Newly diagnosed with APS: I’m totally... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Newly diagnosed with APS

Mamamisty3 profile image

I’m totally confused and starving. My doctor told me no vitamin K no dairy no grain. I don’t know what to eat. Vitamin K is in everything!! As of now I’m just on aspirin not Walfin, From what I read I can have 90 mg of vitamin K a day on Wafrin I can’t find anything on aspirin. I don’t know how much vitamin K I can have a day safely I love salad and I love fruit. Unfortunately both have high vitamin K can I never have salad or fruit again or how much can I have. Every day Titian I have found doesn’t know anything about APS. I just wanna know a safe amount of vitamin K I can have a day so I can eat. I also have high genetic cholesterol so I know I can’t have a lot of meats so I really don’t know what to do I’m staying away from salad completely I am eating some fruit keeping it under 90 mg of K can anybody please help me thank you

14 Replies

Sorry you are having such a difficult time.The key with vit K is to start off how you mean to go on. You should have a little of what you like but eat it regularly every day. The key is to be consistent so your body gets used to it and then when you go on warfarin it won’t effect it and cause big swings. If you stay on aspirin you don’t need to worry about Vit K.

As far as diary is concerned it’s not an APS thing not to have it but if it’s because of your lipids then you need to have diary alternatives like almond or coconut.

I’d strongly suggest you get your thyroid checked as many people have a low thyroid who have APS and that can cause cholesterol to be high. Once your thyroid is controlled then the cholesterol will go down too.

Grains are usually gluten specifically. So just eat gluten free foods, of which there are many these days.

As for fruit, not heard of any reason to limit it unless you have issues with diabetes or have gut problems. So as ever everything in moderation.

I hope this helps, you really don’t have to worry too much.

Dot69 profile image
Dot69 in reply to Star13

I also have a good diet and not starving, I avoid some Vit K foods but eat small amounts of some which I’ve always done I don’t eat grapefruit or pomegranate or cranberries but just love fruit so eat what I want Cabbage I only have a tiny bit, broccoli similar I love vegetables and it’s being sensible and your body will adapt to these small amounts

Strange how these healthy foods aren’t the same for APS people but you definitely shouldn’t be starving, as for dairy food I’ve not heard of this

I hope you get sorted out with your diet

Hi

Will you be going on warfarin?

I have APS and I take warfarin for it. My warfarin nurse told me to keep my diet the same and she would test me and adapt my warfarin amount to my diet rather than the other way round. So if I keep my diet similar ish each week I mostly have a stable INR.

I eat lots of salad, vegetables and fruit. The only fruit I have actively avoid is grapefruit as I think I read you shouldn’t eat that when taking warfarin. I don’t drink much alcohol but that can affect your INR levels too but I do allow myself the odd glass of wine with a meal.

If my INR level changes my nurse adapts then amount I take.

I hope you get to a good point for yourself as I can’t see the point in totally avoiding healthy food as in my opinion that just creates another health problem as bad diet affects my health for sure.

Take care

Edit to add… I had high cholesterol and once I was put on hydroxychloroquine for the APS and Lupus my cholesterol came right down! I think there is some research to suggest hydroxychloroquine helps with cholesterol even though that is not what I take it for.

HollyHeski profile image
HollyHeskiAdministrator

Hi, welcome I see you have just recently joined.Do you know why your doctor has you on this diet? There is no reason if its because of the aspirin and if your going back onto warfarin, then the key is to have the same amount of vitamin k daily and the amount of warfarin will be adapted to get you to your INR target.

Maybe talk to the doctor and ask why, explain your not eating as you should. I think for you to understand the reasoning will help you and maybe a follow up from your doctor to a dietitian to get a healthy diet plan for you?

Hope you feel better soon x

Hi, I can highly recommend Susan Davis, she’s an Institute of Optimal Nutrition trained nutritionist and was a chef working in Michelin starred restaurants. She loves food and is passionate about healthy eating. She’s also the most up to date and caring practitioner I’ve come across. She’s in the New Forest but also does zoom etc. If you need her number then please text me. She’ll sort you out.

KellyInTexas profile image
KellyInTexasAdministrator

I see you are in the USA.

It’s important to have a hematologist and rheumatologist that share notes about your case and have a very good understanding of APS.

ghicworld.org

I have been told more than once since I was diagnosed with APS in 2004 that warfarin diet requirements have changed. Once upon a time patients were indeed told to avoid K containing foods. But now doctors urge patients " adjust the warfarin to accomodate a healthy diet and not the other way round."Also, some of us (me! Yeah!) keep a stable INR when doseage and K intakes fluctuates bit. I take 7 mgs warfarin 5x week and 8 mgs 2x a week and my INR stays within .2 of my suggested INR. Are you consulting with a hematologist or rheumatologist who has experience treating APS?

Another comment: Dr. Hughes has long noted a correlation between gluten sensitivity and APS. Indeed, since I went gluten free in 2004 all my APS blood work has been negative, though since autoimmune diseases remain life long, I remain on warfarin.

In the US sometimes things are different from the UK. I’ve come across another APS patient in the US who was told to avoid foods with high vitamin k but she was on warfarin. We in the UK don’t ever say restrict vitamin k even if you take warfarin. Vitamin K is used by the body in what’s called the clotting cascade, so it is used to make blood clots. Perhaps the idea is that it is a way of stopping the body from clotting so easily if you restrict vitamin k, that’s just a guess. The reason you can’t find any info on it is because it’s not the usual treatment of APS even if you are only on aspirin as you are.

I’m not sure why you can’t have dairy or grains but it’s not to do with APS I don’t think, but I could be wrong. Dairy free products aren’t too hard to find even in the UK, I use rice milk and there are dairy-free spreads which are fine. I use the Pure range.

I think that he has given you instructions but failed to explain them to you and that’s making it difficult, if not impossible, to follow what he’s told you and maybe you need further info from him. Restricting fruit and veg is an odd concept as you need to eat them for a healthy diet. I would try to get more info on how much you can have and why you are doing it. Then if you need to, talk to a dietician and get them to help you find recipes etc which you can eat.

Does he have a secretary or assistant you can contact to find out your dietary limits?

Do you test positive for dairy allergy and celiac? If so then you should avoid dairy and gluten but if not there is no real evidence just anecdotal that gluten or dairy are harmful for you. Anecdotally, my health has never been better after adding two bowls of gluten full Allbran to my diet.

Even while on warfarin my American hematologist, renown in new APS research, prefers his patients to have more than the recommended amount of K not less for new studies show that patients who eat higher doses of k are more frequently in their INR target range and have far less arterial calcifications present.

If not on warfarin than you do not need to worry about vitamin k consistency at all!

Are you sure you understood your doctor?

KellyInTexas profile image
KellyInTexasAdministrator in reply to user666

Great advise regarding the vitamin K , user 666!

Gluten seems to a trial and error, but most of my doctors here in the USA ( and my gastroenterologist as well) do tend to steer away most ( not all) lupus and lupus spectrum patients away from glutens and casein .

I’d say, each patient should see what his/ her doc says.

Weird, but I do well with oat milk. My immunologist told me not all patients do- it’s a grain, too! Depends on the patients, as we are all so different.

Such trial and error…

I would love to have an excellent hematologist that I could trust....I live in Florida and have no idea where to find one that has knowledge of APS. User666 I would love to know the region you live and who your hematologist is!! I am willing to travel almost anywhere for that opportunity!

Sorry to hear you are having a hard time. When I started taking warfarin 13 years ago I was told by my anticogulation nurse that I could have vitamin K but to be aware of what I was having. She tends to adapt my dosage to keep me in range. I was told to avoid grapefruit and caranberries but everything else was fine in moderation.

I would go back to your Doctor and ask for him to explain what sort of things you should be eating or to refer you to a dietican. Wishing you all the best

Hi I stay clear of high Vit K foods as they have a strong affect on my INR I don't like many dairy product to start so soft or mild cheese I eat rices and pulses regularly just be mindful of what you eat monitor your inr see what affects you and eat as normal as possible.

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