I’ve been on here previously asking about intolerances. Since my lupus diagnosis I have noticed I’ve started getting a lot of intolerances arriving- chickpeas, lentils, baked beans, garlic, onion etc. A lot of you said that you had similar things and that this was possibly related to the lupus as we all have very similar. I also find these are also a lot worse during a flare up!
When I mentioned this at my last hospital appointment the dr told me that intolerances aren’t linked to lupus so it must be something else and fully dismissed it. She Didn’t even write about them on my hospital update letter to my GP. They are getting worse and worse and the list is growing by the week. She said she’d only be interested if I was being unwell every single day. Is this right?
Was I confused to believe these might be linked to the lupus? Also are there any tests available, at the moment I feel like I’m doing a lucky dip as to whether I’ll be ill after I eat!
Thanks so much in advance!
Becky
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Becky1995
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Ok, Becky, take that doctor’s PhD and hang it on your wall! You are correct and he is incorrect. There are lots of things we know we should and shouldn’t eat as AI/CTD/Lupus/UCTD sufferers! Something called molecular mimicry in some foods. Other foods take down inflammation. There are books, articles, posts, sites, etc., all related to the topic of foods and AI. Another good thing I am learning is fermented foods. We need them. We need to heal our stomach lining with probiotics. There is a whole science to this, so shame on them.
Becky, listen to your body. It is telling you, SCReaming at you, to let you know what it doesn’t want. If the hospital isn’t listening, you, at least need to. 🙏 Best of luck on this journey.
Thank you so much! I was really starting to doubt myself! I didn’t realise there were food that also help! Are there any books you would recommends? I’m willing to try anything and everything to help!
Your advice means a lot, I appreciate you taking the time to reply! X
Oh wow Becky, I’m on the same path as you, even if just a little a head. But I’m still learning. I would hate to tell you too many do’s and don’ts as you may have done specifics different than mine. But a basic run down would be this:
No gluten. There are gluten free breads. A real sourdough is good too because of the fermentation.
No nightshade veggies, or alfalfa sprouts.
Yes on fresh, wild caught salmon several times a week. Turmeric, and the core of pineapples (you can throw them in the blender for smoothies) take down inflammation.
Change your table salt to sea salt.
Some say garlic is bad, some say good. You said you notice bad effects so you should probably stay away. But onions and garlic are good for me. So you see, there is a difference between us. Also, sweet potatoes and yams are a doctor eat’ but I’ve discovered (after eating a ton of them) my body won’t tolerate them.
Get some collagen powder. I use Dr. Ax from Amazon, but a good college daily.
There is an app called ‘eat right for your blood type’. It’s a few dollars, but will also help tell you the do’s and don’ts and why, according to your blood type, but then you have to adjust it to work with your AI.
A cookbook I like is ‘The Lupus Cookbook’ by Ana Reisdorf. Some recipes aren’t winners, but most are great.
Another difference you and I might have is that coconut milk, cream, and oil is generally a great substitute for dairy, and I was using it a lot, until I found out my body can’t handle it.
But it may take awhile, but you will learn.
Also, there are a lot of supplements, such as turmeric (it’s also a condiment you can cook with) and magnesium lactate. But if you can find a trusted, recommended alternative healer, or if your doctor has someone on staff, they can help you.
I wish you all the best. It’s a long road that lays ahead, but you can do this! And you will feel better! Be encouraged🙏
I'd be a bit cautious with some of the advice given here. It is always important to discuss any supplements, complementary therapies and radical changes in diet with your doctor before trying them. Lupus is a very complex disease and so an expert opinion about any potential adverse effects or interactions with treatments is important.
One example is turmeric - whilst there is a lot of advertising stating that this is an anti-inflammatory and it is marketed towards people with inflammatory conditions, it isn't suitable or safe for everyone. It can affect blood clotting, blood sugar levels and theoretically it can also behave like oestrogen which can cause flares in some people with lupus. Lupus is different for everyone, so what might work for one person doesn't necessarily work for another, or could even be potentially harmful.
Some of the diets listed are not evidence-based and in some cases could be dangerous. The best thing you can do with regards to intolerances is to keep a food diary and try to identify what if triggering symptoms for you - it sounds like you're already doing well in figuring this out. Everyone is different, whether they have lupus or not.
It’s really odd. I’ll eat like crap for a day or two and then feel like crap for a week and a half. Then I’ll give up booze and eat really well for a few weeks to get out of the dumps. Then I’ll spend a few weeks eating crap and drinking booze again and feel great. But then suddenly I will feel like crap again. Then it cycles over and over. For me what I put in my body really makes a difference. Also, I have a certain tolerance for bad poisons such as alcohol, but once I get past the tolerance I am in the pits. However nothing I mean nothing is more painful in my life when my joints are in pain! There is no reprieve until steroids! That saved my life. Also so glad to be off steroids! Men with lupus, Ive read is much more intense. But maybe because we are such wussies?
I am absolutely prone to intolerances - chemical and food. I've been on the autoimmune protocol with a few additions that I can tolerate. I realise now that it's not so much a healing diet as a 'cutting out things that make me flare' diet.
That said, my lupus antibodies are down to near zero and the docs think I have fibro, and intolerances are one of the symptoms of fibro. That said, they don't know much about it. There's lots of continuity between different autoimmune and inflammatory conditions.
The thing I've learned is that diet is important, but what is critical above all is dealing with stress.
Loss of oral and chemical tolerance very much ties to loss of self tolerance and autoimmunity. You are most definitely right and not alone. I started with chemical sensitivities which are affecting me quite a lot, then food issues. I am now grain (not just gluten), dairy, nightshade, caffeine and legume free. Also careful to keep FODMAPs down (like your onion and garlic). I have ditched all of my personal care products, cleaning products etc for the least toxic alternatives and eat clean, organic where possible. I know that some of my difficulty is genetic - poor methylation affects your ability to deal with toxins and histamine, but that is only one part of the puzzle. The tricky bit is that we are aiming to widen the amount that we eat and are exposed to, rather than reduce it, to prevent narrowing the microbiome even further. Datis Kharrazian seems to be the man of the moment re loss of tolerance and is advertising a new programme (which you have to pay for) drkharrazian.ontraport.com/... but this bit from his website tells you a bit more for free drknews.com/food-sensitivit.... Best wishes
I noticed that you have said that you are caffeine free. Can I ask how this has helped? I feel like I am running on caffeine and plaquenil to get through the day. I have 4 or 5 double espressos using organic freshly ground coffee beans each day and it really helps my energy levels. I have also read that coffee is good for the liver (I have liver problems) so have felt justified in indulging. I drink it black and without sugar. Do you find giving up caffeine has helped you?
I used to drink a lot, mugsful, of strong, sweet tea plus the odd coffee. When I started realising that my thyroid wasn't working properly in spite of everyone insisting that it was, I read that tea and coffee have a depressant effect on thyroid function and that tea contains quite a lot of natural fluoride, also not good for the thyroid. (I've since read other views on coffee being good for the thyroid, but that was what I believed then). I cut it down, then when I gave up dairy, stopped altogether. Some of the autoimmune plans say to keep it low (Tom O'Bryan doesn't say give it up but if you are drinking it all day you are damaging your gut. He says caffeine can contribute to gut inflammation, leaky gut and bacterial infections. He does mention the problem of gluten in instant which obviously won't be an issue for you.) I do feel better without it, but that doesn't mean you would or should. I did a genetic test a few months ago and amongst other things found that I have a predisposition to poor caffeine breakdown - the enzyme/s affected also metabolize oestrogen, so if oestrogen dominant, it is better to avoid caffeine so you have more enzyme capability to deal with the oestrogen. I have other oestrogen and detox affecting variants and tested my detox function, which is poor, so I'm giving it all the help I can! (Most of the time now I can't even be in a room with a cup of strong coffee and I used to love espresso). Best wishes
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