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Soya allergy – a complex issue…

07/02/2013 by Ruth Holroyd 17 Comments

Soya allergy is one of the top 13 allergens that have to labelled in the UK and until just this year it wasn’t one I was particularly worried about.

Soya is part of the legume family along with dried peas, beans, lentils, peanuts and carob. Interesting to note that I also have an peanut allergy but as far as I am aware, can eat peas, beans and lentils without issue.

Whilst I CAN eat chocolate containing soya lecithin (praise the Lord) and also enjoy gluten free sausages which contain soya flour, I absolutely cannot drink even a drop of soya milk. It’s been a while working this one out. When you have multiple allergies you grow accustomed to recognising the signals and if you know you can eat ‘soya in some things’ you could be excused for assuming that soya was OK.

Pinning down soya milk as the culprit

It has never been a milk to my taste so I never regularly drink it, preferring instead rice, oat and coconut milk. Asthma is something that doesn’t generally bother me too much and is under control but recently it’s been flaring up and inhalers have been useless. Sudden and unexplained asthma attacks, one resulting in a trip to A&E are worrying when the cause it not easily understood.

If you just get asthma for no reason you can’t do very much avoid it happening again.

So it was down to Mr what allergy, the household detective, to work out on a recent skiing trip, that copious amounts of soya milk, which we don’t normally have in our fridge at home, could be at the bottom of the near crippling asthma I was struck down with.

The attacks would start as soon as I got back to the chalet. The mug of tea with soya milk would explain that. But I didn’t suspect the soya milk. In fact I often thought I was drinking rice milk but it transpired that the two cartons in the fridge, one with rice milk and one with soya milk where identical apart from the little words ‘riz’ and ‘soja’ and they were tiny little words on the carton.

The chalet also made me delicious dairy, gluten and nut free cakes, so I tucked into those as well. My asthma got worse. I didn’t suspect the ingredients themselves but I did begin to suspect cross contamination.

After talking to the staff it was clear that they were being extremely careful, so what was causing my asthma? I spent three whole evenings lying in bed desparate for the next breath, on the verge of calling for help but dreading having to do that. In a strange country with a very poor grasp of French I just wanted to stay in the chalet.

Was it the dog in the chalet? Was it their cleaning products? Dust? A plug in air freshener? Was it just the mountain air? Slowly I ruled out each of these possibilities. I would feel a bit better in the morning, choosing rice milk for my cereals and get progressively better all day, out on the slopes in the open air. It was as soon as I got back that it got worse again.

Finally, Mr What allergy took a look in the FreeFrom Fridge – there was a dedicated fridge just for allergy me, but I’ll share more about that in a separate blog post about my skiing holiday experience. It was FULL of soya milk, soya cream, soya margerine, soya yogurt. All of which was being used in my special meals. It was, as he described it, soya city! A term that now has us both laughing like little kids remembering him bursting into our asthma filled bedroom saying, “It’s like soya city down there! Could it be the soya?”

By cutting out the soya I was as right as rain. But where did that come from? Only then did I question why I choose not to have soya milk at home. I remembered then slight tingling in my throat on drinking soya milk and a dreadful hayfever type attack after eating swedish glace icecream, which contains soya. I have grown so used to self avoiding foods that make me feel unwell, that I had unknowingly cut out soya. I had thought that by not avoiding soya flour, soya lecithin etc. in ingredients that I was still consuming some and so I couldn’t possibly be allergic to it.

How wrong I was.

I am pleased to know this though as it explains another serious asthma attack which led to a night in A&E after a friend made a cake for me with soya milk in it. She later admitted that she thought she might have used normal margerine and we put the attack down to that. But dairy doesn’t give me asthma, it effects my skin, in a bad way. Perhaps I should have worked it out back them, but at least I’ve sussed it out now.

My allergy doctor is doing tests to confirm this new one, and so I find that I am STILL on the allergic march.

Foods to avoid if you have a soya allergy

If you have a soya allergy you should avoid:

  • Soya bean
  • Soya protein
  • Soya sauce
  • Soya milk
  • Soya margerine
  • Soya yogurt
  • Unrefined and cold pressed soya oil
  • Oriental products such as Tempeh, Miso, Tofu

Soya lecithin (E322) only causes problems in VERY rare and severe soya allergies so most people are OK with this. It contains hardly any protein, if any, so most people with a soya allergy are OK with it.

PLEASE NOTE: In addition to the above, soya can be hidden in an ingredients list in countries outside the EU as: vegetable stock, vegetable protein, vegetable shortening, vegetable past, textured vegetable protein (TVP), vegetable broth, vegetable gum and vegetable starch.

Ref: Special thanks to my new allergy doctor, Dr J Reed at Oxford for giving me this list of soya free diet information and to Tanya Wright for compiling it.

I don’t think it will affect my diet too much as often, food that’s free from dairy is also freefrom soya, but many of the dairy free alternatives are soya based so it limits things somewhat. I eat very little processed foods anyway but will be monitoring my soya intake to keep check on this new allergy.

I am finally realising that I was in ‘soya denial’, thinking, like my doctor, that I couldn’t possibly be allergic to that too! My maiden name was actually Sawyer so my nickname at school was ‘soya bean’ and ‘oi soy’ and various other soya related derivations. The irony of ‘Soy’ being allergic to Soy is not lost on me.

And just to complicate things further…

Last night I ate some Dietary Specials ciabatta rolls, two of them, with no ill effect. When I came to throw out the packet it says ‘Soya protein’ in the ingredients. So how come I can’t drink soya milk but I can eat soya protein? Now THAT is confusing.

Then a day later I finished off a bag of dairy free fudge and noticed some hard, itchy lumps on my leg. No asthma, but yet another strange reaction to the fudge, that on further checking, contained soya milk!

Further reading…

For research articles and studies visit the Foods Matter Soya information page.

And some official advice from Allergy UK on Soya allergy.

So that’s all I’ve discovered about soya so far. Anyone else got a soya allergy? Does it give you asthma? or anaphylaxis? or just skin problems and gut ache? I’d love to hear from you.

Photo by Polina Tankilevitch from Pexels

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Filed Under: Allergies Tagged With: allergy to soya lecithin is very rare, legume allergy, living with soya allergy, peanut allergy linked to soya allergy, soya allergy., soya milk allergy, symptoms of soya allergy, what can't I eat if I have a soya allergy

About Ruth Holroyd

Author of 'Anaphylaxis: The Essential Guide: An Action Plan For Living With Life-Threatening Allergies' and 'The Shape of Skin, both available as paperback or Kindle on Amazon. Ruth is a Writer, Blogger and Patient Expert in allergies, asthma, anaphylaxis, eczema and topical steroid withdrawal.

Comments

  1. nicola neal says

    07/02/2013 at 6:25 pm

    I have just blogged on a very similar issue. My little one has been on soya as a dairy replacement since he was one because of an apparent intolerance/allergy. He seemed ok with soya. He has multiple food aggravations and is on a restricted diet. The soya didnt seem to hurt his tummy, so we left it in. But all of a sudden he has exploded into eczema. Is it part of the allergic march or is it over consumption of soya? I need to get it checked out. Seems likely to be both. This could be a bigger challenge than I thought. General thoughts of medics are he has non IgE mediated allergy – and it seems he reacts to everything and in every way!
    Thanks for posting this though. Seems my hunch about soya could be correct. Need to get it checked out. Best wishes.

    Reply
    • Ruth says

      08/02/2013 at 12:19 pm

      Could it be over consumption? Mine certainly seems to have been triggered by over consumption from the ‘soya fridge’ in the ski chalet. However, I still seem to tolerate soya protein in Dietary Specials rolls and soya lecithin in chocolate. I’m pretty sure soya flour is also OK but need more testing of this. The more I read about soya the more I think I don’t actually mind not eating it. I think the general rule though is, eat it if you can and don’t eat it if you can’t. Keeping a food and symptoms diary helps to identify when things change, as they can, drastically, over night and for no apparent reason! I have caused myself problems by cutting stuff out in the past, and then finding I have a much more serious reaction now.

      Reply
  2. dairyfreebabyandme says

    07/02/2013 at 6:38 pm

    Great article! I too am allergic/intolerant to soya milk but I get extreme gut ache and I just have to wait for it to pass. I’ve been okay with soya lecithin so far, but am trying to work out whether soya flour is okay or not – mostly by trial and error! I have the same reaction to cashews (related).

    I don’t know if you will find it useful, or not, but on my blog there is a page that lists ‘Fave Products’ – all labelled as to whether they are dairy free, gluten free and soya free (those are the things that affect one or the other of us). I’ve added egg free as well, as some of our readers can’t have egg.

    The list is in the middle of being updated at the mo, but those products that have been updated are all highlighted in green. The list is being updated as often as I can! Hope you find it useful!!

    Reply
  3. Michelle Berriedale-Johnson says

    07/02/2013 at 6:54 pm

    Hi Ruth –
    As I understand it, approximately 30% of those who are allergic to dairy are also allergic to soya – or at least to soya milk/yogurt/spread etc – although there is no obvious connection between an animal milk and a soya bean!!
    The interesting question is (although I am not suggesting that you experiment right now…) whether you would also be allergic to traditional fermented soya products – as consumed in Japan for example – rather than the ‘fresh’ soya products that are so widely consumed in the west.

    Reply
    • Michelle Berriedale-Johnson says

      07/02/2013 at 6:55 pm

      PS Forgot to mention that I have just linked your post from the FoodsMatter Soya section.

      Reply
      • Ruth says

        08/02/2013 at 12:22 pm

        And forgot to link to your Soya page which I wish I’d found when writing this. It never comes up on google, but I do usually check on there first. Thanks Michelle! There is always information on your website about this stuff.

        Reply
    • Ruth says

      08/02/2013 at 12:26 pm

      As for the experimentation, I already think I can tolerate soya flour and in Dietary specials rolls, soya protein! Soya sauce however has already been on my watch list but I’d been thinking it was the other ingredients in the soya sauce. Going to wait for my test results and then perhaps try some soya sauce to see. So I could well be OK with other types of soya. Just to confuse all my friends and family even more; no soya milk but I have that kind and that kind and that kind of soya. Now they really will think I’m a fuss pot. In terms of connections, it might relate to my peanut allergy which is also a legume, like Soya beans. Who knows? It’s all so complex. What are these fermented soya products called?

      Reply
  4. Micki says

    08/02/2013 at 11:27 am

    Sorry to hear about the soya, Ruth. Probably you had soya protein isolate in those rolls and that is highly processed stuff so perhaps the particular element you have trouble with has changed/been processed out. The lectin maybe? Just guessing. Glad you identified it anyway.

    Reply
    • Ruth says

      08/02/2013 at 12:21 pm

      I am now on a soya mission Micki, I’ll find out what form of soya protein it was as I’m fascinated with how this new allergy seems to work. If I don’t need to strike even more foods off my ‘Can Eat’ list it will make my life a bit more fun. Currently most of what I eat I make myself but when all around can eat what they damn well please that gets very wearing sometimes. I just need a holdiay from allergies. Can you arrange that for me please? Ha Ha.

      Reply
  5. Sally says

    20/08/2013 at 11:13 am

    I have just discovered that I also have a soya milk allergy, and I’m also allergic to peanuts and fine with peas and beans etc. I just had to rush to the doctors because my tongue and throat started burning and getting red hard lumps after approximately two minutes of eating two small spoonfuls of cereal with soya milk on it. My asthma also flared up and my inhalers didn’t seem to be relieving my symptoms. It happened very quickly but I’ve taken some antihistamines and am feeling a bit better now.

    Reply
    • Ruth says

      20/08/2013 at 12:38 pm

      This is exactly what happened to me. Asthma so bad that inhalers were useless. Luckily stopping eating the soya and resting seemed to work but it took a day or two to get back to normal. I was almost ready to go to A&E but it didn’t quite come to that. Frightening though and very painful. Soya milk weirdly seems to be far more dangerous that soya flour and soya lecithin but I think these have a much milder effect but they do still affect my asthma. I’d rather avoid all soya and know my asthm is properly controlled.

      Reply
  6. Michelle Kenny says

    23/01/2015 at 2:12 pm

    I switched to soya milk in feb 2014 as i thought this might help my psoriasis, a round itchy patch appeared on my ankle but i just thought this was my psoriasis. over the next 6 months it spread up to my knees and my legs would weep if rubbed. i was at a loss as to what was happening, then in sept i had a flu jab and things exploded. my face swelled and my whole body became covered in hives. first we thought this was due to medication but after stopping it the skin did not improve. then i checked to see if people could be allergic to soya and allergy uk gave some very helpful advise. although i stopped the milk straight away i was still flaring up, so then i cut out anything with soya in such as flour, E322 and this helped but i still got flare ups. then i realised that i am allergic to any type of legume. it is beginning to get better but i have to be vigilant as they sneak these products into all types of food. i am also waiting for a lge bloodtest to check for soya allergy but i think i already know the results!

    Reply
    • Ruth says

      23/01/2015 at 2:48 pm

      Hi Michelle, thanks for the comment. You are not alone, as the other comments above will show. Glad you are almost at the end of that detective work. It’s quite common in the allergy world to have problems with soya. Try drinking rice, oat, coconut, flax and hemp milk. You might be able to drink quinoa milk and almond milk but if legumes are a problem the almond might be worth avoiding until you’ve checked that out. Good luck. It’s soy sauce I miss most in stir fries and sticky soya sauce duck at the chinese restaurant. :o(

      Reply
  7. jess says

    04/08/2015 at 12:53 pm

    I tried soya milk for the 1st time this morning with cereal and within 10 mins had stomachache,slight nausea and a horrible feeling at back of throat and also found it slightly harder to breathe than normal which doesn’t feel too nice! I seem fine with soya mince and Chinese food but don’t think will have soya milk again! Have eczema and allergies normally affect skin but this was different. Just glad am currently taking antihistamines for Hayfever otherwise may have been worse!

    Reply
  8. Natasha says

    09/10/2015 at 2:18 pm

    Hi Ruth, I am struggling with soya and desperate for advice as I have stopped eating practically and don’t know where to start to know what is safe. I had an anaphylaxis to soya milk in March 2015 and was subsequently diagnosed following patch and blood tests with Pollen Food Syndrome ( this explained a lot of itching with certain fruits/nuts). I have hay fever and seasonal asthma. Also RAST showed grade 4 to silver birch pollen, grade 3 to hazel, 2 to sesame seed, peanut and grade 1 to Soya Bean. I had a second anaphylaxis to soya milk in August (accidental ingestion). In recent months a couple of smaller reactions unsure what to. Notice soya in various forms in so many foods I eat every day and now scared to eat these foods. GP has said avoid them until I can see a dietician (6 month wait list). I itch on and off, have a sore throat/hoarse voice on and off, have asthma at the moment which I don’t usually at this time of year. Have recently come down off a high protein diet. How do you manage to eat well while avoiding soya and nuts?? Tired and hungry and anxious all of the time. Afraid that as I have stopped eating the things I know I can eat that contain soya lethicin for example that in 6 months when I see the dietician I will then react worse to them. What a minefield…cancelled a half term holiday as afraid to go… All advice gratefully received as I’m so new to this. Also any in person support groups near Hertfordshire? I’m willing to travel… Thanks in advance Ruth and all ?

    Reply
    • Ruth says

      12/10/2015 at 11:51 am

      It is a mine field but I’m thinking that avoiding processed foods for a bit would help. Just until you get a handle on which products are soya and nut free. if you miss chocolate Plamil do some with sunflower lecithin. Look out for Coyo Yogurt and Coconut collaboratives yogurts too. There are loads of alternative milks but I alternate between rice, coconut and oat milks. I sometimes go mad and buy hemp and flax milk when I’m going really healthy. Can you keep a food diary and see if you doctor will refer you to a specialist dietitian? I think you need some proper advice on what you should be eating. I’m not an expert and don’t always eat that well. But if you’re getting plenty of fruit, veg, protein and the right carbs you should be fine. I too worry about the soya lecithin which doesn’t ever give me anaphylaxis but I think a build up does affect my skin and digestion. Keep soya lecithin consumption to a minimum and just have it every now and then and see if it causes you any problems. I don’t avoid to totally but I do limit how many processed foods containing it that I eat.

      Reply
      • Natasha says

        12/10/2015 at 3:25 pm

        Thanks very much I appreciate the response. Trying to see a dietician currently! ?

        Reply

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Hi I'm Ruth. I've grown up with eczema and multiple life-threatening allergies and collected more as I've got older.  It started with a peanut allergy and now I'm allergic to milk, wheat, soya and many more. In this blog I share tips, advice and things I've learnt living with allergies, asthma and eczema with a focus on topical steroid withdrawal. You can buy my books, which are brilliant by the way! The first is Anaphylaxis: The essential guide and the second, The Shape of Skin, healing poems for eczema and sensitive skin. The reviews speak for themselves. If you want to chat you can find me on Instagram, Facebook, Twitter and LinkedIn (links below). Do get in touch. And please comment on blogs, it makes a humble blogger do a little happy dance!

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