Digestive issues

I have 2 autistic sons - both adults (I’m autistic too). 
one of my sons has struggled with digestive issues for years - about 15 years - and is still struggling to improve matters. He went gluten free which helped for a while - but doesn’t seem to working anymore. He has a dairy allergy (and avoids dairy) - and has asthma. Up to about the age of four he had bad eczema too - which thank goodness went away. 
what hasn’t gone away is problems with digestion - nausea, abdominal pain, weight loss, upset stomach - he has such frequent bouts of these issues. His doctor put him on PPIs for ages - which only provided some relief - but he had to come off these as it’s not safe to stay on them for years (and he took them for about 4 years off and on - which is a worry). 

I’ve sometimes read that autistic people more commonly have digestive issues - has this been other peoples experience? And if so - has anything helped?

Thanks. 

Parents
  • Have you looked in to FODMAPs? https://www.gloshospitals.nhs.uk/media/documents/FODMAP_dietsheet_for_website.pdf 

    This is not a specific 'diet', but a starting point to eliminate a great deal of 'food items' many humans cannot naturally digest. 

    I had thought I had coeliac, and once I eliminated that completely, I could digest dairy (though butter is different and I never had a problem with this). 

    But I've also had issues with legumes/pulses (which include the peanut - not a botanical nut), and high fibre veg, mostly the mustard family - cruciferous vegetables. But I do have difficulty with alliums (Oninons/garlic).

    I've spent a great deal of time over the years working out what I can and cannot have. I've started looking into botanical properties and what's related. For instance, after having trouble with Spinach many years ago, I discovered it is a distant relative of Wheat. So I did a little research to find out what nutrients Spinach has and where else I could get those from. I didn't eat a lot of it. But I was curious. Now I do this for everything. I've discovered really interesting things too! Like comparing a pineapple to a potato: https://kale.world/potato-vs-pineapple/ They just have some similar properties. I discovered this because I stopped craving potatoes when I started drinking more pineapple juice. the Key here is to Listen to what we're craving.

    I struggle with other things like low blood pressure, so I need to make sure I get enough salt. And if one is simply thinking "what have I been told is healthy" we might not opt for something salty, or to pay attention when the body is asking for a few tablespoons of say, raw cranberry juice or a squeezed lemon.

    Lemon... is something I've found which is incredibly helpful for digestion.

    But major word of caution. Since my dietary restrictions are a broad range, I always have to read everything. I have found in the last few years there is actually very few pre-packaged GF products I can actually digest. Everywhere they are adding chickpea or ancient grains or even oligosaccharide fructans into anything from GF breads to cereal to sausages and I cannot digest any of these. Schar makes a white ciabatta in a pack and it is the only bread I can buy, so I just make my own a few times per week - slice it and freeze it. 

  • Thanks JuniperFromGallifrey - that’s really interesting and very helpful. It seems that a huge amount of research and trial and error is required when it comes to this. Do you think there really is a link between autism and digestive issues? My son is being very scrupulous about avoiding products with Gluten - and it’s not easily done - especially as he is living abroad at the moment and that doesn’t help. The country where he lives doesn’t have as much choice of ‘Free From’ foods  as we have in the U.K. 

  • That's a shame about your son having limited access to the stuff he needs.

    I can remember what it was like trying to get gluten free stuff here (Belfast) 20 years ago and it was only really in health food stores. Doctors weren't even really acknowledging food intolerances as a thing at that point, and I remember one bad -temperedly referring me on to a private specialist with a tone of 'if you insist, it's your own time you're wasting'. Even that specialist - a digestive expert - said 'well, that doesn't really exist you know. You probably just have a bit of hiatus hernia'. GPs are a vital service in some ways, a very blunt tool in others unless you happen to get a really good one who listens with an open mind. When I did conclude I was intolerant to wheat/gluten, it was basically the hippie type stores or nothing to get the bread etc. Which at that stage was like eating a brillow pad that would disintegrate when you dried to spread butter on it. 

    Things have come a long way with supermarkets etc. but some stuff can contain other troublesome ingredients: pea husk crops up in certain things, and I think that can be a real irritant. 

    Basically, it's live off lettuce - which I think I probably should do to lose weight- or find some magical restrictive diet that's a bit more appealing but miraculously evades the inflammation factor long-term. 

    Beginning to think it's just what Doctors would call 'idopathic' - a great word that gives a veneer of respectabilty to 'we haven't a clue why this happens' But the prevalence in autistic people in particular is fascinating, if - experientially - annoying to say the least.

  • It is interesting isn’t it? Is there a connection between autism and digestive issues - and if so - why?

    Another problem with ‘Free From’ foods is that they can be really expensive. 
    I like that idea of having a ‘cave man’ diet - essentially if it’s not unprocessed meat or plants you don’t eat it. Before processing foods was invented we wouldn’t have been able to eat wheat at all. We’re probably not ‘designed’ to be eating so much wheat. I found that when I cut out all wheat containing products I lost weight without even trying to - I was eating plenty of other foods and not going hungry at all. 

    I agree too that Doctors are quite a blunt instrument in many ways - they provide simple answers to complex problems - so it’s not surprising that they often don’t work or cause more problems. 

Reply
  • It is interesting isn’t it? Is there a connection between autism and digestive issues - and if so - why?

    Another problem with ‘Free From’ foods is that they can be really expensive. 
    I like that idea of having a ‘cave man’ diet - essentially if it’s not unprocessed meat or plants you don’t eat it. Before processing foods was invented we wouldn’t have been able to eat wheat at all. We’re probably not ‘designed’ to be eating so much wheat. I found that when I cut out all wheat containing products I lost weight without even trying to - I was eating plenty of other foods and not going hungry at all. 

    I agree too that Doctors are quite a blunt instrument in many ways - they provide simple answers to complex problems - so it’s not surprising that they often don’t work or cause more problems. 

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