Gastro-intestinal Issues (autism)

I am autistic and have a number of food intolerances.

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.

Wow that’s a long time it took to get a diagnosis. If it’s okay to ask what age were you when you finally got your IBD diagnosis? It seems that often times they are quick to just dismiss things as IBS or stress related. But I suppose it’s because they are too busy and also maybe IBD in autistic people doesn’t manifest as obvious as it would in a neurotypical person. I think because autistic people because of their communication difficulties might not express the severity of they’re bowel problems very effectively. So I think that’s how it’s gets missed a lot of the time in autistic people. I suppose that’s the value of a colonoscopy because the best way to tell if there is inflammation is to look and see. Do you feel better not that your on anti-inflammatory medication?

Thank you! It took me ~7 years to get a diagnosis. They kept thinking it was "a bug", IBS, and even giardia. Once it got so bad that I looked like I was dying, they finally did a colonoscopy and found it. I'm doing much better now that I'm on Humira and take care to not overwhelm myself.

Mine is definitely related to mental health, so I wonder if it has something to do with the way our nervous systems are built.

That’s interesting. Autistic people are 4 time more likely to have a form of IBD like ulcerative colitis. But it’s hard to get diagnosed with IBD as you have to go for a lot of test like endoscopy. Hopefully you feel better now.

My digestion was fine before I became pregnant at 25.  At first I was told that IBS type symptoms were normal during pregnancy.  Then they persisted and became worse. I became lactose intolerant (as I am to this day).  I developed other new issues such as recurrent sinus infections, recurrent thrush infections, ringworm, interstitial cystitis.  I realised that gluten was part of the problem and cut that out for many years, along with lactose.  The FODMAP diet helped too.  Several years ago I returned to eating gluten.  I now have no digestion issues aside from lactose intolerance.  I do have low folic acid and CFS/ME symptoms such as PEM, though I'm coming out of a long depression/burnout phase.

Other than the odd bout of diarrhoea, and one case of constipation last summer, my bowels are like clockwork. Though anxiety makes me 'dung them'.

I now stick to sourdough bread, and avoid processed food.

Hi there   my son is autistic and yes had severe bowel problem when young he nearly died yes I believe there is direct link as it comes up again and again with people who have aspbergers..why I don't know I'm no doctor...my son had an enlarged and slow bowel he was v ill and basically missed all his schooling .However in adulthood he now can not have bread or rarely and if he does he has to drink lots of water and eat lots of fruit etc. I would just make sure you always have fruit around either fresh and or tinned and do not go a day without it and be mindful to drink lots of water..if realy bad try macgrogol it's available if you go doctors as you have aspbergers they should prescribe it its what my son has its a basic bulk type it basically puts water into the stool so it's easier to pass. I know a lot of people will say oh it's basic self care everyone needs to eat fruit etc..but it's more than that I feel there are bowel issues as somewhere neurological that signal isn't getting through right.

I have ulcerative colitis.  I just learned I'm autistic last month, so I never considered the connection.  I was hospitalized for it several times.  My GI doc would come to visit me at the hospital.  I remember hearing him outside my room speaking quietly to the nurse and telling him that I require "special attention".  At the time, I took it as he knew I was a person that was really suffering from this disease and he was advocating for me.  I always thought he treated me so well.  Welp, it probably was that, but that he also noticed I was autistic and was indirectly telling the nurse so he would know why I'm weird when they ask me questions lol.

I have had stomach problems my whole life.I now have ibs and can't control my bowels all the time and has lead to incontinence.

IBS sucks.

Yeah, I've been on the receiving end of a lot of that treatment- every physical issue I have, as well as my autism, was all dismissed as me being a hypochondriac with anxiety. I do have anxiety, but I've been living in a world built for able-bodied neurotypical people and the anxiety came out of that, it didn't happen the other way round.

Unfortunately a lot of damage has been done as a result of all of this, both physically and mentally. I worry a lot about how many other women there must be out there who are in the same situation I am.

Chronic constipation here. My stomach is super sensitive to my mental and emotional state. In stressful times, I have an upset stomach whenever I eat anything. 

My mouth really enjoyed the few years I spent eating loads of salads, fruits, new foods, etc. My bowel definitely did not. People kept telling me it would adjust. It didn't.

Having a varied diet simply isn't as important to me as being able to go outside every day. That's why I eat beige.

That’s good that you found it interesting. I also find this topic interesting.

Yeh I’m the same. I can feel fine but then after eating my dinner or any meal I feel like rubbish for about an hour until it goes away. I think it’s because my body isn’t digesting things probably hence why I feel like rubbish after eating. It’s good loperamide works for you. Yeh anxiety medication is nearly useless if it’s not getting to the root of your problem. Anxiety medication will only help if you have an imbalance in your brain. But if you don’t have that and your problems are caused by your gut/bowel then obviously they won’t make you feel better because it’s not getting to the root cause. My bowel problems can really ruin a whole day for me by affecting my sleep and my mood. It’s a bit of a vicious circle. 

Same. So often I'll be sitting there thinking "why am I anxious? I've been really happy all day and I'm not worrying about anything." And then I realise what I'm actually experiencing is not anxiety but rather feeling a bit full after eating a meal. I'm so used to any sensation in my stomach meaning that I might need to find a toilet within the next five minutes that I've come to interpret it as anxiety!

Loperamide is like a magic anti anxiety drug for me. I can do so many things on loperamide that would terrify me without it. In contrast, anxiety medication is pretty much useless.

Symptoms don't match at all (diverticulitis often causes constipation, which I've never in my life experienced, and bleeding) and diverticulitis tends to be something that develops during life and flares up periodically, rather than being consistently present from birth.

The key is to take a smaller dose longer in advance. The box claims it works within an hour, which technically it does if you take enough of it, but then yeah you won't go the next day. Blood plasma concentration is highest about 6-10 hours after you take it, depending on exactly what form you take, so the best way is to take it 6 hours before whatever event you need it to be working for, and take the smallest dose possible to have the desired effect. You can even split the capsules to get a smaller dose and eat the powder or dissolve it in liquid - it still works.

Hi.

This is an interesting post to read actually as I've never thought that Autism and digestive issues are linked in some way.

I've constantly suffered from digestive issues from a very young age. I was diagnosed with Reduced Liver Function about 5 years ago (way before I realised I have autism), but have constantly suffered with stomach ache and other digestive issues as well. 

Reading this article has made a lot of sense now - I will re-look into my diet etc and see what works for me - mushroom based diet wouldn't work as I am allergic lol.

Mweekie xx