I'm a new member here and was diagnosed with BD in February of this year. I'm Thai and currently live in Thailand. The posts on this site help me feel that I am not alone and have not gone mental. Thank you so much.
My first sign of BD was since 2004 or 2005 during the end of my 12-year stay in the US before moving back to Thailand. However, the progress became very fast after I moved to Singapore in 2008. I moved back to Thailand in 2010. Just as everybody else with BD, I have had my fair share of specialist visits, hospitalizations, and ER visits before this diagnosis.
What is strange about myself and have not found anyone talking about it here is that, in the year 2010, I developed a severe allergic reaction to shrimps and prawns. It will cause abrupt swollen bronchial tubes, and sometimes swollen tongue. Serious inflammation in the eyes as well. My allergist told me to carry an epi-pen for injecting adrenaline into my thigh if I get exposed unexpectedly.
I wonder if anyone else has experienced any developments in food allergies during their BD saga? It could be that it is something else I have, not related to BD. Please share!
Thank you
Kaeo
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Kaeo
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Well, Kaeo - and welcome by the way - my OH is convinced that my condition is made worse when I eat bread. He could be right because years ago, before I was diagnosed, I was suspected of having Crohn's disease, which is, of course, linked to an intolerance/allergy to wheat.
When I went to see my rheumy at the Aintree centre and showed him some pictures of the nasty very red and swollen patches I am having mostly on my torso under my left breast but it keeps spreading and is now about the size of a dinner plate and also behind my left ear, he is refering me to a dermatologist to check for yeast infections.
Apparantly it is not the usual candida yeasy that usual shows with things like thrush but something called a Bakers Yeast Allergy which is triggered by the yeast used in making bread and beers and subsequently things like Marmite and Vegemite.
Because the appointment may take a coupe of months to come through, I decided to have a look on the internet to see if I could find out any more info and maybe get a head start at trying to cut out certain foods to see if made any difference. I have only been looking for a couple of days so far but I found this link written by a woman who I think writes receipes but seems to know a bit about the Bakers Yeast Allergy.
The auto link doesn't work properly but if you type in : mrsedssresearchandrecipes.blogspot.co.uk
When you get the main page up there will be a search box in the top left corner so type in:
'bakers yeast allergy' and you get a whole run down of th ways it can affect us and BD is stated on the page.
Would you please be so kind as to read it and let me know what you think hun ?
It's so random, but in the second half of 2012, prior to my diagnosis, my joint problems developed very rapidly and also to the largest joints in my body, the hip joints, rather than starting in smaller joints. This only happened only after I started taking Betaglucan supplements. Betaglucan that I took was derived from Baker's Yeast.
Thanks for this article. I will print it out and bring it to my Rhumy as she always wondered why my joint problems surfaced with the hips and I rapidly developed fluids in both hip joints prior to having other joint problems.
I meant to say that this could be relevant to all of us of course. I only asked our Di specifically because she mentioned her OH thinking she got worse with bread. Well maybe he is sort of half right but it may be the yeast and not the wheat ? I look forward to what Di might make of it all when she has read the article herself as she is pretty knowledgeable on these things and I am certainly not. LOL.
Please read the article yourselves and give some feedback on what you think.
It could be of specific interest to anyone who thought they might have a wheat intolerance and maybe never got positive results to the tests for things like crohns in the past. Maybe we should all have tests for this bakers yeast allergy or to see if we have the specific markers that are mentioned in the article.
My instant desire first thing every morning is to have slices of whole meal bread with marmite which turns out could be a timebomb for me ! Can't wait to see how this one pans out LOL.
I know you only asked Di to read the article. However, the term bakers yeast struck me as I had been so confident that the betaglucan supplement that I took had something to do with the acceleration of the symptoms I had. It also felt very potent to me when I was on it.
I read the article. Very interesting indeed. Now I wonder where in Thailand I could possibly get a test for ASCA. I'm very curious to know. It's also a good thing you mentioned this because I'm telling my mom to get off that supplement now. thank you once again!
I've got some pics of my red swollen patches - they were treated as thrush and didn't heal. Mostly under my right breast and under my tummy. This is very interesting cos if the OH is vindicated I will have to eat poo for weeks!
Well written and researched and very very interesting. I know from my sons' multiple food intolerances and allergies when they were little that we tend to crave the foods that do us harm For instance, number one son, who has a true milk allergy, used to drink four pints of milk a day at age 4! He cannot tolerate even a drop of milk.
So - your toast and marmite, which is also one of my cravings, is indicative that you have a problem with one or more of the ingredients. I can never eat just one slice of bread either and I eat it dry straight out of the pack. I had to give my breadmaker away because I was eating whole loaves at a time. Bread has alwyas made me very bloated and the OH says it puts me in a foul and nasty mood - he should know I suppose.
So, what do we do with this info then - go on one of the diets suggested or what?
Well I'm not really sure where to go with this one ladies !
I have tried to post my pictures but they are too complicated and make the file far too big for this system to accept so sorry there. They sound so much like yours Di and in the same places. Other typical fungal creams don't work.
It seems that once again we have all come out dressed in our whites and pads and someone has chucked us a rugby ball !
I think you have a head start on me Kaeo hun as you already know you have been taking the betaglucan supplement and are aware now of the reaction it has on you. Well done you ! At least you have something very definate to bring in front of your expert now as evidence. Thanks for telling us about it hun. mwah !
As for us Di, I think because mine is very active at the moment I am gonna try to start cutting back (or out completely if I feel brave enough) the very thing I crave the most which is marmite and wholemeal bread. I always eat the wholemeal bread every day without fail as I had it drummed into me that I needed to have it becasue of it's slow release carbohydrate function in diabetes. Like you, it is almost like a 'fix' that I needed everyday and can't stop eating.
I don't think I can face life without bread ! (sad but very true I'm afraid) so I have been digging around looking for other clues as to what to do instead and found that we can make our own type of bread at home quite simply which excludes the use of the yeast. The recipe I found is as follows:
measurements : 8oz cup = 240ml and teaspoon = 5ml
METHOD:
3 Cups whole wheat flour (pref stone ground)
4 tsps baking powder.
1 tsp salt (pref sea salt)
1 and 1/2 cup of liquid (either rice milk, soya milk or basically any liquid including water depending on what flavour bread you want so maybe fruit juice if making a fruit loaf.)
1/4 cup of liquid fat (olive oil, rapeseed oil, vegetable oil or any favourite you might have.)
Mix the dry ingredients together in a bowl. ( do not sift the flour )
Mix the liquids and add to the dry ingredients until there is no dry flour showing. (you may have to slightly vary the amount depending on how the flour mixture comes together)
Dough must be moist but not sticky.
Shape with oiled hands onto a baking sheet or bread tin and bake for 40 mins @ 400F/200C in the middle of the oven.
Ensure bread is fully cold before cutting as it doesn't cut well hot.
Cut a cross in the tope to stop the dough splitting and sprinkle with anything you fancy like sesame seeds, poppy seeds or herbs.
Bearing in mind that I have only just found this recipe and haven't tried it out yet and there may be many more out there for us to try.........nothing ventured and all that ?
My other half is busy making soda bread as we speak which also has no yeast in it.
This is gonna be my individual starting point to see what reactions I get before my appointment comes through. I will of course, keep you all updated of the results.
What about you Di....are you going to try out recipies or just present our findings to the med experts and see what they have to say ? Do you reckon we might all need to have this blood test that shows the required markers which don't show by taking the skin prick test ?
Any feedback will be very welcome from anyone who knows anything about this revelation or what to do next for the best as I'm really floundering in the dark here and looking for a light to aim at.
tootles x
ps If your OH is right about the bread but not the wheat side of it, I hope Poo isn't on your list of ingredients Di ! good luck everyone !
Mine is also very active - so I'll join you. I'll do a bit of research into diets tomorrow and I'll try the bread recipe. I can't live without bread either.
Good find old chap. I got an 'what have I been telling you for years' but that's all. So far...
Hi Kaeo I was trying to be very clever and type in Thai "welcome to our group" - have given up - just as well your English is so good.
Have been reading everything above with interest and think you are all on to something. Do any of you remember the Sean Connery movie Medicine Man? Really good movie - he thought the medicine was in a flower, however it was in an ant that fed off the flower (if you think I've got a good memory I just looked it up).
Anyway I've always suspected the gluten in bread but couldn't bring myself to give it up without more proof. (What's more gluten as a whole is very hard to give up - I went off it for a year). Am definitely going to try giving up yeast though. One thing I have read though - if you go totally off a substance you have an intolerance to (as opposed to an allergy) you could have a bad reaction if you ingest some (help me out here Di?)
Interesting that we should crave the things that are bad for us - does that apply to chocolate? ??
Kaeo - there is one thing that I have been wondering (and I suppose have all the scientists). Behcets Disease has a very high incidence in Japan and China (as well as the Mediterranean). I wonder why that is? Diet wise if we are on the right track do they eat a lot of bakers yeast or something similar? I did notice on one elimination diet fungi such as mushrooms should also be avoided.
Thinking of you all no time to proof read this - dinner has arrived!
This is another of my craving foods and I often buy a punnet and eat them raw. I always put them in salads and my OH has heaps of them either steamed or (if he got his own way fried) which he puts in virtually all our meals.
Oh heck ........another thing I am going to miss dreadfully and I don't suppose there is a way of substituting what nature makes is there ? I will try cutting them out at some stage and see if they make any difference once I start whittling down certain things that contain the yeast to cut out. I will research what it is in mushrooms first as it might be a natural sort of yeast from the same group or something. Any education is a plus ! I wonder if there is a variation of each type of myshroom with this content and maybe some are worse than others. We need to find a mushroom expert on line here me thinks. LOL.
thanks for giving us this tip Les hun. Hope you are doing okay in hospital and not feeling too ghastly ? big hugs xx
Thanks so much Lesley, both for your insightful reply and your attempt to greet me in Thai. (*^_^*)
I am of Chinese descent... I'd say more than 90% of my blood is Chinese. I have no idea why this silk road disease is much more present in the Far East. Even that, BD is still considered a very rare disease here in Thailand.
I don't think food allergies, be it gluten or yeast or anything else, would be a "necessary" condition for BD. It could be something else at play. Given that BD and autoimmune disease are a form of immune systems gone nuts, it is perhaps not unusual for people with these diseases to have food intolerance or allergies of some sort.
However, based on my quick research on food that contains yeast, I found that all fermented food would consist of some kinds of yeasts, but mostly they are well tolerated by normal population. Coffee also has to go through some fermentation as well. Asian food contains a lot of fermented ingredients. Tofu is also fermented. Most sauces in Japan, China and Thailand are fermented. In fact, sauces and condiments in Asian cuisines are made from fermented products.
Although I have never done any proper elimination diet, I have long noticed that my immune system and allergies start to behave so whacky when I'm in a very moldy environment, not with just food. I never paid attention to when I eat all sorts of mushrooms, which are my favorite ingredients for both western and Thai food. Here are some examples:
When I was living in a very old carpeted apartment in Chicago harsh winter, the first sign of spring (some heat and humidity) before Spring actually started, caused me to sneeze to the point where doctors didn't know what to give me as antihistamine. Once I got rid of the carpet which was extremely moldy underneath, I got better immediately.
When I moved to Singapore, which is a very humid place, I stayed in a room with moldy walls. The antihistamine drugs stopped working again. And here in Thailand, my allergies are at peak during the rainy season and my allergist told me to tumble dry my blankets and pillows regularly. That seemed to help.
I really should talk to my allergist and my rhumy about this again.
Hi Kaeo - what you have said makes a lot of sense. The specialists who have treated me have come up with a combination of comments:
Not necessarily in order:
1 It is coming from an inflamed bowel
2 There is a genetic predisposition there waiting for a trigger
Have always wondered why they didn't try to find out about what was causing the inflammation but perhaps it is too many things in too many people, and we all have to try our own elimination thing.
Will try to eliminate fermented products, didn't think about coffee but had been to Guatemala and seen it done! Do you know if it is the same for tea?
I'm living in a semi-humid part of Australia so mould can be a problem. Fortunately I don't a have carpets - lovely polished boards!
The lesions I had as an adult, all over my upper back, healed up after I gave up coffee (I was doing an elimination diet...the one in "Friendly Foods" Royal Prince Alfred Hosp, Sydney, Dr Loblay, Anne Swain et al......under the supervision of another dietitian & my Immuno ) No-one ever mentioned ?Behcet's. It is only now from my reading, that I have made the connection in my head & will bring it up with the next Immuno Prof I am going to see.
I also feel better if I don't eat bread & never connected it with the yeast but that makes a whole lot of sense too...so thanks for that idea. I made myself very sick about 6 mths ago trying to make home-made kefir...(what was I thinking!!!)...anyway I left some out to see what it would grow & it grew a huge overgrowth of yeast...ughhh! I like poisoned myself with this stuff!!!
Soon after that I caught that stomach virus that was sweeping the world. Not good!
Eating eggplant swelled a nodule on one of the arthritic joints at base of my L thumb. Only learnt about Behcet's & tendon nodules recently (thanks Lesley & all here!!!).
My Immuno thinks I have a Connective Tissue Disorder. So do I. However it is still a mystery which one. Extreme allergies to food & environment is a feature of Loeys-Dietz Syndrome, so I'm looking into that. Anecdotally I have noticed a lot of Ehlers-Danlos Syndrome people also have a lot of food & environmental allergies going on. Very often it's "natural" chemicals in food too...not just additives. Many have reactions to drugs & other chemicals.
So who knows? There may be a connection between these types of disorders & BD....but I think it's an area still being studied.
You may find it worthwhile looking into any inherited Connective Tissue Disorders...I'm currently doing this...but the testing is way expensive...but getting cheaper. For example it's about $3000 to test for FBN1 mutations (Marfan), TGFBR1 & TGFBR2 (Loeys-Dietz)......and that is just a few. Genetic clinics at major teaching hospitals can help...but the one I saw was not much chop LOL. A lot of these mutations ARE tied into the Immune System & wound healing.
So you've got BD or possible BD? Earlier, my first rhumy put me in the "Unclassified" Connective Tissue Disorder (UCTD) group, and then after some time, my new rhumy and a dermatologist confirmed I have BD after I had another minor episode of skin lesions with the characteristics fitting BD lesions best. (I have limited mouth ulcers, which, although happen more than 3 times a year, but they are rarely severe).
Those tests you mentioned sound very expensive. I know a high-end holistic medicine place here in Thailand. I plan to visit them soon and will see whether they have these tests available.
Thanks so much. I must say I love this site and the supportive people here!
My soon to be husband has become very allergic to shellfish (swollen tongue, throat, etc) recently and he does not have Behcets Disease. It is a recent thing, and so I think anyone can develop an allergy, not just us!
I am reasonably slim, but used to have a prominent stomach and a Chinese doctor immediately told me, without any examination, and in a general conversation, that it was the yeast or perhaps even just the wheat in the flour which caused it. He was right, because now I limit myself to only one slice of soda bread (no yeast, you see) and my stomach shrunk quite quickly. I do not usually drink beer, but on the odd occasion when I have, my stomach blows up like a balloon, and I do not like yeast spreads such as Marmite. I also restrict other foods containing wheat. I can buy gluten-free bread easily, but have not tried it yet. Has anyone else done this?
It is nice to know that this world-wide blog can help people all over the world.
I only eat wheat and gluten free products . I find that I can manage my BD better and my flare ups are seeming to be getting less frequent now. I also have a HUGE tummy that is very painful and I look like I'm just about to give birth if I eat "normal wheat products". My whole tummy is distended and it gives me very bad pains in my back and chest and I feel like I can't breathe because of the distension.
The specialist food products are very expensive so I tend to divide the bread into 4 equal portions and freeze at least 2 of them .
Hi Sue and everyone else. I often have a distended stomach, especially when I'm not well. I love vegemite and also coffee (but have been slowly switching to tea). I believe the book Ausbehcets mentioned is well worth the money - about $40. It was ground breaking at the time and very easy to read. Must get it out again.
Cheers Lesley
Hi,
I have intolerance to wheat and dairy. I can cheat my body now and again and have a sandwich if I am out and there is no wheat free alternative but can't tolerate dairy at all. From colonoscopies that I have had done in the past I get ulcers and inflammation round my terminal ilium. I have been told that that is the part of the intestines that food gets digested into to blood stream and is more than likely the reason I cannot tolerate dairy or wheat. A few years ago I had to go on a medical liquid diet and could only have prescription food supplement drinks. I initially had Ensure but am now taking Nestlé Resource ones as a top up to a normal diet. All be it free of wheat and dairy. After 12 weeks on the liquid diet I had to introduce foods one at a time to see if I had any reaction to it. Dairy was a total no no! Excuse the details but basically within 10 mins of drinking a glass of milk I was in the loo. I tried again a number of times but unfortunately had the same reaction. Wheat has the same effect if I eat bread or pasta too often. There are more food outlets that cater for wheat intolerance now so it is a bit easier to get safe food when out and about. M&S have wheat free sandwiches in their cafe's. Sometimes my body doesn't digest apples, pears or oranges properly either but and I find myself rushing off to the loo. Mushrooms and raw onions are also a no no.
It was hard doing a liquid diet for 12 weeks especially as I was initially told it would be for 4 weeks. Looking back now at least I have identified foods that my body doesn't like and so I can avoid them.
It is interesting to hear other people's experiences too. BD really does effect numerous body systems. C x x
• in reply to
Hi . EVERYTHING you write here in your blog sounds just like me !!
I cant eat apples either or pineapple ,strawberries, pears, bananas ,grapes, and coconut !!
I also have to just trial and error what I eat and normally don't eat out or take something with me to eat in the car.
Onions are a funny thing tho sometimes I can tolerate a little . Do you notice your mouth ulcers get worse with certain food when eaten?
Food even makes my right hand swell up and get so painful that for a long time with my mouth ulcers and tummy probs I was only eating gluten free porridge made with soya milk or rice milk!!!
I lost a lot of weight and looked really ill but it was a process that I had to go through to establish what foods my body could now tolerate .
Dairy is a definite no no for me also. I prefer Morrisons unsweetened soya (as they use apple to sweeten) and tend to bulk buy -----just in case -----my husband thinks its hysterical that I think Morrisons will run out!!!
Corn pasta is lovely and as long as I don't eat too much tomato sauces I can cope.
Food label reading is a must and a nightmare if I forget my glasses ( my eyesight with BD fluctuates so much LOL)
butterfly_ xxx
• in reply to
Your so not alone. It is a nightmare having to read ingredients on everything. My suitcase gets weighed down with milk and safe snacks when I go on holiday. I pretty much stick to rice when away to as find potato reheated or kept warm play havoc with me too. I haven't yet been to a hotel abroad that doesn't have rice on the menu. I prefer Tesco or Sainsburys own soya milk as find Alpro leaves an odd taste in my mouth. We don't have a Morrisons near us unfortunately. We do have an Asda a bit further out which has a great free from range. I agree corn pasta is lovely. It is nice and light too so doesn't lay heavy if you know what I mean.
At least these days supermarkets have a better variety of free from products. It is a bit more expensive than non free from but I don't mind paying the extra to know I can enjoy a meal and not suffer.
I can relate to the food intolerances BUT the fermentation is ringing loud warning bells. Nearly 20 years ago now I had a hysterectomy and my health took a nosedive afterwards, the worst thing though was that I became unable to drink alcohol - most notably wine. Just a mouthful of alcohol and my face swells to twice it's size, gets extremely red and extremely sore.
I do wonder if this was perhaps the trigger for my full blown BD. I'd had symptoms since childhood but nothing to send me to the doctor - well, my mum took me for 'growing pains' but the mouth ulcers were dealt with at home using some mixture she made.
Another product that causes me untold problems is soy sauce - fermented!
Oh, yes, damp, soft furnished environments have me reaching for the antihistamines too - moulds I suspect.
Hi Di and everyone (special thanks to Kaeo for starting this thread and maybe getting on to something with the allergies etc).
I've never really enjoyed wine (would prefer a G & T). Some of the wines here can have a high sulphur content, and it doesn't matter about price. I drank one glass once and you would have thought I had been on a bender. Unfortunately had an important job to do the next day which didn't help. Point is I have since told I am allergic to sulphur based medications and ointments. This could include foods as well?
Yes, I would think that's probably the case, Les. I didn't think about the sulphur. It's a good job that g&t is my fave tipple too. That has a slight effect on me but after one glass I'm happy to go with the flow! My wine face doesn't give me that option cos it hurts like hell.
I was going to do a bit of research for you but it looks like an area steeped in controversy and confusion and I thought better of it at 11 o'clock on Sunday evening when himself is snoring fit to rumble the walls. .
I have coeliac disease as well as crohns and bechets, coeliac disease is an auto immune disease so if you suspect that could be an issue its best to get tested as its a lot more than a food intolerance but the best thing is that a gluten free duet controlled it and symptom s ease one of the biggest symptom s of coeliac are mouth ulcers,joint pain,skin rashes as well as the hi symptom s so you can see the overlap.with bechets so it's best to get a blood test if you suspect it as it could go.unnoticed mine was discovered by chance when I was having an endoscope for Crohn s, crohns isn't food related and again the symptom s are so overlapping with BD,that's the problem with auto immune diseases a lot of them present in the same www at making it so difficult for diagnosis x
Sorry for the late response but just caught up on this thread. Spefically relating to Kaeo question about allergic reaction to prawns. I have had the exact same symptoms and just been diagnosed with BD. I suddenly out of the blue became allergic to prawns and shrimps last year when the other symptoms started...at first I thought it was food poisoning but then it started to happen everytime and now I can't go near shrimps (sad as I love then). Secondly, what's with the sneezing, any sort off humidity/mold (moved into an old house) and I'm off, I sneeze so much to the point I have given myself nosebleeds and all the doctors thought it was hayfever.
Both those symptoms you described I've had and I'm wondering if since you've been diagnosed you've had any other symptoms (just wondering if there is anything else I have to look forward to /could control)? Have you been able to eat prawns again, or are they off the menu forever? Not had any problems with bread though 😆
Any information would be great as I find it strangely odd we have had the exact same thing. Thanks
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good luck everyone !
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