I've posted a few times around cross-contamination and cross-reactive foods, and the uncertainty around cross contamination.
I've been to a dietician, and still on waiting list for NHS GI/dietician, but the theory that lectins may be behind a lot of the problem has proved an interesting exercise.
Lectins are a protein in a lot of plant-based foods, seeds, nuts and eggs. They should not cause problems and have health benefits, but for some folk, particularly those with a damaged GI tract from things like coeliac, they can cause problems/autoimmune response.
It's a theory that seems to be panning out for me, in addition to the suspicion that sugar is also kicking off a reaction.
The upshot is a very very limited diet and a lot of weight lose. Still haven't sorted out what's ok/not ok, and being caught out every other day, but I seem to be on the correct route with this. It's not an easy solution but the consequences/alternative is a lot of pain/inflammation/increased damage.
So, for anyone who is similarly struggling with their strict GF diet not fixing the problem/still causing problems, I would recommend having a look at lectins as a possible cause in addition to coeliac.
I do still think a lot of GF labelled foods have been part of this issue, and the low level gluten/cross contamination has maintained a level of damage which has allowed lectins to become an issue, so I'm strictly avoiding all GF labelled foods also.
I do know a couple of coeliac's who have issues with Soya Lecithins, so it does seem to be a common cross-complaint. One or two have told me they get rather ill from tofu, which might be linked I suppose. It's definitely not just you, but it must be awful to still be getting so ill
Ye, but it is oddly the one thing I can eat that I have no issues with. Still like a soy yogurt or some soy in cooking. Suppose it's all about he moderation.
I'm ok with small amounts of soya (e.g. soya sauce or a few edamame beans), but if you give me tofu I have a pretty severe reaction, so you're right, moderation is probably the answer.
Me too. I’m veggie and a long term type 1 diabetic so have headed down the salad route since being diagnosed in the Summer. Tomatoes and peppers are a problem I’d say.
Hi Winger65 this is interesting as tomatoes and peppers are members of the nightshade family which are known to cause gut inflammation in some people and to exacerbate arthritis.
Tomatoes are one of the highest lectin badies. Apparently if you remove the skin and seeds, it's safe to eat. Similar with the bell peppers. I do have hip joint issues and removed peppers and tomatoes a few years back and do think it made a difference. Pretty much all plant-based food and veg have lectins to a certain degree, but the preparation of them helps, e.g. remove seeds from cucumbers. Apparently lectins are a defense mechanism that plants have develop to keep predators away.
Sorry to hear you are still trying to sort out your diet, Mise.
Avoiding lectins is one of the recommendations on the Autoimmune Protocol diet which some people follow to alleviate symptoms. (Can’t remember if this has been mentioned before). It’s one of those diets that you follow until symptoms have improved and then try introducing foods back in.
Avoiding sugar is a very good idea, I also found it seemed to make symptoms worse when I was at my lowest. I can now eat the occasional slice of gf cake without a problem.
Tomatoes are an interesting one. I’m ok with raw tomatoes but have to limit the amount of cooked tomatoes. As lectins tend to be reduced by the cooking process, I guess it may be another component.
Hopefully eliminating suspect foods now will help your guts to heal in time.
Thankyou, yes it does seem to be all about the elimination. Still confused at times if maybe some of the reaction is cross-contamination, but I've managed a run of about 4 days with no reactions and difference is amazing. It's a very very limited diet but it does seem to be a necessary evil at the moment. And yes sugar does seem to be the thing to avoid as well.
Had appointment last Friday with NHS dietician and was utter waste of time. Very nice and friendly but clueless to immune diet/lectins, so she has just shunted me on somewhere else for allergy testing. Her biggest concern it seemed was that I can't have any desserts or fruit, which is bizarre to say the least. I do worry how much research is not filtering in to the NHS with regards coeliac/cross contamination/inflammation caused by diet.
Glad to hear you seem to have found some safe food. Many posters on here have found it necessary to limit foods fairly drastically until they have managed to get their health back. Perhaps take some multi-vitamins if necessary?
The NHS is a wonderful institution, but the advice on food seems to be limited to “healthy, balanced diet”, whatever that means. Many coeliacs find that they know more than the dieticians they have been referred to.
This describes me perfectly. I’ve had a diagnosis since June but apparently since I’m type 1 diabetic, epileptic and have an under active thyroid, I’ve had it misdiagnosed for a lot longer. Since I’ve gone GF apart from losing the nerve and muscle pain, which I’m thankful for, my stomach issues are terrible. I seem to not be able to tolerate tomatoes, peppers, nuts and potatoes and also GF food. I’m also veggie so they were a big part of my diet. I’m really tired now and feel out of sorts. I’m wondering if I should ask for a blood test now as I’ve been exhausted and a bit breathless all weekend.
Hi I think you should be going to your GP and asking to be referred to a dietitian to help you with your diet and monitor your health, it difficult to cut out gluten but when you are having to cut out other foods and work it out for yourself then its a bit of a minefield. Hope you feel better soon
I agree with tmoxon - you sound like you need more investigation. If the immune reactions have subsided (nerve/muscle pain) that's a good indication that gluten is absent, but the residual/worsening tummy issues need investigating. May be some additional food intolerances as you've mentioned?
I'm finding the NHS route bit wearying but I would recommend speaking, additionally, to a private dietician who understands better immune reactions to food/intolerances, and maybe having some testing done.
But certainly go to GP as breathlessness would indicate bigger issues, e.g. anaemia or allergies.
It's a pain that it takes these things so long to sort, and you're still left with mysteries.
Been in bed since 7. Blood sugars all over the place. Told today I can have a call back from the GP on the 5th of November to discuss having a blood test? Sure Guy Fawkes was sorted quicker. Am so tired 😑
November?! And simply to discuss 'having' a blood test, not actually doing it? That's crazy.
I appreciate waiting lists are what they are, but that is unacceptable if you are so unwell and experiencing breathlessness.
I would phone back for an emergency appointment and for them to ensure blood test on the day. Failing that, if struggling with breathlessness, head for A&E.
Am so grateful for the support on here. Feel at a loss as to what to do now without it. X
I have a problem with all three of those, particularly egg. Probiotics seem to help a little but generally if I do not eat completely clean I am constantly inflamed.
Hi Carolinepj.
Eggs do seem to be something that most autoimmune/lectin diets suggest avoiding. I'm still including due to no reaction (at moment) but interesting you are having to avoid. Eggs are a source of emulsifier which can be irritating to the gut. There is a research study underway at Scottish uni at the moment looking at if we need to eliminate emulsifiers from our diets. They have already done a study on mice, feeding them just eggs (lucky mice....), and the results showed quite a bit of damage to their GI tract. Humans obviously are bigger and eating eggs for a long time, so it may be that they are ok, but do seem to be a source of issue.
Such a shame it's the common foods that we end up having to avoid rather than obscure foods.
When you state 'inflamed' - do you get joint inflammation/nerve inflammation?
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