Living with Lupus
Disclaimer – I’m not a doctor and any information/advice I give is purely based on my own circumstances and experiences. Please consult a medical professional if you want further advice or read the literature available. Some of the photos below may make for uncomfortable viewing. Living with Lupus is my own personal story.
This was a really hard post for me to write, mainly due to the photographs I show below. I’m not high maintenance but I do like to look nice. For me, to put photos out there on the internet, looking my worst has been a tough one. I nearly deleted the post, but in the spirit of explaining why I eat the way I do etc I thought it was important to understand a bit more about my condition And, if it helps anyone else in the same boat then it’s worth it….
I was always the one with no energy whilst growing up. The one who was always tired, who could sleep all day and then nap and then still feel exhausted. I could’ve spent all day lying on the sofa and still fallen into bed absolutely wiped out at night.
And I just thought it was normal. It wasn’t until February 2013 that everything changed. One day, whilst out with my mum I developed a rash on my chest. Luckily there was medical centre nearby so I popped in to see the nurse. She diagnosed an allergic reaction and gave me some antihistamines – but they didn’t help.
The rash got progressively worse, covering my hands and started to track up my arms and neck. I went to see my local doctor when I got back home who also said it was an allergic reaction but gave me some steroids to help fight it off.
Didn’t work. By this time the rash had really taken hold. It had spread over most of my face, except a small portion around my mouth and everything had swollen up. My nose was twice the size it normally is and something much bigger than allergic reaction was definitely going on. I called the dermatologist and got an emergency appointment that afternoon. He took one look at me and diagnosed me with SLE (Subacute Lupus Erythamatosus) and then took some blood and did a biopsy to confirm his suspicions. I had all the classic symptoms apparently (the rash on my face was the biggest indicator – known as a butterfly rash due to the pattern it makes).
There was nothing I could do to cure it. I might never have another flare or I might get one next week and no-one knew specifically what caused it. I would be living with Lupus for life.
Theories about stress etc were thrown about but there is no hard and fast rule. I was put on the drug Hydroxychloroquine (an anti-malarial drug that works well against lupus inflammation), a strong course of steroids and told to stay out of the sun forever or it would cause further flare ups. Anyone that knows me, knows that is the worst advice I could ever have received. I am a confirmed sun-worshipper and am never happier than when I’m lying on a beach. I was determined that I wouldn’t be the girl in the long-sleeved kaftan, the huge sun hat, shades, Factor 200+ slathered all over me, and sitting under a sun umbrella.
It was at this point that I started doing some research into my condition. Lupus is an autoimmune condition which means that the body sees something in itself as a foreign threat and starts to attack it but is actually in effect just attacking itself. Luckily, looking at the bright side, I have the best-case scenario. Systemic Lupus is much worse and it’s when your body starts attacking its own internal organs – luckily mine is just limited to the skin – as Systemic Lupus can be life-threatening. I started looking into triggers and possible cures and came across the SCD diet. My mum first brought it to my attention as she had been following it as an aid for her ulcerative colitis. The science behind it made a lot of sense to me.
Edit: I have since found out that I was misdiagnosed and that I have Systemic Lupus Erythamatosus.
SCD in a nutshell. It’s a diet that eliminates food that feed the bad bacteria in the gut. This means no grains, sugars and starches and advocates fermented foods to promote the good bacteria in the gut. Monosaccharides are the simplest sugars and these are easily digested and absorbed, so these are the only sugars allowed on the diet. They are found in most fruits, vegetables and honey. Anything that is starchy or more complex (think potatoes, pasta, wheat, rice, bread etc) breaks down into a disaccharide or a polysaccharide (as does table sugar, glucose, agave, maple syrup etc) and these are not able to be absorbed through the gut walls so they hang around in the gut and feed the bad bacteria. This results in an overgrowth of them and causes inflammation in the body and can trigger autoimmune conditions.
There’s much more scientific evidence than that and if you’re interested I would suggest reading Breaking the Vicious Cycle: Intestinal Health Through Diet by Elaine Gotteschall to inform yourself further. Unfortunately, diet is not seen as a cure for most autoimmune diseases by most medical experts (and drugs are big business) so not enough research has been done into the diet in order to have evidence to prove its validity. But it works for me. When I eat the way I do I feel energised. I have much more vitality and basically just a lust for life. It’s crazy to me now that I used to think my lethargy was normal and that everyone felt like that.
Over the years I’ve adapted SCD to my own body. Maybe this means I’m not following the diet properly, but it works for me. I find that most dairy doesn’t affect me. I eat all cheeses, yoghurt and cream etc and I’ve added in a few extra things like cacao nibs and some pulses/legumes that don’t cause me ill effects. On special occasions, I also allow myself champagne or an Aperol Spritz even though they contain small amounts of sugar. Basically, I stick to a low-carbohydrate diet with healthy protein and fats. I see it as a cross between the Paleo Diet and the SCD.
The majority of the food I eat is wholesome and unprocessed. I just think it’s a healthy way to eat anyway, regardless of whether or not you have a condition that may require a dietary change. Most of my recipes should be suitable for both with a modification here or there. And of course all my recipes are grain and gluten-free!
Cured is a strong word. I won’t ever be cured as the condition always has the possibility of flaring up again, but I haven’t to this day had any more rashes and I no longer take my medication. I don’t like taking drugs of any sort. However, I honestly believe that this diet has controlled my symptoms. My condition worsens in the cold as I also have Raynaud’s disease (poor circulation in the body’s extremities) but I can see when I start to get red patches on my hands that I need to take extra care of myself, eat better and stay warm.
When I know the condition is attempting to take hold
Some days I find it tough having an ‘invisible condition.’ Everything looks fine on the outside but you’re struggling on the inside with energy levels and feeling run-down etc! People think that just because I look well, that I am well, but that’s not always the case. Although I am definitely lucky to have found diet as a coping strategy! I’m not saying that it will work for everyone but you have nothing to lose by giving it a try. If one person’s condition is made the tiniest bit easier to deal with by the information that I’ve put out there, then it’s worth showing my horrible photos to the world!
The best thing is I’ve been sunbathing and lying on beaches ever since and it’s not caused me a single problem!!
I can play on the beach with my godchildren and niece. I can run around in shorts and a T-Shirt and swim in the sea and I’ve had no ill effects since that first outbreak!
SCD has had success in treating Crohn’s Disease, Ulcerative Colitis, Lupus, Autism, Irritable Bowel Syndrome, Irritable Bowel Disease, Celiac Disease, Hashimoto’s, Psoriasis, and many other conditions.
Dear Emma,
I have read your, well written, email on Lupus having no knowledge that you suffered from this illness. I had a friend who suffered from Lupus and I know from her how terrible it can be. I had presumed you had the same problems that Annie has.
I have found your recipes very inspiring and ‘clean’ and not at all restrictive. In fact they are very inspirational.
Very well done Emma, I am enjoying reading your blog and shall continue to read and cook. I do hope your Lupus continues to be controlled.
fondest love,
Anne xx >
Thank you so much Anne – that’s such a sweet comment. At the moment it’s very controlled and I hope it stays that way! I’m glad you’re in good health at the moment too!! Long may it continue. Lots of love xx em
I’m so proud of you my darling daughter. I know that you agonised over this post – but if you can help even just one person to recover or improve their health – it will be wonderful. Love you xx
Thanks mama ??❤️
Dear Emma, I have only just seen your post about Lupus and am so sorry to hear what you have had to go through but delighted that you have come out the other side – well done, Gorgeous !! Lots of Love, Stuart xxx
Sharing your story can make you seem vulnerable, but to let people know you can beat your autoimmune disease with SCD is inspiring for all that read about you.
Emma, your journey may be a steeper climb up the mountaintop than most, although, your self determination, motivation and courage following SCD seems like the best energy to beat the odds of SLE.
Thank you for letting me read your story. I hope you inspire others to follow your journey. I wish you all the best, always.
Emma,
Thank you for being courageous enough to share your story. I’m on a grain free diet also for chronic pain and chronic/stress-related/hormonal migraines. Your comment about “invisible conditions” was right on target. As for the pictures, you are beautiful, never doubt that. All the best in your journey.
Linda
Ah! Go you! I also suffer with lupus and its the very worse thing ever. Love your positivity. I am currently writing / illustrating a zine about my story. Best of luck and spoons to you xx
Thank you Emma for sharing! I am so glad SCD has bettered your life! I discovered SCD when my husband was diagnosed with UC this past March and I have been cooking up an SCD Storm ever since . I don’t ever want him to go through what he did when he was first diagnosed ! You on he other hand are Beautiful and Brave. I admire and applaud you for posting your struggle with Lupus. This disease took the life of my best friend over 37 years ago. She developed the rash and then the ‘moon face’ from the steroids she was on and this really took a toll on her (emotionally) during her Jr. High and High school years. She no longer wanted to fight the good fight . If only then I would have known about SCD. You keep posting those pictures and enjoying life and the people around you!!!!!!
Courageous blog, thanks for sharing I too have had many health challenges over 25 years, sometimes I am not sure how much to share but it is important we educate people
I am so happy to have found your blog! I was diagnosed with Lupus last summer after years and years of having what I thought were random symptoms that were unrelated…fatigue, raynauds, severe IBS-D, difficulty swallowing, acne, hair loss, and then more acutely depression, joint pain, low grade fever and muscle aches. I found a physician who dug deep and found my ANA titer to be elevated last July. From there I tested positive for Lupus. Being a nurse, I researched about auto immune diseases and found they are linked to Leaky Gut Syndrome and can be put into remission through diet. I found info on GAPS and LEAP-MRT dieting and from there found my local dietician who specializes in that. It changed my life!!!!!! The majority of my symptoms subsided after removing gluten after 7 days! My gut has taken much longer to heal and I am still on the road to recovery but I see definite improvements every month. I am so thankful to God for showing me an alternate way of healing my body instead of taking drugs to cover my symptoms. I am so glad you have been blessed to do the same! Thank you for sharing your story! Others need to know this works!
Wow Stephanie – thanks for such a lovely post! It makes everything I do worthwhile to get feedback like yours. It’s only until you delve deeper into gut health that you realise how much of a contributing factor it is in auto-immune diseases. When I was undiagnosed, for me the biggie was the fatigue – I just couldn’t understand why I didn’t have the energy that everyone else did. Now I suffer from Raynauds too which is a complete pain but tolerable. I ‘self-diagnosed’ myself with Leaky Gut ad started reading around the subject – my mum suffers from Ulcerative Colitis and was following the SCD Diet (Specific carbohydrate Diet) which was really working for her so I began following it too and never looked back! Gluten is the number 1 baddie for me too! I feel so much better having removed grains, gluten and sugar from my diet – I feel like a different person. I don’t like to take any drugs either – I take Hydroxychloroquine but that’s it. I’m intrigued by LEAP-MRT – what is that? I’ve heard of GAPS but never that one. I still have work to do but eating this way has helped so much – I’m glad you found the secret to better health too – we just need to get the message out that diet is a factor, even if the majority of the medical profession don’t agree- great to hear that you’re a nurse and you’re convinced of it! Stay strong and i wish you great health!
I had a friend that died from Lupus very inspirational story I’m glad you didn’t give up God always finds away seem sorta of by luck you followed me on twitter I’m just starting on that Paleo Diet and wanted to know more about Grain free and Gluten free products and Recipes as I’m diabetic been diabetic for 12yrs and never got any symptoms from it but within the last 2yrs the symptoms has been coming back to back I guess it’s trying to make up for all the times it didn’t bother me and all that bad eating and drinking I did it’s starting to take it’s toll on me now sense I’ve gotten older I lost three family members from diabetes within the last 10 yrs and I’m still playing around they lost limbs too and in this new generation with all they new medicine and technology they still couldn’t keep it together.
Hi Cherry – so sorry to hear of your friend passing. Lupus is a horrible condition and the more I find out about it the more horrific i find it to be. I don’t personally have much experience with diabetes but I know it’s a condition that shouldn’t be messed with so it’s great that you are working to get it under control. All my recipes are free from refined-sugar which should be great for diabetes and I honestly believe that everyone is better off avoiding gluten and grains so it will definitely benefit you to come off of them. Stay strong and I wish you great health xx Emma
Hi Emma, WOW!!! I’m sitting here reading and looking at your story and I just want to hug you and say thank you.
I’m an Emma too, and I’ve got way too much going on in the challenges basket!
I’ve been a chronic unstable, seasonal asthmatic since I was 19, I’m 48 this year, and am unwell from September to May usually. Three years ago I got a new respiratory consultant who has reduced my steroids and stabilised my asthma but 10 years of massively high doses of combined steroids destroyed my adrenal gland and left me with full blown adrenal insufficiency, the pain I’ve had for years and Drs blamed on steroid side effects turns out to be gout and RA, both extremely painful and extensive, feet, knees, hips, spine, hands, jaw?. Then my thyroid decided to slow down and stop!! Add to all that life long IBS / wheat, lactose, gluten and yeast intolerances and it’s not a pretty picture.
February I saw a new endocrinologist and he referred me to a nutritionist, among others, and I was introduced to the SIBO theory and diet. I’m on week two now of the very restricted phase one, but I’m also 2.5lbs down and hopeful!
Thank you for sharing your story and recipes I’m already certain I’ll be finding wonderful ideas, recipes and inspiration from you. I hope you don’t mind my sharing a snap shot of my story but it’s important to me, as it is to you, that people look past the overweight chubby faced smile and see the exhaustion and frustration that goes with chronic pain, and invisible illnesses that try to destroy you from the inside. I’ve had to stop work and alter my lifestyle, life plans and my dreams but like you I’m becoming an expert in me, and I’m not giving up. Go for it Emma, and count me in, I’m going to follow your posts and blog so I can get inspiration and tasty ideas from you.
Good luck, many thanks and big hugs xxx
Wow back at you Ems! – thank so much for the lovely comment. Of course I don’t mid you sharing your experiences – we all need to talk about these things and spread the word about auto-immune conditions and educate others to our struggles. I had childhood asthma but luckily grew out of it but one of the conditions that comes along with Lupus (the condition that just keeps giving!!) is RA. I get swollen joints along with Raynaud’s disease which means my hands are a complete mess in the winter. To be honest I’ve never done any tests for adrenal and thyroid function (think I’m living in denial) but I probably should, as the exhaustion I deal with on a daily basis is overwhelming sometimes. I’m sure if I knew more about what i was dealing with then I could do more to help it but at the moment the diet really works. I can definitely see a huge difference in my energy levels just by cutting out the inflammatory foods.
I dont know much about the SIBO diet but I’m sure it’s in the same vein as the Specific Carbohydrate Diet. I love eating this way (now that I’ve got used to it) and although it is restrictive I enjoy finding ways to re-create my old favourite foods (bread and pizza) – I’m sure my overindulgence (used to be a massive carb-monster) has led to my intolerance of those foods now.
Congrats on finding a way to cope and I hope you find my recipes useful and easy to follow. i look forward to hearing more about your recovery and your journey – please stay in contact and good luck with everything xxx hugs and keep smiling
I always like reading About Me pages to learn a little more about the person behind the blog. I also love post where bloggers share their story. I can only imagine how hard it must have been to write it and hears your story and pictures, but at the same time is must have felt like a great therapeutic release right? You are so strong and behind your words, I love the sense of strength and positivity. You never once made yourself sound like a victim, feeling sorry for yourself, or woe is me. I think after the initial shock passes when one is diagnosed with an illness, two things can happen. Either you shrink back and let the illness take over your life, or you gain strength and take your life into your hands. So glad you chose the latter. Wishing you all the very best in life with wonderful and happy moments. Keep sharing your story. You will surely provide others with information, motivation, insight an strength. xoxox Sheri
Thanks so much Sheri! No, it’s not easy to put your worst face out there for all the world to see but I felt it was important to do so if it helps even one person in my situation! I look at my condition as a positive thing – I’m now living a much healthier life because of it. I take more care of myself and really do appreciate all the little things in life. Thank you so much for your kind words, I really do appreciate them. Wishing you health and happiness xx Emma
Thank you for sharing your story. I’m sure many will be helped by your decision to put this out there. Raising awareness will hopefully help you and others get the support and understanding they need. Good luck to you.
Thanks so much for your kind words Sarah!
Emma, you are a brave, brave girl to have gone through so much and still have such a hopeful attitude and bright outlook on life!! God bless you so much!! I’m grateful to God for guiding you in this way to find some relief from the symptoms. You are so caring for others to tell your story to encourage those who may also be suffering in this way. Thank you for exposing yourself to the world to bring help to your readers. I admire you for it. <3 OXOX
Blessings,
Cindy
Wow Cindy
Thanks so much for your kind words. I’m very lucky in that I’ve found a way to manage my symptoms and I hope to inspire others living with auto-immune conditions that there is hope out there.
Blessings to you too Cindy!
Emma, thank you for sharing your story..I needed this! I sufferer from multiple autoimmune diseases including lupus and MS..I am quite a bit older than you and never had heard some of your recommendation before! I am excited to try some of your recipes! Keep up you positive attitude and share you story..their are so many “older” people who need to know this!
Thank you so much for your kind words Holly. I was scared when I first got my diagnosis but have done a lot of research and have found some things that help me cope! I’m so thrilled when anything I put out there on the blog helps anyone else in a small way. Your words mean so much! Hope you stay healthy and find something that works for you too. We’re all different!!
Thanks for educating us about Lupus, I am glad diets works for you. I also hate drugs too. I am also on a hunt to find a diet for myself. No I don’t have lupus but I am simply tired of my eating habits and want a change. My body doesn’t seem to like high protein diets though. Thanks for sharing.
Thanks Elizabeth – I do truly believe we are what we eat and food has the ability to both heal and hurt us! I hope you find the diet that works for you! Take Care!
Yes it has helped me.Thank you.💝