Digestive issues

The connection between autism and digestive problems is indeed something that's been observed in many cases. It can be quite challenging to witness your loved one go through symptoms like nausea, abdominal pain, weight loss, and upset stomach. You mentioned that going gluten-free provided some relief initially, but it seems like it's not as effective now. It's frustrating when you're searching for solutions. I understand your son had to discontinue long-term use of PPIs, which can be concerning. Regarding potential remedies, have you considered exploring probiotic? They're known for promoting gut health and could be worth looking into. However, it's crucial to remember that not all probiotics are the same, and what works for one person might not work for another. Doing some research to find the right probiotic that suits your son's unique needs might be beneficial.

One of the first things I noticed with my autistic “spidey sense” (long before I knew about autism) was chemical fragrance. It would hit my gut and Immediately hurt internally. I started to find myself angry about chemical fragrances and could never work out why no one else was bothered or how they managed to infect society and how tobacco was banned but not incense or plug ins. My grandmother had this issue as well so I didn’t feel wrong but goodness. 

I’ve had a few difficult situations with flatmates and others. Now if I can avoid Uber, I will. For some reason they all have chemicals in their cabs. 

When I was younger I remember a magazine called the Utne Reader which exposed a lot of corporate nonsense regarding farming. There’s probably a few days of conversation to be had on each of these topics alone!

I totally agree with all you’ve written here JuniperFromGallifrey.

I come from a family of farmers and modern farming practices are pretty appalling. They get encouraged (and paid) to plant one field of bird friendly flowers - and in the next field they’re killing off last years ‘nature’ project by killing off the whole lot by spraying it with ‘Round Up’. 

About 85% of the food in your average supermarket is incredibly unhealthy. The cleaning products they sell are incredibly toxic and most unnecessary. Even seemingly pleasant things like scented candles are really bad for our health. 

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. 

One weird thing I seem to have is that my right thumbnail acts as a printout of the current stress my body is under - diet, anxiety levels etc combined.,I get deep vertical lines on it any time I’m under emotional of physical strain. If I can sustain a period of better calm and improved diet. The lines sop printing - right now, a very deep line has just finished printing (about a week ago I would estimate) as it sits just above where the skin starts - about half a centimetre. As I’ve just had a horrendous day emotionally I can imagine it will start again leaving the smallest of gaps. My GP noticed it a while ago as well and I explained my theory. He sent me for blood tests which came back normal so once again modern medicine can only conceptualise so much. 

There's so much research to be done, however, we do know micro particles affect the lungs and the gut when breathed in. We also know autistics tend to be hyper-sensory, which in a positive sense means the ability to calculate harmful compounds or reveal particular notes or notice systems otherwise invisible. We can have a better awareness but this comes at a cost, which is the need to shield children from forces in their environment which they've not acquired the discipline to control or work around. 

I would reason that given a little understanding about this, and how we might be better suited for a climate or milieu in an earlier tribal-like environment that we might not be fit to deal with the modifications that have happened in the last 100 years with agriculture and farming. We would be better suited with organic unmodified sources of nutrition, perhaps foraged and if this is true, autistics should probably not go full vegan ever. While I personally feel it's more human healthy to be moderate with almost anything, this might be something to just be aware of. However, we probably won't suit corporate farming practices due to this either.

These are simply my thoughts on the matter from a bit of digging about. 

Perhaps a rice maker would help him? 

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.

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 :) 

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.

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. 

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. 

I cook. I must. But I freeze things as well. However, cooking has become a lovely way to connect with my senses. I'd really suggest making time to indulge in the chemistry and properties of food, if anything just to begin to focus and discipline senses in a very innate way which I think most of us have the capacity to.

Dove's Farm makes several incredible blend of flours, but I only have the White Flours. There is always a trusted Jacket Potato and that's easy to just pop into an oven. But I have simplified my diet. Organic meats and grass fed dairy seem easier to digest along with organic wine:) Most things foraged seem fine as anything from the sea. It seems the Daisy family of lettuces -not a problem, but problems with the mustard family. Again - I'm really beginning to believe there is a better foundation for what we can digest within botanical properties rather than whatever the other actually is. These seem fine: Berries, seeds, nuts (the peanut is a legume), most roots and squashes (the cucumber is a squash). 

And anything not chemically designed: Honey and maple syrup are brilliant. Sugar is always preferred over a sweetener - it is derived from a plant! But less processing means something like honey is the easiest to break down. I might also not pay attention to the word 'starch' and I completely ignore the word calorie. These are silly and useless. Corn is a vegetable, the potato a tuber. The GMO's in corn in the US seem to cause problems, but in the UK, I seem to respond quite well to it. So this is something worth considering. I've been back and forth for years. There is a noticeable difference. I've just been looking into permaculture a little more. It would be nice to have more time to spend with my own garden, but perhaps that's something to look forward to!

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!

This is massively helpful Ann - thank you! I’m going to copy what you’ve written here and send it to him. He did have huge issues coming off the PPIs - just exactly as you say. He gradually reduced them like you did. He ended going into the Accident & Emergency place near him yesterday due to abdominal pain and nausea - and he left with…..more PPIs :( 

I have to go out now - will reply properly later. What you’ve written here is all very relevant and helpful. He is so very thin - worryingly so, and yet he loves food. It’s all a bit of a mystery and it’s really having such an impact on his life.

speak later - and thank you so much for all your very helpful advice. 

I’m very sorry to hear that. Have you asked your Doctor about it? And if so what have they advised? They keep giving my son PPIs but they don’t help - I almost think they make it worse sometimes. He’s had these problems for years. He’s abroad at the moment and they’re suggesting an endoscopy but he can’t access free health care there and he can’t afford to pay privately. 

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!!!

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 Kate, This sounds very much like me. I can share some of my experiences and what I have tried in terms of digestions/food but unfortunately food and eating is something that I still struggle with a lot. 

I've always had sensitive digestion, even as a very young child (couldn't have normal full fat milk, always struggled with fatty foods, frequent abdominal pain, bloating, nausea, I was/am a picky eater, plus I've always struggled to recognise hunger/fullness cues). However since 7 years, I've had much worse digestive issues which have impacted my life considerably: nausea, bloating, lack of appetite, therefore unintentional weight loss (several times to the point of me almost being hospitalised due to being so underweight). More recently I've also had lots of problems with binging/stress eating and overeating. 

I was also put on proton pump inhibitor initially and they did give some relief (or so I thought...I wonder if it was mainly placebo effect in my case), but my digestion was never fine. Then the dose was increased when my symptoms got worse but it still didn't really seem to help so after over 2 years on them I decided to come off them (I did clear it with the GP). Has he already come off them? When I came off them I had massive acid reflux (it's called rebound hyperacidity)- which is one of the reasons that I stayed on them for so long... whenever I missed one dose of the PPI, I would have very bad acid reflux which made me believe that I needed to keep taking them to avoid this. However at least in my case this was a rebound effect as my body had become used to the PPI. I ended up coming off the PPI gradually (and I have never had reflux once I was off them for a while. Of course this is anecdotal (and I am by no means a medical professional), but I just wanted to mention in case your son gets a lot of acid reflux when coming off them- it's likely that this is just the rebound effect and that it will settle once his body gets used to not getting the PPI. It might also be a good idea to discuss how to best come off them with the GP. I actually just had a quick google about effects of coming of proton pump inhibitors and here is one of the more recent reviews, just in case you are interested (not sure this is the best one but the scientist in me couldn't just let it be without providing at least some evidence) : Problems Associated with Deprescribing of Proton Pump Inhibitors - PMC (nih.gov) 

Has your son been tested for SIBO (small intestinal bacterial overgrowth)? This can contribute to the symptoms he is describing (bloating, weight loss etc) and one of the risk factors is long-term use of proton pump inhibitors. Essentially SIBO is when the bacteria which colonise the large intestine also start colonising the small intestine, where they are not meant to be and cause issues. It might be a good idea to mention SIBO to his doctor and to possibly have him tested for it- The most common way of testing is with a breath test :)- there are different versions of the test and you can even buy home test kits (If you want I am happy to share what else I know about SIBO and the tests- I read up quite a lot about it recently). Doctors don't always think of SIBO, but it is common among individuals with IBS symptoms and there are treatments so it might be worth mentioning it and seeing what his doctor thinks.  

Also has he been tested for lactose intolerance? What about fructose malabsorption? I'm just going to list everything I can think of so you can ask his doctor. 

I also tried changing all kinds of things in my diet to try and improve my digestion. This has at times led to quite restricted diets as I essentially just ended up eliminating almost everything and only ended up eating a handful of foods... Cutting out certain foods/food groups did help a bit but even with a very restricted diet I still had digestive issues... in the end I always had to expand my diet again as I ended up loosing too much weight. I also have a tendency of eating the same thing over/over and I love routines so I can easily get stuck eating only very few food items. I have identified some foods which are definitely triggers for me though (garlic/onions, dairy, some types of wheat/gluten-containing food, though actually there are types of bread that do work for me etc.)- it makes no sense for me to list them as I think it is quite individual. I have also been on the low FODMAP diet for quite a long time and it did help a bit too, but again it is a fine balance between ending up eliminating too many things and as far as I know the recommendation is to not permanently stay on a low-FODMAP diet. It might be useful though to download the Monarch University Fodmap app though to have a look at the FODMAP components of certain foods, so if he does feel like he reacts to something he can look up which FODMAPs are in that food... Also foods that are low FODMAP (for that portion size) in the app are foods that are more likely to be well tolerated- When I tried to reintroduce more variety into my diet I sometimes found it useful to pick foods that were deemed 'green'/low FODMAP by the app. However, I had to be a bit careful as I got overly obsessed about it for a while- now I just use it more as a tool to guide me. Low FODMAP Diet App | Monash FODMAP - Monash Fodmap Apart from FODMAPS, fibre is another factor that I know has an impact on my digestion. Also I learnt that there are sometimes considerable differences between different versions of same food- eg. bread- I always thought bread and gluten was a no-go for me but turns out that some types of bread (I think it depends on the type of flour and mainly the fermentation process) work very well. 

Artificial sweeteners and caffeine are quite common triggers that I also react to. 

For me it is also a matter of what I eat over the whole day vs just at a single meal- for example if I have  bread in the morning that might be fine, but it might not be ok if I also had more bread or other foods I struggle with for lunch and for dinner. Or if I have a combination of foods that I am sensitive too in the same meal (eg. restaurant pizza is a disaster for me). 

What I realised is that I can tolerate most things better in smaller portions. I've tried all kinds of meal/snack patterns: I had a period of 2 monster meals a day which was a disaster for my digestion (I did this as I struggled to face eating and wanted it over with in as few sessions as possible). I think what has worked best for me is to have small regular meals/snacks: usually 3 meals and 3 snacks  per day (and at times when trying to gain weight I've eaten even more often sometimes). Eating frequently helps my digestion and it is also easier as I struggle to have large portions in one go without feeling ill- so by eating more often I can manage to eat more food over the whole day with less digestive issues... It can be a bit tiring though to have to eat so often... I think again it really depends on what works best for each individual- but has your son tried experimenting with how frequently he eats? 

Another big factor for me is stress... It took me a long time to accept this and a lot of convincing from my dietitian but it plays a big role for me. Same food, different circumstances/stress levels and one time it may be fine and the other time not. My mum has similar digestive issues to me (she might also be autistic) and for her stress is also a huge factor.  

The one thing that has helped me with my eating issues (and my mental health in general) is my dietitian- She is so caring and knowledgeable and is in fact the only professional so far that has made a positive impact onto my mental health (and I have seen quite a few people and am also currently in therapy... which so far has been useless). She has experience with autistic individuals (and is in fact the person that picked up on me being autistic). She probably saved my life as I was quite dangerously underweight at times. Unfortunately sessions are quite expensive (my university helped fund her sessions initially as I needed urgent support)- Here are her details just in case: home | dalia weinreb (dalianutrition.com)

What has helped me in the past with nausea is ginger tea- maybe your son could give that a go? You can also get ginger capsules but I haven't tried them recently (I am very reluctant to taking anything...). Other options you could ask his GP about are probiotics (I've been prescribed some recently but haven't collected them yet...). I also was on medication to try to stimulate gastric emptying but it did not help me.... 

The last thing I just want to mention is probably not relevant but I will just say it as it caused me a lot of problems.... I never deliberately lost weight and my eating issues were not motivated by weight/shape concerns. I ended up with restrictive/limited diets mainly due to my digestive issues/ fear of digestive issues and in part due to love for routine and ARFID-type issues... but I was not believed by some of my doctors who thought I must have anorexia nervosa. I made the mistake of trying to convince myself that I must subconsciously have some kind of typical eating disorder- I think part of me was frustrated that even my eating issues did not seem to conform to the norm... and I felt like if I did have anorexia nervosa maybe someone could help me and at least I would fit the label. I ended up trying to fix a problem that wasn't there and it contributed to me starting to have issues with binging and overeating. I was so desperate to put on weight at times that I resorted to any means to do this... (junk food, forcing myself to eat much more than was good for me... binging etc.)- of course this behaviour was positively reinforced as everyone was happy when I gained weight and if I tried to explain about the overeating/binging I would not be believed about that either (doctors often thought I called a regular meal overeating...) I tried to tell myself that my digestive issues were all in my head and that I had to just force myself to eat more and to just eat all the foods that were real triggers for me. This caused a lot of physical suffering and also emotional damage, which my dietitian is now helping me address (She is very insistent that I do not have anorexia..., which is what I knew deep down all along). Now I not only struggle with the digestive issues and associated undereating but also with binging, stress eating and using food as a coping mechanism. Sorry that I went on so much about this but my main point is to not let yourself be convinced of something you know is not true. I also regret ever trying to get help from the eating disorder service- the people I saw there unfortunately had very little understanding for ARFID-type and autism related eating issues. 

I'm so sorry this whole post has become so long- as you can probably tell digestive issues/ eating is something I have spent a lot of time trying to figure out... I hope I didn't talk too much about my own challenges. I hope that this gives your son some ideas he can try or some things he can mention to his doctor... I can only talk from personal experience though (and I am not a medical professional) and these things are so individual so I think it's all about finding out what works for him. I hope it gets better for your son, it can be so hard to suffer from digestive issues. 

i am in my 30s and have always had digestive issues stomach pain.  im at my wits end with it, it doesnt seem to mater what i eat or dont eat its the same.  i have the most boring bland diet my the issues dont seem to improve.  it really gets me down