Digestive issues

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. 

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. 

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.