I'm new here.

[Niki318]

I'm new here and I have recently been diagnosed with Bechets Disease after a long medical journey of almost over 3 years. It took an amazing rheumatologist and dermatologist who finally took me seriously to diagnose me. I get almost every complication that comes with Bechets, and have been put on Otezla which is an immunosuppressant they are trialing to prevent ulcers in those who have Bechets Disease. So far so good with treatments, as they are starting me off on mild medications to see how I react. I also have hypermobility syndrome and fibromyalgia, I am curious to see if any other people who have Bechets also have other diseases along with it? I am in my mid 20's and have had health issues on and off but nothing serious until I hit about 22 years old. I was told this is common as Bechets peaks or starts showing symptoms between 20-30 years old. I am fairly active and exercise almost everyday. I am curious to see if there are any dietary recommendations for those who have Bechets? I am excited to be a part of this page and learn more about Bechets!

[LindsG59]

Good luck on your journey! It can be a bumpy road bug you'll always get lots of advice and support on this forum. X

[Jaxxi]

Welcome! You must be very relieved to finally have a diagnosis. It's so sad that when tests come up negative many doctors assume the patient has 'nothing in particular', rather than 'something that doesn't show up on blood tests.' It can be a long and frustrating haul - thank goodness you are through that phase now.

There are lots of discussions on here about diet. Different things work for different people. I assume this is because inflammation is the root cause of most of our problems. My theory is that everybody has various foods that they are slightly intolerant to that are mildly inflammatory, but the body handles that inflammation so it is barely noticeable, maybe causing some bloating, gas or other mild discomfort. In Behçet's - especially during flares - this inflammation becomes problematic, causing gastrointestinal pain, diarrhoea and possibly symptoms elsewhere in the body such as joint pain and migraine. (Hogwash alert! I will stress this is just my own inexpert theory, based on observing my own reactions and reading the experiences of others here and in other Behçet's groups. It might be a load of old baloney!)

The variability of this illness can throw up some dietary challenges. I have foods I can happily consume when my Behcet's is good, but which send me running straight to the loo with stomach cramps if the Behcet's is bad. Coffee, tea, fatty foods and alcohol are in this group. And there are other foods which I know I am better off steering clear of at all times. Nightshades and gluten are in this group. There is another set of foods that I become intolerant to if I eat too much of them over a long timespan - oats, soya, peanuts and almonds are in this group. I should stress these are just my own patterns - other people on here are affected by a completely different range of foods - it seems a very personal thing. And others get by OK without altering their diet at all.

Finding whether foods affect you can be hit and miss. I think the key is being patient and gentle - try and take a relaxed hot-air-balloon view of your eating rather than watching it constantly like a hawk, which can be exhausting. Cut out just one food at a time, stay off it for a while, then watch what happens when you reintroduce it. Rinse and repeat.

Of course, the very best diet for Behçet's is a highly nourishing one! The illness and the drugs take their toll on the body so we need to give it the very best fuel if we are to keep our energy levels up and have the best shot at managing the illness. I take a few vitamin supplements - just B12 and D - and have their levels checked every so often.

Best of luck! Do keep us posted with how you are getting on xxx

[Niki318 in reply to Jaxxi]

Thank you so much! This was so helpful! ❤️

[gillianTS]

Hi Niki318

I too have Ehlers Danlos syndrome EDS (joint hypermobility syndrome JHS) JHS was reclassified to EDS, EDS now has 13 separate types and would be worth you looking at to see if some of what you have fits in with a particular type and discuss this with your rheumatologist, details on the the types can be found here:

ehlers-danlos.org/what-is-e...

JHS is an older name for the condition so your rheumatologist might not be up to speed with the 13 types of EDS, I was initially diagnosed with JHS but this changed to EDS type 3 when I saw my next rheumatologist at the same hospital, I have also been linked with other types of EDS as time has gone on, I have mitral valve issues too which are mild but associated with EDS too, gastric and other bits.

Interesting you have the fibromyalgia diagnosis, this was my first diagnosis before Behcet's, the Dr was adamant I had fibromyalgia but I clearly disagreed, I was also diagnosed with Costochondritis.

As far as diet is concerned I go along with Jaxxi, for me I have tried lots of adding and taking away but finally settled on removing refined carbohydrates since it was a recommendation by my then rheumatologist and I have read a lot about this too and it's association with inflammation, not that I have noticed a difference here, what I have noticed by removing this food good is a big difference in abdominal discomfort, bloating, changing bowel habits (although having issue here presently which is possibly relating to medication) I have trigger foods, flour based sauces, mashed potatoes, I avoid pasta, white rice. My diet is high in vegetables and fruit and lean meats etc, I do go off the diet occasionally while out or visiting other people and I know about it later 🙄

I desperately wanted to know what was going on with me in my mid teens right through to my mid 30's then a reprieve with symptoms for a few years and back again into late my 40's and the label of Behcet's was only given in my early 50's at first I was so happy to finally get an answer but still I have to go around educating medical professionals about Behcet's and how it affects me. I do not have uveitis so many think you do not have Behcet's so be aware of this if you do not have eye involvement and please make sure you continue having your eyes checked.

I wondered what part of the world you are in given your treatment with

Otezla, I have recently been reading about this treatment but understand it is not available everywhere.

On a final note, welcome to the Behcet's group, I have found this group absolutely invaluable in helping me understand this condition, offering their thoughts and experiences, covering associated Behcet's conditions and many none associated issues too.

Good look with your medication and I wish you all the best.

[Niki318 in reply to gillianTS]

Thank you so much! This was so helpful! I am from the U.S. !

[gillianTS in reply to Niki318]

Hi Niki318

It maybe all the types of EDS are not recognized in the U.S. but I do think it is helpful to know the associated issues. The advice I was first given was simply to rest every 20 minutes oh and try out some gentle swimming.

Gillian

[Guna1003]

Hi Niki318.

Glad you are here! One of the best places for support! ☺ I've had Neuro Behçets most of my life. I also use Otezla and a couple of fists full of so many more other meds. Otezla has reduced the number of blisters I get. It's really a life saver! I was running around with 10 to 17 blisters regularly...with Otezla i only deal with up to 7 at a time but usually less. Some other conditions I have along with Behcets are fibromyalgia, peripheral neropothy, RA, vasculitis, Rheynods, transient ischemic attacks (TIA), uvitis, epilepsy and the list goes on. Most of these developed over time without treatment and a new diet...lets not call it a diet but a new lifestyle. It makes such a huge difference on how my body feels. I follow a Paleo lifestyle. I hope you continue to check in and give us updates! Sending good vibes!

[SCMW]

Hi, glad you found health unlocked. I was diagnosed in my late 30s about 2 years ago now and just turned 40. I’ve suffered most of my life and was diagnosed with fibromyalgia at 18. I became gradually more unwell in my mid 30s and was fortunate to be able to utilise private medical cover and received a diagnosis with a switched on rheumatologist and this was confirmed by the London coe. This forum was such a help especially when you have something rare and to be in touch with others who also have Behcets. Like you I’m on first line meds. Interestingly I don’t have the genetic markers but my mother has just been diagnosed with undifferentiated connective tissues disease. Thats treated at Guys and St Thomas and they also treat FMS and other conditions like EDS. They seem to run concurrently with lupus, etc. It’s good you’ve been caught earlier, hopefully you won’t feel as poorly as long as a result. I found an anti inflammatory diet helped, no dairy, no gluten and no fermentables. Hope that helps. Best wishes

[Niki318 in reply to SCMW]

Thank you! I too was originally diagnosed with connective tissue diseases before I began to get more and more ulcers and eye issues! It has for sure been such a struggle and journey!

[Saassii]

Beware of signs of mold or water damage, I'm hypermobile and it triggered a Behçhet's type response. Don't live or work in a place that shows signs of it anywhere.

[rooser1]

As for diet, same as the others have mentioned. I am 100% sucrose free. I eat a very low carb, minimally processed diet. Meat, fish, fats and veggies. Nothing from a box. We dont eat out very often. I on occasion do low sucrose fruits like strawberries and blueberries.

the diet was honestly the game changer for EVERYTHING. please click on my profile for all the other many in depth responses.

[supergirlsmom]

Hi Niki - I have followed the comments on this site for years to get tips, which have been helpful. I'm actually the mom of a daughter who is almost 19 years old and developed mouth ulcers, then arthritis, then genital ulcers, then ocular migraines - all beginning at age 13. We are in the US as well and she has various specialists at CHoP (Children's Hospital of Philadelphia - which is a top children's hospital in the US - people fly from all over the world to go there). My daughter was on colchicine (plus prescription nsaids) for several years, and oral steroids only for brief periods of 8 days or so if a flare threatened. She required an increased dose of colchicine to prevent ulcers, which caused too much stomach upset and weight loss. Her rheumatologist started her on Humira almost a year ago, and she has really gotten more stable and had minimal threat of ulcers. She is away as a freshman in college and is doing well, despite the increased stress, so we are very encouraged. About 6 months ago she saw a top dermatologist about a recurring Behcet's skin lesion, and this doctor had just been at a conference in Europe on skin manifestations of various auto-immune diseases. The long and short of it was that she expects research to show that Otezla is better at ulcer control than Humira (which resolved all arthritis and arthralgia for my daughter), but because it's only available as an oral drug right now, it would not be good for my daughter's gastro system. Hoping they come out with an injectable version soon!! I am sorry to say to all the wonderful posters on this site, that I see your struggles to get referred to various specialists and Centers of Excellence, but the UK socialized medical system appears to give you the less expensive drugs and not the latest and best - which are deemed "unaffordable" by the government health system. I know, for example, that there has been a Cystic Fribrosis drug that's been used in the US since 2015, but was unavailable to patients in the UK as "unaffordable" until this year. That's a real shame and I truly feel for your situation, as we all want the best drugs with the lowest side effects and long-term damage to the system.

The Langone Medical Center in New York City (it's the hospital of NYU - New York University) has a Behcet's Center, where people visit from all over the globe. They have grown the largest pool of Behcet's patients, I believe, in the world, to further their knowledge of effective treatments. I suspect that my daughter will go there when she ages out of the Children's Hospital, at least to get a review of her treatment, and I believe it is the closest thing to "one-stop shopping" out there - with all the usual Behcet's related specialists in one place. If anyone has ever been there - please share. We are encouraged at the benefits for Behcet's patients that arise from the study of more common auto-immune diseases. Sorry for the lengthy post. I guess it's been bottled up for a long time!