Gluten, dairy and probiotics

[yakamalayo]

Hi. I wondered if anyone else had had positive (or negative) results with changes of diet and with probiotics. Having done loads of research when my daughter was first diagnosed last year, there seems to be growing evidence (although not yet the 'proof' needed for medical acceptance) of a connection between gut health and auto-immune diseases. One of the most common things that impacts gut health (e.g. leaky gut syndrome) seems to be gluten, with dairy being the next biggest impact, along with other things that are very specific to different people. So my daughter immediately went on a gluten and dairy free diet and also cut out refined sugar (so if things need sweetening, which she keeps to a minimum, she uses unrefined sugar, maple syrup, agave nectar, coconut palm sugar, etc. - plenty of alternatives), and also beef, which seemed to trigger a flare-up for her. Six months on and with the definite help of Hydroxychloroquine plus one steroid injection, her symptoms are now well under control (fingers firmly crossed) and she is doing well. We have no way of knowing to what extent the diet may be helping or even directly causing her positive health, but she's committed to sticking with it in the hope of supporting her body to completely heal one day. Incidentally, she had no symptoms of intolerances, e.g. digestive issues etc., before she was diagnosed with Lupus.

She has also started taking pro-biotics, which again there is some evidence from recently conducted medical tests may support gut recovery and help to address auto-immune disease.

Has anyone else had good or bad experiences with diet/probiotics? If the disease is winning and you have not cut out gluten, would it not be worth trying if there's any chance it could make you better? I wouldn't wait for the scientific and medical industry to catch up as it may take 20 years (after all, there's no profit in it for them) - it certainly won't do any harm except for some extra hassle, which I totally recognise, but it's worth it. If you mainly cook from scratch then it's not too difficult - fresh veg, fruit, meat, fish, potatoes, rice, etc. Cutting out gluten on its own wouldn't be very hard, but with dairy as well it's a bit more hassle. And it is a pain if you're eating out (but restaurants are getting much better at dealing with intolerances etc.). Anyway, I'd love to hear... Thanks.

[Silvergilt]

Gluten-free diets aren't as easy as they used to be; you used to be able to get a prescription, but nowadays you can't, and they're not exactly cheap. On a fixed budget, it would be pretty difficult. Couple that with diminshed energy levels and trying to organise your diet around all this sort of thing...yikes, I can't even begin, it would double my grocery bills and my time in the kitchen. I was actually warned off this via my rheumy as he felt that, eventually, you'd end up cutting more and more things out of your diet 'and then you're only eating kale'.

My feeling is if you're in a place where you can afford to try the changes, may as well, however I'd like to see a bit more empirical evidence on it. However, not everyone on a fixed income can run out and buy all the 'free from' ranges, imported-from-halfway-round-the-world coconut, and agave syrup is anything BUT natural! I'm no longer able to cook from scratch (I forget I'm cooking and burn food too often), so I use a slow cooker or posh, Waitrose-style ready meal things when I literally find chewing too difficult, let alone cooking - oven timed to shut off so I don't forget it and burn it! For my part, I found eating whole-fat foods and increasing my red meat intake (bison, not beef) has worked pretty well on controlling pain and swelling, and that's the exact opposite of most of the stuff we're told - and as a fat woman, I take a lot of stick for it too, but when I asked my GP how my bloods were lately, he had to admit the inflammation levels and my chronic anaemia were both under control, where before I was constantly taking tablets of one kind or another.

My view is give things a try, unless they become a struggle - at which point, stop. There's no point in trying to force one's body to do something purely because one read somewhere it's 'healthy'. I made myself so sick when I tried to be vegetarian, I nearly hospitalised myself - turns out I cannot digest plant proteins, and I was malnourished and dangerously anaemic. So while my current diet looks really weird to many professionals, and it may not be perfect, they have to admit there are benefits.

[yakamalayo in reply to Silvergilt]

Thanks for your reply - your diet sounds even more challenging than GF/dairy free! Don't think my local butcher does bison, let alone the supermarkets. Anyway, it's all so personal isn't it. But it does go to show that diet has an impact on our health and symptoms (pretty obvious really, but why is it always played down?). I haven't actually found GF too expensive, although I agree, it is a bit more. Luckily we can stretch to that - most money going on good quality food at the moment, but saving lots on no holidays in the mediterranean any more! Lots of fresh veg etc., isn't expensive and we avoid processed food so don't get much from the Free From aisles. And my son is vegetarian, so cooking has been a challenge for ages anyway! Anyway, good luck with everything.

[Asarahjohnson]

I was diagnosed 2 years ago. Started on hydroxyychloroquine 400 then reduced to 200 . Deteriorated. Up to 400 then had depomedrone. Joint pain went but felt worse. Gave up gluten, fatigue reduced markedly then gave up dairy and joint pain went. Headaches improved. Had to restart gluten for coeliac tests- horrific return of symptoms. Now dissipating since not coeliac and back on GF diet. Hair even stopped falling out. Also on probiotics as is my brother who is coeliac. And am on other supplements that help. I agree Defo worth a go.

Hope your daughter continues to recover.

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[yakamalayo in reply to Asarahjohnson]

Fantastic - that sounds like it definitely makes a big difference. Great to hear. I would love it if some proper scientific tests were run on this. Perhaps several auto-immune charities could get together to fund some widespread research. Ever hopeful!

[Asarahjohnson]

Also have been able to reduce hydroxyychloroquine back to 200.

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[Hidden]

The best form of lookig after the bacterial flora and fauna of your gut is fermented foods - kefir, sauerkraut etc probiotic drinks aren't as effective, as broad spectrum and can be delivered in high-sugar content/dairy drinks