocados daily, natures anti-depressant I believe. Our diets are similar by the sounds of it. I made Kefir cheese and milk at first but then decided to try GAPS without dairy completely which seemed to help. I keep away from Soya as I'm led to believe it has something to do with oestrogen which flairs things for me. But it's great that it works for you. Yes, do start with the Sauer kraut. It's so refreshing when served with grilled chicken and Advocados. The probiotic benefits are great!
I also tried water Kefir which I added to natural apple juice. It makes a great fizzy drink after fermenting it for 12 hours and something quite boozy after 48 hours (I found that out one morning at breakfast!) I'm so pleased you're feeling better, I know you struggled with the vegan thing which I too felt might have helped you. It looks like we've both hit the spot with this way of eating. Lets hope it continues to make us both feel human!
Hi there Dryad - so pleased to read of your overall improvement from last year..... Even though the Docs do not seem too impressed by Diet Plans (perhaps because there are so many of them!) it does seem to have worked for some of us and worth giving a try. I'm a demi-veg (no red meat, pork or offal) and just lactolite milk - no other dairy and very little gluten. Lots of fresh veg, herbs and fruit, some of it home-grown.
I'm currently feeling rather low (hence being off the blog site for a couple of weeks) as I've had a chest infection for the past 8 weeks which just seems to be getting worse, and the GP can offer no help as he says it is a virus. Energy level is about "bottom of the tank" and am taking anti-depressants to keep on top of the "weeps"....
Hubby and I are heading off for the sun (and fresh sea air) of Andalucia in about three weeks - so hopefully I'll be more human then.
I think I will buy a copy of the GAPS book, as it has been so helpful to Acorn and others....
hi acorn 1,To a certain extent we all have parasites,its so easy to ingest the eggs ,from contaminated vegetables or meat ,even walking barefoot on contaminated soil.but healthy individuals can rid of them without ever knowing they had them,or at least they live in small numbers and are harmless and dont cause any symptoms in them,however in immunocompromised folk ,these little blighters can take hold,hang on to the gut wall or bowl,and have a great time feeding off the lovely diet we supply them .There are many types of parasites ,the most common being the pinworm/thread worm,if you suspsect you may have them ???most common symptom would be (itchy back passage)ewww!or quite often stomache discomfort ,feelings of unease,itchy skin,and nutrient dificiency,.For me i knew something wasnt right ,for the amount of fantastic food i eat i just wasnt absorbing the nutrients ,had a systemic yeast problem ,leaky gut wall ,itchy skin ,irritability ,and more ,it made sense that at some point i was infected and they became very happy in my body .There are ways to treat conventionally ,(Mebenzadole )or many natural ways to rid them ,wormwood,liqourice root,garlic ,low sugar diets ,probiotics etc!for me it has become quite a problem and the conventional meds are quicker acting but obviously carry side effects .Theres a product called parasite cleanse ,when my body is in a more stable condition i will try as with all cleanse programmes theres an element of detoxification ,which can place temporary strain on our systems,for me i will continue with garlic therapy and senna at night to try and flush them out ,if no better then i will treat with mebendazole,and accept the side effects ,i hope this blog helps?good health always ,brave
Mmmmm, sounds lovely! I'm itching just reading that! Thank you for taking the time to fill me in. It all makes sense. The more research I read the more I realise how our guts have a lot to answer for where Lupus is concerned.
Absolutley i agree with our gut state and lupus ,i remember a doctor in australia saying to me ......if we can heal your gut we can help heal you!for me i do beleive my immune system has been provoked by a neglected gluten intolerance and now im paying the price;(The hardest thing is ,the dedication to such diet change,Why does lupus have to be so complex???Great the GAPS is helping ,it sounds really interesting,keep well ,brave
Just thought I'd add for those who don't know about GAPS and Dr Natasha Campbell-Mcbride, that she believes that there is a clear link between leaky-gut, and with auto-immune diseases, autism, ADHD, and other problems. The diet seeks to treat the problem by repairing the gut wall. This is her website:
I just thought I'd share something I found out recently about GM food (grown mostly in the USA). They put a pesticide gene into their corn (sweetcorn/maize) so that the insects that tried to eat it would die. It worked by exploding the gut. Literally the insects' gut explodes. Then they feed this GM corn to their livestock (pigs & cattle) and the farmers noticed the health of their animals declining over the years; first they would seem less healthy generally, then they'd look malnourished and tests would show they were lacking in essential minerals and vitamins, they would become grumpy and aggressive to one another, a higher number would die of diseases. The farmers found by accident, when running out of GM feed and switching to non-GM feed for a few months, the animals would all recover and look happier and less deaths and diseases occurred. When they switched back to GM feed, the same problems quickly returned. When test were eventually done, it was shown that the GM feed was attacking the guts of the animals (causing 'leaky guts') making them less able to absorb nutrients, weakening their whole system, and making them exhibit behavioural disorders and auto-immunity, and cancers.
Doctors and Natural Practitioners in the US have noticed a clear link with auto-immune diseases (and other problems) and with leaky-gut due to eating GM food.
If you are interested in finding out more here's the link to the film on YouTube:
Here in the UK we are lucky in that GM products are labeled and we can avoid eating them if we want to. They aren't so lucky in the US. However, it should be noted that all non-organic meat in the UK may have been fed imported GM feed, therefore exposing the consumer to the risk that it might be passed on, and this is not labeled. I've chosen to avoid non-organic meat now that I know this - and eat less of it too.
I would like to add that I don't follow her diet to the letter, and have only introduced some of the elements slowly into my life. I do respect her research and theory, but it remains on the fringes of the mainstream, and she has her critics. However, it seems to be helping me and Acorn, so maybe there is something to be said for having a go...
Hi, I read about the Gaps diet a while back. I was only diagnosed at the beginning of this summer and then put of hydroxychloroquine at the start of september. I have sloely started encorporating some if the gaps principles in my everyday food routines; cutting down on grains an starches, making bone stocks- i still eat a fair bit of dairy but mainly cheese butter and yogurt and very little fresh milk. The last few weeks I have noticed a marked improvement in my symptoms. Virtually no joint pain and stacks more energy. Of course this could be due to the hydroxy kicking in, and aned the fact that summer is over, however my digestion also seems better than it has been in years. So who knows. I'm definately going to start experiment with more fermented things in my diet though.
That's great news! It's so difficult to seperate environmental factors, meds and GAPS when trying to decide what's working.
I definately believe its the GAPS that's making me feel well. I've lost that heavy feeling as if I'm carrying a sack if coal on my back! I feel lighter and clear headed and able to do more than one task in a day.
I did GAPS with dairy at first but felt a huge difference when I gave it up. Really pleased its working for you.
Thank you so much for taking the time to share your experience
I was looking to see if any one with lupus has felt any better on GAPS diet ...so far (3 months into it ) we have not noted any change ... hoping it will help eventually ... your post gives me hope for my family member with lupus... she is on exactly same medication as you
I have too found great improvement in bloods and antibodies by changing my diet. I do not follow any specific plan but always fast from 7 pm to 9am and I always eat at least 30 grams of fiber mostly in the form of insoluble or resistance starch because prebiotics are found to improve gut flora. I eat very little red meat, but do eat fish and chicken occassionally. I eat tons of all bran( wheat bran) though so not for everyone, loads of almonds and a cup of broccoli everyday ( I am on warfarin so the cup of broccoli is my way of maintaining a Consistant vitamin k. In addition to my blood improvements I wake up refreshed and my mood is elevated too.
So it seems not a specific diet is a one size fits all but improving our glucose levels, fat intake and prebiotics all lend to improved health benefits.
Glad to know others are finding self help improvements that are improving their lives as well! Stay healthy!
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