I am still in the process of being diagnosed. My rheumatologist is struggling to come to a definitive diagnosis because he feels that because I am a white generational Canadian the chances that I could possibly have bechets is slim. He says that it’s most commonly found in middle eastern people. Now, maybe that’s true.... however, my fiancé’s aunt also has bechets disease and she is “white” as well.
I had a colonoscopy done and visually said that there was no sign of infection. But when they took biopsy’s it showed signs of inflammation. Please keep in mind every test I have done shows “inflammation” for the last 3 years. So now my doctor wants to explore the thought of IBD.
Have any of your doctors thought about diagnosing you with IBD? Or do any of you have a dual diagnosis?
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Mcgs
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Mcgs Oh dear. I think your doc needs educating. Perhaps you could suggest the Behcets Society information and international diagnostic criteria. Do you feel you fit the criteria?
We all have many genes in our individual gene pool and Canada, like many places in the world is a mix of people who travelled from all over. We all only have to go back further than one or two generations to find several other countries or continents our ancestors either visited or would meet, that lurk, and nobody talks about. Your doc has a very limited mind For example. Many people from the silk road countries settled in the UK and Ireland, in Liverpool, Hull, Scotland. A substantial number of the first settlers those that established some less than desirable businesses came from the UK, to Canada, from the North of the UK. They will have brought all their sailing men and their families, their craftsmen and families, servants, wives, many from silk road counties. Its all a big mix. We are all a big mix of genes and all those genes can surface at any time when a couple of them surface they become dominant.
Well that my take. On my maternal side my grandmother is from Ireland, all the family have green eyes and either black or dark brown hair, go olive skinned in the sun. My grandfather looked ever so slightly Asian as did my aunt and mum to a lesser extent. I have no particular interest in knowing exactly what my mix is, but we are all mixed up and you think a doc would know that lol
Dangle the criteria under his nose, that's what counts, he needs to forget about your ancestry.
I have done a lot of reading on BD and I believe that my symptoms fall directly inline with BD. Being apart of this forum as brought me such peace because I know That there are others out there dealing with the same things as I am. When I read on IBD I only hit a few of the symptoms, there isn’t enough evidence to convince me that this is what I have. I just really wish my doctor would stop being so stubborn and keep an open mind! Thanks for your reply
I am in process of trying to get a referral to a CoE in the UK after brilliant advice on this site and my early digestive issues were dealt very much like yours.
About four years ago one of my flare ups caused me to be admitted to hospital , I had already been diagnosed with IBS from the stomach pain, bloating and inflammation from previous flare ups and a colonoscopy . On that admission was one of the first times that a registrar suggested Behcets, but when I saw another later a mentioned what my admitting doctor said was told exactly the same thing, you can't have that because you are white. So another colonoscopy , another inconclusive diagnosis, IBS, tortured colon etc and IBS meds continued, they reduce the issue day to day but make little difference in a flare up.
So asking for help here, after more years , and more off hand comments of , oh could be Behcets from various doctors and have been told that you can have Behcets if you are white.
Definitely, go on the BSS website and read their stuff , and as I have been advised , print out whatever info on symptoms and diagnosis to take to your GP or specialist and say you want to be tested . If you read my original post, you will see , you don't want to be going through this stuff for eleven years without diagnosis , their ignorance can really effect your life and increase the areas of the body that will be effected .
Unfortunately all the doctors immediately say u don’t have Behçet’s - blaming it on ethinity. Not very many Rheumatologist are familiar in detail/treatment — to afraid to try the big guns! A shame for us😩
Sorry you are having a struggle to find a diagnosis for your symptoms. I have to agree with TheHud and Blearyeyed’s comments here. I am from the U.K. and white. Definitely not atypical Behçet’s. I totally understand- ‘tis no mean feat.I have this very week been diagnosed with Behçet’s by, would you believe, an Oral Consultant.
I have been experiencing many problems for some time. I have paid numerous visits to my GP’s Surgery over the past 5 years with terrible, debilitating symptoms. Awful gastro’ problems but told mine were all IBS and GERD. No colonoscopy. Prescribed Mebeverine and Omeprazole for this. Also experienced reactions to certain foods. Skin rash on legs, (said flea bites from cat) cat did not have the fleas. Red, raised skin on eyelids. Reaction to moisturiser, apparently! Red, itchy dry eyes. Corneal erosion. Mouth ulcers more frequently (had these since around 2009) and up to this year-every week with awful, swollen tongue and skin peeling from inside of mouth. Awful sweet taste and a ‘wooly’ sensation after eating. Vaginal ulcers appearing. Repeated chest infections-the latest lasting 12 weeks. Told it was the flu and a flare up of asthma. And so it goes. Referred to a Rheumatologist-suspected Lupus but didn’t fulfil the diagnostic criteria. Perhaps some form of Connective Tissue Disorder? All to no avail. Duly sent on my way and was more or less told to be happy/grateful in the knowledge that I don’t really have anything as such! All that said, my symptoms continued to be just as bothersome. Why would they suddenly disappear? 🤷🏼♀️ My GP seemed to think it was all anxiety related-and yes, some anxiety was present because I was getting nowhere. Referred to immunologist -said I have ‘skin fragility’ in oral area-perhaps a consultation with someone in that field of work could give me some insight. And, he most certainly did. He said he had read through my notes in great detail. Felt it was time to fit the jigsaw pieces together after being treated for all these symptoms by someone different every visit to GP surgery. No one was looking at the bigger picture. My increase in severity of symptoms was telling him that something was definitely amiss. After my own input, he became very animated and said I seemed to confirm his suspicions.
I had never heard of Behcet’s up to joining HU, as many of the AD’s share similar symptoms to one another. It’s not the best pre -weekend news I have received but I have some slight relief that it is not ‘all in my head’! The first line of treatment are steroids to get the inflammation under control, with a follow up consultation in three weeks to see how I have responded. The thought of steroid use fills me with dread as they come with their own set of problems. However, I can but try and see where this takes me. 🤞🏼
Don’t give up. Follow your instinct if you feel there is more to your symptoms than you are being told.
Sorry for the very long ramble. 😬 I do hope you find some answers and soon. x
Your experience to getting a diagnosis is so similar to my own.
There is nothing that makes you feel more ill than trying to get well !!
I have only really made progress because my dentist, whom my doctor quite grumpily kept sending me to when I got a flare up in my mouth , sent me to an oral surgeon and ENT , at which a consultant has finally said that all my symptoms indicate immune disease and they just need to narrow down the cause.
I was sent to a rheumatologist last year by a good GP who had just started at my practice ( unfortunately, 6 months in the job there meant she didn't take up permanent contract) but it took a year for an opthalmology appointment so I was discharged without treatment until they got any results from them, no thought about pushing for a quicker consultation , of course.
I now have uveitis , but my doctor was still very reluctant about referral to a CoE. I have a feeling I may have to ask the dentist to do that too.
Unfortunately, GPs and many consultants do not consider looking at all your symptoms at once , even if you ask them too, and if the answer isn't simple they send you away without considering looking for an underlying cause outside there specialism, usually accusing you of creating your symptoms because of stress . This is why it takes so long for people with complex , multi system diseases to be diagnosed , and us as patients suffer further pain or damage because of it.
There really needs to be a change in the philosophy of medical professionals and guidelines to stop this happening . Patients should not be made to feel more stress and made sicker by trying to get well . I wouldn't be surprised that conditions like , Behcets , Sjorgrens and other immune diseases are more common than even specialists in them realise , it is just that there are many people out there suffering with the pain and conditions associated with them without ever being offered the appropriate tests or help.
And sorry to hear you are having much the same problems also. This is all too common it seems. 😏 I do think your suggestion of a referral from your dentist is a good idea. 👍🏼 Before my appointment with the Oral Consultant I was of the mind that I would be given treatment for said ulcers and sent on my way! I had been sent to see one of his colleagues way back in the day with less frequent problems- until the present time where everything seemed to gather speed. He noted that and said it was possibly the beginning of what was to follow.
It is really comforting to hear from others with similar experiences- confirms one hasn’t totally lost it!
When I was first informed by the rheumatologist that I might have Lupus, or MCTD perhaps even vasculitis ( is Behçet’s a form of vasculitis?), I joined the HU forum and had some great advice from really helpful, knowledgeable people on there. Many with profound and complex symptoms, but more than ready with great advice and kind words. Humour also included. 🌟The support and encouragement gave me the extra push to continue to find the cause of these ‘imagined’ symptoms. One Gp refused to look at my photograph diary of rashes, ulcers etc! I could rant for England the amount of times I have been offered AD’s for anxiety and perhaps depression. I have on my records ‘Hypochondriasis’ which galls me to this day. I was given that diagnosis when I was in a similar situation prior to a diagnosis of stage 4 Endometriosis. Seven years of abject misery and pain. I was passed from pillar to post and could no longer continue. Had a private consultation. Sorted within the week. Wry smile here.
All of the above you have stated is so obvious, and if you can see that and myself too, along with hundreds of others, why is there nothing done to improve or remedy the terrible situation this puts patients in!
Thank you once again. Great to connect and have a wonderful source of support.
I will be watching and crossing all that your stubborn GP will reconsider a referral to CoE for a definitive diagnosis.
Ps. Just clicked to ‘follow’ you and read your original post. See that you too had endometriosis!! Goodness, now I see all the similarities for myself ...x
Yet again , the silver lining of no longer suffering in silence and joining this site, the confirmation and support that makes you feel like you are finding a way out of the dark
( Quite an achievement when you are as blearyeyed as me at the moment, giggle, if we don't laugh we'd cry wouldn't we!)
Please keep in touch and perhaps we can help each other get through this with an electronic shoulder to cry on from now on.
PS: does following me let you see other messages I have sent to other BD posts ? As I gave some views on diet, exercise and getting through the day mentally you might want to chat about.
As for diet -I def need advice - it has become so limited due to reaction to certain fruits and salad items that I was, at one time, able to tolerate and thoroughly enjoy. The inner lining of my cheeks peel with grapes, gums swell with peaches, tongue puffy, strawberries, sore tongue....Rocket leaves made my mouth fill with hundreds of tiny ulcers...so it’s a tricky job. Vegetables, when cooked I am fine with. Sighing here. I am sure with better nutrition I would at least be helping myself somehow towards being in slightly better health. I think !?
I will certainly keep In touch. 🤗
We need all the help we can get. Although many users are not medically trained there is always plenty of emotional support to be given!
How's it going? ( I can hear the internal hysterical laughter from here before you say oh, alright out loud don't worry😅).
I sent you a message in your personal chat box but not using it before, and not hearing back just wanted to check if you got it.
Just wanted to check some more details before hopefully giving you some diet , exercise and other advice.
But, in the meantime , grapes, strawberries, peanuts, tomatoes, certain types of stone fruit can be definite no no's for most people with allergies or skin and mouth related illnesses. If the rocket caused such a violent reaction there is also probably some sort of chemical in it that triggers symptoms, how do you do with green apples, celery, pineapple, citrus , cucumber ?
Hope you find my original letter, let me know , I can resend it.
Has, the oral surgeon given you lidocaine or other mouthwash to help with pain during eating , one helpful thing I have found is to gargle clean and rinse after eating to try to prevent whatever I have just eaten aggravating my mouth and throat.
Are you on any antihistamines to combat allergic reactions?
Have the equivalent of a sufferers good day , everyone
Lol We are all stuck in the same alternate universe full of daft doctors
I met an amazing one at the acute eye referral unit at ormskirk hospital the other day. A truly beautiful lady in every way, I wanted to keep her. She is only the second consultant I have met in my 55 years to make it onto my Christmas card list. She is the first fully competent consultant the get on the list along with a senior reg.
I will let you all into a little secret. The only reason I have survived at all is because luck and flaw gave me 3 types of skin steroid cream 18 years ago from a dermatologist who could not figure out what the awful range of strange skin problems I had was ( they have remained, with a bit of a fight at times on my repeat prescription list). I only got referred because my GP at the time was trying to figure out what she had and we were both struggling with similar symptoms and skin things, inc terrible attacks of the trots, painful joints and funny headaches. This combined with trips abroad and the availability of other tablets and medicines plus elderly parents who liked to stockpile, a hubby who is a pain management specialist, I could go on, got me through. Steroid creams, some with antibiotics of different strengths can be used in many ways. Steroid eyedrops are available abroad over the counter! Anyway I am now owning up having ran out of some goodies and I need to get a diagnosis because it's time for the strong stuff. I just hope I get a diagnosis and help soon.
That's appalling, the idea that people are having to use stockpiled creams, foreign visits and luckily prescribed repeat medications without a thorough diagnosis really makes my blood boil.
I am hoping that I hear tomorrow that my GP has referred me for a BD consultation , if not, I will have to return to my friendly dental surgeon, which makes me fume, the idea that I am getting more help for a general medical condition from my dentist than my own GP practice!!
My wish now , in part , is to get a diagnosis and relief from symptoms enough to have the energy to find some way to be able to bring this flaw in practice to light and bring around some change to stop the stress creating way of dealing with patients with complex issues that seems to exist .
People in Britain will assume it is because of an overworked , underfunded NHS system, but reading posts from across the world the same issues with diagnosis is happening in the private health care systems too, this is not a matter of money but attitude and medical approach , something definitely needs to change .
It beggars belief that people are having to resort to such levels. It’s shameful.
I have read with great interest of the need to ‘self medicate’ through desperation and lack of interest on GP’s part.
My dentist and optician have also been more helpful than any of the GP’s at my surgery. As an example: It was only three weeks ago I paid yet another visit to the surgery for a swollen tongue and a hole in it the size of a moon crater. I was drooling, couldn’t eat and felt as If I was driving on a flat tyre most days (still do!). To be fair, she did wince when I stuck out my tongue.
Her diagnosis - ‘menopausal symptoms causing oral problem’! Really? Only, I had a total hysterectomy 20 years ago. Just had my 60th birthday this year- so hardly menopausal!!! I was sent home with a prescription for steroid lozenges - at my request as she was giving me the whole difflam, corsodyl spiel. Non of those helped in the past, because whatever horrible, unknown disease/disorder/syndrome that is now wreaking havoc on my body hadn’t been diagnosed at that point! I knew it was more than just a simple, large mouth ulcer!! I could go on. You already are aware of the rest.
Sending good luck wishes your way -and like TheHud -to everyone else trying to find some relief from these horrid, debilitating symptoms.
Yup all my tests and biopsies also show positive for inflammation. My gastro wanted to diagnose me with IBS, but since doing a diet elimination- i found out i was sucrose intolerant. She was wholly supportive of it too. I think the autoimmune aspect certainly exasperates it. I used to be able to eat desserts, certain fruits etc, and when the BD symptoms started happening, so did the sugar intolerance. So I cut all sugar and honestly, that was the start of the healing process for me. Find a new Rheum, IBS and IBD arent real diagnosis anyways, they are often times symptoms of something bigger.
Keep a list of all foods that irritate you, keep a list of all symptoms. Remember you know your body the best and you have to be your own advocate.
in the meantime, get yourself on an anti inflammatory diet. drink only water, cut all sugar. sugar is inflammatory. Cut processed foods and simple carbs. Eat meat, fats, veggies. It really is that simple.
It’s soooo annoying that doctors can’t diagnose us properly. It’s not like the diagnosis of behcets is great news but just knowing what it is can provide some sense of relief. It took doctors about 3 years to diagnose me. We were only able to do so by doing a genome test to test for the HLA-B51 marker. If all else fails it may be worth doing so yourself. The only issue is convincing a stubborn doctor to let it happen. I ended up printing a instruction form and taking it to him in order for him to know what it would take to do so. I’ll see if I can find the link to the page which you can give ur doctor.
I can talk for hours about how my previous doctor’s stubbornness and incorrect treatment methods have made me suffer over the years but I won’t. Just stay strong and if your doctor isn’t willing to listen, help, and try things out than find a new doctor.
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For example. Many people from the silk road countries settled in the UK and Ireland, in Liverpool, Hull, Scotland. A substantial number of the first settlers those that established some less than desirable businesses came from the UK, to Canada, from the North of the UK. They will have brought all their sailing men and their families, their craftsmen and families, servants, wives, many from silk road counties. Its all a big mix. We are all a big mix of genes and all those genes can surface at any time when a couple of them surface they become dominant. 
Boston area BD specialist
Frustrated 
Food allergies and BD?
