Don't always blame it on Gluten: Does anyone have a soya lecithin allergy / reaction?

Sometimes it's not until you've tried something new and react that you delve deeper into the other ingredients - even if the item is actually marked as gluten free.

Soya lecithin is often used in gluten free chocolate and other foods for texture and binding so that items don't separate. However, people who suffer from birch pollen hayfever and oral allergy syndrome may find they react to it by having a tingly itchy / swollen mouth, mouth ulcers, skin flushing and tight dry lips. You may also get abdominal pain, gas, nausea, vomiting and bloating (and assume it's evil gluten when it isn't). Often people also have allergic rhinitis type symptoms.

If you react to soya lecithin you may also react to other members of the legume family like:

fresh and dried peas, beans, carob, liquorice (often not GF) and peanuts.

Have any of you had adverse reactions - blamed it on gluten - only to look again and discover that it was soya lecithin that was causing you a problem?

See:

allergyuk.org/soya-and-soy-...

livestrong.com/article/3100...

mayoclinic.com/health/soy-a...

12 Replies

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  • I certainly react to dried beans and peas in a very bad way

  • yes i found out that some one made me a 7bean chilli and i had a bad reaction sick and loo all night

  • Do you also have hayfever and any problems with these foods:

    SEE: allergyuk.org/oral-allergy-...

    Recognised associations between pollen and food allergies

    Pollen

    Tree Pollens

    Birch, Hazel, Alder

    Fruit

    Apple (raw)

    Peach

    Pear

    Plum

    Cherry

    Nectarine

    Apricot

    Kiwi

    Apple

    Peach

    Plum

    Cherry

    Melon

    Vegetable

    Carrot

    Celery

    Potato (raw)

    Beans and Peas

    Mange Tout

    Soya and

    Soya Milk

    Tomato

    Beans and Peas

    Gourds

    Nuts

    Hazelnut

    Peanut

    Almond

    Spices

    Coriander

    Cumin

    Aniseed

    Caraway

    Source: allergyuk.org/oral-allergy-...

  • Yes I have hay fever

  • I'm lactose intolerant and also soya intolerant. Apparently, some 1/3 people who have lactose intolerance are also soya intolerant. It's why I won't eat Black Farmer sausages - they contain soya flour and, with the best will in the world, make me very ill. Did try writing to them and suggesting a shift to something less likely to be contentious, like rice or potato flour, and got a polite reply saying they were sorry blah blah and would look into it, but some years down the line they're still doing the same old soya recipe.

    Oddly, though, have found I am fine with fermented soya products, so long as they obviously don't contain gluten, so tamari and white miso are still on the menu, even if tofu and most chocolate is off. The good news for chocoholics is that Montezumas use sunflower lecithin, so a lot of their products are gluten, dairy and soya free :)

    Always reacted badly to beans: once forced myself to eat cassoulet so as not to offend the boyfriend's mum, but was violently sick before we even reached the motorway on the way home, so have avoided them pretty much ever since.

  • Looking on Montezumas site, but having difficulty just getting a list of products up that'd be allergen free!

    Is there a knack to this, or do I have to look through everything and check the ingredients lists?

  • Most of their dark chocolate is fine, they also have a 'vegan collection' among their truffles that is pretty good. Alternatively, if you phone up their customer service people, they have all the info there and are very helpful as a rule.

    I tend to buy 2kg boxes of 73% dark couverture for my shop, but for me personally I go for the Lordy Lord, the Orange and Geranium, or the mint drops, all of which are yummy :)

  • Thank you :)

    I emailed them to ask for a list of allergen free items, and suggested that they add a helpful page of such items to their website. It'd help with marketing I think too :)

  • I have to follow gluten and lactose free for IBS reasons (low-fodmap) and doing this found I also react to soya. I noticed by eating alpro soya yogurts, when my reaction to them was very similar to eating normal diary yogurts.

    I too have hayfever and various other dust and pollen allergies, as well as eczema and asthma.

    Still trying to work out what is safe and not safe for me.

    Looking forward to hospital for my low-fodmap referral course next month.

  • kestria Hope you have success on finding safe FODMAPS. If you need some direction {edited to: message me on HU - we don't allow personal emails to prevent spam to you and protect your privacy etc GFGs} I have been through the FODMAP diet and found out my triggers.The King's College leaflet describes the diet used for up to eight weeks. It is quite restricted. They generally divide the FODMAP sugars into five groups

    Fructose: Honey, mango, sugar snap, apple, pear peach watermelon,

    Fructans: inc wheat rye onion barley

    Polyols: mainly stoned fruit

    GOS: peas beans lentils and pistachios

    and lactose: all dairy(lactofree products may work).

    Having some preknowledge of what is triggering can help identify other triggers for the testing stage. For example me knowing that onion and wheat are bad for me led me to be very careful when testing the fructans. So you being bad with soya would indicate you may be bad with all GOS. Similarly, knowing what you are alright with allows you to get those sugars out of the way quickly. This approach allows a quick testing time. The only one this does not happen with is Fructan because you are expected with the King's College leaflet to test with four foods as some people are alright with one but not another

    How are you doing for bread is the gluten free OK it can sometimes be so starchy that causes problems. taste.com.au has a buckwheat bread recipe off the low fodmap section if you can get gluten free buckwheat from an independent health food shop (Doves is not guaranteed GF because it admits growing the buckwheat in a field next to wheat!). Hope the diet you are initially put on is not too restricted for you. You should start to get better in the first fortnight but it might take up to eight weeks for all the symptoms to clear. only then can you start to test. I derived the courage to test from the knowledge that I would soon (about two months) know what I could eat without the symptoms reoccuring. I strongly disagree with people who stick to the elimination stage diet for life, it is so restricted and you are depriving yourself - the chances of anyone being intolerant to all groups is so low.

    Just one word of warning - quite often there are items in the "safe" list that you can be intolerant to. I cannot eat banana, corn or polenta another friend cannot have citrus, soya or lactose you will need to test if you are still having severe problems after three weeks. Some dieticians are dubious if you say you think you are intolerant to "safe foods" To help with identifying I kept a food diary for the six weeks it took for all symptoms to go and went through to find banana was a pattern I retested them all once i was symtpom free. Hope this helps and hope you are soon symptom free.

  • Thank you :)

    I'd determined a while back that I had issues with gluten, but it took ages for docs to finally agree to test me. (Coeliacs testing was negative. But they agreed it could be a gluten intolerance due to my symptoms).

    I'd heard about low-fodmap last year, and as I was diagnosed with IBS over 10 years ago, I figured I'd try it. I knew food was a trigger for me, but for years docs just told me it was stress and not at all food related. I realise stress is a trigger, but it isn't the only one.

    Gluten free bread I find is okay, but only one portion a day. Any more than that and I can feel ill, I'd always put that down to the other ingredients in them. I tend to do better with Genius breads than the supermarket own.

    Interesting to hear about Dove's, I'd been using their plain flour - would it be best that I swap? If I need to change this, what do I swap too?

    After testing diary yogurts I noticed I had big issues there, having eliminated them for a while first. Then discovered lactose intolerance was in the family, so that's a possible reason.

    I do like Lactofree cheese, and as I don't eat much cheese anyway I find it fine in small quantities. But I don't tolerate their yogurts or ice cream, again I had assumed it was due to the other ingredients.

    Cereal is a big issue for me, trying to find one that I can eat without bloating, getting sore etc. I like the gluten free O's by nature's best, but again too much and I trigger. So again I assume something in them is bad. Kallo puffed rice seems okay for me.

    I plan on swapping from Kara Milk to Rice Milk, I have had kara milk for a while and seemed okay, but now I'm not so sure. Today I had kallo puffed rice (as it is rice and nothing else) with kara milk and canderel, a mug of tea, with a few rude health rice thins (again rice and nothing else) and I bloated up. So I can only put this down to the milk. So today I'm buying rice milk and swapping out my kara milk.

    I'd like to find a safe cereal or breakfast item, otherwise I'm only left with fruit which I can't do in large quantities, during the working week. Of course on weekends I can grill bacon (or turkey rashers) and have with eggs, but during the week I don't have time for that.

    I like some of the 'free from' foods sainsburys and tescos do, and I stick to wheat, gluten and lactose free items. But some have inulin in and other things like soya and sugars etc, and I'm pretty sure I trigger from them too (in fact I'm certain I do, after results from the last few weeks).

    I'm definitely work on eliminating soya (which is tricky as it's added to so much stuff), and I avoid beans of any other type too.

    Can be hard to discover triggers when items have so many ingredients though!

    I've been trying low-fodmap for months now (on and off, had to go off it for Coeliacs testing), and I'm struggling now. Almost seems like whatever I eat I get ill.

    So I'm going back to basics from today. Simple food, no prepacked stuff. Only approx 3 weeks until low-fodmap training part 1 at hospital. Just hope to hang on til then!

    So any advice would be very much appreciated.

  • I can`t have the Lactofree yoghurts because I am also intolerant to maize starch which is in most yoghurts