Foods??: Hi guys, I'm lying here feeling sorry for... - LUPUS UK

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Foods??

Alison-Brown profile image
11 Replies

Hi guys, I'm lying here feeling sorry for myself and thinking like I do at least once a day that my diet is pants and I need to do better. This got me thinking, has anybody read any research on foods and Lupus? I was wondering if there is a link between what we eat and how we react to said foods. I know I've put on a lot of weight in the last five months and it's still going up. I need to take control of my body and not let it control me.

I'm taking Hydroxychloroquine, Prednisolone, Amitriptyline, Omeprazole and Calceos.

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Alison-Brown profile image
Alison-Brown
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11 Replies

You'll find a lot. Mainly saying Gluten Free, and Dairy free, many now add sugar free too. However a friend of mine is Gluten & Dairy free and still has bad Lupus.

Maybe just look to move towards a more healthy diet first. More fruit & veg, less snacks, takeaways and ready meal stuff.....

But some swear by the more full on diet modification.

Purpletop profile image
Purpletop

I believe it does. What we put in our bodies is fuel for the body - if we don't put the right things in, or if we put the wrong things (or both), then how can the body function? It isn't only a matter of cutting gluten and dairy out but also add loads of veg, protein etc and eventually the poor body will start to recover little by little.

For some, though, years of medication and chronic inflammation might mean that the damage is irreversible but a good diet and exercise will at least slow down further damage.

Hi Alison.No processed foods..sugar..artificial what ever..and chemicals to retain freshness or color etc.Greens!As natural as you can go!I also read stews,foods cooked in liguid is best..some of us Gluten ...and dairy..milk.This has been my experience reading up on it.

Funny..I have lost weight!like 20 lbs since my diagnosis a year and 8 months ago.I am not in trouble with the weight loss yet..and it's hard to gain on a healthy only diet!There's lots if good info on the web.Just eat as best as you can healthy.Processed is the worst ,though. I call it fake food..just bad for us Lupies!!

I found I have reactions to some foods now I hadn't before...mushrooms! First time I vomited after eating them.Second time,and I had forgotten, I just got real itchy in my throat and lips,as I stopped ASAP as I remembered ..but had eaten just 1,and reacted.

Never had food allergies before!Keep track of what you eat that you react to.I take Plaquenil, too,and amitriptyline, predisone and am going to ask for omezprazole, too.I had been taking it and switched to RX pepcid.

Do you have joint pain,too as I? Mostly,well most painful is my hands,fingers,and feet and ankles.All feel swollen but aren't. My hands are red and inflamed.each joint in all 10 fingers hurt like heck.Like a neuropathy, which I read can and does happen to us from the Inflammation that strikes our nervous system. Haven't found relief yet.Was hoping the Plaquenil will help this,but doesn't. I guess I must see what's my next move med wise.As you know,meds help some of us,but not others.

How about you?Has the Plaquenil helped you?The amitriptyline has helped me sleep wise..and grateful for it!I used to only sleep 4 hours a night!Now I sleep 7...and what a difference!

Just eat healthy.. hope this helps and hope you are fine dunkxx

Alison-Brown profile image
Alison-Brown in reply to

Thanks Dunk.

My Amitriptyline has helped with the sleeping so that's good, and it seems to be keeping the bad heads away. I think the Hydroxychloroquine has slowly started to help, though it was very slow. My hands still ache on and off. Nothing seems to be helping the brain fog and I'm now having trouble with the muscles in my legs, going up through my gluts and lower back. Can't walk very far and climbing the stairs is hard work. Arms feel like lead. i always start my day with 40mg of Omeprazole. It's a life saver!

Take care Alison

Barnclown profile image
Barnclown in reply to Alison-Brown

Great thread! I can relate to your issues...when I was struggling on only daily hydroxy + amitrip + 3 X 4 week 10mg pred tapers per year, my lupus & Vasculitis clinic tried me on daily mycophenolate mofetil (Cellcept)...myco helps me enormously. Now we know that this cocktail of systemic lupus meds is key to facilitating my rehab physio regime for the chronic tendon tightening in my legs & feet (basically a programme of extreme, concerted gastrocnemius stretching). By the way, my global hypermobility (ehlers danlos type) made diagnosing chronic my leg & feet very slow & complicated! Are you hypermobile?

LynJolly profile image
LynJolly

This is a really good book The autoimmune solution - amymyersmd.com/autoimmuneso...

It puts a lot of the environment in context, particularly food

An Epidemic of Absence is a must read too

amazon.com/Epidemic-Absence...

Good luck

Lyn Jolly

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Food and diet can have a big impact on your wellbeing. It is important to bear in mind that with a variable condition like lupus, what works for one person could have no benefit or could potentially be harmful for another. If you are planning on any radical changes to your diet, it is important to seek expert advice to ensure you are getting everything your body needs and that you are not risking any interactions with your medications. We have a booklet about lupus and healthy eating which is a good place to start. You can download a copy at lupusuk.org.uk/publications/

Alison-Brown profile image
Alison-Brown in reply to Paul_Howard

Thanks Paul, I'll have a look.

Alison

Barnclown profile image
Barnclown

I've been on an anti inflammation diet for over 10 years. At 62, most of my consultants are telling me to keep this up because it's helping me to minimise the effects of my infant onset lupus & sjogrens etc. Even my hospital eye clinic thinks this way!

Cann profile image
Cann

I avoid dairy and grains and have been much better since then, in fact I eat what I prepare except occasionally eating out and I eat only when hungry and of whole food. I find this helps with the inflammation, but I also find exercise in moderation and not sitting too long, not overdoing it either - I have to put my body first now and not what I may want to do, although I try to do things I like when I can because this is important to help with the depression of the illness.

I rotate my food not eating the same each day where I can especially with beans and pulses and not too much protein, but I do need protein. We all need different food it seems and we have to work out when and what we need - not easy, but the right food helps just like putting the right fuel in the car - the body won't work without it, but my body doesn't like the modern toxic world either.

Hi..just back from my MD,and was given the omezprazole for my tummy.I also complained about my hands,fingers and feet.He prescribed Celebrex. Anyone ever taken this for the arthritic pains?Thanks much...dunkxx

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