Gastro-intestinal Issues (autism)

Hi, I’m autistic and have had gastrointestinal issues my whole life and more so in recent years- lots of nausea, bloating, not knowing when hungry or full and I often struggle to maintain my weight. I also have sensory sensitivities with regards to food, can get stuck in routines and sometimes go through phases of eating same food every single day. I always thought I just had to figure out the trigger foods that would set off the digestive issues and eliminate those, or that I had to eat differently etc. There are trigger foods but this approach of only focusing on the food didn’t get me very far- I ended up eliminating a lot of foods (eg was on low fodmap diet for long time or even more restrictive because I felt that any other foods would make me ill). And whilst my digestive issues were better on these very limited diets, they still flared up sometimes and when I tried a new food it would be really bad. I then went through phases of expanding my diet again but never felt good and unconciously would end up cutting out a lot again. It wasn’t helped that I was misdiagnosed with anorexia nervosa due to my weight loss even though it was unintentional snd and I was desperate to gain weight. I only started better understanding my digestive and eating issues when I was diagnosed as autistic. And I was helped a lot by my dietitian who has a good understanding of autism.

It is only recently that I am fully beginning to understand and acknowledge the impact that stress and anxiety can have on digestion. It is not necessarily always the food that triggers digestive issues. There are of course some food triggers/ foods that might be harder on my digestion but it doesn’t play as large a role as I thought. The other thing I learnt when I recently expanded my diet is that you can build up your tolerance to foods that might be harder on your digestion- I was essentially living off eggs, whole grain toast and apples, carrots for a while before this and when i first introduced new foods again my digestion was awful. I persevered though and it took 3-4 weeks to get a bit better- now 4-5 months later I can eat things i never thought i could (even things with garlic and onion and lentils, chickpeas and a bit of dairy, i can tolerate some spice again too). I think when you are on a restricted diet your gut microbiome also suffers and it takes time to correct that. I still have digestive issues sometimes sadly (today actually) but I can tolerate a much wider range of foods and am much less anxious about trying new things . 

The food itself can play a role but I think it is important to also look at other factors, like stress, anxiety or the environment in which you eat. I used to be puzzled- I could have the same meal twice and once i would be fine, the other time not. Then i realised if I ate at work I was more likely to have issues. I also started seeing links between IBS attacks and stressful events etc.  At the moment I can’t really eat socially as it feels too overwhelming and often also is too loud and distracting. Another example is travelling- always feel ill nauseaius etc - part of it is motion sickness but a lot of it is the stress associated with travel and change. 

What can help is to keep a food diary for a while maybe- write down times of meals and what they were and also where you had them/ any thoughts/ relevant events etc. This can possibly help see a link. Though sometimes I also think writing it down can be counterproductive as an eat and forget approach can be good too. 

in terms of the eating itself there are also things you can try- I now know that I do best with frequent small meals and snacks - other people might feel better with fewer larger meals. I try to have protein, carbs (lots of whole grain) and vegetables with every meal. And I have let go of conventions- I really struggled with breakfast - as a child it was cake/cookies which is awful for my IBS (and probably also not the healthiest start) and I later really struggled to have anything other than fruit for breakfast- i now know that the reason I struggled is because i simply do not like breakfast food- and now I happily have pasta or curry or stirfriys or whatever I fancy for breakfast. Similar issue for me with snacks. Basically I think what is best is to eat what you like (within reason) and forget about conventions- because if you enjoy it you are also more likely to feel ok afterwards (there are exceptions of course but I think if eating is a pleasant experience and you are relaxed it already helps digestion and makes you more likely to not have an IBS attack) 

I’m sorry if i talked so much about my own experiences. I hope you can maybe relate to some of it. 

I am also happy to share the details of the dietitian who is helping me- she is amazing and has made such a positive impact on my life- she is the person that realised I might be autistic and she is helping me a lot.

Hi, I’m autistic and have had gastrointestinal issues my whole life and more so in recent years- lots of nausea, bloating, not knowing when hungry or full and I often struggle to maintain my weight. I also have sensory sensitivities with regards to food, can get stuck in routines and sometimes go through phases of eating same food every single day. I always thought I just had to figure out the trigger foods that would set off the digestive issues and eliminate those, or that I had to eat differently etc. There are trigger foods but this approach of only focusing on the food didn’t get me very far- I ended up eliminating a lot of foods (eg was on low fodmap diet for long time or even more restrictive because I felt that any other foods would make me ill). And whilst my digestive issues were better on these very limited diets, they still flared up sometimes and when I tried a new food it would be really bad. I then went through phases of expanding my diet again but never felt good and unconciously would end up cutting out a lot again. It wasn’t helped that I was misdiagnosed with anorexia nervosa due to my weight loss even though it was unintentional snd and I was desperate to gain weight. I only started better understanding my digestive and eating issues when I was diagnosed as autistic. And I was helped a lot by my dietitian who has a good understanding of autism.

It is only recently that I am fully beginning to understand and acknowledge the impact that stress and anxiety can have on digestion. It is not necessarily always the food that triggers digestive issues. There are of course some food triggers/ foods that might be harder on my digestion but it doesn’t play as large a role as I thought. The other thing I learnt when I recently expanded my diet is that you can build up your tolerance to foods that might be harder on your digestion- I was essentially living off eggs, whole grain toast and apples, carrots for a while before this and when i first introduced new foods again my digestion was awful. I persevered though and it took 3-4 weeks to get a bit better- now 4-5 months later I can eat things i never thought i could (even things with garlic and onion and lentils, chickpeas and a bit of dairy, i can tolerate some spice again too). I think when you are on a restricted diet your gut microbiome also suffers and it takes time to correct that. I still have digestive issues sometimes sadly (today actually) but I can tolerate a much wider range of foods and am much less anxious about trying new things . 

The food itself can play a role but I think it is important to also look at other factors, like stress, anxiety or the environment in which you eat. I used to be puzzled- I could have the same meal twice and once i would be fine, the other time not. Then i realised if I ate at work I was more likely to have issues. I also started seeing links between IBS attacks and stressful events etc.  At the moment I can’t really eat socially as it feels too overwhelming and often also is too loud and distracting. Another example is travelling- always feel ill nauseaius etc - part of it is motion sickness but a lot of it is the stress associated with travel and change. 

What can help is to keep a food diary for a while maybe- write down times of meals and what they were and also where you had them/ any thoughts/ relevant events etc. This can possibly help see a link. Though sometimes I also think writing it down can be counterproductive as an eat and forget approach can be good too. 

in terms of the eating itself there are also things you can try- I now know that I do best with frequent small meals and snacks - other people might feel better with fewer larger meals. I try to have protein, carbs (lots of whole grain) and vegetables with every meal. And I have let go of conventions- I really struggled with breakfast - as a child it was cake/cookies which is awful for my IBS (and probably also not the healthiest start) and I later really struggled to have anything other than fruit for breakfast- i now know that the reason I struggled is because i simply do not like breakfast food- and now I happily have pasta or curry or stirfriys or whatever I fancy for breakfast. Similar issue for me with snacks. Basically I think what is best is to eat what you like (within reason) and forget about conventions- because if you enjoy it you are also more likely to feel ok afterwards (there are exceptions of course but I think if eating is a pleasant experience and you are relaxed it already helps digestion and makes you more likely to not have an IBS attack) 

I’m sorry if i talked so much about my own experiences. I hope you can maybe relate to some of it. 

I am also happy to share the details of the dietitian who is helping me- she is amazing and has made such a positive impact on my life- she is the person that realised I might be autistic and she is helping me a lot.