I just thought I would post this if anyone is interested.
I notice that a lot of BD sufferers on here use things like ice cream and soda to 'feel better' when they have a flare. While those things might be comforting and provide temporary relief, ultimately they only feed the inflammation and the disease itself.
I have found many useful websites and resources online (Pinterest is great!) about controlling disease through diet and have made great strides in my own life by eating the right foods and avoiding the wrong ones. When I decide to 'treat' myself I can sure feel the difference in my symptoms and my overall health and energy.
This website is particularly helpful. This woman was diagnosed with MS at age 22 and is now 38 and living a perfectly healthy life, controlling her symptoms (inflammation) through diet. Thought I would share for anyone who wants to give it a shot. The changes are hard to make at first...but totally worth it! (Fringe benefit ~ you lose weight )
I love yoghurt icecream and there are a couple of places near me that make it themselves, What a treat and much better for you than icecream itself, which half the time hasn't every seen any cream anyway.
if you get chance...give it a try. The only problem is that it doesn't last long in our house
I absolutely love frozen yogurt! Especially Greek frozen yogurt,,, so good! I love just normal strawberry yogurt also, which is probably much better for you than frozen, but it's still ok to have a treat once and a while
I don't believe that diet alone is enough to change the course of a powerfully, aggressive disease. Before I became really sick, I ate an extremely good diet with tons of veggies, fruits, and only ate small amounts of chicken, turkey, and fish for animal protein-- I hardly ever endulged in anything that was bad for the body and never drank soda; only coffee once and a while, but mainly drank a lot of herbal teas. I was also very adamant about getting into my body all the various natural antioxidants and flavonoids by eating various kinds of fruit and veggies, including more exotic varieties. I was also very active, I walked to and from school (which is about 7-8 blocks away or about a twenty minute walk) up to four times a day, then would walk my big dogs usually two walks a day, and enjoyed running nearly everyday as well-- this was just the way that I lived my life, I wasn't necessarily trying to "make a point" with any of it, I just loved to eat fresh fruits and veggies and didn't enjoy things like cookies and cake, etc. And because it made me feel good everyday and gave me more energy, I just continued on with it because I love life and wanted to live a long and healthy life--
--but then BANG!--none of that mattered because I still had my body turn on itself, and not just with one disease, but multiple autoimmune conditions, some of which have caused permanent organ damage. Not only did I still end up getting sick with autoimmunity, but I got sick in a more complex way in which no doctor can understand, and in a way that means that no treatment as of yet can help to settle anything down. I'm not convinced at all that diet necessarily can cure disease-- if this were true, then why is it that people like me still get sick and also develop very aggressive, untreatable, "refractory" forms of autoimmune disease? There are many other people out there like me who also unfortunately have become ill, despite living a healthy lifestyle-- then there is also so many people out there who are overweight/obese who are extremely inactive and always have been since childhood, and yet they never develop a devastating disease like Behcet's or some type of cancer in their entire lifetime.
If it were possible, then I am sure that so many sick people would get better quickly if all they had to do is change their diet. I think this is where genetics come into play because we know that autoimmunity tends to run in families (like for example- all on my mom's side-- my grandma has Sjogren's and RA (both are highly aggressive forms that cannot be treated effectively; my aunt has type 1 (autoimmune) diabetes; another aunt has a very serious form of SLE Lupus and Mixed Connective Tissue Disease; and my mom suffered acute autoimmunity as a teen with Rheumatic fever, Lupus Nephritis, and severe eczema)-- so it's not surprising that my sister or I were doomed from the beginning (but thanks God my sister is healthy).
I think that genetics can be much more powerful than environment and lifestyle ("nature vs. nurture")-- Nurture will always win with things that can be controlled by external factors, such as our ability to do what we can externally to prevent disease (by trying to manipulate the environment we live in) and this may help some-- but when it comes to things internally that we have no control over, our genetics will always be much more powerful. I guess what I'm trying to say is that for many people, their Behcet's came about because of genetics, and therefore, no matter what they do to try to prevent it in the first place, it won't matter.
Maybe some people may find that by changing their diet, they feel better (perhaps genetics doesn't play a key role in the development of their disease or maybe they weren't eating very good to begin with and by eating more healthy, they feel more energy and more alive).. who knows I guess. But I would not say that someone with Behcet's, especially an aggressive case of it, should just change their diet and lifestyle and they will feel and be better... you may have more energy, but the disease is still sitting there hiding out in your DNA, ready to make it's next attack, and unless the foods you eat have the power to manipulate your genes/DNA (like some biologic drugs can), then you aren't actually any "better" and are still at high risk of having any organ attacked and damaged at any time.
Anyways, all the more power to whoever wants to try it. I still believe in living a healthy lifestyle vs. the alternative, but in terms of it actually curing disease, I don't think so-- if it could cure disease, then why couldn't it prevent it in the first place? Just my own thoughts on this subject. Please don't take any offense to what I have said.
I am sorry is this sounded a bit offensive or mean-- I think I feel a lot of anger around the fact that I'm so sick-- but I know I'm not the only one. I just get angry and upset when people try telling me that if I change my diet or lifestyle, then maybe I won't be sick anymore... but I do realize your point. Of course eating healthier will help you feel somewhat better and may help to stabilize your mood, etc. I think I often just feel like what was the point in trying to be healthy when it didn't seem to matter with me, and also others in my family as well.
I'm very sorry that this has been your experience.
I was able to improve my health greatly through diet change. Everyone has a different experience and a different point of view. I just wanted to share this b/c it has helped me so much and even if only one other person can benefit from it, then I will be glad I posted it.
One is we get this disease for whatever reason (no matter how fit we are or how healthy we are eating). Probably as Jenna suggests bad genes waiting for a trigger.
Secondly as you suggest - once we have it we need to do everything we can to keep the symptoms under control. There is I doubt in my mind that certain foods are inflammatory and are ingested into an already inflamed system ....
I definitely can't touch capsicum even the sweet one, and feel better for cutting out bread with yeast.
hi kat I get where your coming from I found when I changed my diet and exercised 4 times a wk I felt more positive which I think in turn helped with inflammation, though I still get mouth ulcers my headaches decreased and stress levels dropped.
im a strong beliver in good diet and exercise not as a cure but as a psychological pick up after.
diet plays a massive part in our health thanks for the link, it looks really interesting, helpful too as I have an 8 year old boy with type 1 diabetes and a little girl, so thanks again xx
I think we should all have the right to choose our path through illness. Even if it is only a placebo effect if you feel better then it is right for you.
But, we must remember that we are suffering an actual illness no matter the cause and we can convince our minds of anything for a period of time but, not all the time. Yes we all want and look for reasons to our problems this is human nature, sadly there are not always answers.
I am now 62 years of age and have been suffering with BD for over 26 years. There have been many improvements in this time with diagnosis, treatments etc and in the beginning I used to be obsessed with finding a reason .....WHY ME? The good thing with age is we look at things differently and now I ask myself more WHY NOT ME, and I console myself with the fact I am still alive and there are other much worse than myself.
Hope you take these remarks in the right way and good luck to all in their own personal search for answers and ways to ease the suffering.
Great link for meal ideas. It looks similar to the way I eat anyway but I came to mine through trial and error. I can happily say that it does work - and that if I fall off the wagon, I pay.
Couple of things - I don't eat eggs at all but I'm aware that American eggs undergo different processes to ours. And cheese! What a wrench. I've found that if I want to have a little, it's best to have goat (cheddar) or sheep(pecorino) rather than cow - I get less backlash.
I hope this helps somebody or encourages them to look again at vegan living.
I'm in Canada so I know our eggs are treated differently than American eggs...we have much different standards. But I get mine from the local farmers market where they come from chickens who are raised almost as pets by Mennonites. They are large and brown and taste sooo much better than anything from the grocery store.
Ah cheese ~ yes. So many ppl dread the thought of living w/o it but it is a real bitch! lol. Like you I stick to goat cheese if I do indulge. Mostly goat cheese feta and very limited amounts of it. I don't know if you've ever tried nutritional yeast but it is a nice substitute for cheese and much better for you.
Mennonite (happy) chicken eggs? Gosh, they sound brilliant! Here in London, any eggs from the supermarket cause me trouble, even the superdooper organic. I must investigate the farmer market option, it's one thing I haven't tried...
Thanks for the tip about nutritional yeast - anything to broaden my diet a bit further is very welcome.
Beau
It may be worth checking with your GP or relevant medic (eg Gastroenterologist if you have one) if you are thinking of making significant changes. Some meds and foods don’t go well together and sometimes a gradual change is kinder to your body than a drastic one.
I got my dietary advice from an NHS Dietician. The first one I saw was as helpful as a chocolate teapot (did someone say chocolate?) but the second worked with me, thought outside the box and was open to learning herself, which in turn means she can pass her knowledge on.
Another benefit is that it was free, whereas some Companies offer a limited amount of free information, then have books, CD’s etc to sell if you want to take it further.
It’s interesting to read what others eat/can’t eat and yet another of those typical BD things where not everyone benefits from the same thing. I can’t tolerate Cola for example, and a lot of the recipes on that website wouldn’t be suitable for me. Shame, some of them look delicious.
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Diagnosed with Behcets in 1997 and now I have unexplained symptoms... getting very frustrating. Dr doesn't think it's Behcets..
controlling diet might help
Behcets And coeliac disease?
Incomplete Behcets?!
