Idea for polls - suggestions welcome

[Sparrowhawk]

My gut issues seemed to coincide with my collapse,so I can't really say on epreceded the other. I do think having been on two years abx (doxy) contributed to my GI tract throwing in the towel. I also wonder if drinking barium for the CT scan was really the right choice at the time.

 

[MeSci]

My gut issues seemed to coincide with my collapse,so I can't really say on epreceded the other. I do think having been on two years abx (doxy) contributed to my GI tract throwing in the towel. I also wonder if drinking barium for the CT scan was really the right choice at the time.

By your collapse do you mean a severe worsening of your ME/CFS or was this the start of your ME/CFS?

In any case, maybe I need to split the fourth option in Poll 1 into two:

• I developed IBS-type problems at the same time as I developed ME/CFS
• I developed IBS-type problems after I developed ME/CFS

The preamble will have something to the effect that respondents should select the option that comes closest to their experience/perception. I know it can be really difficult to be sure, but if there are enough respondents maybe a pattern may emerge even if it isn't totally clear-cut.

 

[Sparrowhawk]

"By your collapse do you mean a severe worsening of your ME/CFS or was this the start of your ME/CFS?"

The latter, at least the acute onset. I now wonder if years of hear irregular beats, and over susceptibility to stomach viruses and severity thereof was an early sign of lowered immune response that has led here.

 

[MeSci]

"By your collapse do you mean a severe worsening of your ME/CFS or was this the start of your ME/CFS?"

The latter, at least the acute onset. I now wonder if years of hear irregular beats, and over susceptibility to stomach viruses and severity thereof was an early sign of lowered immune response that has led here.

Did you have stomach viruses definitely diagnosed and identified? Doctors tend to use 'virus' as a default diagnosis when they can't identify an illness!

 

[Sparrowhawk]

Well, when the entire family gets a stomach bug, I tended to be the one who spent the entire night heaving my guts out, and have to go to the ER for fluids, when the rest of them maybe feel nausea for some hours and then get over it. Was it a virus? I don't know but like you say that's what the MDs called it.

 

[triffid113]

I am thinking of starting one or more polls on associations between ME/CFS and irritable bowel syndrome (IBS). I'm not sure if/how I can include 3 polls in one thread, and would also like help refining the polls before posting them, as often ideas come up after a poll is posted and it can be hard to make changes once people have started voting.

These are the polls I am considering:

Poll 1:

I have never had IBS
I had IBS but no longer have it since developing ME/CFS
I had IBS before developing ME/CFS and still have both
I did not have IBS before ME/CFS but developed it when or after I developed ME/CFS

Poll 2:

I have never been tested for coeliac/celiac disease
I have tested positive for coeliac/celiac disease
I have tested negative for coeliac/celiac disease

Poll 3:

I have never been tested for leaky gut
I have tested positive for leaky gut
I have tested negative for leaky gut

I think you should consider that many people cannot afford to or don't feel they need to actually be tested to be sure they have some of these things and also the very fact that someone WOULD test means they DEFINITELY have a gut problem! You should poll regarding ALL gut problems, to include Candide, Crohn's, etc. and maybe should in fact ask simply if the person suffers from un-firm stool, which is something everyone can answer regardless of whether or not they have spent money and energy to go get tested. In fact, I think what you should ask is what percent of the time a person has un-firm stool...since many people like me have that problem (and lack of HCL that causes it) for periods of time but not always (in my case during allergy season). As for leaky gut - it causes food allergies so you should ask if that person has leaky gut / food allergies (the latter of which they can detect w/o testing), but since leaky gut is from lack of zinc which also causes lack of HCL, it also causes un-firm stool. I was tested for celiac disease and I do not have it, but the fact I was tested shows I fight gut issues and my gastroenterologist would not test w/o a pre-test which showed I had the same Ig-whatever as those with celiac disease (and in fact I tested allergic to wheat - by skin prick test long time ago).

 

[triffid113]

Well, when the entire family gets a stomach bug, I tended to be the one who spent the entire night heaving my guts out, and have to go to the ER for fluids, when the rest of them maybe feel nausea for some hours and then get over it. Was it a virus? I don't know but like you say that's what the MDs called it.

I sympathize with this. (I never get stomach flu, but my colds turn into allergy/sinus infections the like of which no one I know has ever seen before).

 

[triffid113]

You can put me down as a definite no for gut troubles preceeding ME or in the run up to it.

I didn't start getting occassional gut troubles until 8 years in, and I don't see them as being involved in my ME any more than joint pains or finger swellings, or any other bit of me that decides it's not going to play properly.

All right, now, Peggy Sue, I AM interested in this. I have also suspected that gut dysbiosis plays a huge role in CFS. So now I want to ask you if you may have had symptoms pointing to gut problems but were unaware of the connection...here is how I became aware of my gut issues:
(1) joint pain and depression which I noticed came on when I ate wheat.
(2) craving for acidic food (due to low HCL)

Did you have any such symptoms pre-CFS?

P.S. I quickly became aware that the low HCL caused un-firm stool. But not runny because I took quick action IMHO

 

[MeSci]

I think you should consider that many people cannot afford to or don't feel they need to actually be tested to be sure they have some of these things and also the very fact that someone WOULD test means they DEFINITELY have a gut problem! You should poll regarding ALL gut problems, to include Candide, Crohn's, etc. and maybe should in fact ask simply if the person suffers from un-firm stool, which is something everyone can answer regardless of whether or not they have spent money and energy to go get tested. In fact, I think what you should ask is what percent of the time a person has un-firm stool...since many people like me have that problem (and lack of HCL that causes it) for periods of time but not always (in my case during allergy season). As for leaky gut - it causes food allergies so you should ask if that person has leaky gut / food allergies (the latter of which they can detect w/o testing), but since leaky gut is from lack of zinc which also causes lack of HCL, it also causes un-firm stool. I was tested for celiac disease and I do not have it, but the fact I was tested shows I fight gut issues and my gastroenterologist would not test w/o a pre-test which showed I had the same Ig-whatever as those with celiac disease (and in fact I tested allergic to wheat - by skin prick test long time ago).

I could perhaps ask initially whether people had any digestive problems rather than specifying any named condition, as misdiagnosis is common, and not everyone can get basic tests done free as we do in the UK. (I find it hard to get my head round the fact that some people have to pay for standard tests! In the UK we tend to take the NHS for granted.) But even IBS doesn't always feature loose stool - some people predominantly get constipation.

The reason I was going to ask whether people had had a test was to help me to understand the answers about diagnosis. So obviously if only 10% of people have had tests, there will be fewer diagnoses than if 75% have had tests.

I don't think zinc deficiency is the only possible cause of leaky gut.

I don't want to make the poll too long or complicated for the initial stage, just an exploratory, short poll to see how common it is to have a gut disorder preceding the development on ME/CFS. If it is common, I could go on to create a second poll looking for more details.

 

[peggy-sue]

Triffid113 asked me if I had;
(1) joint pain and depression which I noticed came on when I ate wheat.
(2) craving for acidic food (due to low HCL)

To (1) Never. I do eat a fair amount of wheat, I adore bread - but it does tend to be wholemeal and brown and full of seeds/oats and that sort of thing.

To (2) I have always liked acidic food - since I was a very small child. "Soor plooms", rhubarb from the garden, tart little tomatoes, I use balsamic vinegar the way some folk might use salt. (I don't use salt)

 

[Firestormm]

"Soor plooms" Yees a boonny wee lassie and no mistake

 

[peggy-sue]

I suppose I should translate!

A "soor ploom" = "sour plum". It is a hard, round, bright-green, very sour, boiled sweetie.

 

[triffid113]

I could perhaps ask initially whether people had any digestive problems rather than specifying any named condition, as misdiagnosis is common, and not everyone can get basic tests done free as we do in the UK. (I find it hard to get my head round the fact that some people have to pay for standard tests! In the UK we tend to take the NHS for granted.) But even IBS doesn't always feature loose stool - some people predominantly get constipation.

The reason I was going to ask whether people had had a test was to help me to understand the answers about diagnosis. So obviously if only 10% of people have had tests, there will be fewer diagnoses than if 75% have had tests.

I don't think zinc deficiency is the only possible cause of leaky gut.

I don't want to make the poll too long or complicated for the initial stage, just an exploratory, short poll to see how common it is to have a gut disorder preceding the development on ME/CFS. If it is common, I could go on to create a second poll looking for more details.

Well, it may not be a primary cause in most cases, but I will bet you that any infection/virus uses up zinc and then you get a zinc deficiency that causes the snowballing cascade since it causes low HCL and inability to recover oneself easily through proper nutrition. ZInc is a mainline of defense against infections and required to make HCL.

I didn't know that constipation can be a symptom of leaky gut also. If you do not make enough HCL, you cannot digest fat (because it is the acidity of HCL hitting the wall of the small intestine that causes bile release). When you cannot digest fat, it becomes a gummy mess that is too soft, and depending on how much fat is undigested, the stool will float. And the intestines hate fat actually so try to expel it.

 

[triffid113]

Triffid113 asked me if I had;
(1) joint pain and depression which I noticed came on when I ate wheat.
(2) craving for acidic food (due to low HCL)

To (1) Never. I do eat a fair amount of wheat, I adore bread - but it does tend to be wholemeal and brown and full of seeds/oats and that sort of thing.

To (2) I have always liked acidic food - since I was a very small child. "Soor plooms", rhubarb from the garden, tart little tomatoes, I use balsamic ?

I doubt you recall but maybe pay attention for next time --
on the occasions of your IBS did you contract a virus/infection or go through a period of stress (like working late and eating on the run) or dis you do a lot of exercise (invoking the immune system to mop up dead and dying cells) or did you have an allergy attack? (Anything that invokes the immune system uses up zinc)

I am not really sure about the crave sour response from you because sour things are generally healthy and all children, unpoisoned by today's junk food, gravitate toward exactly the type of sour things that you list. So...I guess I just have to ask you to pay attention to if you feel like food is just sitting in your stomach and won't go down w/o eating something acid and if your tongue is coated (which can be from lack of sufficient HCL).

I read about a guy on the Web who kept pushing back with docors about why he had IBS and why, why, why back to the cause and the cause he got at was insufficient HCL. (IMHO he should have pushed back further to find the cause of insufficient HCL...I know it takes zinc and P5P to make HCL. I read on a CFS site some disturbing info that parietal cells require a lot of ATP and this may be the cause of low HCL in those with CFS. (But I find that unproductive - unless one can take ATP by pill, which actually they sell at www.lef.org - idk how well they work). In myself I perceive a benefit from taking a lot of zinc at certain times (like allergy season, but also infections).

 

[triffid113]

I could perhaps ask initially whether people had any digestive problems rather than specifying any named condition, as misdiagnosis is common, and not everyone can get basic tests done free as we do in the UK. (I find it hard to get my head round the fact that some people have to pay for standard tests! In the UK we tend to take the NHS for granted.) But even IBS doesn't always feature loose stool - some people predominantly get constipation.

The reason I was going to ask whether people had had a test was to help me to understand the answers about diagnosis. So obviously if only 10% of people have had tests, there will be fewer diagnoses than if 75% have had tests.

I don't think zinc deficiency is the only possible cause of leaky gut.

I don't want to make the poll too long or complicated for the initial stage, just an exploratory, short poll to see how common it is to have a gut disorder preceding the development on ME/CFS. If it is common, I could go on to create a second poll looking for more details.

Maybe you could ask for short, especially objective, answers, and ask
do you think you have a digestive issue (yes/no):
what sort (IBS, Chrohn's, hypochlorhydria, candide, hyperchlorhydria, GERD, other):
was it diagnosed (yes/no):
In a few short, succinct phrases, list pertinent symptoms for why you believe you have the above if not diagnosed (bloat, loose stool, constipation,...etc)
Do you have it all the time or only sometimes (give % of time)
Have you always had this or did it come on before/after CFS (always, before, after):

Maybe something like that. (?)

 

[MeSci]

Looks like I didn't search as thoroughly as I thought. I've just found a poll from 2012 here.

 

[mermaid]

Well I am a good one if you had done this poll as I had classic diagnosed IBS from the age of 19 until my late 40s. It suddenly changed in its nature to upper gut pain, which was then diagnosed as gastritis and treated with the dreaded Omeprazole for 2 years.

It was soon after that, that I was diagnosed with ME/CFS and began the downward slide to now aged 61 and with severe food intolerances. Mostly it is under better control, but only by eating a strict Paleo diet and treating with betaine HCL and digestive enzymes (plus a myriad of other supplements).

I do think that my autoimmune issues fit into this story somewhere along the line. Diagnosed hypothyroid long before the ME/CFS, and many years after developing IBS. I reckon maybe if I had paid attention early on and stayed off gluten for a start when young, then i wouldn't be in this pickle. But that's a long time back, and in those days there was no internet, and nothing on food intolerance that I knew of. Interestingly I used to be physically sick a lot when young, as did my brother, and the Dr said we had acidosis.

 

[MeSci]

Well I am a good one if you had done this poll as I had classic diagnosed IBS from the age of 19 until my late 40s. It suddenly changed in its nature to upper gut pain, which was then diagnosed as gastritis and treated with the dreaded Omeprazole for 2 years.

It was soon after that, that I was diagnosed with ME/CFS and began the downward slide to now aged 61 and with severe food intolerances. Mostly it is under better control, but only by eating a strict Paleo diet and treating with betaine HCL and digestive enzymes (plus a myriad of other supplements).

I do think that my autoimmune issues fit into this story somewhere along the line. Diagnosed hypothyroid long before the ME/CFS, and many years after developing IBS. I reckon maybe if I had paid attention early on and stayed off gluten for a start when young, then i wouldn't be in this pickle. But that's a long time back, and in those days there was no internet, and nothing on food intolerance that I knew of. Interestingly I used to be physically sick a lot when young, as did my brother, and the Dr said we had acidosis.

Have you had any tests done to see whether your gut is too acidic or too alkaline?

It may that excessive permeability of the gut leads, in many cases, to autoimmunity, so that theoretically, treating the leaky gut could enable the autoimmunity to subside (may take a few years) and hey presto - a cure!

This thread is perhaps the go-to place for info on that.

 

[mermaid]

Have you had any tests done to see whether your gut is too acidic or too alkaline?

It may that excessive permeability of the gut leads, in many cases, to autoimmunity, so that theoretically, treating the leaky gut could enable the autoimmunity to subside (may take a few years) and hey presto - a cure!

This thread is perhaps the go-to place for info on that.

No I haven't. I have heard of the Heidelberg test but not been with a practitioner who offered it. I did try Apple Cider Vinegar first, but that didn't really help enough. I was advised by Dr Myhill to try Betaine HCL, as she believed I had hypochlorhydria, but I was very cautious about the amounts, and only use one per meal. I now have no acid reflux at any rate. Interestingly my husband also has gut issues, and has improved too on Betaine HCL and digestive enzymes, though his problems seemed not quite the same as mine. He doesn't have ME/CFS at any rate.

The thing is, I am over 60 and it's known that acid levels tend to drop with age, so it seemed likely that this was at least part of the problem.

That said, I have had some other tests done - the Genova Comprehensive Stool Analysis, and also the Biolab Gut Fermentation Profile which both threw up some issues that I am now treating. The Dr who I see thought I had SIBO and I believe that SIBO and leaky gut tend to go together though not entirely the same thing.

Sadly autoimmune thyroid issues cannot be cured (well there are some who say they can, but I doubt it after 18 yrs), so I am stuck with that whatever I do. But certainly if you sort out the leaky gut it can only be to the good for the whole body. I am doing my best to sort it out, but it's not easy, and I probably lapse on the ideal leaky gut diet too, from time to time, because frankly I find it rather boring!

Thank you v much for the link - I will read that with interest.