My cholesterol level is slightly raised and I’m keen to see if I can reduce it without the need for statins through a few key healthy diet modifications and regular exercise, as well as the gentle introduction of the some cholesterol reducing foods, and regular INR monitoring.
I wondered if anyone knows if long-term eating products with Oats in causes any risk/impact for those with only Antiphospholipid Syndrome (no Lupus or other symptoms). The reason I ask is that Oats contain Beta-Glucans which has many health benefits including the reduction/management of cholesterol.
A 60g portion of the cereal Oatibix contains about 1.7g of Beta-Glucans; I’ve been eating this every morning for many months without any issues. However the recommended daily dose of Beta Glucans for it to make a beneficial health difference is 3g per day which is what want to increase my intake to without being dependant on having a massive portion of cereal every morning! I have found a product called Oatwell (oatwell.co.uk) which is exceptionally well reviewed for its effectiveness and enables taking the additional (small amount) of 1.3g of Beta-Glucans as a powder mixed in a drink (I would only need to mix 4.8g of the Oatwell powder to achieve the 1.3g of Beta-Glucans). I checked with my clinic and there's no interaction with Warfarin.
So the question I have is, since Beta-Glucans are said to stimulate the immune system, will long-term consumption of a small qty of 3g per day cause any harm or additional risk to anyone who has an Autoimmune Condition such as Antiphospholipid Syndrome or is this only a risk when much larger quantities are eaten. The fact is that most foods containing barley fibre, oats and whole grains, reishi, maitake and shiitake mushrooms, seaweed, algae have levels of Beta-Glucans in so many people with APS may be eating some of it without realising anyway!
The Internet is a little reassuring but not fully, it says: There are numerous autoimmune conditions and each one is unique. Most of the time the biggest concern is overstimulation of the immune system, which causes a person’s immune system to attack itself. However, by definition Beta Glucan is an immunomodulator and never causes over-stimulation. The studies are still very much unclear about the exact benefit a person with an autoimmune condition may receive by taking Beta Glucan, but there are no known side effects.
Has anyone else eaten Oats or a similar food containing up to 3g of Beta-Glucans on a daily basis for managing cholesterol or heard of any risks in associating with APS?
Thanks in advance…
Stuart.
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StuartD
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Oats are in the resistant starch, high fiber group and the latest research by Yale is showing a high resistant starch diet, by balancing gut flora, is helpful in controlling disease in APS mice . So it might even be a helpful addition to your diet with or with out statins.
I must say I spent over a year controlling my cholesterol by diet. I successfully kept it under 200 but after my stroke they put me on Lipitor because of its anti inflammatory properties not to lower my numbers and now My cholesterol went down to 135 from 180 in less than four weeks and I feel better, even with my stroke deficits than I have in years. I wish I started the statins earlier. Statins are a promising newer treatment for APS. They are considering their use in non cholesterol patients because the research shows they might provide properties that prevent clotting and inflammation.
I can’t comment on the effectiveness of oats. I will echo what Roarah says that statins are being studied as a treatment for APS. All risk factors should be aggressively addressed in APS patients. Lowering your cholesterol will cut your cardiovascular risk and may also help to prevent clotting. My vote: Go on the statins!
Hi - thanks for your replies, surely it's better to avoid further medications if it's possible to safely do so so as to avoid interactions with Warfarin and the impact to INR levels?
I am not on warfarin as I am awaiting my second antibody test to confirm the need for it. I am on ASA and plavix presently in addition to a statin. I am generally very holistic and am presently having 30 grams of fiber per day, mediating and exercising an hour per day to try and holistically decrease my beta 2s so I can hopefully avoid warfarin but if that does not work than I will willingly take warfarin with my statins because I now realize how much more efficient the statin did the job :).
I will continue my diet, meditation, exercise and neuropsychological therapy though either way because they are working to elevate so many other symptoms like my fatigue, joint pain, brain fog, aphasia and other APS blamed symptoms. I feel better now after two strokes at the end of last year than I have in years by treating my high anxiety and using blood thinners and a statin. I think the medicines can enhance holistic practices and visa versa.
Yes, if there are no statins that do not interact with warfarin. But reducing cardiovascular risk is important too. And statins seem to have an anti-inflammatory effect that may help with APS. You and yours doctors will have to decide what is best for you. The plaque in my carotid arteries has not progressed after two years of aggressive statin medication. Diet cannot achieve those results.
Do you know if there is a blood test that indicates the level of inflammation in one's body that therefore helps make an informed decision on the use of statins outside of if they are needed or not for reducing cholesterol?
I don’t. I think it is way more complicated than that. Inflammation is involved in so much. The real issue for you is if your mild elevation of cholesterol warrants medication. Usually it does not, and they prefer patients bring it down through diet. But when people have systemic autoimmune disease (maybe now with APS) the bar may be much lower. They no longer just look at the LDL, but look at many factors. As an example, my LDL is driven to 53 because of certain risk factors (including anti-cardiolipin positive) to try to prevent cardiovascular disease and stroke. If you do not have heart disease in your family, that would be a great sign. Are your doctors advocating the statins or did they say to adjust diet and exercise?
I don't have a history of heart disease in my family. I went to the GP this morning to discuss my recent blood tests and he was keen to retest my cholesterol level and CRP (Inflammation) in a couple months to see if my 'new' diet and exercise will have a positive impact and then re-evaluate based on the results.
He wasn't too concerned with it being 6.1 or that statins would be needed at my age (43) so will have to see what the results are in a few months and decide if I ask for a referral to Prof . I don't actually think my GP will give the best advice though if there is a need for further action, I've never had a great deal of confidence that GPs know much about APS! So will definitely be asking for a referral to St.Thomas's.
Sounds reasonable. That is great that you do not have a family history of heart disease. I agree that only someone with a lot of expertise with APS would be able to make the best decision. If you want the best possible opinion, I would try to see a preventive cardiologist. This is exactly what these guys do. They know everything about lipids, statins, risk factors. And they would know a lot about the warfarin-statin risks. It is just my opinion. I know in the U.K. it is not as easy to see a specialist. I am so grateful to both my rheumatologist and neurologist to get me to the stroke and cardiology prevention centers. I can tell you want to well-informed. These are important considerations for many.
You are correct, I really do want to be informed but I also don't want to create unnecessary panic and anxiety for myself. Right now I have APS and no other symptoms of anything else besides the raised cholesterol and so I don't want to take myself down a path that introduces more risk or impact to my life if it isn't truly necessary. I've not heard of a preventive cardiologist before, will look into that! Thanks...
My cardiologist has put me on this, well crestor, since my initial stroke also as an anti inflammatory and to reduce aps antibody production... ive never had high cholesterol and still dont. I also do not have much in the way of inflammation either and never-have ..so its working for me too
I can say i used to eat cereal every morning when i was on warfarin ( im now on lovenox) and that was at the beginning of all of this...meaning my diagnosis of stroke and APS... i dont know if that started me on the right anti inflammation path...sorry i cant be more helpful.
Hi, It is important before you change your diet to check with your GP and Consultant. I myself, (with access to one of the best nutritionists) in the UK, having studied under doctors all over the world, both in and outside of the UK health system. Has checked everything I do. Also do ask your GP and Consultant about starting exercise, you need to build up gradually. I vary what I do, for instance today I am recovering from being seriously ill, so no gym in my garage for me today, but instead a 45 minute walk, with a rucksack to fetch provisions and call in on somebody local to me.
I work out daily, so do my children, I follow a Mediterranean, Low G.I diet, minus gluten, but with 5 Brazil nuts added in per day for the Selenium I need. I also order my own private panels of health checks for myself and family in between our visits to specialists. I eat red meat a couple of times a month and lots of oily fish. I maintain good levels of Folate, Ferritin and D plus my B12 and my Thyroid Function is good, however only as I monitor it myself beyond the scanty tests done at the GP or hospital. I also maintain a good weight, you are what you eat to a certain extent, but if you Thyroid is not working it is hard to maintain a sensible weight.
I also take a host of supplements daily which I find greatly help me, my later parents were very interested in nutrition, my father trained as a doctor and my mother was a senior ward sister, together they have a great interest in exercise and diet, which was clearly passed on by default to my own family.
I also avoid trans fats also called hydrogenated fats, and I keep sugar to a minimum treat here or there if I go out. I also limit alcohol to social occasions and never more than twice a week. I also avoid artificial sugars/sweeteners which can upset the gut microbes. I do not do low fat, I just make healthy choices. I also food combine, ie beans and pulses with richer foods soak up Cholesterol.
Exercise is vital, to help with lowering the wrong sort of Cholesterol, as is keeping an eye on your Thyroid, if that function is low, your Cholesterol can rise, not hard to work out the connection with Thyroid patients and gallbladder problems. Also low vitamin D causes antibodies to rise which cause inflammation, low B12 can effect the Cholesterol also plus the cardiovascular system.
Statins are not for me, I have very serious drug allergies that are life threatening, so I just do my best to keep healthy the old fashioned way.
Thanks Mary. Sorry for the silly questions - but what is the test for Thyroid function? And if I had a problem with it what are the other signs other than raised cholesterol?
How do you find a good nutritionist that understands the impact on what you eat with Warfarin and APS etc?
The book by Cath Atkin, Eat on Warfarin is a good starting point if you are on that. The British Nutrition Foundation is a good starting point. I can ask mine which registers to search if you want? Regarding Thyroid problem, please read Thyroid UK's site: thyroiduk.org/ and they also have a very good forum with skilled administrators on this very platform. There is a whole page on every symptom regarding The Thyroid. When you go to the GP often they only do the TSH test. It is best to do a panel like this, (note it has an active B12 test), no need for a Reverse T3 test at this stage if you are not on T4 mono medication like Levo thyroxine. I proved what was wrong with several members of my wider family with this pack, or a similar one, beyond our Hughes Syndrome/APS and Lupus. I will add that my whole family follows the same diet and exercise plan as me!
Sometimes they have special offers and the price goes down a bit, if you have a nurse friend they could take your blood to avoid paying for the blood draw, however do it at the beginning of the week, so it does not get stuck in the post over the week-end.
Thank you for all the info, I had a load of blood tests in Oct last year and again mid Jan a few weeks ago, these included a thyroid function test and ferritin, all of which were fine.
You mentioned that people with APS are gluten free; this is complete news to me! Surely someone would have mentioned this to me in the past 8 years since I was diagnosed! So is that really a fact that everyone who has APS has a totally gluten free diet?
I’m just not sure that it’s practical for me to cut it out completely, with that and eating carefully for cholesterol reduction I’ll have nothing left to eat soon!
My cholesterol only normal on 5 mg statins p d . Can’t eat any normal fat or semi skim milk cheese , all has to be low or no fat or cholesterol readings up.
How to take own cholesterol readings at home ?
Anybody experiencing this - Also I am experiencing heavy sweats at night just head chest back upper arms , cold skin . Tried lowering heating or not . G p doesn’t know . Had every blood test , all clear and t b x Ray . I think it’s obviously my immune from
APS. Have always reacted a bit skinwise if colder, low temp. But temp upto 10 c last night , same sweats . No fevers , body and room
Temp normal . It’s a mystery so far . What’s up with my auto immune ? I take Rivaroxaban. My APS specialist said in 6 monthly review said I’m tolerating it well , (did a raft of blood tests , results later . )not known to cause sweats , bit of A fib. Next ?
I'm not experiencing the degree of sweats that you are but I do sweat and feel hot a lot of the time when everyone else around me says they are cold. My parents tell me that I have been like this since I was a kid so not sure if it's just one of those things or something I should be concerned about.
Beta Glucans are in pretty much every oat based cereal in the supermarkets such as Oatibix but in various different quantities. I'm currently looking for a new one that has a higher amount per serving and have found one called Betavio which I might give a try.
I asked the GP this morning about going gluten free and he suggested not to for now until we have a new set of bloods back in relation to CD. My question is though do people who have APS go on a gluten free diet even if the have no trace of CD?
If my cholesterol level was at a normal level would inflammation still be a concern?
My goodness. This is so interesting to me. I am 76 and was diagnosed about 6 months ago with APS and maybe lupus. I’ve been feeling ill for a very long time but doctors ignored it. My cholesterol has been near 300 since my 30s so I’ve been on cholesterol meds for a long time, taking myself off every now and then. I’m very active, exercise or golf 5 days a week. I also was eating oatmeal EVERY DAY because I
Liked it. My stomach kept getting worse and worse, nausea, etc. my granddaughter is celiac so I was well versed in celiac disease and gluten.
I decided to try going gluten free. No oatmeal. Unbelievable difference. I have an appt. next month with gastro dr. And we’ll see what he says.
It is a lifestyle as many foods contain gluten that
Are not obvious, eg, soy sauce. I haven’t heard of the connection with APS but I will research it and ask dr.
Just thought I'd post an update 2 months since my original post . In the past 8 weeks I have taught myself so much about healthy eating and I made a radical overhaul of my diet cutting out all dairy, red meat, biscuits, cake and chocolate; and adding in daily Oatwell, Benecol, 28g of almonds/walnuts, lots of fruit (including 2 x apples a day) and salads. This resulted in lots of extra INR self-testing - which for the first time in 8 years caused a change in my warfarin dose to accommodate the increased intake of vit-k in foods. I also started exercising more regularly and with a little extra intensity each time. I had a blood test yesterday and the result is a 33% drop in cholesterol which has put me level back into the normal range - all the other blood tests are in a good range too including inflammation which is at its lowest.
I'm pleased that I have been able to reduce my cholesterol without needing Statins and the challenge now of course is to be consistent and maintain everything I have started, despite the pressure I'm getting from my kids to resume my previous Dairy Milk eating habit!!
How many mg daily were you taking before, to maintain your INR range of_____?
And now your eating about the same daily intake of greens, and now your daily mg of warfarin has increased to approximately _____?
Do you mind sharing your lipid panel before and after?
And do you know if you had the geneticclioid L(a) (p)?
Also, what did your doctor think about this- he must want to have you give your testimonial to all of his elevated cholesterol patients!
I’m showing your post to my husband. He is wanting to bring down his cholesterol a bit without having to use statins. We talked about this just last night, in fact. He asked me to pick up salmon for dinner tonight, in fact.
( our 17 year old son is on some insane weight lifting regime and all he wants to do is consume protein ... “ gains, bro... it’s all about the gains.” )
I’m literally face palming as he’s eating us out of house and home...
Yes of course, I’d be happy to share it all with you, and answer any other questions.
I was previously taking Warfarin 3mg Mon-Fri and 4mg Sat & Sun to maintain an INR range of 2.0-3.0; I have never had any problems staying in range without good reason i.e. due to taking some medicine etc. My revised dose now is 5mg Mon-Weds and 4mg Thurs-Sun.
My numbers were:
Serum cholesterol; Jan 2019: 6.1 Yesterday: 4.1
Serum cholesterol/HDL ratio; Jan 2019: 6.1 Yesterday: 4.6
Serum LDL cholesterol level; Jan 2019: 3.8 Yesterday: 2.7
Serum triglycerides; Jan 2019: 3.0 Yesterday: 1.2
Serum C Reactive Protein; Jan 2019: 9 Yesterday: 1
I have been monitoring my weight and blood pressure regularly too; my weight started at 85.6kg and most recently measured at 78.6kg
Here’s how I did it in a little more detail:
I bought this book: ‘Cholesterol Down: Ten Simple Steps to Lower Your Cholesterol in Four Weeks--Without Prescription Drugs’
I didn’t follow the plan in the book but used the information in it to learn what to eat and what not to eat and why it’s good for you. I still like glancing at it every night before bed to reassure myself of what I ate in a day is correct and see what other tips I can pick up to try.
Exercise – I have tried to get to the gym 2 or 3 times a week and when I’m there alternate between walking and running for about 30 mins which usually results in about 2 miles and then use the weight machines or cross trainer. I also have tried to walk as much as possible for short journeys rather than drive or take the train.
Cut Out – Everything that’s considered a red meat and skin on chicken, all sweets, chocolate, cakes, dairy foods/cheese, pizza, butter etc. Ok I had a couple of small biscuits here and there but nothing else; you do have to be very strict with yourself and self-disciplined - I have endured watching my wife and kids eat lots of sweet treats in front of me and just ignored it.
Introduced to my diet – lots more fish, I never used to eat much fish but have forced myself to be more open to trying it and we now have it for 1-2 dinners each week; it needs to be an oily fish like Salmon, Mackerel etc. More salads, beans, peas and lentils, some more dark leafy greens, use olive oil, garlic, avocados. Apples have amazing benefits – I try to eat 2 large apples every day, ideally each after a main meal. For breakfast, I consume 3g of Beta-Glucan every day via a product called Oatwell which I mix with a small bit of Oatibix and usually add some raspberries, blueberries and strawberries to make it tasty, followed by a piece of fruit like a satsuma. Oatwell is great as it comes in individual sachets per day so I can take one with me if I have to travel for work. After dinner I have a benecol yogurt drink (includes plant stenols) every day.
I occasionally have some very dark chocolate when I have a chocolate craving. Any snacking is always with some form of a health bar with very good nutrition values. I initially had green tea regularly but noticed it really decreased my INR so I stopped. Wholemeal breads or rolls, never white bread. The other item I have been introducing slowly is ground flaxseed (aka linseed) which is supposed to have great benefits but I’m not convinced yet if it has an impact on INR so I need to keep monitoring it – at present I’m having 1 tablespoon of this once or twice a week (instead of daily as the book suggests) and it seems to be stable; but only time will tell.
Hope that helps, please let me know if you need more info.
Forgot to mention that also every evening to help avoid snacking I weigh out 28g of a mix of specifically Almonds and Walnuts - both apparently have great benefits.
This all sounds great. My husband already snacks on almonds and dark chocolate. We eat greens every night- great there.
He will be 61 in July. He is a sports enthusiast. He cycles every evening.
He is gaining a little bit of weight - not much. Our son is dragging us down the rabbit hole on his crazy high protein quest and I’m guilty of caving in out if convenience and buying way to many steaks.
We only but whole grain breads ( you call it whole meal in the UK I believe.)
I would like for him to stop eating processed Cheerios. I have steel cut oats with flax seeds. He’s digging in deep against it... “ Cheerios are oats!” He protests... battles galore in the kitchen. ( he’s an engineer... he should know better! 😂)
Our son is less of the teenager the the husband!
He’s not getting the processed vs non processed aspect. ( lower on glycemic index-( takes body longer to burn) keeps you full longer...
He loves apples, berries...
Now to study all these strange words you have give me... I do not know what they are!
Yes, sorry about all the UK terminology! The only suggestions I have from what you said is that it's worth stopping the Cherrios and also have a look at the content of the steel cut oats to ensure your husband is getting the necessary 3g of beta glucans from the portion that he has. Also see if there's a product there that's similar to Benecol in the UK. Obviously also cut out red meat 100% and replace it with oily fishes instead - this will make a big difference.
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