Not sure how the rest of folks on this site are treating their APS, but on a lot of other sites I see a heavy bias towards medication. People take one thing for pain, another for GERD, something else for neurological issues, and of course, Coumadin and/or Heparin.
Now I am not against medicine. I take my Coumadin religiously and have my INR checked. However, I do believe in getting at the source of the problem more directly; and if it is possible to address the autoimmunity issue directly, I want to do this.
For this reason, I am about the embark on a dietary protocol designed to address autoimmune issues.
About 7 months ago I started eating essentially a Paleo diet in order to address rising blood sugar levels and obesity. It worked extremely well for me. In addition to the 50 pounds I had lost through exercise, I lost almost another 50 pounds by eating Paleo, and I am not just about at my target body weight.
It just so happens that there is a "Paleo Autoimmunity Protocol." I did not do this at first, because I was not really entirely aware of all the implications of having APS. However, now that I have had a serious flare of my APS, I feel now is the time to do the autoimmune protocol.
For those who are unfamiliar with the Paleo diet, the thinking goes like this: human beings developed as hunter gatherers and remained as such for thousands of years. Agriculture and the modern diet came much later. Therefore, there are certain foods that better suit our systems than others, and most of those were the ones we ate in pre-modern times.
With regard to autoimmunity, Paleo proponents are concerned with something called intestinal permeability, otherwise known as leaky gut. Basically, lots of our neolithic foods and the modern diet work to damage the guy lining, allowing certain offensive substances to cross the gut barrier and to enter the blood stream. Once in the blood stream, the body mounts an immune response to these foreign substances. By definition that immune response is inflammatory.
I don't know to what extent APS is effected by other inflammatory events taking place in the body; but I plan to give this a try to work on keeping myself out of the inflammatory state in general. I suppose this would, at the very least, have a positive impact on my overall health.
Is anyone else focused on anti-inflammatory diet protocols? If so, what are they and what success have you had?
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TheKid
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Very interesting - not sure how much a change in diet can calm antibodies once the immunological response has started but I have read that selenium (found in Brazil nuts) can 'calm' thyroid antibodies so I guess it's possible.
On a side note I've found that the FODMAP diet has been a huge help for my IBS symptoms but I still get times where it feels like my stomach just stops working altogether and have an awful few hours. Only happens occassionally though.
As a sufferer of APS, psoriatic arthropathy, psoriarsis, sjogroens and now slow thyroid, I do take very good care of my diet and exercise: This has been in place for decades. Followed on from my own mother's stance, ie plenty of oily fish, fresh veg and fruit and virtually no quick or junk foods. I try to take as many vitamins as possible from diet itself, and I limit the intake of gluten. As I am not eating bread really, I make sure for instance, that I have a couple of brazil nuts a day, for the selenium, which is so depleted from modern diets. For the vitamin e my skin condition needs, half an avocado a day, plus all salad dressings made from cold pressed olive oil etc etc.
If I am away from home and I do not eat the amount of fresh steamed veg, salads, beans, nuts etc, alongside free range or organic meat and fish. I am considerably worse. This of course combined with daily exercise which as we all know is difficult with the fatigue from APS or various other disorders.
I vary my diet, so for instance if we have had brown rice one day, then potatoes the next etc etc, I don't eat red meat more than once a week, and chicken and fish more relied on. I find I do better on goats milk, and fresh yogurts and free range eggs rather than relying on cheese, this is not eliminated but, as above I rotate my proteins and vary them and limit some of them. Yes we do have the odd cake or treat, but they are seen as treats rather than a dietary staple. I do not use ready meals, During periods of time, when feeling less compromised by maddening health issues. I make up large amounts of home made sauces/meals for the freezer. Any form of take away, which is very infrequent, makes all my symptoms worse.
When the children want to have something.. ie pudding/cake etc they make it themselves if possible. I also take a strong probiotic daily which has cut down the amount of sickness bugs i catch with my immune systme compromised, also the amount of antitobiotics I have had over the years. This has calmed my stomach down considerably. If my stomach is particularly sore I also take manuka honey in warm water. My children used to catch endless sick bugs via school, since the probiotic, less easily caught and when caught less impact.
My breakfast at the start of the day to give me slow release energy as life is a real struggle currently, is usually porridge oats made with water, topped with mixed nuts and seeds, (lightly toasted), blueberries, raspberries, banana, pomegranate , manuka honey and a large spoon of low fat greek yog. I buy frozen fruits on offer in bulk to do this, when fresh too expensive. I snack on apples during the day or more bananas.
I think we with APS, especially those on anticolags... any form of supplement or dietary change needs to be supervised by medical teams armed with the correct knowledge. As certain foods/supplements are known to play havoc with INR levels. other contributors will explain this better than I can!
I make sure I keep my weight and my cholesterol down, which with fatigue is not easy, but as a family we persist.
I am in the middle of being assessed now. However I do take, cold pressed flaxsseed oil caps.
Evening primrose oil
oil fish supplements
probiotic
ester c
b complex
Q10
So although not quite doing the diet itself. at least half is similar to the principle behind it, ie simple food for maximum nutrition.
Hope nobody has nodded off reading this zzzzzzzzzzzzz etc snore.
Have had a look into the paleo diet. I eat fairly similar to Mary above, although do have occassional lapses. We eat free range meat, eggs etc, I cut out dairy and gluten, as abdo pain worse after eating.
Interesting subject (Mary not falling asleep zzzzz!!!!) lol!!!
I have familial high cholesterol (thanks mum n dad) so on statins. Do take vit d with calcium as have low vit d levels. But definately no other supplements!!! Advice of lupus nurse!!!
Yes, I take a cholestrol lowering drink every day, and eat foods which lower cholestrol ie oats, avocadoes, walnuts, blueberries, brown rice, sweet potatoes etc etc and I add lentils beans and pulses to meal... the typical mediterranean way to eat. The oats appear to be very beneficial, which is a daily thing for me. Also in terms of chocolate. I buy very strong black chocolate less is more etc etc. I always stick cannelleni beans or kidney beans in lean lamb bolognaise etc etc. There is plenty of info out there on low cholestrerol diets which are not boring x
Can you explain diff between paleo and neolithic diet?
Also what do you mean when you say bias toward medicine? Taking it, not taking it?
It seems some of you are really looking after your health quite well in terms of diet. Great going! Keep up the good work. In response to Cindy, I have to say I am not sure exactly how the Paleo Autoimmune Protocol would impact the issue of antibodies being present. I don't know the exact mechanisms at play when it comes to antibodies doing what they do. And since we are not 100% sure how APS starts, it is unclear if diet will help.
I know with Celiac disease, you just remove the irritant: Gluten. Could the same be true of APS? I don't know. But I am willing to give diet a shot, since we know there are well known foods that can produce an allergic or inflammatory response.
I am trying to stay off as many meds as possible. And an immuno-suppressant sounds like it probably has quite a number of side effects. So if an immune-suppressant is supposed to generally calm down the immune system, then I am wondering if there are other ways to generally calm it down as well -- namely, diet.
The foods I would be avoiding are as follows:
- eggs
- sugar
- dairy
- grains
- nightshades (tomatoes, eggplants, peppers, white potatoes, etc.)
- legumes
- and any other foods that are more recent additions to the human diet
Kristina, Paleo is essentially more hunter-gatherer in nature. Neolithic refers to the foods that enter the human diet with the advent of agriculture and more settled living. And of course, in our modern diets, so much of what we eat diverges from what our bodies are probably best suited to digest and utilize. Aspartame, Yellow Dye #40, stabilizers and preservatives aren't things our bodies were really designed to handle. This is not to say that our bodies aren't adaptable, but there are just some things that are more easily assimilated by our bodies.
You might check out robbwolf.com for more information. I've been reading his book. I also consult with a functional medicine specialist named Chis Kresser (chriskresser.com) who often used Paleo as a basis for some of his dietary recommendations.
Everyone is unique and some things work for some folks and not for others. As I noted before, I was using the Paleo approach to fix my metabolic issues (I was well overweight and was headed towards pre-diabetes). I'm quite pleased with the outcome.
So I just thought I might give the autoimmune protocol a try to see if it addresses any of the APS symptoms I've been experiencing.
Kristina, sorry, forgot to answer you regarding the "bias towards medicine" comment. What I mean is that in my experience with doctors, they tend to want to diagnose and then medicate in order to address the symptoms, as opposed to aggressively treating the problem.
For instance, I was 305 pounds with all sorts of signs of metabolic dysfunction and inflammation. So the doctors were happy to give me NSAIDs for joint pain and blood pressure meds. They also wanted me to start a statin.
That's all well and good in order to address some immediate issues. Obviously its not good to walk around with high blood pressure and achy joints. But they didn't fix the problem.
Most of what they advised was useless. They said, lose weight and eat better. But there wasn't anything really prescribed in that light. There was no clear course of action. They sent me to a dietician who clearly didn't know what she was talking about and she just gave me some advice about serving size and overall activity.
I needed someone to address the metabolic problem from the source in the same rigorous manner they had diagnosed and treated my symptoms
So now, with APS, I am more interested in understanding the mechanisms that drive all of what is happening to us, so that, if possible, we can address those mechanism as opposed to just painting over the symptoms, while the underlying issue remains.
It has been found that low GI diets improve the quality of life for lupus patients and there is anecdotal evidence that the same occurs in Hughes.
I did the South Beach diet about four years ago and couldn't believe a) it really worked (lost a stone in a month and haven't put it back on again) and b) it made my daily headaches disappear. I think it's got something to do with making your blood sugar remain stable rather than peaking and troughing.
It's always good to hear about the positive results of diets and I also believe that we can try to help ourselves as well as take any necessary medication.
Could someone email me the diet that you recommend, have tried printing it from this blog but failed and am keen to use food as the way to help as well as all the medication of course but it would be a way for me to control things myself!
Here are some links. I started my diet journey by reading about everything Robb Wolf has on his website. The quick start guide will tell you which foods to eliminate for the autoimmune protocol. And of course, you will have to go through and eliminate the vitamin K rich foods that APS people have to avoid. Happy eating!
I eat a diet which completely excludes animal products, based on wholefoods, lots of beans, brown rice nuts and seeds, I have fortified soya milk and rice milk instead of cows' milk, also it's low fat.
I abstain completely from alcohol and smoking and eat very little sugar.
I find I suffer with acid if I eat fatty food.
I would not nessarily recommed my diet to anyone, it has been something I have evolved over the last 20 years or so, based on my ethical and religious beliefs.
If it was any kind of cure for my condition I wouldn't be on this group, would I?
In my opinion eating is a personal thing and its not something most people want to to be pushed with or judged on.
Herb, I absolutely agree about diet being a very personal thing. I do not believe that there is any one diet that can be followed to the letter by everyone. In fact, even in the so-called Paleo community, there is a lot of variety. I consult with a functional medicine specialist named Chris Kresser who firmly believes that diets have to be tailored to each individual based on their specific needs.
There seems to have been some benefit in following the Paleo diet amongst some with various autoimmune diseases, and so I posted here just to get a feel for what other folks are doing.
I am open to anything that works, to be frank. I used a Paleoish diet to address my weight and metabolic issues and it worked. And I'll stick with it so long as I continue to see benefit. And if it helps with autoimmunity, then that would be great as well.
But I would be happy to explore other dietary interventions for APS as well.
Hi TheKid - ive just been diagnosed with APS and have begun a Paleo diet in the last weeks - im still learning and researching and have also come across the AI protocol in all my readings. Just wondering if this provided you any benefit in calming systemic inflammation and if you reintroduced anyfoods successfully. I have elminiated all nightshades and other AIP foods but really struggle with excluding nuts.. I noticed it had been a year since the last post and wondered how has this gone for you?
Prior to being on clexane or any blood thinners I tried a similar diet. All different kinds of greens, fresh fruits, farm raised chicken & eggs, basically similar to the Paleo diet. I was so sick & inflamed. My symptoms got worse. Today if I eat anything with high vitamin K I am inflamed. Maybe my blood is not thin enough? I agree I need to work on my diet & get my gut healthy. ? How
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