Do you have any gut issues?

[Jimbo]

I voted for diverticulitis but my guts are actually in the state of North Carolina.

 

[NiceCupOfTea]

I respectfully disagree. I think your thread is still in its early days yet and maybe all the people with gut issues are too busy in the bathroom to keep checking out AC sorry, just being silly. Give it some time. Some people don't use the forum daily. Also, you will probably find more posts about poo on a health forum anyway.

It's no joke with me - I really am in the bathroom half the time <_<.

As for the food intolerances, I probably do have some, but nothing I could pin down - the usual suspects (gluten and dairy) don't give me any symptoms or, rather, no additional symptoms. I even tried a gluten-free diet a few years ago and it made no difference. In fact the strictest diet I went on was an elemental liquid one - nothing should even have reached my colon and I still had horrible gut issues. (Not to mention the drinks themselves were beyond vile.) There is some evidence that a liquid diet can help Crohn's disease, particularly in children: but for me it seemed to make no difference.

I hate myself so why shouldn't my gut torment me? IBS all my life and I am 71 and still not dead. I think the aim is to make myself even more miserable but keep me around for further torment.

If there was a 'I sympathise' button, I'd have pressed it for you, mate :-/

The majority of people on the spectrum also experience sensory issues which leads to malnourishment, various pains, and a dislike for some to be touched because it harms them. Those whose sensory issues are severe enough often have to go to an occupational therapist to help them manage them, and are often times diagnosed with Sensory Processing Disorder. Some also experience severe abdominal pain when exposed to too much jostling, certain smells, certain foods, and pretty much every sense the body can experience due to how they are wired, and the abdominal pain will also show up at any point along their digestive tract.

Don't see how that's connected to what I wrote, but okay?

When certain hormones and glands get off balance, they can have far reaching consequences such as intestinal trouble. Some women with bad menstrual cycles will have severe nausea, diarrhea, and cramping for a week or even two weeks every cycle that can be made worse by food, environment, or anything they contact. Same goes for nutrient deficiencies like B3 or B6. The endocrine system is full of glands that can easily cause pain and malabsorption if they are defective. A hole is just what it sounds like: a hole, a rip, a tear, or natural mutation, and it is not comfortable or good for the body. Each one can be diagnosed by a physician and have been proven to cause issues in the digestive tract on top of the other things they interfere with.

Okay, but I'm really not talking about anything as broad as premenstrual syndrome. Besides, it's not connected to gut issues in autistic people (including children who certainly won't be suffering from PMS), which is what I was really trying to get at with this thread all along, but so far have totally failed at. I'm not disputing that there are loads of different causes of gut issues, but for the purposes of this thread I'm not really interested in the causes, but the numbers: are there more autistic people with gut issues than NTs? My poll is not seriously going to answer that question, not least because I've left out the NTs and only 7 people have answered it so far. But still I thought it might be interesting to see how many people on this forum has gut problems.

As for holes, do you mean fistulas? It's all I can think of.

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[Cosmophylla]

Okay, but I'm really not talking about anything as broad as premenstrual syndrome. Besides, it's not connected to gut issues in autistic people (including children who certainly won't be suffering from PMS), which is what I was really trying to get at with this thread all along, but so far have totally failed at. I'm not disputing that there are loads of different causes of gut issues, but for the purposes of this thread I'm not really interested in the causes, but the numbers: are there more autistic people with gut issues than NTs? My poll is not seriously going to answer that question, not least because I've left out the NTs and only 7 people have answered it so far. But still I thought it might be interesting to see how many people on this forum has gut problems.

As for holes, do you mean fistulas? It's all I can think of.

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Perhaps it's just that gut issues are so complex and everything in our bodies and minds (which are one anyway) is interconnected and interrelated, that it becomes difficult to clearly delineate between them. And if you take all forms of gut issue as an umbrella term, you will get different results. It may take stepping back and looking at things from a different angle to see that you actually have the info you are after. Sometimes that works with me.

If you include all those things you discounted, it may actually prove that those of us on the spectrum do have more gut issues that NTs. I don't know, just speculating. AsheSkyler has done lots of research into this, I believe.

As for holes, I'm guessing that AsheSkyler is referring to Leaky Gut Syndome, but I may be wrong. I had a leaky gut, too, from Candida overgrowth. Candida causes loads of GI problems. naughty bacteria, doesn't know its own place in my GI tract,

 

[zurb]

Coeliac. And at the moment I'm anxious about moving house and job prospects, so my tummy is churning and movements are ... , well need I say. I've run out of Omeprazole, so that doesn't help either.

 

[NiceCupOfTea]

Leaky Gut Syndrome is a disputable condition, to put it mildly.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3758766/
http://www.nhs.uk/conditions/leaky-gut-syndrome/Pages/Introduction.aspx

Sorry, but I wouldn't count that as a valid diagnosis.

Edit: zurb's post wasn't there before I posted... we must have posted at exactly the same time :/ zurb - do you follow a gluten-free diet for your coeliac disease?

Edit 2: Cosmophylla - sorry if I was too short. It's that time of night where I just can't think of anything to say, really. In fact I should've gone to bed about half an hour ago and am going straight after this.

 

[royinpink]

I cannot respond to your poll as I have no idea what causes my gut issues or what diagnosis they might receive. We aren't all doctors, NiceCupOfTea . I take pro-biotics and it helps. I try to take B vitamins too, but not sure if that helps the gut issues or just my energy levels or if helps my energy levels because it helps digestion.

And AsheSkyler, I do have menstrual-related gut issues as well, but they are clearly not exclusive to my period, just worse then.

ETA: I seem to have problems with the amount of healthy bacteria in my body in general. I don't know if that is caused by stress or the mysterious 'autism & gut bacteria link' or what. It has given me other 'female problems' as well--I can elaborate if you want to go there. Unfortunately the treatment involved antibiotics, which don't address an underlying problem in maintaining healthy bacteria and thus fueled the cycle. I had to find my own treatment with probiotics (which vary widely in quality like all supplements due to poor federal regulations) and really cutting down the amount of sugar and wheat in my diet (sugar feeds Candida, which need to exist in balance with the healthy bacteria). I understand some doctors are starting to recommend probiotics for those with chronic problems, mine just weren't so enlightened.

I don't know why cutting wheat helps, but if I have too much it definitely gives me diarrhea. Living in Asia was great for that aspect of my GI issues. I've heard that sometimes problems people had with "wheat" or "gluten" disappear when they are eating wheat products that are preservative-free, use slow-rise yeast, or use traditional stone-ground whole meal flour...I think the jury's still out on what is really causing those sensitivities for people who don't have Celiac disease.

 

[Cosmophylla]

Leaky Gut Syndrome is a disputable condition, to put it mildly.

Sorry, but I wouldn't count that as a valid diagnosis.

Look, I can only go by my own experience with this. When I researched my symptoms I slowly uncovered the problem. I had 95% of the symptoms on lists for leaky gut/thyroid issues and when I followed an anti-candida diet for the requisite six months I felt absolutely fantastic. To put it simply, I went from slowly dying (literally, no exaggeration) from malabsorption to feeling as though I'd been reborn. It is probably easy for the NHS to discount nutritionists as quacks but you are literally what you eat... Cells don't grow from nothing.

I am not trying to be argumentative but I must say, with respect, that you are using too narrow a definition of gut issues, limited to those only given by allopathic practitioners. However, modern allopathic medicine is only recent, while humans survived for millenia without it. I used to think herbal stuff was a crock of sh*t but one day something clicked...when I realised that my gut is the main component of my immune system, and everything I put in there, as well as everything I breathe and put on my skin, is what I am made of. If I put crap in, I become crap!!! The pieces of the puzzle started to come together and I am much better at "listening" to my body these days. I don't go to herb shops and whatnot, or buy into ANY thing that claims to be a miracle "cure". The supplements I take are minerals for my endo, and oil for inflammation/joint pain. Everything else is just following a careful diet, eating two serves of red and two of green veg a day, etc. Sensible stuff. I still avoid too many carbs because I could end up with Candida out of control again. But I still eat them...

As I wrote, I speak from personal experience. Docs have misdiagnosed me but I have made myself feel so much better by doing my own research and listening to my body.

 

[Cosmophylla]

I don't know why cutting wheat seems to help, but if I have too much it definitely gives me problems.

In the 1970s wheat was genetically modified with a hormone to allow it to be grown more intensively, i.e. closer together. But it resulted in the plants getting mould due to lack of air circulation, so what was modified with a second hormone to resist the mould. These two hormones seem to produce negative reactions in many women. For some it is worse than others.



^ I should have added above that some of my gut problems resurfaced when I took a course of antibiotics...it tipped the balance in favour of candida.

 

[royinpink]

In the 1970s wheat was genetically modified with a hormone to allow it to be grown more intensively, i.e. closer together. But it resulted in the plants getting mould due to lack of air circulation, so what was modified with a second hormone to resist the mould. These two hormones seem to produce negative reactions in many women. For some it is worse than others.



^ I should have added above that some of my gut problems resurfaced when I took a course of antibiotics...it tipped the balance in favour of candida.

Oh, that's not the only change that's been made to wheat. Click the link I posted for "traditional stone-ground whole meal flour" for a fuller (if possibly biased) history. I think some studies have been done into the changes made to wheat in the 60's without finding any conclusive evidence that that was indeed the problem. But there are other possibilities, too. Interesting you suggested it being female-specific. Do you have any info on that?

For me I wonder if it is just that refined wheat is more quickly turned into sugar which feeds the Candida. Even my doctor suggested more whole grains. But the alarming thing about the history in that link is that, well, whole grains aren't even whole anymore, they just add grains back in to the already-refined white flour. :/

 

[Cosmophylla]

But there are other possibilities, too. Interesting you suggested it being female-specific. Do you have any info on that?

Here you go. It's related to endometriosis, which is how I found out about it.

http://www.endo-resolved.com/endometriosis_diet_and_wheat.html (Looks like a dodgy website but this woman healed herself of stage 4 endometriosis - proven by her gynaecologist in a laparoscopy...I've followed her diet and my pain is greatly reduced, with no days in bed any more and no cramping between periods, etc... I've talked about it in this thread a bit: https://www.aspiescentral.com/threa...bout-your-period-warning-possibly-gross.8474/). She mentions physic acid causing problems, too.

http://endometriosis.org/resources/articles/dietary-modification/

http://www.ncbi.nlm.nih.gov/pubmed/?term=PMID:+++++23334113 (abstract only)

http://www.wheatbellyblog.com/2013/02/wheat-and-endometriosis/ (Cites the above study but also says that they haven't yet quite nailed it down to one particular thing about wheat)

 

[royinpink]

Here you go. It's related to endometriosis, which is how I found out about it.

http://www.endo-resolved.com/endometriosis_diet_and_wheat.html (Looks like a dodgy website but this woman healed herself of stage 4 endometriosis - proven by her gynaecologist in a laparoscopy...I've followed her diet and my pain is greatly reduced, with no days in bed any more and no cramping between periods, etc... I've talked about it in this thread a bit: https://www.aspiescentral.com/threa...bout-your-period-warning-possibly-gross.8474/). She mentions physic acid causing problems, too.

http://endometriosis.org/resources/articles/dietary-modification/

http://www.ncbi.nlm.nih.gov/pubmed/?term=PMID:+++++23334113 (abstract only)

http://www.wheatbellyblog.com/2013/02/wheat-and-endometriosis/ (Cites the above study but also says that they haven't yet quite nailed it down to one particular thing about wheat)

That's interesting. I don't think it's likely I have endometriosis, though. Very little pain (cramps or urinary or bowel) during menstruation, and any increase in bleeding coincides with my getting a copper IUD and is a known side effect of that.

 

[Jacoby]

Knock on wood but I have guts of steel

 

[Cosmophylla]

This may of interest to you NiceCupOfTea, considering the gut's place in our immune systems?

https://www.aspiescentral.com/threads/anyone-else-immunocompromised.13532/

 

[NiceCupOfTea]

I cannot respond to your poll as I have no idea what causes my gut issues or what diagnosis they might receive. We aren't all doctors,

And yet I was being chided for not giving nearly enough options.

Gut bacteria is the 'in' thing at the moment, but some wildly overinflated claims are being made for it. As for probiotics, people mess around with this sort of thing, without having a clue about what they're really putting into their body. As a result they sometimes make things even worse for themselves. Antibiotics aren't automatically "bad" and probiotics automatically "good" - it's nothing like that simple.

For whatever it's worth, people can live without a colon permanently (the colon is where the vast majority of gut bacteria live - bacteria don't favour the small bowel). People without colons aren't any more prone to diseases than the general population, nor is their life expectancy shortened. If gut bacteria is so crucial to human health, why is this the case? I genuinely want an answer to this question and haven't found one anywhere yet. (I by the way don't have a colon. If I see out the average lifespan I won't have had one for 40-ish years by the time I die.)

Look, I can only go by my own experience with this. When I researched my symptoms I slowly uncovered the problem. I had 95% of the symptoms on lists for leaky gut/thyroid issues and when I followed an anti-candida diet for the requisite six months I felt absolutely fantastic. To put it simply, I went from slowly dying (literally, no exaggeration) from malabsorption to feeling as though I'd been reborn. It is probably easy for the NHS to discount nutritionists as quacks but you are literally what you eat... Cells don't grow from nothing.

mate, I probably have 99% of the symptoms: brain fog, can't remember what I wrote 2 seconds ago - sorry what what I was saying?, etc. etc. etc. I even have a thyroid diagnosis! My GI said I had subclicinal hypothyroidism a few years ago, and he was spot on. Two years ago, my GP diagnosed me with Hashimoto's thyroiditis, which levothyroxine is controlling reasonably well, as far as I know.

It's quite possible a strict diet would make me feel better than I do in some ways. On the other hand it could make me much worse, if in fact I have strictures or other issues that no naturopath could treat. At the moment, I'm terrified of eating roughage, nuts, etc., or indeed eating too much of anything at all. It sucks donkey balls, to be honest. I'm hoping it's a normal part of surgery recovery, and nothing more serious, but only time will tell.

Anyway, fair play to you for solving your own issues. I have to wait and see with mine, which is driving me round the bend.

This may of interest to you NiceCupOfTea, considering the gut's place in our immune systems?

https://www.aspiescentral.com/threads/anyone-else-immunocompromised.13532/

Well, for a start I'd say most of that poster's symptoms could be explained by eating only 600 calories a day - of course she's going to be weak and faint. There's a reason why the RDA of calories is set at 2000 for women - most women need about that much to function optimally. People can do without less for a while, particularly the overweight, but it isn't particularly healthy in the long-term. Malnutrition can lead to immunesuppression.

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[Cosmophylla]

Just a thought, NiceCupOfTea , you may find a target "audience" in the Serious Discussions forum. https://www.aspiescentral.com/forums/serious-discussion.7/ Its a good place to discuss this kind of topic, in my opinion.

I understand what you are saying about gut bacteria being the in thing at the moment, but speaking for myself I have always made it a point to do the opposite of what is in. (I mean I hate the idea of being a sheep and going along mindlessly with what everyone else does) and I honestly didn't really know about the popularity of "gut bacteria", the paleo diet, the sugar free diet, going gluten free and all that bandwagony stuff. I've heard about it since then.

And I understand you are in pain and want answers. If the research hasn't been done then everyone is in for a wait.

 

[AsheSkyler]

Don't see how that's connected to what I wrote, but okay?

Personal example then. I have a cast iron stomach, except when my sensory issues are involved. When I'm having one of my bad days then temperature, touch, and especially smells can ransack my system about as bad as you can get without having something pesky like an autoimmune disease. My appetite will be thrown off most of the day, on the lighter side of things. I usually loose a pound or two those days. All the sluts I knew accused me of having morning sickness ten years before my first kid ever came about. And that's not counting the problems from another issue I have. That one is potentially linked to my being on the spectrum, but I've got a few more years of research and blood tests to go before I can confirm it.

I'm not disputing that there are loads of different causes of gut issues, but for the purposes of this thread I'm not really interested in the causes, but the numbers: are there more autistic people with gut issues than NTs? My poll is not seriously going to answer that question, not least because I've left out the NTs and only 7 people have answered it so far. But still I thought it might be interesting to see how many people on this forum has gut problems.

As for holes, do you mean fistulas? It's all I can think of.

Perhaps a boolean option might have been best? Or double boolean. NT yes/no & Aspie yes/no. Or a step further to divide Aspie into diagnosed vs. suspected.

 

[Hurting89]

90%? that sounds a little too high. I think some people on the spectrum have co-morbid anxiety which affects their stomach. I never bought the wakefield theory that autism starts in the gut. Personally I have never had any gut problems

 

[BigTimber]

I have 'Coeliac Disease' (we call it Celiac here) and have had a C.Diff GI infection before. I still have a lot of stomach issues, like not being able to completely break down certain foods, but they're for the most part not an a problem in day to day life anymore and I just have to be careful about my diet.

 

[royinpink]

And yet I was being chided for not giving nearly enough options.

I did not chide you for that. I simply would like to respond to your poll because I do have gut issues, but all I can say is "Yes! Me too!"

Gut bacteria is the 'in' thing at the moment, but some wildly overinflated claims are being made for it. As for probiotics, people mess around with this sort of thing, without having a clue about what they're really putting into their body. As a result they sometimes make things even worse for themselves. Antibiotics aren't automatically "bad" and probiotics automatically "good" - it's nothing like that simple.

Of course it's not that simple! I don't think I said it was. I basically agree with what you said here, if you truly do mean that neither is all good or all bad for everyone (or the same person in different situations). It's just that probiotics do work for me. The claims I've seen in the media are more along the lines of 'researchers don't know yet whether autism or anxiety comorbid with autism causes problems with gut bacteria, or if the gut bacteria issues somehow cause some of the processing differences seen in autism, or if they are simply paired, but there is a correlation,' which seems pretty modest even if they are lumping autistic people together as if we must all have the same make-up (when in fact I'm guessing we don't all have the same gut issues at all, and some of us have none).

Maybe by overinflated you mean like the autism parents who are desperate for a "cure" and think they have found one in the GFCF diets? Which I think we can agree is wrong. Imo, it's a product of fear and overgeneralization and faddishness, but that doesn't mean that some autistic people don't suffer more to some degree from gut bacteria imbalance compared to the neurotypical population, possibly due to higher stress levels. Of course, I realize all research, but especially in psychology, and especially in autism studies, is susceptible to publication bias and p-hacking to further the career opportunities and grant money available to researchers. So even in science, claims can be inflated. We'll have to wait and see what they discover, I suppose.

This is my more extended, TMI experience with bacterial stuff:

Spoiler: gross

I started taking probiotics for vaginal problems, after doctors kept cycling between antifungal treatments for yeast infections and antibiotics for bacterial vaginosis, which would always recur (yeast infection after antibiotics, BV after antifungal--it started with an antibiotic treatment I was given in mainland China for food poisoning, something I also seem susceptible to, followed by a trip to Bulgaria which was not the most hygienic of vacations--this is not unheard of, it turns out), and was completely embarrassing. There is a brand of probiotics called Floragen which has at least two varieties, one for digestive and one specifically for vaginal health. It needs to be refrigerated to keep the bacteria alive (many probiotics that are not refrigerated are basically placebos, as the bacteria are not active). It also has a very high number of cultures compared to some. After a month or so of treatment (with that and something to balance pH), I no longer had vaginal infections. I learned to notice changes when I eat more sugar (feeding the Candida that cause yeast infections--candida are yeast, and yeast feeds on sugar). It is very visible, to notice vaginal discharge becoming whiter and clumpier, more than it would usually vary within a month, and that is the last-chance warning sign to cut my sugar intake before I get an infection. I have not had infections since then.

For some reason doctors are skeptical of women's ability to correctly diagnose yeast infections. I guess most people must not have a very observant eye or let their fear about having a medical condition overtake their rational thought. My doctor was surprised and apologetic (after being rather patronizing) when she realized that I was totally correct about what was going on with my body. So yay, I guess. I get really stressed when people dismiss and condescend to me, dunno why. Doesn't help that I had to be naked for it.

I also get UTIs with greater than average frequency (I always seem to get 3 in a row--the antibiotics never quite get rid of it the first time, despite testing negative for antibiotic-resistant strains), and I've had Keratosis pilaris, which some say is also a result of Candida overgrowth. I don't know, but I do know that after years of having it, it mostly went away with a decrease in sugar and wheat intake, but mine was a milder case, and I would never claim that will work for everyone.

Currently I seem to be dealing with an outbreak of psoriasis, which is an autoimmune problem, and a cold that just won't go away. I've always been sickly and prone to illness and allergies. But the one thing that IS clear is that when I take a good probiotic (for digestive health this time), I have a normal stool when I'm not on my period, and within 1-2 days of stopping it, I go back to loose stools. So I'll stick with the probiotic.

If gut bacteria is so crucial to human health, why is this the case? I genuinely want an answer to this question and haven't found one anywhere yet.

Well, from what I know, the reason healthy bacteria are so important are so they can exist in balance with yeast, 'bad' bacteria, and other toxins in the gut. If there is no gut, there can be no imbalance because there is no place for the yeast and 'bad' bacteria to go any more than there is for 'good' bacteria. Just the logical consequence of what I know, but I could always be missing something. And of course, you could still have problems outside the colon.

 

[Aspergirl4hire]

Here you go. It's related to endometriosis, which is how I found out about it.

http://www.endo-resolved.com/endometriosis_diet_and_wheat.html (Looks like a dodgy website but this woman healed herself of stage 4 endometriosis - proven by her gynaecologist in a laparoscopy...I've followed her diet and my pain is greatly reduced, with no days in bed any more and no cramping between periods, etc... I've talked about it in this thread a bit: https://www.aspiescentral.com/threa...bout-your-period-warning-possibly-gross.8474/). She mentions physic acid causing problems, too.

http://endometriosis.org/resources/articles/dietary-modification/

http://www.ncbi.nlm.nih.gov/pubmed/?term=PMID:+++++23334113 (abstract only)

http://www.wheatbellyblog.com/2013/02/wheat-and-endometriosis/ (Cites the above study but also says that they haven't yet quite nailed it down to one particular thing about wheat)

I really wish I had known about this when I was younger. I was presumed sterile because the damage was so great--and the pain was literally crippling. On-the-floor, can't-move, helplessly-crying crippling. No doctor I approached would actually do the surgery I asked for on a 24-year-old who had been suffering this for 10 years.