Behcet's Syndrome Society

Diet support?

Hi everyone. So as I mentioned in my most recent and last post they thought I had lupus so I started the autoimmune paleo diet. Apparently this is supposed to help a lot with autoimmune disorders. Now the new specialist I am seeing says I have Bechets. I am wondering since I am so new to this if autoimmune and autoinflammtory diets are the same? Does anyone have recommendations on what has helped? I have severe joint pain, fatigue, ulcers, significant weight loss, dry eyes, hair loss, rahses, chills, headaches...all of it. I have been doing this "diet" for about 2 months now.

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There are a lot of different dietary measures that work with people with Behcets. Some of us improve on a plant-based diet, while others find they are better if they eat a lot of meat and fats. A lot of people respond well to eliminating common food allergens like wheat and milk. Some find more obscure foods trigger flares - in my case foods from the nightshade family. There is no 'one diet fits all' with Behcets, it is a case of finding out what works for you. This can take years, and the support of a dietician might help speed the process, as long as they know what they are dealing with.

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Thanks Jaxxi. So far I have been working with this AIP diet but it's so restrictive. That being said, any time I have tried to reintroduce a food I end up having severe fatigue and joint pain. So I am assuming it's working? Hard to tell. Food was and is a big part of my family cultural life so this is a big change

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Yes, I know where you are coming from. It's very hard when family food traditions are a big part of your life. My husband's family have very strong cultural traditions around food, but bless them, they go all out to be flexible as far as the gluten-free eating and vegetarianism are concerned. I tend to stay quiet about the nightshades as it really is too much to expect someone to cater for all that. I also find that if I stay away from gluten and nightshades on a daily basis, I can tolerate small amounts when I'm out. I just leave things on the side if I think they might set me off.

My husband and I eat very well indeed at home - probably way better than most. And our grown up kids wolf down our dinners with no complaints when they visit.

At larger family meals we intersperse dishes of things I can eat into the groaning table full of food. I'm not the only 'fusspot' - we have vegans in the family too - so the meat eaters bring a roast joint, and we all pitch in to really nicely cooked veg dishes. The main problem is making sure my dishes don't get polished off before I get to them! It does mean that the traditional feast table looks a little different, but as long as we're all happy, nobody seems to mind. It would be harder if there were fixed religious credos to adhere to - that's not the case with us.

The early days were definitely the hardest, but as time went on we found delicious new recipes and ways of cooking old favourites. It's actually quite creative, and we try all sorts of nice things we probably wouldn't have bothered with if we didn't have constraints. I cook with a lot of unusual flours like teff, chickpea, buckwheat, amaranth and sorghum, and substitute courgettes, cauliflower, quinoa, sweet potato and celeriac for white potato. Pomegranate seeds, strawberries, kiwis, citrus, tamarind, mango powder, chutneys and vinegars substitute for the sweet/tart flavour of tomatoes. You see already how exotic it's starting to look?

I hope you are able to pin down the foods you need to steer clear of soon - yes, in a way it's good that you are definitely reacting - that makes it easier. It all sounds a faff, but once I found which foods made me feel bad, it was no problem at all cutting them out. Who wants to eat stuff that makes you feel gross?

Good luck!

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Jaxxi. I agree completely in terms of not feeling crappy over porking out on foods that put me in a tailspin. Your ideas for tartness are amazing! I am going to look into them. Awesome! I am.on fully gluten and green free right now so I have been using some interesting flours like arrowroot, cassava and tigernut. I am using a lot of coconut oil and products as a base. It's a huge change from feta cheese and tomato bases that I am akin to (cut out dairy and nightshades as well)...but I am trying to manage. I bought a few cookbooks and on the weekends I try a whole slew of new recipes. I appreciate the pep talk.

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Green free? Like you can't eat leafy greens? I would totally shrivel into a little ball and whimper if I had to that! Tigernut flour sounds like it could be good.

So, what CAN you eat currently? I've never heard of the diet you're on, though I know a bit about paleo.

Jx

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Haha! That was a typo! Grain free. Goodness no greens would be horrible. So basically autoimmune paleo is Paleo and then more complicated. It takes out a lot of spices, nightshades etc that apparently cause inflammation. So my diet kind of looks like juicing and a protein in the morning, lunch is a protein and veggies for lunch and same for dinner. I mix it up like I mentioned with new recipes and flavors but the basis of most of AIP diet is coconut, vinegars, and more blandish kinds of things.

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Don't be so quick to not suspect the greens. I can't tolerate vegetables at all and they definitely exasperate my symptoms. I know cause I keep a food journal. You don't really need vegetables to be healthy anyway. Search up the zerocarb diet. Beef liver has literally every nutrient that a human needs.

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Switching over to an all animal based zero carb diet basically cured me of all symptoms. Check it out: healthunlocked.com/behcetsu...

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How has your stomach been since the diet change?

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My stomach has never been "too bad" so I don't notice a difference. I am getting used to the new meds so those side effects are starting to stabilize. I mainly am doing the diet for my joint pain. That's the name of my existence.

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