Do i need a diet?

[Jaylowdancer]

So ive been diagnosed with MCTD, RA,NSIP and Lung disease for about 8 months now. Ive seen my reumy almost every month and she has never metioned a diet or certain foods i cant eat.

Are there certain foods i should avoid and should be eating?

[Treetop33]

I've been diagnosed with Lupus recently and put myself on an anti-inflammatory diet and use supplements. I can't tell you whether it makes a difference or not, but I thought it was worth a try (because it also ironically eliminates my reflux and losing weight can't be bad). This is a good article for Lupus but you can do a search for your specific combination of conditions - draxe.com/top-5-lupus-natur....

I've already found though that one can get a bit obsessed with reactive foods, so I'm just sticking to some basic principles and trying not to lose my head. I'm eating much healthier as a result.

I do wish nutrition and other respectable alternative health remedies were more discussed by doctors though. I understand they don't want to give false hope or encourage people not to take meds, but it does matter.

[Jaylowdancer in reply to Treetop33]

Thank you. Because of the Nsip i have lost some weight and for some reason I continued to lose by changing my diet. But thats because i liked the way I looked and i needed more energy to do basic walking every day. At least i know im not the only one.

Thank you again for the article as well.

[mirren]

You are on immunosuppressive medication? Should follow the rules of foods to avoid in pregnancy, such as pate and unpasteurised soft cheese etc x

[Wendy39 in reply to mirren]

I have never heard that before or read it on here. Who told you this, out of curiosity?

[Jaylowdancer in reply to mirren]

Never heard of that?

[Wendy39 in reply to Jaylowdancer]

Are you on an immune suppressant too Jaylowdancer?

[mirren]

Rheum nurse when i started mtx, but reinforced when started biologics x

[Wendy39 in reply to mirren]

Gosh I have never heard of it at all??? I'm on 3g Mycophenolate Mofetil a day (MMF) which is the max dosage. I will need to look into this.

[mirren in reply to Wendy39]

google.co.uk/url?sa=t&sourc...

[Wendy39 in reply to mirren]

Wow! I've been eating as normal since being on MMF. Why has no one ever mentioned this to me? It's quite shocking really. Thanks for the link. Wendy

[Maureenpearl in reply to mirren]

I have had Rituximab infusions and I wasn't told about the above foods although I decided not to eat the above cheeses and also mushrooms because of mould and fungi. I also have been eating hard boiled eggs and if fried I have the yoke solid and not runny.

I'm just amazed that I've deserned the above foods to be wrong for eating when you have a autoimmune condition.

[Wendy39 in reply to Maureenpearl]

I find it so hard to accept the different levels of care and advice we receive. How many of us have never heard of this and are on immune suppressant medication? We should all receive this advice. It's terrible. Well done you for making changes. I'm gutted, as I love cheeses and runny boiled eggs etc. 😬😞 x

[Maureenpearl in reply to Wendy39]

So sorry Wendy that we haven't been told about these foods that could be harmful to our health. Hopefully with this forum we will be able to educate each other. 👍💐🙏👨‍⚕️

[Wendy39]

Hello. I have SCLE and other health issues. I was diagnosed in 2013. I don't think my Rheumy has ever mentioned diet. I have researched SCLE a lot and it just says eat a well balanced healthy diet. I cook about 99% of my families meals from scratch. I don't use jars of sauces or packet mixes etc. I make sure my family have their fresh fruit and veg. We grow potatoes and vegetables in our garden. We are not perfect, but I certainly try the best I can with this disease and cooking for our 3 children. I have researched anti inflammatory foods and super foods etc and try to incorporate these ingredients into our diet. I try to avoid processed foods. I am always wary of extreme diets and think moderation and balance is the key. Have you checked Lupus UKs website? They might have some good advice there. I know we are also supposed to avoid alfalfa sprouts. And I think I read somewhere that garlic in cooking is fine but not as a supplement?? I'll be interested to see what responses you get. Best wishes. Wendy

[Jaylowdancer in reply to Wendy39]

Thank you for your response. Cause i needed to get more energy i did change somethings in my diet. Unfortunately inwork in the city and work at least 13 hours in a day then to come home and cook. It gets exhausting so sometimes we order out. But indo understand the importance of eating healthier for your children and yourself.

If i get more info i would definitely let you know

[Wendy39 in reply to Jaylowdancer]

Crikey, you have an amazing amount of energy if you can work a 13 hour day in the city! Hats off to you. But I guess we all should think about eating as healthily as we possibly can, with our disease. We all want more more energy. I wish there was a magic pill for that symptom. It's by far the worst and most frustrating one for me and my family. Best wishes. Wendy

[Paul_Howard Partner LUPUS UK]

Hi Jaylowdancer ,

Have you thought about discussing your diet with your GP or rheumatologist at your next appointment?

We published an article on our blog a few months ago about diet and healthy eating in lupus. You can read it at lupusuk.org.uk/diet-and-hea...

The British Lung Foundation’s website also discusses the importance of eating well as well as why it is vital to maintain a healthy diet for people with lung conditions. To find out more click here: blf.org.uk/support-for-you/...