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Digestive issues

Kate Kestrel

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. 

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  • I have always had digestive issues; bloating, gut spasms after eating etc. I have more recently been diagnosed with IBD (colitis) after losing nearly a stone in weight without realising it and becoming borderline anaemic.

    In my case bouts are often made worse by stress and anxiety. I've tried cutting out certain foods in the past such as bread/pasta and lots of the different vegetables that seem to make me much more gassy. Elimination diets are tricky as it takes many weeks to see if they work and I worry about becoming nutritionally deficient. Also, just the process of eating and digesting makes me uncomfortable regardless of what I eat it seems so I'm not sure it's any one specific food type per se.

    IBD is an immune system condition so I expect this comes into play too for me. That along with reduced ability to cope with fibrous foods. It's annoying as I love fruit/veg and other 'healthy' foods its just they don't love me!

    My strategies for minimising gut issues include;

    1. Small frequent meals (if I eat too much at once it is too much to digest)

    2. Not eating after about 5pm in the evening else the digestive process and discomfort interferes with my sleep

    3. Trying to have a more Mediterranean diet, as for me this seems to cause less problems.

    4. Avoiding fizzy drinks and alcohol (boring but it helps)

    5. Trying to avoid stress and anxiety (practically impossible)

    6. I take probiotic daily although there's no real evidence to support this helps longterm but I like to think I am giving my gut bacteria a boost

    I'm not diagnosed as autistic just suspect I am.

    My Dad had similar digestive issues to me (he used to joke he was 'allergic to carrots' and I now suspect in hindsight he also was on the spectrum (a realisation I've come to after all my research into the topic for myself) so it does seem to be a theme for autists.

  • in reply to AnnieH

    Thank you Annie for sharing your experience with this - it’s very helpful and I really appreciate it. I don’t think any Doctor has suggested IBD to him (I’ve just googled it and the symptoms seem similar). To be honest when he’s seen a Doctor about this they haven’t been very helpful as far as I can tell. They just dish out these PPIs - it seems to be viewed as an ‘easy answer’ to any digestive problem. The problem is that for my son they don’t solve it at all. Like you he’s tried various ideas - they help for a while but it’s never really resolved. I wonder if there might be a genetic element too - his grandfather had a lot of digestive issues too. 
    By son only drinks water - so the alcohol and fizzy drinks aren’t a problem thankfully. He is under a lot of stress at the moment (and has struggled with anxiety for a long time) so I think you’re right that that is a factor in this. 

    It’s really a difficult thing to manage - I’m sorry you’re dealing with this too. And thanks again for your reply - it’s much appreciated :) 

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  • in reply to AnnieH

    Thank you Annie for sharing your experience with this - it’s very helpful and I really appreciate it. I don’t think any Doctor has suggested IBD to him (I’ve just googled it and the symptoms seem similar). To be honest when he’s seen a Doctor about this they haven’t been very helpful as far as I can tell. They just dish out these PPIs - it seems to be viewed as an ‘easy answer’ to any digestive problem. The problem is that for my son they don’t solve it at all. Like you he’s tried various ideas - they help for a while but it’s never really resolved. I wonder if there might be a genetic element too - his grandfather had a lot of digestive issues too. 
    By son only drinks water - so the alcohol and fizzy drinks aren’t a problem thankfully. He is under a lot of stress at the moment (and has struggled with anxiety for a long time) so I think you’re right that that is a factor in this. 

    It’s really a difficult thing to manage - I’m sorry you’re dealing with this too. And thanks again for your reply - it’s much appreciated :) 

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