Is Behcets related to the foods we eat?

[Wicker]

I was diagnosed with Behcets about 3 years ago and I was prescribe a large dose of immunosuppressant's and steroids. Late last year (2013) I went for a food intolerance test. This test showed that I have an intolerance to diary and wheat. Since I cut both of these from my diet I have noticed a massive improvement in my symptoms. Once I start consuming them again, my symptoms reoccur I have especially noticed this over Christmas when nice food is hard to resist! The pain in my joints last night was unbearable, combined with a headache, mouth ulcers, constipation, rash on legs etc. One week away from these foods and it all clears up. Is it possible I just have a food intolerance and I'm taking all of this medicine unnecessarily???

[devonshiredumpling]

It's a very difficult question isn't it! I have struggled with sore joints when I eat bread all of my life - I even had my knees 'looked at' some years ago only to be told there was nothing wrong with them - which isn't what the pain was saying. I also struggle with intolerance to dairy products, msg and a whole raft of stuff. So, as you can imagine, I have asked myself the same question. The answer was that, although less frequent, I still had the symptoms when I was eating a completely safe diet. What is more, the symptoms have got progressively worse as I've aged - 60 this year.

I experimented to find the answer - it depends on you, your illness, and your doctor as to whether you can do the same.

[Wicker in reply to devonshiredumpling]

Its so hard to know, I am 30 this year and would like to start a family. I have read that intolerance can affect fertility and this would be a concern. Also with all the medication I take, becoming pregnant is dangerous so it needs to be properly planned. One of my main issues is that I see a few doctors depending on the day of the appointment. Some of them are so closed to the idea of food being a factor. Its very frustrating as I feel they think I a hysterical half wit! Their only solution is medication, medication, medication.

I think I will be telling him now that I am going to experiment- in conjunction with the Behcets, I am continually getting colds and was in hospital before Christmas with a UTI and blood infection. Surely at some point the doctors need to consider is all the medication we are prescribed really the way forward???

[magician]

Devonshire dumpling, Wicker - we are on the same planet as far as our sentiments about food and medication are concerned. Also wondering if good diet could be sufficient to overcome symptoms and also frustrated with the meds- meds approach.

I have been feeling really good ( continued medication) on my wheat free, almost zero processed sugar and blood type diet, which i started early this year. But i am on vacation, no kitchen of my own. Ended up eating (and somewhat enjoying) the no- no foods. My body reaction is not so bad, but the gassiness is back. Much as i love this vacation (hubby spoiling me in a really nice place), i do look forward to being queen of my kitchen and food supply!

I did try surfing for physicians practicing alternative medicine ( which i believe in) but the few that i found seem to be more on the voodoo side or are pushing some pre-fabricated wonder formula - quite frustrating...

[Kedaco]

You say one week later it all cleared up that is because that is how long the flare-up you had lasted that long mine last between 5/7 days and had them every month this year but I think that is because of stress ever since I had my incapacity benefit stoped

[fleagle]

I stopped most dairy , drink almond milk, and strangely enough protein shakes with plenty of fruit, also eat tons of tomatoes in the summer from my greenhouse. I had a flare up in summer though and just starting one now- STRESS is your biggest enemy in my hiumble opinion. It has flashed up the last four flare ups in me and thats only since I started keeping a record of life events. Stress is definatly a catalyst for it.

keep well, try a few experiments with your diet...I did and things have improved a bit.

[Jaxxi]

I am really interested in diet. I had a 5-year remission after going gluten-free and have discovered that when I am having a flare, certain foods definitely make we worse, particularly the Deadly Nightshade family - potatoes, tomatoes, peppers and aubergines and foods that are high in carbs. Yesterday at the Birmingham Centre of Excellence Janine the support worker was telling me she'd heard about something called the Anti-Inflammatory Diet, and would look into it for me. I've googled it, but there are several diets being touted as anti-inflammatory on the web, so I will keep in touch with her to see if any such diets have any scientific basis for being used in auto-inflammatory conditions.

[xavier2000 in reply to Jaxxi]

Hi Jaxxi,

If you have more information on the anti-inflammatory diet, can you be kind enough to share with me. I am a Chinese Singaporean. I am a single mother with 2 kids and I was diagnosed with Bechet's in 2010. The auto immuno-suppressant n steriods have jeopardise my life. I am still having flare quite frequently.

Thanks in advance,

Wynn

[Jaxxi in reply to xavier2000]

I will definitely be looking into it, Wynn, and will keep you posted. I am newly diagnosed but have had Behçet's symptoms all my life. I am 56 and have made it this far without steroids and immunosuppressants and certainly don't want to start now if I can avoid it, so my starting points will be diet, exercise and supplements - all things I know can affect inflammation - and maybe colchicine or other herbals.

[AK13]

I find this all really interesting not something I've ever thought about before but def worth looking into. How about alcohol I'm not a big drinker at all but I was wondering if it affected use at all my hubby believes it's the root of all evil so just experiences or options would be good thanks x

[Jaxxi]

I have been out and had a few glasses of red wine twice thus week (yay, like having a real life - long may it last!). Both mornings I woke up with a slight hangover head, but the headache was less bad than the headache I normally wake up with! I read somewhere last week that a very small amount of alcohol has been known to help inflammatory conditions, but larger amounts are inflammatory. Anything more than a couple of glasses definitely makes my folliculitis worse.

[kathleen71]

i have had the same experience and after much research have found a strong link to cows milk protein and bd. it is like this, as a baby i was allergic to cows milk and was allowed to start having it at age 3. I started fainting. As years went on i got all the bd symtoms along with high white blood cells. I stopped dairy and massive difference ! long term exposure to the cows milk keeps our body in constant fight mode because it sees milk as poison , and years of this morphes into bd and chrones. joanne

[OpsDave70 in reply to kathleen71]

Gluten has the same effect on me. Off dairy, gluten and soy protein and oil. Taking Citracel 2-3x/day and Creon to keepndigestive system regulated. So far, so good.