Diet

[Sasha-pi]

Hi All,

Have any of you managed the pain or flare ups with a spesific diet? I know milk is a big no, but any other thoughts?

X

[Legomum]

Prof fortune from the London Behçet’s clinic urges caution when people start eliminating things from their diet. Unless you have a proven allergy or coeliac disease (unable to eat gluten) she advised eating fresh food and homecooked where possible with a balance of proteins from meat and fish, loads of veg, healthy fats and carbs. I don’t know why milk would be avoided and not heard that advice.

I am always keen to see any evidence of diet things that have helped in Behçet’s. When unwell with a flare I would try anything and recognise that patients can be really vulnerable then (but probably have their least resources then to shop, buy, prep and cook in terms of energy, time and money!) I spent about 8 months avoiding gluten but with no difference observed. When I was younger I eliminated orange juice, chocolate, alcohol and tried salicylate-free diet but again without clear evidence of improvement. So good to have an open mind and hear what helped others, but just be careful not to slip into vitamin deficiencies or other problems by eliminating essentials.

[Sasha-pi in reply to Legomum]

That is very true, you can elimanate many items with no proven results.

I had ice cream one evening and not long after really bad pains in my legs and hips. They were very inflamed inside and extremely restless. I found an article saying that ice cream is a key driver for inflamation with immediate effect. That is why I stopped eating ice cream and limit milk intake.

I started looking into which foods prevents/limits or cause inflamation and try to work my diet accordingly.

[Pixie013 in reply to Legomum]

Well said, Legomom. I have severe intestinal Behcet's while in i tensive care with a flare an internationally-renowned gastronenterologist strongly advised me to sbstitute nut milk for cow milk--but that advice is specific to GI issues only.

My vasculitis specialist is strictly evidence-based in her approach--she had recently told me she knows of no evidence-based, generalizable dietary approaches to the management of Behcet's. (That's not to say that individuals do not experience personal sensitivities that eouldn't apply to the Behcet's population as a whole).

Has anyone worked with a dietician to identify food sensitivites?

Great discussion. Have a great day everyone!

[gillianTS]

Articles written in the Science Magazine February 2015 and BMJ 2017 say:

Common ingredient in packaged food may trigger inflammatory disease.

The ingredients that lend a smooth, stable consistency to ice cream, chocolate bars, and other packaged snacks may promote certain chronic inflammatory diseases. That’s the claim of a new study, which finds increases in metabolic disease and intestinal inflammation in mice fed two common emulsifiers used in processed food. The authors are a long way from confirming similar effects in humans, but they suggest that these ingredients cause damage by disrupting the barrier between the immune system and the microbiome—the collection of microbes that inhabit our bodies.

The full article can be read:

sciencemag.org/news/2015/02...

And later (2017) a very extensive article, keep scrolling on and on down the article in the BMJ on Gut microbiota re Dietary emulsifiers directly alter human microbiota composition and gene expression ex vivo potentiating intestinal inflammation:

gut.bmj.com/content/66/8/1414#

So maybe the emulsifiers and not the milk is to blame for your reaction to ice cream 😏

[Jaxxi]

As legomum says, the very top priority is a nutritionally fabulous diet. Our illness and our meds can use up nutrients much faster than normal. A vitamin D supplement is a good idea especially in the winter or if your illness stops you going out.

There do seem to be quite a few of us with food intolerances. It makes sense to me: Behçet's is an inflammatory disorder, so perhaps we react more severely to a food that triggers low level inflammation than we would if Behçet's were not in the picture.

There are probably as many different food-sensitivity patterns as there are people with Behçet's, so it is a very hard area to share advice on. Certainly there is no 'one size fits all' diet. Some have had success with FODMAP, others with paleo, some with plant-based, some with meat-heavy, while others have more energy if they follow a ketogenic diet.

My own pattern is that I get severe diarrhoea and stomach cramps if I eat gluten, though I have always tested negative for coeliac. And I get immediate gum ulcers and burning sensations through the whole digestive and urinary tract if I eat nightshade family foods (potato, tomato, chilli, aubergine etc). If I steer clear of gluten and nightshades I get fewer, milder flares. However, most processed gluten free foods contain large amounts of potato starch and are not very nourishing, so I now make my own mega-breads using sorghum, buckwheat, teff, brown rice flour, chia, flax and pumpkin seeds.

There is a large range of foods that I tolerate OK generally, but react to if I eat too much of them. In the past intolerances to eggs, nuts, soya, maize, dairy and fish have surfaced. The reaction is always the same: stomach cramps and diarrhoea, and a tendency to have more BD ulcers and flares if I ignore the stomach signals. If I avoid these 'temporary trigger' foods for a few weeks I can eat small amounts again, but my body lets me know if I overindulge.

So that's me - my own eating pattern worked out over several decades of being watchful and curious about what I eat and how it affects me and my BD. If you are sure the foods you eat affect your BD, your job is to suss out your own personal pattern.

If you do decide to test foods by eliminating them, make sure you only do one type of food at a time (ie just dairy or just gluten, not both), and test for a few weeks rather than a few days. And be patient. It can sometimes take a very long time to accurately tease out food sensitivities. For instance, if you are testing a food and then get a virus, that could mask your test results. Do be watchful for false positives.

There are large gene pools of non-European people who lose the ability to digest lactose after weaning, so if you think milk is a problem it makes sense to try eliminating dairy in case the 'Silk Road' has passed this tendency along as a free gift with your Behçet's. There are gazillions of non-dairy eaters living to a ripe old age without their bones crumbling into dust, but do look into the nutritional aspects so you can reassure all those anxious people who will suddenly be massively concerned about where you will get your calcium if you are not getting your daily udder-juice.

Socially, my advice would be to keep your food sensitivities under your hat. My husband used to list all my intolerances if we were invited out to dinner, and people simply stopped inviting us! Nowadays I just don't tell people. There is usually something on offer I can dig into, and if not I just say its delicious but I'm not very hungry - people don't seem to mind as long as you are happy and sociable!

[Lovingdragonflies]

I think each individual is different. And different periods. For a time I was unable to do milk. Oddly now, it helps me deal with the azathioprine the best. I was gluten free for four years, but found it didn’t really help me. Lower carb, lower sugar helps me. Balance diet with as few process foods as possible. Lots of water, is key. I struggle with dehydration. So I don’t believe in rules. Experiment for your body and then cut it out. But be prepared to shift and adjust. If there’s anything that being unwell has taught me is how to adapt.

[FrancisB]

Great thread, I too have experimented with various food restrictions and agree it is a slippery slope. It's seem the alternative health world strongly believes gluten and dairy are not good in general for people with autoimmune conditions. I have removed both from my diet for nearly 12 months and did see some improvement, however I have reintroduce both in moderation. Personally I don't think all gluten and dairy is equal, unpasteurized milk from a local dairy and non processed wheat products I tolerate fine in moderation. I did try the low salicylate diet but found it too restrictive. I just try and eat as much fresh produce as possible, vegies and meat. It's really just trial and error as everyone is different and may have unique triggers. Refined sugar and alcohol is guaranteed ulcers for me.. good luck with fine tuning your diet!

[Sasha-pi]

Wow each of your experiences are completely different. Very true, it does depends on your own body!

I can’t eat ice cream at all. Within minutes I have restless legs, feels like my veins are on fire. Extremely uncomfortable and irritable.

Red meat (eat mine rare) and a glass of red wine causes me lots of pain the next 3 days. So I try and keep with fish and chicken and limit red meat to once a week.

Thanks for all the details.

[ch1982]

I do find certain foods calm down a flare, such as green vegetables and fish and avoiding alcohol when stressed. I think it's different for everyone but for me white wine/bubbly bring on ulcers overnight (every single time -red is fine if I'm not stressed) and too much sugar as well. I avoid processed food because there is little nutritional value and usually far too much sugar. A varied whole food based diet is probably best with very little if any refined sugar. If you have stomach problems, I'd also go easy on the red meat - pork and beef are very acidic and take a long time to digest. Fine once a week but maybe not every day. Loads of quality veg, fruit, fish and lean meat and good grains/seeds like brown rice, quinoa etc. Just what works for me.

[ch1982]

Forgot to say - Dairy - it's okay, but again, go easy on it as it can be inflammatory. Goat/sheep cheeses/yoghurts are better and maybe oat milk instead of whole milk?

[rooser1]

ive managed my diet really well going sugar free. Turns out I am sucrose intolerant and have been becoming more and more sensitive since my first flare at 17. Im 30 now.

I had chronic thrush in my early 20's and went on the candida diet for 9 months and that was the turn around point for me and BD.

So I eat meat/fish, fats, veggies. Low sugar fruits like berries on occasion. I limit process foods. I do not eat desserts. If sugar is accidentally in something, I feel it within 20 mins.

I was able to stop my medications and manage my flares really well using this diet.

I still drink milk and eat dairy products. I personally never had an issue.

[Scandal]

I am sure cheese makes my pain's worse,