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Behçet's UK
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controlling diet might help

I had uveitis , joint pain, and severe mouth ulcers. My sympyoms improved a lot after I tried gluten free, and salicylate free diet. By any chance i eat any nuts or undercooked veges or fruits i get mouth ulcers immediately even now .but by controlling diet I am ok . I am also diagonised with tree and grass pollen allergy recently which makes me sneeze terribly in spring. May be there is a link for both behcets and allergies as both are auto immune. I strongly believe that behcets is caused by sudden food intolerences developed by our bodies may be due to age or strees or diet or any infections or altogether at once .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.

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So have mine, big help.

Nuts, seeds and raw foods always a no no because of IBS.

I stopped SLS toothpaste about 6 years go, gluten about 8 months ago fully, I also take anti hists now and have cut out fruit mostly by 6 months ago.

Unfortunately I have been told it's one of the reasons its unlikely I have BD.

You just can't win. The trouble is I am just not prepared to go back to having a mouth that looks like an advanced stage of cancer, its bad enough without aggravating it. Not to mention the explosive galloping trotts, massive flares etc. Granted I probably do have a load more things going on but I can't become that bad again. 8 years ago I genuinely thought I was dying of cancer my tongue and throat were that bad. Until I discovered my skin steroid cream worked in my mouth, then removing SLS helped too, then a diet of exclusion and so on to now.

I am too old anyway to get a BD diagnosis and there is no way they will give me the meds so why torture myself.

Sorry just having a moan. Moral of the moan, if you are not diagnosed yet, don't try to help yourself get better :(

:(

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TheHud you must moan all you like it does help to get things out of your system :-)

May I ask what antihistamines are you taking and dose please? I was with my consultant rheumatologist on Monday having a review, started Azathioprine just over 12 weeks ago and had a blip 7 weeks with bloods (wbc and neutrophils) and taken off for 5 day which created massive flare which I am still trying to shake off... I understand the protocol when this happens but they need to review what is likely to trigger in patients what stopping immediately like this.

Anyway, I chose to request copies of my weekly blood tests from my GP and I have been entering them on to a spreadsheet each week and included blood test carried before starting Azathioprine, the spreadsheet helped to illustrate my wbc and neutrophils have been within range every week other than the blip week which was incidentally taken 3 days after having gadolinium contrast for a head MRI

... Consultation nor GP agree the gadolinium contrast created the issue with my bloods but I do think differently as nothing else has been a problem, I digress. I took the spreadsheet to my appointment and asked why the Eosinophils are frequently out of the normal range and yet this is not picked up as a problem by anyone, she said she was happy with the Eosinophils levels even when outside of the range, so I asked her why my blood frequently shows slight issues with eosinophils and she said this could be caused through allergy and if it got any worse then they would need to investigate. I have thought more about this and wondered why on some weeks my eosinophils count is in the normal range and other weeks it's not and think it's one worth mentioning here and two worth me monitoring my food each week especially the day of and day before blood tests.

Which leads me on to say I have been having issues with sinus mucus for quite a while its not bad but I feel this may be contributing to my head pressure and brain fog / muzzy head and a short while ago prior to starting Azathioprine I carried out a small trial on myself having half a antihistamine a day I thought it helped but came off them around 4 weeks later when I discovered the one I wss taking were the addictive type but now I am considering starting again especially to see if the eosinophils count changes since this is also associated with allergies and there is a mention of sinus etc in the helpful article by the Mayo clinic about Eosinophils that also mentions auto immune etc:

mayoclinic.org/symptoms/eos...

I aso note some research carried out on Eosinophils and Behcet's which in interesting in seeing the blood ranges reported in BD patients...

I did previously ask the consultant could I take antihistamines with Azathioprine and she confirmed that I can.

Thanks, Gillian

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Thanks GillianTS

I take ranitadine (H2 blocker) up to a max of 300mg in 75mg but as long as I avoid naughty foods I can keep it at 75mg. When the really bad pains in my upper tummy/chest start along with head pain, nasal drip, hungover head gets worse etc I increase it along with loratadine (H1 blocker) which I only take 10mg at bed time normally but will take upto 30mg a day if needed. I bump up the loratadine when the mucus and drip feels like its choking me.

But the good thing about these is you can take as needed. There are other H1 blockers and its finding the right one for you. Some focus on skin and gut, or just one thing. I wanted skin and gut because at night I get the terrible itchy skin thing and my tum will often kick off with the small furry animal gnawing at it.

I am pretty certain my gut it wrecked, hence so many things causing pain and problems including the severe attacks that can only be ulcer related and respond to the antihistamines, high dose with pepto bysmol and nil by mouth apart from isotonic water.

I recently got a full copy of my medical notes and I am still working through them making sense. Trying to work this out myself. Back in 2003 I had terrible tummy problems for months and had various tests, thats when the ranitadine was introduced, eosphilia, neutrophilia, WBC, platelets, CRP the usual and IgG IgE tested etc. All high out. It was determined I had a problem but it eased and it was known I had RA and IBS so it was sort of upgraded to IBD but I was not aware of this. I worked long hours, had a young family etc. 2005 I was really ill by now and my GP was running lots of tests. I became too ill to work and by 2006 too ill to be bothered going in for a number of appointments I was called in for apparently but I don't remember. Then I left work and we moved GPs. The test results that she carried out show coeliac and severe folate B12 deficiency, amongst other things, and when I was tranfered she made a note to new GP. This was never acted on. My next full blood test again showed the deficiencies but were not acted on nor was the IgA results. I only got the deficiencies dealt with in 2015. In all that time my GP laughed when I said do you think I have an absorption issue, my nails, beaus lines, skin, allsorts. Being fat apparently makes that impossible. Well it does not! Apparently 33% of all coeliacs are obese and malnourished. their bodies go into preservation mode and they cannot lose weight because their systems are so badly damaged nothing can be taken in. Advanced damage includes;

neuropathy inc deep white matter on MRI and peripheral tingling and lose of use etc

Skin lesions, yes very similar to many we see with other immune conditions

Mouth ulcers and other problems

Joint pain and inflammation

Ataxia, syncope, dysautonomia, headaches, gait problems, muscle problems.. I could go on

Basically years of elevated immune and inflammatory action and malnourishment.

Some can be fixed, the nerve damage can't.

So antihistamines and anything that can help a damaged system in any way I recon is worth a try and certainly find the triggers.

I have accepted I am not going to get any particular medical help, especially now my BP seems to have gone loopy too, my age was always going to make it a shot in the dark.

Of course all of this does not mean I do not have BD, after all BD is an end result, or beginning of an immune/inflammatory response out of control for whatever reason, no one knows.

Keep on fighting and who knows, maybe total exclusion of all triggers is the best way, with a bit of help from an antihist or two when we are naughty ;)

Keep us posted please :)

xxxx

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Thank you I will have a look at whats availble and look at doing another trial to see if this helps with some of the issues Azathioprine does not seem to be helping with and at the same time watch how my blood reacts.

I know it's very very hard to get diagnosed mine was not until April 2017 and it's taken decades to get here I'm now in my 50's every time genital and oral ulcers were mentioned by me nobody could give me an answer and simply implied I must suffer with stress a lot... I still don't think some of the people I see understand that because I don't appear to have an eye issue how can I have Behcet's, they had not yet to arrange to check my eyes and now the consultant is sending me to ophthalmologist to get them checked... why do some hospitals go through things piecemeal, we have to fight for everything and yet they see us for a fleeting visit out of our lives and we are left to deal with the rest...

Take care and continue to keep on as steady a path as you can, you know TheHud it's never too late :-)

Gillian x

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Hi Gillian

keep everything crossed I am doing the gluten challenge to try and activate some antibodies the TTG type seeing as I am IgA deficient. Now agreed. The problem is my reactions to gluten are so severe and not just gut based, thats bad enough, I don't know how its going to work. Plus it means eating the stuff and I need to eat 10g aday to get some damage going. I don't eat enough of anything bulk wise looking at gluten to do that lol. Of course given I am IgA deficient I still may not get a result but at least my new GP is listening. He has sent me to cardiology too :(

I am only doing 12 days it should be 6 weeks but that would be too risky.

Now what to have for breakfast! I don't normally eat anything until 12.15 and I am feeling icky thinking about food. Funny how when you get what you long (hot buttered toast, biscuits for its no longer what you want. I am thinking of a couple of my gluten free crackers for lunch with soft cheese on ;)

X

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I control what I eat. I use Greenpeople toothpaste totally natural eat only organic veg etc and meat. Also our water comes from a spring. We have a small holding so can do this. I take a veg linseed/flax oil capsule and a vitamin D tablet a day as I am deficient in vitamin D. I also take a teaspoon of Manuka honey a day in boiled water this helps the irritation in my throat. My ulcers have cleared up very rarely have them any more. Certain foods make my joint pain worst and give me IBS symptoms. But now I know what works and what doesn’t but this is always changing. I use nothing on my skin or hair that isn’t organic so no irritation. More expensive but worth going without something’s. We never eat processed food either. This works for me but we are all very different. I am on no medication as I feel that things are controlled sufficiently with what I am doing. My view is what medicines you put in has to come out in some shape or form usually that means more problems. Xx

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even I think the same . I was on steroids for some time and was scared to go further on immune suppresents, which will cause more harm in another way s. so I tried controlling diet which worked . Thanks to googling and many posts by people and some research papers written by some doctors which actually gave me an idea of doubting food as the cause. Still I get mouth ulcers ocassionally becoz lectins, salicylates r there in almost 80% of foods, but cooking properly helps in eating some of them. No tea , no coffee, no nuts , no raw veges and fruits, no eating processed food and no eating out side home , eating only home cooked food prepared by me . It is difficult to live this way but felt more worth than pain and suffering and harmful meds . hope there is more research to give more relief for people around to come out of this.

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What number Manuka honey are you using please?

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I am taking 40 at the moment just started trying working well. Going back to food sometimes it’s just a couple of things being removed from diet that helps. I had to stop drinking coffee and now tea. But I have just starting trying Tregothnan Tea which is grown in Cornwall and has no tannins in it. So far I can have a cup without it upsetting the system. All the best

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Thank you that's good I will start to use this And thank you for sharing I was also interested in the tea, I am currently trying to remove coffee from my life in particular instant this has a bad affect on my bladder I also feels it is a big irritant.

Thanks, Gillian

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yes, I agree with everything in your post, my son same allergy prone, and sick with food vomit, while travelling, and now later in life he has Behcets....they are all related that trigger the Behcets Syndrome, Strepcoccocus...and Herpes virus, my son in small time in daycare developed impetigo...I believe that was to weaken his immune system, later in lfie, he got sicker and sicker and now Behcets in adult life...yes, glueten free does help...

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It's great to read how some people have found relief from BD symptoms by changing their diet and really getting some benefits. Sadly I am not one of them I changed to no refined carbohydrates but not gone down the salicylate diet route yet. I am very interested in the antihistamine process do you use antihistamines?

Thanks for sending in your message it's interesting how each of us tries to cope but more importantly for me and I guess many others is that we continue to share our experiences for the good of this condition and this BD group

Gillian :-)

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i became sucrose intolerant around the time of my first flare at 17. I also started oral contraceptives then too, which also can affect sugar metabolism (surprise surprise)... so I have no idea. Alls I know is that I was able to eat everything I wanted as a kid, no allergies, nothing.... then around 17-18 I slowly become more sucrose intolerant. I thought I had food poisoning for 10 years until 25 when we figured out that it was sucrose. not fructose, not glucose. And yes, all of those sugars occur in fruit naturally, some higher than others. But now that I eat protein, fats and veggies (no beets or carrots or parsnips) I am A-okay. I was able to stop all my meds.

A lot on here has gone salicylic free and has seen results. I personally am not sensitive to that, but then again, I got the sugar one. :P

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