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. 

  • Hi, I actually used to also look into botanical properties of food to try and figure out what was related :) - it is nice to meet someone else who does that.

    I actually have some similar triggers to you (garlic onion, legumes, dairy etc) and I also have a similar experience with not tolerating many gluten free breads- in fact i realised i do better with specific types of gluten containing breads ... (probably the fermentation time and type of flour that matters).

    Do you cook a lot? I find it really hard to find convenience food options that I can have due to dietary restrictions... (and it’s even harder in Germany) i sm struggling at the moment as i lack the energy to cook... (it results in stupid decisions like eating cake for meals ... which is bad for digestion and health...) 

    I like your idea of looking for alternative foods with similar nutrients (like for your potato pineapple example)- i might try that!! Thanks!!!

  • Thanks Ann, and everyone, for their experiences and knowledge on this issue. I've been plagued by similar issues for years. I'm gluten free for two decades now, but bloating, pain, and fatigue, and reflux, would always find other ways to surface anyway. FODMAPs eventually led me to taking anything onion related (including scallions, garlic, etc.), as well as peas, out of my diet. It's helped reduce inflammation - at least to the extent that the tip of my nose no longer pulses scarlet when I've eaten a meal. Just an additional little indignity that was for so long always the cherry on the inflammation cake. 

    The PPIs thing is interesting (and your research in that is very illuminating) as I came to realise that if they help at all they do so in the short term only, usually when I've fallen off the wagon with something less restricted than usual and need crisis management. One thing I personally believe is that mis-prescription of PPIs happens all the time, as doctors are trained to think that 'too much acid' is always the issue. In fact, low stomach acid is just as commonly to blame - the acid comes from food not getting broken down fast enough by low acid that things get backed up and regurgitated. So PPIs can ultimately worsen the problem. Taking a small amount of acid cider vinegar prior to a meal can help a bit if you're eating starchy stuff. 

    Stress definitely contributes too, as does anxiety. Our stomachs are a kind of second brain, so it makes sense that environmentel over-stimulation and constant worried rumination finds their way into the gut too. 

    But I think SIBO is a massive issue in all of this too. I did find that trying combining foods for a while helped adjust my gut ecosystem in such a way as I was able to resume not combining with less discomfort than before. But over time, things have reset and I've been thinking of trying sustained combining again for as long as I can bear it. I'm so lazy about planning meals though, so cheese on toast is too easy a default to fall into, perpetuating the problems. Maybe I'll get into a new pattern of combining with a bit of effort - overcoming the inertia blocking me starting, and then sustaining it once I'm in a pattern. 

    It;'s a n exhausting and frustrating balance with this stuff, where you feel you're never done fine-tuning and maybe seeming to get temporary improvements before the status quo reasserts.It puts a lot of additional stress on an already stressed-out body and mind. In my case, I frequently find myself hoarse at inconvenient moments, which means I never sound the same consistenty, and that really further hits the small amount of self-confidence I even have to begin with. The self-consiousness spiral then accelerates even more. Fun stuff!

Reply
  • Thanks Ann, and everyone, for their experiences and knowledge on this issue. I've been plagued by similar issues for years. I'm gluten free for two decades now, but bloating, pain, and fatigue, and reflux, would always find other ways to surface anyway. FODMAPs eventually led me to taking anything onion related (including scallions, garlic, etc.), as well as peas, out of my diet. It's helped reduce inflammation - at least to the extent that the tip of my nose no longer pulses scarlet when I've eaten a meal. Just an additional little indignity that was for so long always the cherry on the inflammation cake. 

    The PPIs thing is interesting (and your research in that is very illuminating) as I came to realise that if they help at all they do so in the short term only, usually when I've fallen off the wagon with something less restricted than usual and need crisis management. One thing I personally believe is that mis-prescription of PPIs happens all the time, as doctors are trained to think that 'too much acid' is always the issue. In fact, low stomach acid is just as commonly to blame - the acid comes from food not getting broken down fast enough by low acid that things get backed up and regurgitated. So PPIs can ultimately worsen the problem. Taking a small amount of acid cider vinegar prior to a meal can help a bit if you're eating starchy stuff. 

    Stress definitely contributes too, as does anxiety. Our stomachs are a kind of second brain, so it makes sense that environmentel over-stimulation and constant worried rumination finds their way into the gut too. 

    But I think SIBO is a massive issue in all of this too. I did find that trying combining foods for a while helped adjust my gut ecosystem in such a way as I was able to resume not combining with less discomfort than before. But over time, things have reset and I've been thinking of trying sustained combining again for as long as I can bear it. I'm so lazy about planning meals though, so cheese on toast is too easy a default to fall into, perpetuating the problems. Maybe I'll get into a new pattern of combining with a bit of effort - overcoming the inertia blocking me starting, and then sustaining it once I'm in a pattern. 

    It;'s a n exhausting and frustrating balance with this stuff, where you feel you're never done fine-tuning and maybe seeming to get temporary improvements before the status quo reasserts.It puts a lot of additional stress on an already stressed-out body and mind. In my case, I frequently find myself hoarse at inconvenient moments, which means I never sound the same consistenty, and that really further hits the small amount of self-confidence I even have to begin with. The self-consiousness spiral then accelerates even more. Fun stuff!

Children
  • This sounds very similar in many ways too - ‘it’s an exhausting and frustrating balance with this stuff’ - yes. My son has periods when he thinks things have improved after a change in his diet etc - but it isn’t long before the symptoms return again. He has such severe chest and stomach pain - it’s so difficult for him. It’s hard to see him suffer with it too. He came to stay with us at Christmas and I was surprised at the the severity of it. He was still taking the PPIs at the time and it was clear that they really weren’t solving the problem at all. 
    i think PPIs are massively overprescribed. I remember going to the doctor (years ago) with a persistent sore throat and he said “it’s probably caused by acid reflux that you’re having at night in bed” - even though I had no issues with acid reflux at all. He prescribed PPIs but when I read the side effects I decided not to take them. I’m sure they prescribe them to many people who really need advice and guidance about diet, exercise, stress levels  etc - that would help permanently improve their issues with stomach acid. I think Doctors often resort to just prescribing a drug because the true solutions are often just too complex for them to address. It’s the same with anti-depressants - it’s easier to prescribe them than to really work out the causes behind someone’s unhappiness and distress. Sometimes they are appropriate I’m sure - but not always.