A good news story

[yakamalayo]

I love hearing positive stories and then realised I had one myself so thought I'd post it hoping these boost other people's optimism too! Just been on holiday in Ireland (thought it would be the safest place to avoid too much sunshine!). First summer since my daughter was diagnosed. She had one flare (exhaustion wipe-out) after the sun shone through her window when she was still asleep on the first morning, without suncream on, but after that (and taking a lot of care with the sun) she was absolutely fine. Felt completely normal and able to go for long walks up mountains, go out in the evening, etc.

She does stick to a very strict diet - completely gluten and dairy free and no refined sugar - which we think may be helping a lot, as she seems to be coping brilliantly with minimal symptoms. Incidentally, SW Ireland is a brilliant place for food; the food was incredible! Fresh, local, delicious and fantastic value, whether at a cafe, put, restaurant, B&B or whatever. They also have the highest incidence of Coeliacs in the world, so gluten (and dairy) free is completely run-of-the-mill to them. Even had puddings she could eat in pubs!

So I'm keeping my fingers crossed she stays well and am really hoping for a full and complete recovery, however unlikely that is supposed to be.

[Maya23]

Thanks that's great news! I have also found that a strict gluten free diet (and sugar free and low dairy) has helped me too. Always encouraging to hear of others getting good results on this too. I'm now taking LDN which seems to be helping me further (I didn't react well to other lupus drugs so I researched alternatives and get this prescribed by a private doctor).

[yakamalayo in reply to Maya23]

What is LDN?

[Maya23 in reply to yakamalayo]

Low Dose Naltrexone.

Here's a link to a youtube video about it.

youtube.com/watch?v=z0p0ykS...(Not working as expected?)

It's not yet licensed to use at low doses for autoimmunity through NICE but it's known to be perfectly safe at high doses for other purposes, and has been used successfully for many years, especially those in the MS community.

[yakamalayo]

Thanks for that.

[Asarahjohnson]

So glad. How long has your daughter been gluten free now?

I didn't know Ireland had so many coeliacs.

[yakamalayo]

She started the diet a couple of weeks after she was diagnosed at the end of October, so I guess it's been roughly 8 or 9 months now.

[Bronagh2015]

Hi, I'm delighted for your daughter and also that your trip to Ireland proved to be so enjoyable! We may get our fair share of rain and mists here but I believe we do make up for it by our hospitality and wonderful wholesome food. 😊 🍀