Lecithins a trigger?

[TheOtherHalf]

Hello all, I am a coeliac with IBS which has got worse since my coeliac disease became active about two years ago. Been GF for a year, but still bad IBS (Mainly C, but turning to D every so often). I am on a long waiting list to see the gastro Dietician, but been advised by GP to try my own elimination diet in the meantime. Low fodmap no use for me, as there are lots of foods that are supposedly fine to eat, but cause me problems. I think that a common ingredient in lots of the things that trigger me, is lecithin - both soya and sunflower-based. Anyone else have an issue with lecithins?

[Edgar77]

I am also celiac. I do follow the fodmap diet. I know there are things they say we can eat, but we know what they are and I have already eliminated them. I have also cut out lactose which has helped. As a long term celiac I have also developed osteoporosis which is common in celiac so try to get enough calcium and vitamin D.

[pwllmawr2]

Hello TheOtherHalf,

I too have Coeliac Disease and have found that my IBS has got worse since being diagnosed, Its about ten years now since I registered with Health Unlocked and have tried several recomendations from subsribers from low Fodmap diet, to going Lactose free, all without any real sucess, will need to look more into Lecithin as this is new me, I have had several colonoscopies over the years, CT Scans and ultrasound scans, all come back normal, my bowel movements can vary from quite loose to fairly firm and normal looking, however I have trouble passing gas,I seem to get a build that explodes when I empty my bowels, I have no weight loss and no blood in my stools, I get pain in the same place just under my belly button which has been gradually getting worse over the years, saw a different GP earlier this year who gave me Fibregel to help add extra fibre to me diet, still the same,

[Luisa22]

I am not coeliac, and don't seem to react badly to gluten, but I only eat that once a day (toast for breakfast) I did exclude it during the low Fodmap trial, but found it didn't upset me.

But could you tell me what sorts of foods contain lecithins?

[TheOtherHalf]

Thank you all for your replies. It is nice to hear perspectives from fellow sufferers, though not of course to think of you having gone through all this yourselves for so long.

Edgar, sorry to hear about the osteoporosis. My mum was diagnosed in her fifties, and now has osteoporosis too. She has developed severe OCD around eating/medication, resulting in very limited vitamin intake, which obviously won't have helped, . I am trying to get some kind of balance between watching out for triggers, but not taking it to that extreme. I have reduced the lactose, which I think probably is a trigger for me too. I am glad that a modified low fodmap diet is having some positive results for you 😊

Interesting pwllmawr2, that your pain is just below the belly button - mine is just above! And I'm sorry to hear that it's getting worse rather than better! It can be quite frustrating working with GPs on this. I found fybogel to make my pain much worse, but still I was constipated. Laxido has been more successful, though it takes longer to take effect than stated on the NHS website or the info leaflet. And I have to drink at least 3 litres of water per day for it to be effective. I get easily dehydrated since the CD kicked off.

Luisa, a far as I know, lecithins are emulsifiers. They occur naturally I some foods, but are added to things like chocolate or block margarines to help the ingredients bind together. They appear in a lot of vegan foods, which is frustrating if you are trying to avoid lactose.

It sounds like many of you on here have been enduring all this for a long time, trying to figure out ways of managing it. I have a horrible feeling based on this and my own experience so far, that elimination diets pretty much have to be long-term, realistically, to keep symptoms at bay. It is hard to accept, as someone who used to be one of those thin people who could eat almost anything, and reaches for something sweet during anxious or tiring times. I guess with IBS, it can become a vicious cycle. It is hard to get used to the idea of food being only a fuel and not a source of pleasure or comfort,but the way things are just now, it is affecting my job and relationships.