Hi,
I am newly diagnosed with BD and am looking for ways to help my symptoms at home as best I can. I have found that an anti-inflammatory diet may help so wondered if any one else has tried this and if so, was it successful?
Exercising is proving to be more and more difficult for me now. If anyone has tried other forms of exercise that has not taken its toll on the body, I would love for you to share your experiences.
Any other tips or advice would be much appreciated.
Thank you
Lucy
Hi fellow BD warrior!
I’m really interested to see what others comment to your questions as well, here are a couple of thoughts from me;
Anti-inflammatory diet: I recently had to switch to a very soft, plain diet avoiding things that can cause inflammation because I had new severe sudden onset bowel inflammation. It’s been fascinating to see how quickly the inflammation has gone down, and some of my other symptoms have settled, including mouth ulcers. I personally think there’s definitely something in it and I’ve just bought a book called “The Doctor’s Kitchen - Eat to Beat Illness ” by Dr Rupy Aujla. The info is so fascinating. Also, a tip my dentist gave me (which seems obvious now!) is that hard scratchy foods like crusty bread, pizza crusts etc can irritate the gums and soft tissue of the mouth and trigger ulcers.
Exercise: walking, walking, walking! It’s the most underrated form of exercise, and even better if you can do it somewhere with a bit of nature. I’m like you and can’t do any exercise as such and I’ve seen some articles about this and the power of being in nature for physical and mental well-being. Also simple stretches can do wonders. I’m currently having a lot of physio and when I do my stretches at home I can really feel the body awaken and benefit from them. I’ve made myself a mini “PT” (physical therapy) zone in a corner of one of our rooms - have a chair and a mat, stretching band etc. and put some music on, spritz some aromatherapy and try to do what I can. Prior to some recent operations I also saw a Pilates teacher 1-2-1 which was lovely because she could tailor every session depending on how I was, expensive but really worth it and I will do that again if I can.
I would also like to mention about pacing yourself and mindfulness: there was a really helpful post recently on this forum about fatigue and pacing yourself - really worth a read through. Also I find mindfulness really helpful for general well-being - anything from aromatherapy scents to boost energy or calm, to yoga music, to little or longer meditations, lovely little bits of ‘me’ time, especially when I’m struggling physically.
Hope this is helpful ☺️
Hi Mrs-Champers,
Thanks so much for your response.
I am really pleased to hear that an anti-inflammatory diet can have some positive outcomes for BD. I actually only downloaded The Doctors Kitchen book yesterday, so will definitely have a read of that, thank you. As for the dentist tip, I definitely have side effects to the hard crusty foods I eat, so will be avoiding those from now on. I don’t just get the mouth ulcers though, my gums and mouth tends to be inflamed a lot!! Sometimes it’s hard to brush my teeth due to my gums being so swollen. Not sure if anyone else experiences this?
Walking is definitely something I need to do more of when I start to feel better again. We luckily live in a beautiful area with lots of lovely nature so that won’t be a problem. I will try the stretching too. Your PT zone sounds great, almost like your own ‘me’ space.
I will try and look for the pacing post. On my research of BD in the last week, this is something I come across often and something I will struggle to get used to. I have a very fast paced job and have already had to request a work meeting to look at this. Unfortunately, the go go go, is part of the job I actually enjoy! I have recently started colouring which has helped me but have never tried the aromatherapy spritz, I will give them a try.
Thanks so much for taking the time to provide some great advice. It’s so nice to connect to others who can suggest things that they have already tried.
Lucy
my son who was diagnosed at 12 and is 29 now says regarding exercising that it seems weird but that walking and stretching kills him but more strenuous like weight lifting does not. also he went to an all meat diet (hard as hell to stay on) and it has done wonders. if he strays from it he is really bad off. my other son that is 32 is on the all meat diet and when he strays from it he is down like crashing and HAS to go to sleep. i dont have the will power to be on it at all lol
Hi Duke,
I haven’t come across an all meat diet for BD yet so this is interesting to get another perspective. Red meats are to be avoided for the anti-inflammatory diet so it can all be so confusing. I am with you though, it is not something I would be able to do as I don’t particularly like meat at the best of times. I am pleased though that this diet seems to be working for your sons and reducing their symptoms.
As for the exercising, I much prefer the harder core HIIT workouts too but my body won’t allow me to do them any more, despite my mind still feeling that I can.
Thanks for sharing your experiences through your sons, I really appreciate it.
Lucy
I have mild BD and I am able to manage my symptoms through eating an anti inflammatory diet. I very specifically do not any gluten, red meat or dairy and primarily eat only whole, natural foods. It’s a lot of work but I find it helpful to meal prep every Sunday to pre prep or cook a lot of my meals for the week. I also take tumeric supplements (I prefer the liquid) and I can honestly feel a difference when I miss a day or two. I like to do weight lifting exercises - nothing crazy, mostly just body weight or very light weights (3-8 lbs). I also try to walk a few times a week. My severest BD symptom is uveitis but I have not had any flair ups in 3 years following a strict diet. Hope this is helpful 
This was definitely helpful KimT, thank you.
You are basically on the diet that I have started with eliminating the gluten, dairy and red meats. I have also cut out the sugar (which is the hardest part for me).
The turmeric seems to be another theme that I have come across a lot in my research so will look in to taking this as a supplement I think. Any advice on where to purchase, and the right brand to use etc?
So amazing to hear that you have been flare free for 3 years. It reassures me that I can maybe get to that point with a little hard work and patience.
Thanks again
Lucy
Hi There, I am not actually diagnosed yet but suspect I have had Behcets for 25 years and am awaiting Rhuematology appointment for confirmation. It was first picked up as a maybe 3 years ago during pregnancy. Till then I 'only' had mouth ulcers, 'lady ulcers' and fatigue and refused the invitation to start on Prednisalone!
It was severe when I was 14 and I spent two weeks in hospital with massive vulval ulcers. No one had a clue what was wrong with me and I had to show my bum to loads of Drs!! I got those under control in the end with topical steroid cream. Mouth ulcers were awful and recurrent. I missed loads of school due to fatigue and pain. I was eating a lot of sugar and hardly any veg! Things gradually improved as I changed my diet and cottoned onto sugar (inflammatory!!) being a problem. This was all pre internet!!
With out knowing I had Behcets I actually studied and MSc in Nutritional therapy to try to get to the bottom of my symptoms. I have discovered that supplementing with Methyfolate reduces my mouth ulcers and fatigue. Folic acid is the synthetic version and not every one can recognise and use it so if you try it make sure it is Methylfolate (natural form) not folic acid. I ran out recently and over night a mouth ulcer popped up. My digestion has always been a little 'loose' and therefore I suspect inflamed, but with the elimination of gluten and dairy (except butter and hard cheese which I can't resist) it is almost textbook! Also the more veg especially dark green I eat the better I feel.
I have just recently had a major flare up. I think either Tonsilitis or Stress or both have been the trigger as I had it all in remission for the last 3 years. I now have Uveitis, Erythema Nodulosum and Random joint swelling to deal with.
I am interested in other peoples responses to the post as I would prefer to manage with diet and lifestyle as much as possible. I am currently experimenting with Reishi mushroom complex as they are supposed to be immune modulators and anti inflammatory. I also supplement omega 3,6 and 9. I'm also thinking about Magnesium for energy and turmeric.
Re exercise I hope to get running again eventually. I think the couch to 5k is probably too much to start and will start with 1 min running 3 mins walking repeated 4 times, 3 x per week and work up gradually from there. That is the running plan I used in my 20s and by the end I was running marathons and triathalons ,so I remain positive that it can be done if we pace ourselves.
This is my first post. Its nice to know I'm not the only Behcet warrier out there. I hope there re not too many typos. I have one blurry eye from Uveitis but it feels like two.
Good luck all.
Wow Icefire, sounds like you have done so well considering you have not had a diagnosis yet. The diagnosis is the most frustrating thing! I have had symptoms since the age of 18/19 but never even heard of Behcet’s until my diagnosis earlier this month! I was convinced though that I had some form of autoimmune disease due to my health flare ups.
Sugar is a big problem for me as I love it so much. I actually eat really healthily other than the sugar and am lucky to not be overweight but I know how bad it can be for the body so have decided to eliminate it from my diet as of this week - I’m already struggling with cravings!
So weird that you mentioned folic acid as during a bad flare up last November my blood test came back with low folic acid and I was out on tablets for 2 months. I didn’t really see much of a change in my symptoms though. I am currently on Colchicine for the ulcers and after 10 days I am already ulcer free.
I completely agree with trying to improve my health with more lifestyle changes as much as possible and I am lucky to have such a supportive Wife to help me with this. I actually tried couch to 5K last month. I loved the first 2 weeks and was feeling great before my first run of week 3 left me feeling really unwell again - it’s so frustrating!
Your symptoms certainly sound like BD and I hope you manage to get further support once your rheumatology appointment comes through.
Keep us updated.
Take care
Lucy
Hello,
I suffer from several autoimmune conditions one of which is BD. I have been trying the Autoimmune Protocol (AIP) diet to identify my food sensitivities. It basically involves avoiding the usual culprits - gluten, sugar, dairy, nightshades and anything else you may discover you are sensitive to and eating highly nutritious foods like meat from pastured animals, organ meats and vegetables preferably bio. Out of all the diets I’ve tried over the past 8 years AIP is the one that I do best on. My gut especially but also my generalized body inflammation have being going down slowly since I started 5 months ago. Regarding exercise, mindfulness and anything that may help getting a handle on your autoimmune issues check out the Phoenix Helix website and podcast. It has helped me understand my body and find solutions that work for me. I can’t recommend it enough. It has interviews with the best functional medicine doctors, nutritionists and psychologists etc. and it’ll point you towards other resources like books, websites, clinics etc. It’s one of the best resources I’ve found over many years of searches and struggles with autoimmunity. Good luck!
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