I was diagnosed with Behcets in 2018 followed by breast cancer in 2022. (Interesting to note inflammation in biopsy even for that). It was all fairly well controlled but I was not thriving as such and Nov 23 showed a new symptom - eye inflammation. Basically I read about a study in Birmingham where a similiar case was brought under control by diet (see Behcets U.K. AGM 2023) which was one month before I had news of my eyes also being affected. Weighing up long term Aza use effects (inc cancer risk) with diet, it seemed an important option to try. Jan 24 I overhauled. Despite being told to stop reading around basically and take the medication and unfortunately with little knowledge transfer it seemed between centres - 7 months on, here is the story so far:
Used FoodMarble to test after meals and see what was disagreeing with me, 2 weeks of use highlighted the problems, anything processed it would seem, bread, pasta.
Genetic health and wellbeing test - showed vit D deficiency tendency (boosted), coeliac sensitivity - went gluten free
Microbiome test - found IGA secretory levels off the scale as in very high, other typical findings correlating to Behcets study and others on the role of butyrate and short chain fatty acids ie mine lower. Yet to retest but will do after next phase.
Radically changed diet to plant based via deliciously Ella and anti inflammatory. It has managed to get gastro symptoms under much better control.
On 2 subsequent checks my eyes remain clear.
My energy levels and fatigue have improved. Nothing has done this over the years.
My next target is Myota prebiotic supplementation, as per the Behcets study, to see if this further enhances things. Overall target to come off colchicine.
My bloods have all returned well. The London COE I think are somewhat surprised. Whilst they state the risks of not taking Aza, for now, I feel like I’m better understanding my body and getting results. Just to share with others, it’s always good to have options.
The best I’ve ever felt. Be your own case manager, don’t wait for the medics to come up with all the answers. You might find them yourself…
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Of course, I struggled to find the study directly but it is summarised in the Behcets U.K. AGM 2023 online sciencedirect.com/science/a...
You also find if you google microbiome and Behcets more studies come up, if you look more widely for crohns, IBD and colitis, it’s even more recognised.
The whole gut brain link piece seems to be making it out there too.
I used to surf a lot on BD and possible « treatments’’ but my eye issues have been making it difficult to look at computer screen for more than a few minutes.
This is music to my ears!! I had a 24 year wait for diagnosis and had to be my own advocate. Like you I did the food intolerance testing, cut a load of stuff out and reduced inflamation and avoided Medication. Some things have changed though. Whilst I think I was reacting to some foods I can now tolerate them. I was gluten and dairy free for two years but have reintroduced them.
I took vsl#3 probiotic for two months. Then full fat live Greek yogurt and kefir seemed to be OK. Now I eat all dairy.
I eat tonnes of veg. I avoid ultra processed food where possible. I still eat meat but less frequently.
Whilst I thought I was reacting to gluten I think it was actually high blood sugar spikes causing problems. I wore a continuous glucose monitor and could see potato, bread, fruit and pasta etc spiking me really high followed by symptoms. I still eat these foods but in small amounts with fat, protein and fibre to reduce spike. I'm also exercising a lot more. (Glucose sink)
Like you I feel better than I have done in years. The Rhuematologist was quite surprised to see me doing so well.
My current theory is that glucose variability is high in Bechets disease. We are more prone to becoming diabetic even at a normal weight. (Research backed statement). Diabetes causes inflamation in blood vessels!! If our blood sugar is often high then it makes sense to me that this can cause symptoms.
Glucose goddess was a good read and Dr Van tulleken processed people. Both have appeared on Dr Chaterjee podcast and diary of a CEO (I think!!)
incidentally in case anyone was interested. The tests - I found via the company I did cancer gene testing with, also pharmacogenetics.
For the gut issues / eye inflammation piece -
Myogenes - general health and welllbeing
Digestive gases - FoodMarble
Microbiome - Genova (literally saw a Dr Moseley programme as I was looking to do this and this was the name on the report for people he was testing in the programme)
Would be great to share more success stories… is a gastroenterologist perhaps one of the key specialists for Behcets and auto immune conditions?
Thank you for sharing your story, it is really interesting. I totally agree diet definitely triggers things and I too have gastro issues. I have had adhesions in my stomach cut twice and I cannot tolerate gluten, dairy or spicy food. Are you able to say which diets you follow, as I really struggle with what to eat.
I too have scleritis in both eyes and ocular hypertension and my eyes pop every now and again when the pressures go up to 32, so this causes so many problems.
I really hope you continue on your successful path and thank you so much for sharing.
Even if it helps a few people, happy to share. Interesting and reassuring that others believe the same and have had gastro as an element too - gluten def for me, dairy found out seems actually to be ok once gluten out of the way, but primarily I’ve gone anti inflammatory (no specific named diet) and plant based. I w primarily used Deliciously Ella and Bosh! I’ve also had scleritis & raised eye pressure in the past but no cause was identified. I see a gastro now at the end of the year so that will be interesting. Thank you, wishing everyone well on their journeys too.
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