It might help someone...

[marlene123]

Hi everyone, I started with behcet's symptoms around 8 years ago, diagnosed 4 years ago but nothing really happened since then, still asking to be referred to a centre of excellence and still waiting. I don not have any medication.

So over the years and with the help of this forum, I've been trying different things to see what helps with my case.

My symptoms are mainly mouth and genital ulcers, skin lesions and migraines with aura.

I've had a flare-up of mouth ulcers, with the other symptoms in between, that lasted for over 6 months without a single day ulcer free.

My symptoms almost disappeared after I started an anti-inflammatory diet (no gluten, no sugar, low fat, high protein) and I also have some supplements to help (once a day in the morning I have a turmeric capsule, a probiotic capsule, fish oil capsule and a multivitamin tablet). I could not believe when a week after starting this I was without ulcers for the first time in over 6 months, so I sticked to this "treatment".

I still have the odd ulcer if I get a trauma in my mouth or bite my tongue but my symptoms improved I would say by 95%.

Then because I don't have symptoms I let go the diet a bit and there comes the ulcers to remind me I must stick to it.

I've just been back from a few days in Italy (Italy = pizza and pasta = gluten) and because I misbehaved here comes the ulcers again, skin lesions in my legs and a terrible migraine with aura. But after a few days being back in my diet I'm fine.

What I think is most essential in my case is to keep away from gluten, I can almost say what day and time the ulcers will appear after I have eaten something full of gluten, like a pizza or pasta. Sometimes if I'm doing very well in my diet I can have a small gluten food like a croissant and nothing happens, I think it's all a balance between inflammation and anti-inflammatory foods.

This works for me so far and might not be good for everyone but it's worth a try and it might not be a cure but it might help with the treatment you're currently having.

I'm the one who cooks at home and because I'm cooking this type of diet my husband is having too (either he wants it or not) and he feels more energetic, has lost weight and body fat. So it can't be a bad thing.

I wish you all the best with your health and life!

[2106]

Hi I do think diet is a major factor with controlling things. I also use a 100% natural toothpaste never put anything on my skin other than coconut or lavender has to be 100% organic otherwise I get ulcers on my body. I also wash my hair with organic shampoo. Our water is from our own spring so no chemicals. I don't drink alcohol coffee mainly water. We grow most of our veggies our own eggs and produce our own pork etc. I know that no chemicals are used. I can keep my Behcet's under control without medication I have had a couple of major blips when I had to have steroids by that is over a period of 44 years. My main symptoms are mouth and genital ulcers. Pain in my feet at the moment but I do exercises and this is really helping. I take manuka 15+ or 20+ honey for my inflammation. It really is trial and error but listening to your body is a must. I find that if I eat something and it has an effect I leave it for a few months then try again. If it still has an effect then I remove it entirely. Works for me. All the best and thanks for sharing. Xx

[Kiwichris]

Yes I too can control flares with a healthy diet. If things are flaring I go very strict alkaline based diet so vegan really. Lots of fresh vege and healthy meals. My normal diet is totally gluten free, sugar free and processed food free. Eat nothing out of a box.... but when I flare I have to go even "cleaner" with a very vege based and grass fed meat based diet. Totally works..... I too take omega 3 high quality fish oil , reseveratrol and magnesium. All seems to help.....

[LauritsJensen]

Hi Marlene,

Thanks for your input. I like the straightforward approach you have on how to deal with this condition. I am having similar symptoms, although no aura, but a chronic pain and stiffness in my spine and neck. I had symptoms for 25 years (I am now 42), but many years ago, I was living in a relationship for 8 years eating mainly indian-inspired vegetarian food, and I did not have many flares in that period.

I am curious, if you can point in a direction for a practical approach to your kind of diet? I find it difficult to 'just start' going gluten free.

Also, those turmeric capsules you eat; what do they contain and how much? I wanted to give that a chance for some time, but do not know where to start.

Thank you for inspiring me!

Ronald

[marlene123 in reply to LauritsJensen]

The turmeric capsules I buy are these ones on amazon amazon.co.uk/Vegetarians-AS...

Rooser1 on next answer described my type of diet really well.

Basically:

> NO Sugar (this includes chocolate, sweets, etc, I don't like them anyway)

> NO Gluten (I just don't eat bread at all, I do eat gluten free pasta but not very often as I try to cut on carbs

> NO Butter and similar fats (replace butter with coconut oil)

> Low fat meat (chicken breast and turkey breast live permanently on my fridge)

> Fish (whenever I can salmon, tuna)

> Cook with healthy fats (olive oil, coconut oil)

> Nuts have healthy fats

> Vegs are all good (I have broccoli a lot, they live in my fridge as well with my chicken)

> Fruit I have some before or after my workout (bananas or apples)

> COCONUT OIL is great for EVERYTHING (skin, lesions, ulcers, cooking, spreading, hair, everything)

It's not difficult to go gluten free, it's mainly bread and pasta, and the other things like cakes etc are already out because of the sugar.

It might me difficult to start but you get used to eat well quick and the way you'll feel will make you stick to it.

Hope this helps.

[LauritsJensen in reply to marlene123]

So you just take one curcumin tablet a day (along with the other supplements mentioned)?

[marlene123 in reply to LauritsJensen]

Yes, that's what I do. It's been working for me.

[LauritsJensen in reply to marlene123]

Now I notice that I can get most of those supplements that you mention from the same company directly from Amazon. They have discounts for three etc..

Is that what you do?

[marlene123 in reply to LauritsJensen]

The probiotics I buy are from amazon as well: amazon.co.uk/Probiotics-Cap...

The fish oil and multivitamins are usually from Holland & Barrett, but it depends the deals I find and obviously always read the labels and compare composition.

[LauritsJensen in reply to marlene123]

I hope it is OK that I ask more questions..

I have been looking in to this curcumin thing, mainly because I want to give it a serious try.

But I am confused.. The ones you eat are not containing a high volume of the curcumin, and they do not include black pebber.

Is that something that you have looked into? How much of the Turmeric powder is curcumin etc..?

Compared to other products, that are more refined curcumin..

[marlene123 in reply to LauritsJensen]

Be careful with things like yoghurts and similar. Yoghurts are good but get used to read the label, some are packed with sugar and many times they're the low fat ones. And those who say no sugar are usually full of fat.

[LauritsJensen in reply to marlene123]

Thanks! I live in Denmark. We mostly eat the pure stuff with pro-biotics like Acidophilus etc.

Unfortunately the supermarkets are now promoting the sugary stuff.

[sam0511 in reply to LauritsJensen]

I have heard over and over about the benefits of Turmeric

[rooser1]

I agree with diet. I am sugar free, high protein, high fat, low sugar veggies. Everytime i get myself in a flare i go straight for the best anti inflammatory foods- usually salmon asparagus brocolli spinach. I accidentally ingested too much sugar a few weekends ago (long story short, they changed my red wine) and boom. 16 oral ulcers next day. almost got genital ones but doubled up on meds and sleep and ate very clean to combat.

as for tips for others on how to start- pick a meat. add a veggie. cook it in fat. fat is your friend. most carbs are not. sugar is the devil. that's that. look up ketogenic diet as well- i'm basically on that except i do keep some whole grain carbs in from time to time because of weight lifting.

thank you for sharing and affirming that we might be on to something!

[marlene123 in reply to rooser1]

I also do weight lifting and HIIT. Did it ever happen to you a very intense workout to trigger a flare? I do Insanity when I want to do cardio and I think it sometimes it triggers a flare but I might be imagining things...

[rooser1 in reply to marlene123]

i personally can not stand HIIT. LOL its just too much on my joints- i also feel incredibly stiff after walking more than 30 mins. I prefer heavy weights, slow and controlled movements. As for triggering a flare, not that I have noticed. I have for sure linked sugar to my flares and lack of sleep.

It sucks when im in a flare, and right now im on an every 10 to 12 days cycle since mid july- because I KEEP EATING SECRET SOURCES OF *&%$ing sugar- then i lose my weight progress from the week before... so the second I start to heal up, BOOM, I ate something unsafe by accident (i am also incredibly sucrose intolerant). The last time was my red wine (they changed it) and the time before that was a burger. I assumed burgers would be safe. NOPE.

So now i just dont touch peoples food at parties.

I am personally on the up and up this week, thanks to fasting and eating my super safe awesome anti inflammatory foods.

My meals this week so far this week and are homemade:

beef and brocolli with portioned rice

chili with a ton of beans (beans and me are perfectly fine- apparently this makes people gassy- i dont have this issue)

spicy mayo salmon, shrimp and asparagus with portioned rice

im on IG, check my foods if you want:

bitterbiologist

[marlene123 in reply to rooser1]

Thanks for the tips.

I usually do my own burgers once I found that only about 80-85% of the burgers are actually meat. I bought a burger press for a fiver on ebay and love it. I can mix chopped onion and other stuff with the meat and I know better what I'm eating.

I buy a part of my food from musclefood. Have you tried it? It's all lean, grass fed, gluten free and sugar free. They even have gluten free protein pizza.

[rooser1 in reply to marlene123]

Ah okay i see it as a europe site. Im in america. I honestly dont eat out except for indian once a week (and its very protein based for the most part). I cant think of the last food items that I ate that came in a box. We usually just pick up bulk meat and veggies and call it a day.

[marlene123 in reply to rooser1]

Lack of sleep is really a problem in me. I work 12 hours night shifts and between shifts I sleep 4-5 hours, on my days off if I'm lucky I sleep 6-7. I really need to do something about it, maybe get a new job.

[rooser1 in reply to marlene123]

Sleep is seriously so critical. When I have a few days of less than good sleep, my joints act up immediately. Then the ulcers come. Im in bed by 930 the latest, up at 6. Schedules are good.

[marlene123]

You're very welcome.

Also, for the last meal of the day (before bed) I try not to eat carbs.

And replaced potatoes with sweet potatoes.

It's all a matter of replacing the less healthy things you eat with healthy choices.

[LauritsJensen in reply to marlene123]

You probably know, but there is a lot of talk about 'curing' or treating Ankulosing Spondilitis with a low-starch diet. It is all very well explained by this british doctor researching in the gut flora. A lot to do with the HLAB27 gene etc..

Very interesting to read about!

I just mention it, because here, the starch (not gluten) is the sinner..

[marlene123 in reply to LauritsJensen]

I'll take a look at it. Isn't it impressive that we can learn more from sharing experiences in forums than in doctors appointments?

[JHardiman in reply to LauritsJensen]

We have experimented with different probiotic & prebiotic foods - yoghurt, sauerkraut, kombucha, etc & they seem to help

[LauritsJensen in reply to marlene123]

What made you not eat carbs before sleeping?

Digestive problems? Bad sleep? Morning stiffness in joints?

I am curious.. And quite interested in your approach to this.

[marlene123 in reply to LauritsJensen]

I try not to eat carbs before bed because I won't need many calories while I'm asleep and they will be stored as fat by my organism.

I usually have some carbs before and during work (I need a lot of energy at work) and before I exercise because I need energy for my workout and I'm going to spend a higher amount of calories.

I've also read somewhere than when your body is "full of carbs" (calories=energy) it can be more difficult to sleep. Not sure of the accuracy of this but it makes sense.

I literally see food as the fuel for our organism and my meals are planned depending what I'm going to do during the day. Not always managed to do this right, but I try to stick to it the best I can.

[Duckiejo]

I have to agree with the diet changes mentioned. I was having flares every two weeks and was given colchicine. Then the doctor told me he wanted to stop the meds for possible side effects. I decided on my own to change my diet and I immediately lost weight and I nearly eliminated all of my flares. I am gluten free, sugar free, and dairy free. The only time I get an ulcer is when I don't get enough sleep for a few days or if I am under stress. Those are my triggers. To help, I try to get more rest (naps or sleeping in on the weekends) and I can reset myself. :). Sounds like we have all definitely found a great way to deal with this difficult disease. It's affirming to hear so many others say the same thing has helped them. When I told my doctor what I was doing and that it had helped, he seemed to think I was imagining things. I don't have another appointment for a year because I've been doing so well. So I guess I'm not imagining that!

[doileyqueen]

Really interesting reading I try really hard to eat a sensible diet and take lots of vits including turmeric. Overall I manage day to day. I don't bother going to my GP anymore no point his idea of help was just keep taking pics of the ulcers. I would like some advise as my weight is creeping up and my creeky joints will get worse now we're going into autumn. I love sourdough which I thought was OK plus can't resist a biscuit or 2 I don't go mad on anything really but don't want to get any bigger. Is it just age I'm in my 60s so extreme exercise is out I garden and have bought an exercise machine which I try,not often enough, thanks for reading my ramblings any advise would be great you are all an inspiration 😊

[marlene123 in reply to doileyqueen]

The problem with putting on weight with age is a matter that your metabolism slows down with age and consequently your calorie needs decrease, but we don't decrease the calorie intake. Gaining or losing weight depends if you are eating more calories than your spending. That's why the exercise is important because will increase the amount of calories spent. You don't need to go extreme with it, some exercise is better than none. Walking every day for half an hour or so will help with the weight and your joints as well. If you lack the motivation to do this why don't you get a dog and take him for a walk every day. I walk much more since I have a dog. And it helps with the mood as well to go for a walk and get some fresh air, gets you out of the house.

About the diet is always the same principle, if you're following a healthy diet and still putting weight, consider the amounts your having for each meal and don't forget the snacks, everything counts.

Last night I was offered some biscuits which I declined and then read the label, it was 168kcal for 2 small biscuits with cream! No thanks! That's more than 10% of my daily calorie allowance. The same calories of 3 of my yoghurts or 3 apples. Not to mention that all those calories come from wheat, butter and sugar.

You can always have the occasional biscuit and it won't make a difference as long as the rest of your diet is healthy and you keep yourself active.

When I wanted to lost some weight I installed a free app called "My fitness pal" to monitor my calorie intake. It does the trick, you just have to insert every food you eat by scanning the bar codes and measure the amounts and it will make the calculations for you. It will warn you if you're having to much sugar or saturated fat. You put on your age, gender, weight, height, the weight you want to have and it will tell you your daily calorie intake. But everything counts. Only then I realised the amount of calories I was having in small snacks here and there that add up in a great amount of calories.

The best thing about this app is that you get a better idea of the nutritional content of every food.

I hope this helps, the diet mainly has done wonders for the control of the symptoms. I also got fed up going to doctors with no results.

All the best!

[JHardiman]

Yes I believe a low or no gluten, no refined sugar diet is really helpful for reducing inflammation & helping with fatigue, skin nodules, ulcers, headaches. Also higher amounts of good fats such as coconut, avocado & nuts seems to reduce inflammation too.

[doileyqueen]

Thank you both, I am lucky that I have a dog and live in a lovely area for walking, I just cant seem to get the motivation after I have been to work. I have a stressful job working with an autistic child in a primary schooI, I rarely sit down and sometimes just have to go to sleep for an hour when I get home. I will take your advice and try less refined sugar, as a vegetarian I do eat lots of veg, nuts etc but also a lot of fruit I have been told this can cause inflammation from the acids, at the moment my elbow is swollen and lumpy with sores and the mouth ulcers are back.

First day of term is looming so I need to get my healthy head on and re-think my diet. Thanks for the advice and support

[marlene123 in reply to doileyqueen]

I'm a nurse and I work permanent nights 12,5 hours shifts, and I know how it feels to get home exhausted with the feet and ankles aching. Sometimes my motivation is very low too both for walks and exercising. But every time I really don't want to go and then I go anyway I feel better and less tired after I go for a walk or do my workouts and in the end I'm always glad I did it. Just try a bit harder and it will become a good habit.

With cutting the sugar I found it easier for me just to cut completely than reduce it. Because every time I had something sugary it reminded me how good it tastes. So I found that I don't feel I need it if I just pretend sugar doesn't exist. Period. If I was allergic or diabetic I couldn't touch it anyway. But this might not work with everyone.

Step by step and small changes little by little but ALWAYS in the right direction will make a huge difference in the long term.

You'll feel more energetic living without sugar, because sugar does give you the sugar kick at start but when lowers the sugar level on your blood the symptoms are tiredness and fatigue, then your body asks for more sugar to keep the levels up, not the right way to go. If I could choose one food (if it can be called a food) to vanish from the face of the earth would be sugar.

[doileyqueen]

Thanks for your input, I started the exercises again, yeah.

I just have to keep in the right mind set and remember what it felt like to feel fit oh and

Heres to vanishing sugar.