I have noticed that many of us are on Gluten-Free diets. Are there any other big food item monsters out there that aggravate Behçet’s inflammation? Going Gluten-Free was a game changer for me, at least for a while. I definitely felt markedly better on the GF diet within about a week.
Thanks!
Dave
Dave,
This is a lengthy post but I hope it will reinforce your experience that diet considerations are important. Have a look at a previous post by Butterfly regarding Salicylate-intolerance, posted 5 months ago, which has dramatically reduced the occurrence of ulcers.
healthunlocked.com/behcetsu...
In this regard, I cannot help but observe that Behçet’s is called the 'Silk Road Disease'. What has high concentrations of salicylate? Well here are a few (compliments of Anne R Swain from Australia) - allspice, aniseed, black pepper, cardamom, cayenne, celery powder, cinnamon, cloves, cumin, curry powder, dill, fenugreek, garam masala, ginger, liquorice, mace, mint, mustard, oregano, paprika, rosemary, sage, tarragon, turmeric, thyme, wine and cider vinegars. They may not all have originally emanated from that part of the world, but some do!
Perhaps there is a connection. Maybe, a long, long time ago 'something happened' in the development of mankind in some individuals. Who knows, but certainly avoiding salicylate has helped one patient - and there was another who recommend this to Butterfly, but I can't presently locate that post.
At the BSS 2016 AGM and Conference
- this was reported.
"Dr Wallace [from the University of Birmingham] finished by discussing the recent Northern Ireland mapping project, which was partly funded by the BSS and found a higher incidence than in the UK overall. Doctors with BD patients may have been more likely to respond to the letter, but this alone would not account for the high incidence. Dr Wallace speculated that the cluster may have arisen from an immigrant group arriving 100-200 years ago. He hopes that further work will be done to identify the genetic and/or environmental factors involved.
Next, Liying Low, a researcher working with Dr Wallace at the University of Birmingham, presented her PhD Clinical Fellowship proposal. The interaction between gut microbes and the immune response may drive the inflammatory process of BD in genetically predisposed people. Liying proposes to compare the gut microbes of BD patients and healthy volunteers, as well as the immune responses of patients with and without the HLA-B51 gene, and to look at changes in gut microbes after interferon treatment. Anyone willing to volunteer to help with this project can contact her at lowliying@ gmail.com or l.low@bham.ac.uk."
In his presentation to the BSS 2017 Conference, Dr Graham Wallace summarised on his first slide, talking about his Microbiomes research: "Microbial colonisation occurs at birth; Difference between natural birth and C-section; Breastfeeding another important factor for gut microbiome; Microbiomes of children resemble adults/parents by age 3; Immune system develops in response to microbiomes." [..... what your parents (or ancestors) eat .......]
Dr-CJA commented elsewhere on another Health Unlocked post that "I quit meat, dairy, alcohol, citrus, caffeine etc. In fact I quit anything likely to challenge my immune system or build up uric acid in my system. I don't eat processed food typically and prefer to make my own home cooked stuff, I have travelled the world and go to dance classes. I'm off all pills, except occasional pain killers."
Notice caffeine - coffee has high levels of salicylate. If you don't like aspirin, guess what that is high in also!
At the 17th International Behcet's Conference this was reported. "A French group described risk factors for oral ulcers. In addition to factors such as fatigue and stress, several foods were reported as triggers of ulcers. Many of these foods - such as walnuts, peanuts, almonds, pineapple, cheese and lemons - are known to stimulate histamine release. This is an interesting finding that needs further investigation. "
Histamine is a completely different issue to salicylate intollerance of course. So when I saw that International Conference report I did what we all did an 'Googled Histamine', spotted this. Amy Bukhart, MD, RD, posting online, commented that there is not a great deal of consensus on food and histamine.
"Histamine intolerance appears to be more prevalent when there is underlying gastrointestinal dysfunction such as in inflammatory bowel disease, celiac disease, IBS etc. Given the minimal data on actual incidence of histamine intolerance, data on its correlation with other health issues is scant. .....
Food to eat on a low histamine diet; As much as possible eat fresh food; Fresh meat and fish (avoid canned meat and fish); Fresh fruit, except strawberry, citrus; Fresh vegetables, except tomatoes, spinach and cabbage; Grains: rice, corn, millet, oats, sorghum; Oils: Most cooking oils. .... See below for lists of high histamine foods and medications to use with caution if you think histamine intolerance may be an issue for you.
Foods high in histamines: This is controversial as histamine content of food varies depending on duration of storage, ripeness or maturity, cooking and processing. Certain foods may also not be high in histamine yet are high in compounds known as histamine liberators which can trigger similar symptoms by increasing histamine levels. The list below contains commonly accepted high histamine foods/histamine liberators, but this list is by no means exhaustive. Available lists vary and consistent data is hard to find on histamine content of foods. What does seem to be agreed upon is that fermented and aged foods do tend to be some of the biggest culprits: Alcohol: Champagne, red wine, beer, white wine; Fermented or smoked Meats/Fish: Sardine, mackeral, herring, tuna, salami; Pickled or canned foods: Sauerkraut, pickles, relishes, soy sauce; Fermented milk products: Yogurt, kefir, buttermilk; Aged cheeses: Parmesan, Gouda, Swiss, cheddar; Fruit: Dried fruit, strawberries, citrus; Vegetables: Tomatoes and tomato products, spinach; Legumes: Chickpeas, soybeans, peanuts; Other: Cinnamon, chocolate; Grains: Wheat; Histamine releasers: Citrus, papaya, pineapple, nuts, strawberries, egg white, additives; DAO blockers: alcohol, black and green tea."
If you look at some of those foods, Anne R Swain confirms that have high concentrations Salicylate also.
This research paper was published in late 2017. 'Dietary and Nondietary Triggers of Oral Ulcer Recurrences in Behçet's Disease"
Geoffroy Volle, Jean-Baptiste Fraison, Delphine Gobert, Tiphaine Goulenok, Robin Dhote, Olivier Fain, Solange Gonzalez-Chiappe, François Lhote, Thomas Papo, Aurélie Thuillier, Sophie Rivière, Alfred Mahr
First published: 29 August 2017Full publication history DOI: 10.1002/acr.23155
Among the 101 questionnaires distributed, 81 were usable. Among the 81 patients, 96% fulfilled the International Criteria for Behçet's Disease classification criteria, and 53% qualified their OU recurrences during the previous 12 months as very discomforting or discomforting. For the 6 general situations suggested, 50 patients (62%) declared ≥1 as a "sure" trigger of OU recurrences. In both open and closed questions, the most frequent triggers were fatigue/stress (37-47% of patients) and food (32-35%). Among the 24 suggested foods, nuts (48%), pineapple (42%), peanuts (32%), Emmental cheese (30%), almonds (23%), lemons (22%), and other cheeses (21%) were the most frequently reported. The corresponding open question gave consistent findings but with lower frequencies.
So all rather complex and difficult to manage. To see any difference, in either of the aforementioned aspects (histamine/salicylate, or indeed uric acid), one has to 'get the levels' down initially, which could take over a couple of weeks to 'detox the body'.
As I said at the start, somewhat lengthy, but I contend there is ample evidence, even from the above, that what we eat will have an impact on certainly some people with, or prone to, Behçet’s. Not all I grant, but worth investigating, and certainly something that individuals have control upon.
I intend to get the BSS to initiate a coherent set of research into this area, as part of its developing Research Strategy and Research Road Map - not before time frankly, and will hopefully support Dr Wallace's research initiatives. T
Tony,
Thank you for your comprehensive response! I do not seem to be bothered by histamines, but I do see certain salicylate-containing examples that do indeed aggrivate my condition. More research to do.
Best,
Dave
Hi this is interesting, so are you thinking there is a test to check your histamine level or response to these foods?
What is the test for the certain gene called?
I am slowly getting diagnosed for Bechet’s and I’m seeing a rheumatologist 3-818 so I would like to gather any and all information to prepare for this appointment.
Thank you!
Behçet’s disease is associated with the HLA-B51 molecule; has been quoted as ranging from 45 to 60% in many different ethnic groups. But lots of people who have HLA-51B don't get Behçet’s. If that wasn't the case we would probably find a cure PDQ I suspect!
Unfortunately, there is no consensus nor sure test for histamine level or response to foods. There may be different mechanisms at play – one where ingested histamine is the root cause, and another where it is more a symptom of another root cause. To get slightly 'technical' (from the International Society for DAO Deficiency);
"DAO Deficiency is an alteration in the metabolism of food histamine that appears when Diamine Oxidase (DAO) enzyme activity is low, in other words, when for some reason there is a significant deficiency in the functional activity of the main enzyme in the metabolism of histamine.
The imbalance between ingested histamine and the histamine released from the histamine storage cells, and the capacity for histamine degradation, leads to histamine accumulation in plasma and the occurrence of adverse effects on health.
Adverse effects
In healthy people, histamine taken with food is degraded quickly by Diamine Oxidase (DAO) enzyme, but people with low functional DAO activity have the risk of suffering histamine intolerance or food histaminosis.
Unlike food allergy, the occurrence of symptoms or adverse effects is not linked to the intake of specific food; not only can it be related to a wide variety of food with different histamine contents, symptoms can also occur even after the ingestion of products with low histamine levels. This imposed considerable difficulty when establishing a maximum tolerable dose; in fact, there is no clear consensus on this value. [my comment - if the levels are wrong and you eat a low histamine producing food, it may 'push you over the acceptable tolerance level for your body'].
Due to the wide variety of symptoms derived from DAO Deficiency, which represent chronic pathologies with a high prevalence in population, immediate research and advances on its origin and possible treatments are required.
It is not necessary for all symptoms to manifest, although most patients with low functional DAO activity present an average of three of those symptoms, being migraine the prevalent one.
20% of patients experience 1 or 2 of these associated symptoms, 41.3% of patients experience 3 or 4 of these symptoms and 33.8% present more than 5. The most frequent symptoms derived from DAO Deficiency are:
Migraine and other vascular headaches.
Gastrointestinal disorders, especially those associated with irritable bowel syndrome, such as constipation, diarrhea, satiety, flatulence or swollen feeling.
Dermatological disorders such as dry skin, atopy or psoriasis.
Soft-tissue pains usually diagnosed as fibromyalgia
Chronic fatigue
In childhood and adolescence, DAO deficiency has been linked to attention deficit and hyperactivity disorder (ADHD)."
So I think as someone else suggested, keeping a log of what is going on, and experimenting with what you are eating (and other things, like getting too tired and stressing your body) is the only way one will make sense of all this. But, because our bodies are a highly complex system, other things may be going on concurrently that trigger adverse reactions, which are quite unrelated. Unfortunately it is not a 'one-to-one' relationship, but many-to-many. But worth determinedly pursuing to make things as best as you can for yourself - and sharing what works and what doesn't with our 'Behçet’s community'.
T
Is it possible you can email this information? So I can print it..
My email is:
baseball-momma@comcast.net
I’ve made up a binder of my health records and Bechet’s information to take to my doctor appts.
This is interesting TonyWT - I experienced migraine every month which has been attributed to hormones. Behcets is a very complicated disease. I have eye involvement so I would be very reluctant to suggest to my consultant I reduce my medication. However I will be changing my diet but I am not going to let it rule my life or become obsessed about it. Finding your posts has really shed light on this condition, you have obviously spent a great deal of time researching all this. I would like to have a grasp as to what could have triggered my Behcets - probably will never know, I have looked into my genetic past, and the silk route fits. My only concern is for my two daughters. Both are coming to the age where I first started to notice symptoms, although looking back I think I had some signs as a child. Whilst the physical symptoms are challenging enough, it is the eye involvement that has been the worst. I lost useful sight in one eye, but it could so easily have been both had it not been caught in time. I would loath for my daughters to go through the same. Finding your post after your reply to mine has been a breath of fresh air - thanks.
Yep, diet is the biggest difference for me. I've switched to an animal based zerocarb diet and that's helped me ease 99% of my symptoms and allowed me to stop taking all prescription drugs. Check my earlier post: healthunlocked.com/behcetsu...
Going gluten free did help a lot of my symptoms, and also helped find other things I can't tolerate.
Some foods and drinks cause instant symptoms which are easy to identify, such as tea, and tortilla chips, will bring on an instant need to pee, increased urgency and frequency, and can last from a few days to weeks.
Other symptoms take a day or so to come on, and these are harder to identify. But if you keep a good diary you can spot patterns.
cutting all sugars/ processed carbs did it for me. The only carbs i allowed back in, in moderation are portioned potatoes and beans/rice, sometimes plantains. If i flare-or am about to- I go zero carb and get into a ketogenic state for a few days.
i dont eat bread or pasta anymore- and it's made the biggest difference. Im getting off my half dose of colcrys next year because of it.
100% sucrose free and loving it!
I had to go gluten free after being diagnosed coeliac 10 years ago. The one major thing that causes problems for me is caffeine. Now I only drink water, herbal tea and the occasional sugar free sprite.
Sadly, there is an ingredient in coffee that is close enough to gluten to cause a reaction in some people. I still sneak a cup or two every now and then.
drink only water its good at cleaning the system as for food has no colleration with behcets trust me! its inflammation from over active immune system food never caused ur behcets neither is food going to cure you behcets , a lot people claim without evidence of changig diet curing their disease firstly the disease is ever lasting because its in your immune system , secondly you could be vegan or you could just eat only meat thats not going to stop your inflammation no one with behcets has cured their disease by hangig to diet lol and thats fact , no evidence or collected data using behcets patainta an diet has been administrated to change course of disease ir to stop symptoms do not be fooled by misconceptions of others claiming they stopped immune supprassant an changed diet anf stop gettin mouth ulcers or genitil ulcers or joint pain or uveitis or you get the point base your theory with fact not fiction as the mind can play tricks on you then when u get mouth ir genticil ulcer or flare up whilst thinkin the diet was going to help you then you will feel even nore helpless only way to controle symptoms is through immunesuppression and thats fact as of now until a cure created. most those who claim to be of immunesuppressants and using food and herbs to controle symptoms are deceiving newley diagnosed behcets pataints with false theory of no fact and evidence to support their action and are rising false hope for the the treatment of the disease to those newley diagnsied find proffesor of behcets or a specialist to treat you and they would lagh if you tell them that diet changing will solve your disease as i would to lool . many blessings my freinds!
Water has been great for washing all the sugar out of my system and making the ulcers go away faster, that’s for sure. I stopped gluten by trial and error. It was the only thing that helped me gain back stable blood pressure and it got me out of bed after four months of having to lay flat. Have you tried Plaquenil? It stopped most of my mouth ulcers, but did not stop or help genital ulcers. I have had a lot of problems with my eyes focusing and bright light is very painful for me and triggers migraines.
hello i honestly can say since drinking water only i havent had one mouth ulcer i think its the best remedy for ulcers and i advice others to try water only cause it cleans the mouth and system better then most remedys, and to be frank ive cut out diary also for about 6 months now it might be also helping and no suger at all but i eat a mixe diet of meat and vegetables i havent tried that diet , as for genetil ulcers i think only immunesuppressants can deal with that as its inflammation that cant be tammed by food/supplements , and you dot har uveitis do you its good to check with eye doctor to see of theirs any possible inflammation or you could har some vitman diffecientcy its goo to do blood tests on reguler to pinpoint weakness in the body that can contrubute to symptoms this disease is highley complicated to understand an treat its about learning whag triggers flare everyone is so so different cause of the dna also if ur tested positive for the gene the disease is harsher then those who are nagative, i was tested nagative for gene thats linked to behcets so its good to check your gene also many blessings!
Ayman, have you cut any foods out? There has been research about food being triggers, and a lot of us have HLAB51 gene, which comes from Neanderthal man, and research is suggesting this is linked to autoimmune diseases, and may explain why certain people can not tolerate gluten. Google it, there is some interesting stuff.
You talk about immune response, but you can stress the immune system in many ways, including food your body for whatever reason can't tolerate.
yeah i dont eat dairy or suger and drink only water to keep flushing out toxins as its the best remedy for flushing toxins out of the body specially whilst we are on harsh immunesuppressants , and you could be well correct about gluten im not so educated about the link between it and behcets but i got tested nagative for that gene so i was told by the proff that if your positive for the gene then the disease will become harsher and stronger then those that are nagative are you positive for that gene? then maybe gluten free could help im not sure at all, and your correct about stress because its linked to the immune system so i can beleive any type over excitment or depression or anxiety or mood swings can contrubute to symptoms worsening or arising its kinda if messed up cause ower immunsystem is so over active it sees anything as threat even emotions can mess with it , i also have been linking traumatic events leading to the trigger of the disease as it kind of makes sence trauma causes fight or flight so most people with behcets have pinpointed traumatic event before onset of disease this could be life threatning situation or situation where u are helpess or near death experience such as car accident or someone trying to hurt you that causes fight or flight and causes the immjnesystem to go insane as its cofused on the action it has to do !!!! also 97 percent of diseases start from the gut and thats fact , could be from leaky gut or toxins or to much bad bacteria and not enough good bacteria that should be looked by behcets proffessors as its all linked and the gut is basiclly what controled most of what gets inside and out of the body and the proff im seeing even told me that the gut contrubutes to this disease so i was even nore shocked that i was right about the theory of the gutt its all messed up mann!!!
I do not have the gene, but I still have Behçet’s. It is very aggressive as I have had organ damage and the scarring down below is pretty bad. I had sepsis back in 2001 and coma, so if there were ever a trigger, that would be it. I’ve had bad oral ulcers and spontaneous fevers my whole life up to that point, and then the really rough Behçet’s stuff like organ damage started after the coma.
yeah even without the gene its still seriouse tbh, and i know the scaring bellow is just insane as looks like someone shot you with bullet that curved through the skin its pretty F up!! but its about stopping more of them forming through the right immunesuppressants and thats probibly your trigger tbh im sorry about what happend but that must been traumatic to you and most likely tiggerd behcets as we all had trigger and the proff told me the disease only gets activated by trigger!!!! what organs did it damage if you dont mond me asking? i also had few fevers and high tempurture before the onset of it.
My pituitary and hypothalamus were killed and my pancreas is severely damaged. The pancreas still produces insulin, but it does not produce digestive enzymes. I also have digestive problems and urinary nerve issues. Yeah the scarring does look awful. I feel embarrassed about it, but at least the thing hasn’t fallen off. I replace the missing hormones with shots and pills, my digestive system will work properly with pancreatic enzyme replacement and Citracel fiber drink mix.
thats seems like difficult situation but i do hope you recover well and adapt to this as we must learn to adapt!! it just shows u how nasty this disease is with some people its so violent and with others its so mild , keep fighting and hopefully you will be fine !
Thank you! Sure hope so. I will keep at it. Seems like I got the really violent one, but hopefully this new treatment of Humira and Methotrexate will get it under control.
Hi, I’m one of the patients that carried out the Scoping study in Northern Ireland which found over 80 patients making us on par with Japan and we put forward the hypothesis that we felt that the distribution of the numbers being higher in County Antrim and County Down could be related to the Cotton and Linen Industries which has flourished there and the influx of people who settled in Northern Ireland to hep that industry after travelling from Europe. In our regular group over 6 out of 19 are Coeliacs and 2 others have put themselves on a gluten free diet. Of course with an immune disease you can be prone to more immune disease. Some find they are now taking nuts, crisps and tortilla chips out of their diet. Good luck with the diet.
Hi all.
Sorry been away for a while...
Just to update you. ..
Reducing meds...all going well.
Still on salicylate free diet.
(tried to re introduce foods and massive migraine, ulcers etc happened within 30mins!!!)
My immunologist asked me to try to re introduce foods to gage response.
Oh boy ....never again.
Histamines,oxylates and salicylates and gluten dairy always going to be a massive problem for me .
My symptoms for Behcet are vastly improved since following the strict diet.
I will be completely off meds within the next month or two ...my rheumatologist has let me dictate when i feel ready to completely let go of meds ...he is very happy with my progress and amazed by my improvement. .to what it was( I was a mess ..sooo poorly)
I still feel a little scared and apprehensive for my body to go it alone without mycophenolate morfetiel. ..but I will have to try as I will never know unless I try.
I will let you all know when I have taken the plunge ...
I have been in the best of health since I started eating this way...
Everyone around me at work has contracted all the nasty flu bugs and tummy bugs since xmas....I have been immune ...don't know how !!! Lol.
I feel like my old self again..
I only get a behcets problem when I eat something that I shouldn't by mistake.(if I eat out).
Hope you are all keeping well.
I pray that one day we all might get the resolution of health and symptom free life for everyone soon.
With love.
Butterfly xx
Yeah i agree with you. Same case with me my sympyoms improved a lot and i am not on meds now. I tried glutn free, and salicylate free diet. By any chance i eat any nuts or undercooked veges or citrus fruits i get mouth ulcers immediately. I am also diagonised with tree and grass pollen allergy recently which makes me sneeze terribly in spring. i strongly believe that behcets is caused by sudden food intolerences developed by our bodies may be due to age or strees or diet .This is only based on my personal experiance. As of now i am trying to manage this condition by controlling diet and without meds. I am not a blogger but thought it might of some use to any one for opinion. hope there is more research on behcets and people can find cause and eliminate it for relief than living on meds which have side effetcts. THANK YOU. Iam new to this, i font know how to post this , i am clicking reply button. If sny one like it pls post it here.
“If it tastes good, spit it out immediately” seems to be the running theme. I’ve tried to remove salicylates - or at least reduce intake of them. Not much has changed, except for a temporary stop of my Humira and Methotrexate until I get rid of a throat infection. The body pain is back with a vengeance, so I am back up to 3600mg/day of Gabapentin and a steady rotation of Tylenol and Advil. Never a dull moment, I swear! 
WOW Tony WT that was so interesting. I do have BD started at 17, now 45, my daughter 15 and son 14 both have BD. we are all on a gluten free diet. I've also had bowel scopes done as I had terrible bowel issues and they recommended a Salicylate Diet. As it turned out I had eliminated majority of the foods on the list due to bowel trouble, BUT my favorite fruit an Apple a day, was my big NO NO. I have had a much calmer tummy after completely cutting them from my diet. Although I didn't know that about coffee. I thought that helped reduce the inflammation in our head, which in turn helped with our headaches/Migraines.
I had never heard of this so I found a cool chart: dietvsdisease.org/salicylat...
Trigger Factors - food allergies
FREE articles from latest supplement on BD -- Clinical & Experimental Rheumatology
Do you recognize this?
