Suspected Behçet: Hi everyone, I am from Turkey... - Behçet's UK

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Suspected Behçet

TheTurk
TheTurk

Hi everyone,

I am from Turkey, the land where Behçet Syndrome is frequently seen. It’s not a rare disease here and therefore a lot of people are labelled as ‘suspected Behçet’.

I have mouth ulcers and DVT (blood clot). Although my Crp, Sedimentation and d-dimer results are normal they want to put me on Imuran as soon as possible.

Also any suggestions for the diet? What to avoid?

Thank you very much.

13 Replies

Hi, there is a lot of discussion about diet and nothing concrete has been decided. There are suspicions that gluten, dairy, sugar and perhaps corn are best avoided. The best thing is to start keeping a record of things you think might have given you mouth ulcers etc. For example I can’t eat capsicum. The other thing is to take photos of lesions to show specialists when you have an appointment. Usually what happens is it takes so long to get an appointment everything is cured by the time you get there. One doctor advised me to create my own medical record of any tests done, photos, dates and what has happened. Hope that helps a bit. Lesley

TheTurk
TheTurk in reply to lesleyg

Dear Lesley,

Thank you very much for your suggestions. I am based near London now. Should Behçet Clinic accept me without referral? Also where can I have my blood chechked regularly (either Nhs or private).

Best regards,

Saffet

lesleyg
lesleyg in reply to TheTurk

Sorry, I’m in Australia, so our system is very different. Perhaps admin can help. Cheers Lesley

Diet definately plays a part - see post below from Lesleyg - I am lactose intolerant and gluten sensitive. Avoid anything anti-inflammatory - medications, creams, food with anti-inflammatory properties. Hope this helps.

TheTurk
TheTurk in reply to sam0511

Should I avoid anything anti-inflammatory or inflammatory stuff?

sam0511
sam0511 in reply to TheTurk

If you feel you have a reaction to anti-inflammatory drugs like asprin then yes. I stopped using ibuprofen etc and had no genital ulcers for two years. Then I had an incident with my horse and was badly bruised. I used arnica topical cream and I had the worst genital ulceration ever. Arnica is a natural anti-inflammatory. It won't cure Behcets obviously but can prevent symptoms. Hope this helps

Hello. This may vary from person to person but here is what I personally have learned over the last 10 yrs of experimenting with food, my body and Behcets. My behcets symptoms usually happen in a certain order - starting with mouth ulcers first and then followed by other inflammation around the body (blood vessels -mostly in eyes & joints - mostly in wrists and ankles) or blood clots. I have found that if I can keep the mouth ulcers away then usually that leads to my other symptoms staying away as well.

Heres what I personally found I HAVE to avoid:

1. ALL SUGAR. This is a big one for me It does not matter if it is a candy bar / processed sugar or natural sugars found in fruit. It will be like clockwork that if I have sugar I can guarantee that 1 to 2 days afterward I will have mouth ulcers.

2. Caffeine. Same thing usually triggers mouth ulcers and or decreased vision due to inflammation of blood vessels in eyes.

3. Dairy. Same effects as caffeine mouth ulcers and eye inflammation.

3. Eggs. cause mouth ulcers

4. Gluten. This one I can play with a little bit and is not as curtail. However I have found I feel the best overall and more healthy on a gluten free diet.

TheTurk
TheTurk in reply to amtrose

Thank you so much amtrose for the detailed information. Sugar must be hard.

Hi; for diet, plant based diet non-dairy/alternative milks, yogurts, Gluten Free...do research NEEM Leaves Only (no root, or seed or bark) - the NEEm is known to cure B.D. related bacteria as Neem is so bitter - no insects go near the tree, it purifies the blood...please search my posts here, I posted this information before, you can make aloe vera gel and Neem Leaves grinded paste, you can consume it 1/2 tsp. few times a week, and also use the mix for mouth ulcers to brush with it, and rub it on before going to bed, it will heal overnight, any sores...NEEM is very effective for B.D. and Malaria is proven to be cured with NEEM...but you cannot overdue NEEM, as it is toxic, yet necessary, much like the Imuran medication...we have to have it...same with NEEM, but learn before you use it...My son has Neuro Behcets Now, as doctors from Canada not know the disease, when he had symptoms, I rearched as his mother a lot on the internet, and doctors did not understand, so we are very devastated parents now, as our son 29 years old has dysartheria, and blind spot in left eye and righ hand motor skills shaking arm...paranchymal/Neuro B.D. brain/stem pons lesions slowly improving...we sent his medical file to Turkey, Dr. Gulsen Akmar Demir Istanbul Neurologist. She suggested we see Dr. Gul Ahmet, Rheum. and Dr. Ilk Noor, Eye Specialist her colleagues...she feels that in Canada our son has the right treatment, but she would discuss his medication further if we decided to see her...we wish to go there very much in Istanbul...I apprecaite if you could please tell me what is the cost like to see these specialists in Turkey for medical evaulation? Hotel cost? Any suggestions apprecaited much, since you are from there...can you please note my email Sghuttora@shaw.ca - if you could write to me about Turkey doctors costs, and hotels costs, what we can expect, I appreciate it very much. She has reviewed his MRI we sent, and she feels he can relapse...he has severe complication of B.D. in Neuro now..with right side of brain blood flow slow..we are worried, and any kind suggestion, I apprecaite fromyou as you know best... in Lodon, I am sure admin here can fill you..but I think you can self-refer to the Behcets Society here, and they can refer you to the Centres perhaps? any doctor can refere you the the London BD centres...I hope to hear from, very nice to hear from you , hope this is helpful...Our son is genetically from North India, so our genetics are the same silkroad...

TheTurk
TheTurk in reply to Ashveer

Hi Ashveer. Thank you very much for the information on NEEM Leaves. As Turkish lira has devaluated recently costs won't be problem. Private doctors are about 70£ for first consultation but of course it depends from doctor to doctor. MRI and other blood tests may cost more. In total you may expect to spend around 3.000£ which is around 24.000TL or 4.000$. Will get in touch with you from the e-mail you provided. All the best for your son.

Ashveer
Ashveer in reply to TheTurk

Thank you for your kind reply and your email, I will write to you further about visiting Turkey... I hope that all here can benefit from this article research, as I think this Neem could be helpful to us....ncbi.nlm.nih.gov/pmc/articl...

WIll reply to you...

Hi in my personal journey I have found walnuts & potato's to cause ulcer's and as you get to know people with this disease like lesleyg mentions everyone is different and it is important to log your experiences as she has done. I have followed her advice and since doing so the Specialist have found it much easier to treat me too. Good luck TheTurk I hope you find the right physician for you. I suggest that you look up the local support group for Behcet in the area where you stay in the UK as there are groups around

TheTurk
TheTurk in reply to Zuzu798

Thank you very much Zuzu798.

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