Autism and gastrointestinal (GI) disorders

I accepted the risks, and I always knew that there was a chance of failure, so I am where I am.

There's nothing to be sorry for. Without having this conversation with you and the other people in this thread, I wouldn't have found out that there could be a link between our neurodiversity and our GI issues. It cannot be a coincidence that so many people with autism also have GI-related issues.

I also wouldn't know about the ReflexStop treatment, which is something I am going to look into, so thank you very much for that!

I know a few people with problems, one who has a REAL doctor in Italy working with her on these issues. She suddenly had problems after shellfish poisoning and while trying to repair her gut, has encountered all kinds of difficulty getting back to where she was but did go through a week on / off regiment of a very low dose of anti-biotics then probiotics.  I've had unknown dietary issues my whole life. My grandmother would talk about her father's 'stomach problems', so we know it's in the family.

Some time ago I found a bit of research had identified a missing enzyme in certain biologies in relation to "gluten" issues. We do know there is a great deal more gluten in grains today than even 50 years ago. Pesticides and chemicals are causing problems as well as some of these modifications. A new crop of wheat in Mexico has been produced to be drought and insect resistant. And yet, if an insect can't penetrate it, why do we think the human gut can?  

I had cut out gluten nearly 20 years ago, initially a doctor thought it was sugars/yeasts, but found most grains still caused issue. More recently, I've gone from only Oats (which are a different type of grain species) to completely grain/grass/cereal free. Fun fact: sugar cane is a grass related to wheat. The biggest problem is contamination and Cover Crops.

I discovered problems with the Legume family and recently happened across a woman who follows an ancient diet and steers clear of these altogether. I was able to eat a bit a tiny amount of hummus and peanut butter until about 5 years ago, and then no. Same with the entire Mustard Family. Legumes, if not soaked properly rob nutrients, especially minerals, and like the grass family were traditionally animal fodder. Fun fact: The peanut is a bean not a nut! The coffee bean is a cherry pip, vanilla beans and cocoa beans are seeds.

Around the time I went off gluten I also kept noticing Spinach was creating problems. So have also steered clear of Insoluble fibre. 

Refined sugars do seem to create blocks in constitution, dehydration is also a problem I've had to mind. So, I have to keep my salt intake up, a little natural sugar is good for hydration and cranberry or black current also good. Lemons seem to be a one-hit-wonder. They fix gastric issues in a pinch. It seems few understand that Lemons have an alkalising effect neutralising stomach acid. For some reason the term "acid" has been confused even by GPs to mean citrus. 

NEXT: I've found hormone regulation plays a role in being 'regular'. As does a mushroom / nootropic tonic to boost the gut-brain axis. And finally, ensuring I'm getting enough B's and iron.

So, this is probably 30 years of vigilance. My diet includes natural and food-based supplements (herbal hormone balance), mushroom based immune building drops, a multi which is meat based and a pro biotic. 

Omitting Legumes, Grains, Brassicas, I have a diet that appears something between FODMAP meets Paleo: All fruits / berries, anything from the sea, daisy and chicory family lettuces, cucurbits, properly soaked seeds/true nuts, non-toxic fungi, meat. I try to stick to organic since I can eat small and specific. 

A fellow FODMAPper!

I will deviate from it for special occasions and suffer the consequences. 

I have no idea if my problems get worse because of environment or diet changes. I only managed to figure out what causes me panic attacks that I also have for years. 

The diverticular disease is the only major problem. I have occasional flare-ups, where I can lose blood and then have to 'rest my gut' i.e. starve myself (no solid food) for up to 7 days.

BeagleDad said:

I had fundoplication surgery to repair my hiatus hernia to reinforce my valve with part of my stomach and a titanium implant

I'm really sorry to hear that neither of those procedures worked for you. It must be so disappointing, despite having understood the risks beforehand.

I do feel very fortunate that my LINX implant (the same gadget as yours, I'm sure) is currently working so well - especially given the struggles that I had whilst my vagus nerve adapted to it. There's no guarantee that I'll stay PPI free, but so far so good.

Do you know about the latest surgical intervention, RefluxStop?

https://refluxuk.com/treatments/refluxstop

https://www.linkedin.com/pulse/surgical-solutions-reflux-overview-fundoplication-linx-refluxstop-by1fe 

This is VERY interesting.

I have had reflux since I was a baby and I went on medication to control it. When my medication became ineffective, I had fundoplication surgery to repair my hiatus hernia to reinforce my valve with part of my stomach and a titanium implant by wrapping it around my oesophagus. My surgery failed to resolve my problem but this was always a risk that I was aware of. My medication was changed and increased and I have been managing by taking that ever since.

I was diagnosed with Barrett's Oesophagus at the time of the my first surgery.

This is very interesting. It's quite interesting that you have managed to resolve your issue.

Do you have any other GI-related issues other than this?

I am the same. I have had operations throughout my life to correct issues, none of which have ever actually helped at all.

I follow the FODMAP diet and if I deviate away from it for more than one meal, then I suffer the consequences of doing so for days/weeks afterwards. Generally, I won't eat away from home because even when I go somewhere "trusted", I always end up regretting it.

I am generally okay if I stick to a diet plan and take my Esomeprazole on time every day on time.

If, however, I get stressed or overstimulated, this can impact my GI system. I have been trying to keep track of changes in my GI with things that are going on in my life rather than keeping the two separate. When something is going on that is causing me physical or emotional stress, my GI system starts to get upset too.

Generally, I won't eat away from home because even when I go somewhere "trusted", I always end up regretting it.

I take Esomeprazole and if I forget to take it for one day then I cannot sleep either. It also then disrupts my eating schedule which ultimately leaves me with an upset stomach, etc. which can take days/weeks to get balanced again.

I only know about this because I have been doing a lot of research into conditions that may mask a diagnosis of autism and GI issues like acid reflux is high up on that list.

Not that I'm aware of,but I've never  tried anything like an elimination diet..

I also have a long history of GI problems and learned about the association whilst preparing for my ASD assessment last year (which resulted in diagnosis).

After delays due to a disbelieving GP, I was diagnosed with GORD at age 9. I'd also been told that I'd be on medications for life, but the top dose became increasingly ineffective. A couple of years ago, I had surgery to repair my hiatal hernia and reinforce the valve with an implant. Since then, I haven't needed any PPIs.

I also have diverticular disease with complications and Barrett's Oesophagus.

I have had chronic and severe indigestion, which I resolved, and diverticular disease, which is still a problem. I was investigated for a suspected stomach ulcer, but nothing was found. I still had agonising indigestion, but eventually the penny dropped and I put two and two together. For a number of years I could not drink cask conditioned beer without horrible stomach pain. I reviewed what I was regularly consuming that might be related to cask beer and I thought yeast! Cask beer and leavened bread both contain yeast. I cut out leavened bread from my diet and my stomach symptoms disappeared completely. I obviously have a food intolerance for yeast.

I've had stomach issues my entire life. I required a few operations when I was born. My diet is quite limited these days and have bought some of the most annoying night time symptoms under control in the last year by cutting out fermentable sugars (Google FODMAP). Food is no longer fun, or if it is, I have to resign myself to problems for a few days after.

I have other problem also lasting my whole life - bloating, flatulence, often diarrhoea. Doesn’t matter what I eat or drink, it’s always like this. But often getting worse, this is one of the reason why I avoid trying new foods and restaurants generally. 

I haven't been diagnosed with anything that I know of, but I am prescribed Omeprazole, which I can afford to forget to take for exactly one night before sleep becomes impossible. I didn't realise it could be autism related. I always figured it was diet induced.

No, I haven't. I was only diagnosed with ASC a few months ago, aged 65.

Interesting. I know there are studies on Coeliac Disease and it's links to autism but I don't personally have it. Have you ever done any research into the two being linked?

I have Coeliac Disease and have had it since infancy.