Sticky Blood-Hughes Syndrome Support
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Keto diet and aps

Hi I joined a while back. I find this site very informative I did a lot of reading about aps. I was diagnosed with lupus SLE back in 1990 and two or three years after I had optic neuritis in my right my eye and lost sight in that eye. After that they told me I had thick blood and that I should be on Warfarin for the rest of my life.I had five miscarriages before my diagnosis of lupus nobody really knew what was going on never had a full-term baby. I’ve been doing really good the last 28 years my doctors are awesome I just wish they would’ve told me exactly what I had instead of saying I had thick blood. I guess it’s partly my fault to never asking. Last week I was sent to a haematologist who is top in our area for APS and blood disorders very nice man and also there’s also a good rheumatologist there. My question is has anybody ever gone on the keto diet with Aps.. I forgot to ask my doctor because we were talking about so many other things that it slipped my mind.

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Hi, a lot of people with autoimmune disease seem to do quite well on a Keto or Paleo diet, they are all along the lines of stone age diet. I considered this, but I can't make myself eat that amount of meat! However I have been gluten free for years, and because of this, I am careful to eat 5 brazil nuts a day for my Selenium needs, which can be low when you give up wholemeal products. Also to say if you are thinking of a new diet, be very careful with your Warfarin dosing if you are on that. I follow a Mediterranean diet, with a host of supplements and also daily exercise. MaryF

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It’s sugar wheat & grains that causes plaque in the arteries not healthy fats.

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Yes I avoid trans fats or also low fat, I just eat a healthy Mediterranean diet, minus gluten, with brazil nuts added in. MaryF

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Also I hope you don't mind me asking, do you have a diagnosis for Hughes Syndrome/APS as this forum is specifically for that, please can you confirm. MaryF

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Thank you Mary. So you’re saying that even though I have aPS I can go on the keto diet because. I was reading that some people develop clots while being on the keto diet. From the high fat that they eat.

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Mary was giving you info, not a recommendation to do anything. When in doubt, don't.

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Hi Rosemary 762I0 I realize that Mary was only giving me info it’s up to me to make the decision I understand that I guess just the wrong choice of words.

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Maybe you could call the nurse and she could ask the doctor for you. I understand the problem of trying to keep weight off. It gets more complicated with APS. Your meds and other health issues could be a factor in choosing the right diet for you. Just a word of caution, my daughter had to end the high fat/ high protein diet because her cholesterol went sky high. You might watch the type of fats that you eat. Best wishes!

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Healthy fat doesn’t cause clots it’s sugar wheat grains junk that does ..

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I am certainly not saying you should embark on any diet without the relevant input from your medical professionals. MaryF

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I am triplepositive incl Lupus Anticoagulant with high titres and I think we feel very good on a stone age diet.

I can not understand if we should get a clot from a diet. We have too thick blood that has to be thinned by anticoagulation. Green vegetables as brusselsproouts or broccoli etc lower our INR and make our blood thicker which we do not like at all.

I eat green vegetables every day as it is a healthy product but the same amount every day if I

Best wishes!

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I've been eating a Paleo based diet for years, long before I was diagnosed with Aps. I don't eat any more meat than most people tbh. I do however eat lots of vegetables and fruit and eat plenty of nuts too. I'm not careful about what I eat tbh I just eat what I like and what I like is generally considered healthy. I can't stand avocado or kale so I juice them with other veg and as long as I add a chunk of lemon complete with skin I can't taste the stuff I don't like. What is it about the keto diet that's bugging you?

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Hi Tucson. Nothing is really bothering me about the keto diet I was just wondering if anybody did go on it being on warfarin, that’s all.

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As said previously here. It will be the veggies high in K that would be more likely to give you a problem, meats typically aren’t that high in vitamin k, veggies are.

Best be said whatever you decide to do,do it in moderation and try to be consistent on a daily basis. Good wishes. I hope this helped!

I see you are in Canada, great to know you have a doctor who knows APS

Cindy in Nj, US

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I'd say make the change gradually and be consistent with what you eat, that way you are less likely to encounter any problems with Warfarin.

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I am in that kind of diet right now. And been struggling with INR. Even I don't eat greens too much, INR is difficult to get higher. Gradually it has raised by increasing Warfarin dose. I think absorbment gets better and K vitamin absorbs better too. Also I found this: ncbi.nlm.nih.gov/pubmed/157... .I consulted health care professional about this diet.

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Thank you for the read Leenalina1😌

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Cath Atkins from Scotland talks about this. She has a book called Eat on Warfarin. ( Eating on Warfarin ?) She herself has APS. She can be heard giving a speech on Patients day HSF presented by Dr Hughes and his colleagues. She makes reference to the protein issue with warfarin . ( you can give it a google)

She also has a blog.

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I went on a “detox” diet in fall of 2016. My local docs were very supportive and the only changes were: 1 the elimination/reduction diet helped ID a previous unknown cashew allergy,:2 I lost 25 lbs;3, my inflammatory blood markers went to optimal range; 4 my slowly worsening stomach problems all resolved,: 5 I’m living in a brand new body!

Since relaxing the diet a bit I have gained back 10 Lbs, but my weight remains stable since that initial gain back. My INR did have to be raised a tad but my hematologist attributes the need for higher number to healed gut more than to extra green veggies. As that horrid brown streak syndrome disappeared on the diet, I tend to agree.

So yes, I do now eat the occasional carb, but more nuts, fruits and veggies have been great for me! ( And have never heard that more fat in diet contributes to sluggish blood. Nor have I experienced that at all.In fact, as noted above, I seem to be healthier on a higher fat diet.)

So now I follow a mostly paleo/ketogenic diet. Mostly.

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Hi GinaD. I was just saying what I read about the high fat that’s all .Some people say it doesn’t some people say does while on the keto diet.But the people that did get blood clots where later diagnosed with APS. Or being tested for it and were not on blood thinners.

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Most important diet issue for APS is discovering unknown food allergies and, if on warfarin to be consistent in Vitamin K intake. Note: a common misconception that we read on this forum is belief that INR numbers apply to all therapy measurements. No, just warfarin.

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Some years ago doctors made an association between high fat foods and high cholesterol in blood and heart attacks and blood clots — as if the fat you eat goes straight into your blood. Now that IMHO opinion silly assumption has been put to rest. But many people listed carefully to those old 1980s - 90s advice to avoid fat, and they still cling to that rule.

But its not true. I recently read a book where the author compared the “false high fat =s high cholesterol” to a metaphor of a drunk searching for his car keys under a street lamp. A stranger, trying to help, asked “So where were you when you dropped your keys?” “Over there,” said the drunk. “So why are you searching here?” “This is where the light is.” Back in the day, you see, our biochemistry wasn’t as good as it is now and biochemists did not understand something that I would thought they had gleaned in grade school — that which is absorbed and digested iis biochemically changed.

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Are you totally confused now, Kooldog?!

Sorry! We can be also. Mainly - steady as she goes- no drastic changes- keep greens the same- protein in good. However check out Leenalina- and my reply to her. That’s the most targeted answer to your specific question. ( I think- but who knows!)

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I have APS, 5 kids, stroke @ 27 & have been on Keto diet for 5 weeks now as well as a workout program. I have gotten my blood pressure down, my weight down, energy levels up, my body feels closer to 36 instead of 90. Talk to dr. I check my inr at home weekly & we are always changing my doseage so best of luck but i am doing it! Best of luck! Hope this helps your main question!

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