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Asperger's and Irritable Bowel Syndrome

RachelleG

Well-Known Member
V.I.P Member
It's a well-known fact that people on the Autism Spectrum have digestive tract disorders. In my case, my irritable bowel syndrome (IBS) became severe in my early 20's. I am now 47 and the intensity of my IBS is getting worst. I have tried dietary changes, probiotics, and countless other things and none of these brought my IBS under control. I know take 3 types of psychiatric medication at maximum dose and that is barely enough to keep my symptoms under control. In short, my IBS is all about Anxiety and my Anxiety is all about IBS. With that in mind, I would like to know if anyone else with Aspergers experiences the problems that I have and I would like to know if they found successful treatments.

Thank you,
Rachelle
 

Streetwise

Well-Known Member
V.I.P Member
my physiognomy is a testament to irritable bowel syndrome ,I rely on mindfulness ,antacids, yoghurt ,bland fruit juices ,decaf coffee and tea, cooked foods( Fish ,chicken) standing still if I possibly can, sitting still if I possibly can ,sleeping as much as I possibly can.
avoid contact with humans .
i'm still not successful .
 

Full Steam

The renegade master
V.I.P Member
I'm still trying to get a dx on my gut issues.

It may be IBS, and I'm kind of assuming it is, and I'm going to try the FODMAPs diet.

My plan is to keep treating the symptoms and never stop looking for the root cause. IBS, seems like set of symptoms not a cause to me.

I think it may be a parasite or infection that causes mine.

Have you had extensive checks for gut bugs?
 

Streetwise

Well-Known Member
V.I.P Member
I'm still trying to get a dx on my gut issues.

It may be IBS, and I'm kind of assuming it is, and I'm going to try the FODMAPs diet.

My plan is to keep treating the symptoms and never stop looking for the root cause. IBS, seems like set of symptoms not a cause to me.

I think it may be a parasite or infection that causes mine.

Have you had extensive checks for gut bugs?
One of the signs of IBS is you enjoy flatulence,yes strange as it sounds that is one of the signs
 

Full Steam

The renegade master
V.I.P Member
One of the signs of IBS is you enjoy flatulence,yes strange as it sounds that is one of the signs

I don't have some of the classic signs. No flatulence, no D or C.

I get a bloated stomach after eating animal protein, fats and maybe some FODMAPs. It gets that bad it gives me serious back pain.

I've had scans and blood tests and they all came be clear. I'm thinking maybe a parasite, SIBO and maybe IBS.
 

LucyPurrs

NT, INFJ
V.I.P Member
I don't have some of the classic signs. No flatulence, no D or C.

I get a bloated stomach after eating animal protein, fats and maybe some FODMAPs. It gets that bad it gives me serious back pain.

I've had scans and blood tests and they all came be clear. I'm thinking maybe a parasite, SIBO and maybe IBS.

Have you been tested for food allergies Steam? That doesn't sound like classic IBS at all which usually involves D or C or both.
 

Full Steam

The renegade master
V.I.P Member
Have you been tested for food allergies Steam? That doesn't sound like classic IBS at all which usually involves D or C or both.

Short answer - yes.

Long answer-

That's where my search began about 6 years ago.
I thought all my issues had a single cause, and went to doctors and an allergist.
I'm not allergic to any food, but I do have problems with sulphites and sulphur, and maybe ammonia.

Got blood tests - clean.
Parasite tests - clean.

That lead to the methylation cycle and gene testing, adjusted my diet and took supplements to support methylation.

I have a methylation specialist GP who is great. More blood tests, and supplements to improve bloods, zinc, p5p, b6.

I then finally came to Autism 18 months ago and got dx for Aspergers and ADHD.

Adjusted diet again to reduce glutamate which triggers ADHD.

My gut problems come in attacks, especially after eating meat and fats, and include nausea and brain fog.

Waiting now on tests for pyroluria, parasites and more general bloods.

I now have a naturopath who has prescribed probiotics, kefir, broths (no bone broths as too much glutamate), and full parasite poo panel.


That's a very brief over view, and skips the literally thousand of hours research and self hacking I've done over the years.


I don't give up, and I will find a way.
 

LucyPurrs

NT, INFJ
V.I.P Member
Wow, well if you use probiotics try to find the refrigerated type with at least 50 Billion organisms. Have that from a very educated source who has a lot of experience with them and that's what I use. Mine works wonderfully for colitis which is totally under control.
 

1111Alice7447

Well-Known Member
Our guts are extremely unique. what irritates one persons gut will be fine for another.

What works for me (and has reduced my ASD negative symptoms so so much) (This is not advice, just what has helped on a very confusing journey where ive tried EVERYTHING:

*No caffeine or stimulants - I drink decaf tea, decaf coffee, ive quit the ritalin (Ashwaghanda is a non-cardiac stimulant so it wont mess with anxiety but can help with energy and focus)
* no animal products - Dairy gave me a lot of issues, meat agitated my gut and emotions
*No sugars or grains - no fruits, grains, flours, wheat, no natural sugars like maple syrup or honey. No potatoes or starchy veg like sweet potato. Rarely I will have pumpkin.
* probiotic foods (not supplements) homemade coconut yoghurt, coconut water kefir, decaf kombucha, saurkraut, ACV (store-bought, but raw), kimchi
*Tumeric and ginger everything - the roots or dried spices: juice shots, golden milk lattes, tea, add to most dishes (anti-inflamm and soothe your gut)

Its basically a vegan version of the GAPS diet ("Gut and psychology syndrome"). Based on: Plant proteins (beans, tofu, nuts, legumes, fermented protein powders, bean flour) + non-starchy veg (cauliflower, broc, greens, celery, brussell, cabbage, carrots, tomato, salad veg etc..) + healthy fats (olives, avocado, coconut oil/cream, coconut butter etc..) + probiotic foods. I have a lot of slow-cooker vege soups and stews, stir frys, green juice, protein smoothies, salads, buddha bowls, protein+bean chocolate brownies, bean/lentil pastas, 90% or sugar-free dark choc etc..

Its been so helpful for me, but I know most people would find it too restrictive

Some youtubers who do similar (but not the same thing) are: theveggienut and healthycrazycool
I use these for inspiration but still stick to my own guidelines and just make swaps
 

tlc

The Mackinac Bridge and U.P. is my happy place.
I don't think there's one part of my digestrive tract that works properly. Born with hirschprungs, surgery to that led to blockages and more surgery and finally having to just deal with it. Was well versed with anatomy by age 8. Achalasia, acid reflux, IBS. Sometimes body slams when things move. The IBS seems to be under control the most when I avoid beef. Some movie with the guy from American Pie, yeah it's like that. Otherwise it's normal not to go for 4 days to 3 weeks. When I get the birthing cramps I just go somewhere I can be undisturbed for hours. I got some control but once I break the seal it's all over. I miss the 2nd bath in the old house.
 

Andrew206

Well-Known Member
I currently have a bloated stomach, and have avoided all sodas. I've even tried adjusting my diet to include avoiding sugar. I'm going to try avoiding caffeinated coffee and see if that helps. If not, I'm going to see a doctor.
 

Hallzers

New Member
Here's how to fix it:
(You might not like it, but this will absolutely work)

Eat raw. If its raw, you can eat it. If its processed or cooked, you can't. You'll hit the toilet 6 - 10 times per day, but you will feel absolutely great. Massive energy, weight loss, tighter skin, clear eyes, clear complexion, feeling younger, chronic health problems go away, swelling goes away, better focus, improved coordination, never any acid reflux etc... its a huge improvement.

The downside is you'll crave cheeseburgers, tacos, pizza, chips, etc. And... that sucks. But the cravings subside after a while and you adjust.

Try it for 3 full days to clear out your system to see the difference. 3 full days. You'll feel great and want more and more. Then chow down on a big pizza and wash it down with a chocolate malt and a big sugary soda, and you'll feel like crap again. Try it and see.
 

John H.

Member
1.

I was surprised to find a number of studies indicating that vitamin D insufficiency is common in ASD.

The available evidence suggests that low vitamin D status is common among the IBS population and merits assessment and rectification for general health reasons alone. An inverse correlation between serum vitamin D and IBS symptom severity is suggested and vitamin D interventions may benefit symptoms. However, the available RCTs do not provide strong, generalisable evidence; larger and adequately powered interventions are needed to establish a case for therapeutic application of vitamin D in IBS.
Vitamin D plays an important role in reducing inflammation. While the studies are inconclusive, as they so often are, I think it is important to have your vitamin D status checked. The ideal range is 70-90 but don't let it go over 100. The best supplement form should be vitamin D alone(no calcium!) and taken with a meal containing fat because D is fat soluble and the fat will aid absorption.

2.

A recent study claimed that vitamin D may not work without sufficient magnesium. Magnesium deficiency is common. Peanuts are a good source. If you choose a supplement be careful of taking too much because too much will result in very loose stools. Ideally magnesium status should be checked.

3.

Increase intake of cruciferous vegetables. There are a few small trials that indicate an important component of cruciferous vegetables, sulforaphane, can help behavior modification for those with ASD. Additionally sulforaphane provides sulfur proteins which are essential for a key antioxidant, glutathione, and there is some evidence to indicate glutathione deficiency is present in some people with ASD. Do not consume raw cruciferous vegetables because there is an anti-thyroid component in the raw vegetables that is destroyed in cooking.

4.

Food elimination strategies should be undertaken. Food sensitivities are an issue in ASD.

5.

Mostly plant food. Also think about trying diary elimination, see if that helps.

6.

If possible, try the intermittent fasting routine: 18 hours no food, 6 hour food window. This allows the gut to rest. I'm not sure that will help but it is worth trying.

7.

Change your fat intake. Focus on monounsaturated fats. Avoid high temperature cooking.
 

Bolletje

Overly complicated potato
V.I.P Member
I’ve had A-IBS ever since I suffered from a severe infection as a kid over 20 years ago. Some days I have no trouble at all, some days are pretty bad. To get to my job, I have a 90 minute commute on public transport without bathrooms. Even though I love my job, some days I consider quitting because of the commute. I didn’t have a lot of trouble during my first months there, but after having a near accident (had to ask the bus driver to pull over, so I could take a dump on the side of the highway - not my proudest moment) I suffer a lot of anxiety from the moment I set foot out the door until I enter my workplace.

Stress and especially anxiety are my biggest triggers. I’ve also kept an extensive food journal to figure out my specific food triggers. For me, it’s mainly onions, garlic, raw vegetables, fatty food, spicy food, tomatoes and tomato sauce, some types of nuts, chocolate, peppermint, alcohol, apples, coffee, and some types of legumes. Most probiotics actually make it worse. Supposedly beneficial spices such as turmeric or ginger have no discernible effect on me.

IBS being what it is, some days a glass of water is enough to have me running for the bathroom. I just make sure to stay hydrated, eat plenty of vegetables and get enough fiber in my diet. And since my favorite food mostly contains triggers, I just willfully accept the consequences after (or during) dinner.

For me, paying as little attention as possible to my misbehaving bowels is the best option, since they try very hard to mess everything up. It used to dominate my life, and I got fired from multiple jobs because I took too many sick days. I’d stay home because I was anxious over my gut misbehaving, which would at course trigger symptoms. Anxiety over repercussions of my sick leave made the symptoms worse, and so on.

I know my symptoms are the worst in the beginning of the day and gradually decline during the morning, whether I stay home or not. So I just go to work. I’d be lying if I said I’m in control, because let’s face it, we never are. But I try not to let it ruin my life too much. Even so, I feel like an old lady sometimes when sitting down causes me to flinch because a flare-up has gifted me with humongous hemorrhoids, or even worse, fissures. Over the years I’ve had more strangers poking around in my butt than I care to remember. At least all of them were doctors (I think :p ), heheh.

*Note to self: do not write about IBS on commute while on said commute. Cramps are flaring up now.
 
Last edited:

RainbowAura

On the outside wishing I was something
I have severe stomach issues especially the past few months
In 2016 I got diagnosed with a hiatus hernia. Since I got that I’ve been not the same person. It has shaped my character to appreciate health. I’ve been in so much pain it is exactly like a heart attack. I was having severe chest pain for a month straight.I thought I was dying.I have only assumed it was esophageal spasms...these are scary.
I’ve had so much weird and strange symptoms with it.....
I’ve been mistreated, hurt and ignored for my symptoms. I have lost weight and it hasn’t helped. I’m always constipated..(frequently impacted) sometimes burping consistently for days and having severe gas pains it’s like in labour. I can’t figure out the cause. I tried gluten free it helped but can’t find much of a connection to gluten and my stomach pain all the time... no one will do any other tests. I’m sick of the pain I’m in. It’s so bad it makes me sick and dizzy
 

Full Steam

The renegade master
V.I.P Member
Wow, well if you use probiotics try to find the refrigerated type with at least 50 Billion organisms. Have that from a very educated source who has a lot of experience with them and that's what I use. Mine works wonderfully for colitis which is totally under control.

It's worth looking at Kefir.

I make my own.

It has 40 - 50 different pro-biotic strains, and it has far more CFU than any shop bought stuff. Plus, since it's actively fermenting when bought, the bugs are in the best possible state to colonise your gut.

Plus, once you buy the grains, you only pay for the milk.
 

John H.

Member
Stress and especially anxiety are my biggest triggers.
Yes! There is research indicating that anxiety is a very strong trigger. So we have two separate issues here. BTW, in days gone by upset digestion was recognised as a possible sign of depression.

I wonder if other people have experienced the following. Sometimes I can experience pain or discomfort that exists for no other reason than I am thinking about it. If my attention is turned way, even if I consciously choose not to become focused on the pain or discomfort, it vanishes; and it is only days latter I realise that the issue has resolved.
 

Bolletje

Overly complicated potato
V.I.P Member
Sometimes I can experience pain or discomfort that exists for no other reason than I am thinking about it. If my attention is turned way, even if I consciously choose not to become focused on the pain or discomfort, it vanishes; and it is only days latter I realise that the issue has resolved.​

I very much agree. That’s why I usually bring a book and headphones on my commute, or do some prepping for work. Distraction is key. I can actually make symptoms appear by thinking of them.
Yesterday I was halfway on my way to work when I had a rebellious thought going “hey, I haven’t felt anxious about bathrooms yet!”, and boom, instant abdominal cramps.
 

Full Steam

The renegade master
V.I.P Member
Our guts are extremely unique. what irritates one persons gut will be fine for another.

What works for me (and has reduced my ASD negative symptoms so so much) (This is not advice, just what has helped on a very confusing journey where ive tried EVERYTHING:

*No caffeine or stimulants - I drink decaf tea, decaf coffee, ive quit the ritalin (Ashwaghanda is a non-cardiac stimulant so it wont mess with anxiety but can help with energy and focus)
* no animal products - Dairy gave me a lot of issues, meat agitated my gut and emotions
*No sugars or grains - no fruits, grains, flours, wheat, no natural sugars like maple syrup or honey. No potatoes or starchy veg like sweet potato. Rarely I will have pumpkin.
* probiotic foods (not supplements) homemade coconut yoghurt, coconut water kefir, decaf kombucha, saurkraut, ACV (store-bought, but raw), kimchi
*Tumeric and ginger everything - the roots or dried spices: juice shots, golden milk lattes, tea, add to most dishes (anti-inflamm and soothe your gut)

Its basically a vegan version of the GAPS diet ("Gut and psychology syndrome"). Based on: Plant proteins (beans, tofu, nuts, legumes, fermented protein powders, bean flour) + non-starchy veg (cauliflower, broc, greens, celery, brussell, cabbage, carrots, tomato, salad veg etc..) + healthy fats (olives, avocado, coconut oil/cream, coconut butter etc..) + probiotic foods. I have a lot of slow-cooker vege soups and stews, stir frys, green juice, protein smoothies, salads, buddha bowls, protein+bean chocolate brownies, bean/lentil pastas, 90% or sugar-free dark choc etc..

Its been so helpful for me, but I know most people would find it too restrictive

Some youtubers who do similar (but not the same thing) are: theveggienut and healthycrazycool
I use these for inspiration but still stick to my own guidelines and just make swaps


very interesting.

I'm looking at the GAPs diet now, and if I do it I'd do either very low meat or vege - not sure which.

What did you find problematic with starches?

I think I may have problems with that too, but after dropping most dairy, all gluten and most preservaties I'm maybe in denial about dropping rice and potatoes.

Not sure I can face no sushi, or chips ever again.

Have you also cut out corn?

I'm taking Ritalin sometimes now, but looking to change to Catuaba if it works. AShwaganda didn't work for me last I tried, but then I had bad adrenal fatigue which is now under control.
 

SusanLR

Well-Known Member
V.I.P Member
So many different things help and many different things bring it on for people.
I had to start self research and trial and error, but, mine is much under control now.

Main causes for me are anxiety, stress, and certain foods.
I find caffeine to be the worst. I love cappucino and lattes.
Once I got myself under control, I now allow a treat of one occasionally. Other foods are onions, marinara sauce, pizza unless it is white ricotta, and corn.
Plus any food that is spicey.

Probiotics didn't help. The FODmop diet didn't help.
Eliminating dairy didn't help. Kiefer helps some.

I have certain supplements that seem to have really helped.
Turmeric, Omega fish oil (but only one type that is burpless- SuperIomega), spirulina, bromelain and papain for digestion and raw garlic. I've learned to take tiny bites of that and swallow them with tea so there is no taste or burning in my mouth.
Blood work shows I am low in vitamin d. Doctor told me to take 1000 mg every other day. Ok with that.

Meats do not seem to bother me, but, I eat very little red meat. Chicken, fish, pork are better. Greens and raw veges too. No sodas. Water and green or white tea.
Easy on sugar.
I know it's different for everyone, but, this has worked for me.
 

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