Dietary question

[79andCounting]

When I had an all-over (shoulders, neck, back, hips, knees, etc) flare five years ago, before diagnosis and before Prednisone, one of my doctors suggested an anti-inflammatory diet: no gluten, no dairy, lots of fresh veggies of all colors. During the past five years, I've been about 99% gluten & dairy free... maybe half a dozen times a year I might have something with cheese on it, which the doctor says is okay as long as it's spaced out several weeks apart.

And two years ago, I had a serious flare, and a few months later the most excruciating flare ever. So I keep wondering... why bother with that hugely restrictive diet (I'm so sick of salads with grilled salmon which seems to be the only gluten-free, dairy-free item on many restaurant menus) if I had my worst flares while being on it?

Is there any real evidence that the anti-inflammatory diet works? What experiences have any of you had with it?

[piglette]

I just reduced carbs and gave up gluten. I did not seem to have too much problem with that. However I did continue with dairy. I got an App which helped me check what I was eating. It compared the nutrition I was eating to what I should be eating.

[PMRpro Ambassador]

I am generally low carb but certainly NOT dairy-free - eating carbs doesn't really seem to worsen the PMR but after so long without them, it doesn't do my digestion a lot of good! I'm experiencing that at present, staying with my daughter who is vegan and their diet seems to be carbs with a side of carbs!

In the early days of undiagnosed PMR I did try all sorts of dietary approaches, I was gluten-free anyway back then as I had a wheat allergy and g/f was the only solution when out and about. I left out nightshades, reduced dairy - all that happened was my diet was restricted even further and really rather boring. And it made next to no difference. Only pred did that when I finally was offered it.

What we usually say is that it is worth keeping a diary and noting any links between symptoms and diet or activities. But it tends to be very individual - some find a glass of alcohol causes problems, others say they feel better, carbs often cause people flares, others they make no difference.

And yes - know what you mean about salmon and salad being the only option when out!!! I will give Italy a bit of praise here - I can eat far better there than in the UK even being picky about dietary restrictions!

[SnazzyD]

I think all this stuff is too simplistic and our bodies vary so much to be able to have any guarantee. I think one has to approach it methodically to see what feels ok. I was gluten free and nearly dairy free and still got GCA.

[HeronNS]

Although diet does affect some health things with me (weight, blood sugar and digestive discomfort for example) I've never found any changes had any impact on PMR symptoms. I do think ginger tea was helpful at one stage, made with grated ginger not a commercial tisane. But it's also possible it was just having that extra fluid late in the day, or the relaxation provided by a warm evening drink. 🤷‍♀️

[agingfeminist]

I have eaten a diet rich in the anti-inflammatories, no sugar, for years prior to the PMR. Only home-cooked food. I think a healthy diet is really important but I don't think it has much input in controlling our rather complicated autoimmune disease. But it will help stave off all sorts of other unwanted illnesses (I hope).

[Louisa1840]

I know someone posted last year about how having given up all sorts of things changed her life and gave her back her mobility. It didn't make any difference to me plus I was left feeling deprived! I just eat healthily as I always have. We are all so different and what works for one won't for another. But anything is worth a try and the spin off may be losing some weight. One can dream....!

[Potemkin]

For me it's about achieving some sort of balance and I think if you can avoid ultra processed foods that is the main thing.

I eat dairy but it's mainly yoghurt, milk and hard cheeses. They are very good for your gut. Why don't you try introducing some and see how you go? There's a lot of evidence that our gut health affects our whole body including our brain. These foods do provide a lot of helpful bacteria.

I also eat carbs but in moderation and include all the pulses and legumes.

Agree it's harder when eating out but occasional foods should be ok as long as you don't go mad. I don't tolerate alcohol very well any more but do enjoy the occasional glass.

This isn't a short term fix so we do need to find balance if we can. Good luck.

[Viv54]

I don't think it's the diet for you, sounds miserable🌹

[Miserere]

I reduced carbs drastically and do feel better for it; also I became pre-diabetic on steroids so used Michael Mosley's Fast recipes to reduce blood sugar out of diabetic range. There is far more interesting food than salad and grilled salmon - maybe worth trying? It probably won't cure PMR but it does cut the sugars and that's never a bad thing.

[PMRpro Ambassador in reply to Miserere]

I think the salad and salmon problem is the choice - or lack of it - when eating out!!!

[Miserere in reply to PMRpro]

Yes, realised that afterwards. Restaurant/pub menus can be very disappointing - I usually end up with gluten free fish with no chips and a few salad leaves - or, indeed, salmon. That's why we usually eat at home - the food's better 😂.

[PMRpro Ambassador in reply to Miserere]

Quite! I'm suffering a bit at present - staying with my daughter who is vegan! That seems to be carbs with a side of carbs! Whereas at home it IS a piece of meat or fish and salad. But in Italy that is a whole different ball game and even eating out isn't difficult - albeit usually far too salty!

[Bcol]

A slightly different perspective and I know I'm a male and this ailment does seem to affect the different genders in a different way. The only thing that has ever had any impact on my PMR is Pred. My diet would appear to have been/is totally irrelevant to it. I guess it was a relatively balanced diet in the old fashioned sense, meat, red and white, (wine similarly), lots of veg and fruit, no problem with carbs of all varieties, never been a great fan of pasta but happy to eat it. I've never really changed it, my weight has stayed constant and my HbA1c has gone down. It really is a disease that hits/affects people in completely different ways.

[Charlotteab]

My experience is that an anti-inflammatory diet can help, but it's not going to cure the PMR. Having said that, my diet is not totally anti-inflammatory as I still eat carbs and dairy. (I love mac and cheese way too much to give it up, although I do use gluten-free pasta.) As you say, a totally anti-inflammatory diet can be limiting and boring. What I found did help a bit was cutting red meat and sugar -- not that difficult for me, as I don't have that much of a sweet tooth, and I prefer chicken and fish to beef and pork anyhow. I have especially noticed a fairly clear connection between eating something sweet, and then feeling sore and stiff the next few days. (I am currently on 10 mg of pred, down from 15 mg). Stress is also a huge trigger for me, so if I'm stressed about something, my diet doesn't really make much difference.