Discussion in 'Other Health News and Research' started by xchocoholic, May 12, 2012.
Very interesting xchoco - I recall my Neurologist thinking in terms of GI (restricted) functioning of the smooth muscles involved - electrical activity being the nerve supply isn't it.
Very nice find - and it's the gut again!
Imho, it's possible that this is related to gluten damage. Here's the latest from the FDA on how gluten can damage more than just the celiac section of our digestive tracts. It's it the first 8 pages of this PDF.
Here's my attempt to make the info from the PDF easier to read. It was a bear to try to copy from so if you seen anything odd, just go check the pdf itself ..
I realize other things can damage our guts having just gone through the treatment for h pylori. I'm just too tired right now to think of them ...
ETA .. NSAIDS, viruses, h pylori .. I'm not sure what else.
tc ... x
Just a thought. For many years, I've noticed that my POTS is significantly worse after eating, and for several hours. With an empty stomach, I'm able to do things upright without the major discomfort.
It seems to be likely that digestion requires quite a bit of blood flow being shunted to the GI system, and this worsens the POTS symptoms. It wouldn't surprise me that since standing upright pulls some of that blood flow away, the electrical signals of the gut could be affected.
OT - I'm loving this new forum. It's so easy to read ...
I'm not sure what you mean here. Should we be looking closer at the nerves in our abdomens for signs of POTS ?
I seem to pool in my stomach area as I really need to lay down flat after eating anything. My doc just gave me Creon, a digestive enzyme, to see if it helps.
BUT - FWIW - H Pylori caused me to get gastroparesis (food is not going anywhere) and it went away a few weeks after treating. Taking Keflex appears to have done this to me again. I'm working on rebuilding my gut microbia.
I'm just wondering if it's gut damage or dysbiosis ... of course it coud be both ... tc ... x
I can't take credit for finding this. I found it on DINET ...
I'd love to know if any of these kids were put on an elimination diet (gluten and casein esp), tested for bad bacteria or parasites or given probiotics afterwards.
tc ... x
Hi bel canto,
This is very true but this test didn't include eating. Just the act of being upright caused the change.
We're suspected of having low blood volume (hypovolemia) so that's not going to help either. I wonder if the kids in this study had hypovolemia ...
I need to lay down after eating too. Esp if I eat any meat that is hard to digest like red meat or lamb. I started eating less meat at each meal but I still feel a huge difference in my gut if I lay down versus sitting or standing after eating.
I'm eager to see if these new digestive enzymes help this. They seem to be helping so far but it's only been 2 days ... too early to tell for sure ...
tc ... x
More info on how gut damage can be related to ME/CFS/OI.
I just recall at the time with my Neurologist (mostly bedridden at the time, passed out three times, slow gut passage - the barium enema still appearing a week later, falling down etc) - he mentioned the colon muscle. Not really very communicative and released me having ruled out MS and Parkinsons despite "high spots" in the brain on the MRI. I'm just speculating - the gut function is under the control of the autonomic nervous system (my heart was either racing or lmost at a standstill too) so tend to feel the problem lies there. I've kind of "repopulated" my gut flora with a high dose course of Amoxcillan (given by my Dentist following extractions !) followed by masses of good probiotics and bladder and GI and bladder issues have eased (infections probably). It is rather complicated isn't it but gut motility was compromised.
Re information at 9 - xchoc - just a personal view. Sudden ME onset for me were 'flu like symptoms at 62 years after a life time of bread and pasta. I think the break down of the integrity of the gut lining comes from enterovirals (whichever) and overgrowth by the wrong bacteria persisting. I am very cautious with diet now though - IBS and assuming leaky gut too. But all research in this area must be a good thing for us too. I hope your new treatment will ease things for you.
Are high spots on the brain the same as white lesions ? I had those too and have seen this related to
gluten. Have you seen theglutenfile ? Mine disappeared a year or two after going gf. Kow ..
I keep seeing that there are other things that damage our bodies tho. But gluten has been implicated in so many illnesses
that it's easy to blame. I read an article on celiac dot com were the author theorized that celiac disease
could actually be from commensal bacteria with an appetite for gluten. I'm looking forward to seeing more
research on bacteria.
Tc .. X
I've a feeling xchoc the jury is out on "high spots" or however they are described. I've never stopped eating bread etc and much clearer thinking now, in the bad old days I lost regonition/memory etc. Blood supply reduction is another theory and one of my Neurologists mentioned demyelisation (presumably it can happen in the brain too and I could barely stand or walk at time). The "what" crossing the blood brain barrier and causing such havoc in the Neuro/Immune/Endocrine systems would be quite a find.
I've heard a fart called a lot of things, but "Gastric Electric Activity"!! I'l have to remember to use that one next time. I'm just so low right now I have to grab a smile whenever I can! Seriously though, thanks for the info and I'm definitely not making fun of anyone or information. It is really useful or at least interesting. There seems to have been a few studies pop up lately that indicate symptoms going on with people with ME/CFS and really hope the body can develop the power to heal these things once the cause has been determined (or many causes!). I geuss my worst nightmare is for the cause to be found, but that it is too complex to treat. But, if I know the people on here like I think I do that will not be allowed. We will just have to focus our attention on finding the cure, instead trying to find the cause and cure as we are now. We are a pretty tough group and armed with a lot of knowledge and I can say with confidence that there is not another patient group any more knowledgable patients than we are.
lol .. I seriously doubt they were talking about breaking wind here but it's funny anyways.
This test was specifically for POTS patients not me/cfs. Because blood is pooling and not circulating
properly they are trying to determine where it's happening. I'd probably fail this too because I
can't stand up for long after eating.
I agree we have a great group of people here. Actually, I see the same commitment to finding a cure on many
health forums. At the very least, we patients, can use google to read what our medical professionals can read.
Tc .. X
Gluten has been proven to damage brains. It's in theglutenfile.
Tc .. X
Not hijack the thread, but Enid you mentioned something that was on my mind. My MD/Alternative doctor did some test to check for either Celiac and/or Gluten and all they did was send a letter saying it was normal. It was through Quest Diagnostics and it was for Gliadin (Deamidated) Antibody Panel IgG, IgA and Tissue Transglutaminase (tTG)Antibodies (IgG, IgA). Are these appropriate for gluten intolerance or is it Celiac disease only? Thank you!
I'm not enid but I know that these tests aren't always accurate. If you look at theglutenfile, there are
several doctors there who explain this. I never bothered to learn exactly what these tests meant since I was gf already.
Fwiw tho, I was biopsied 17 months post gf and still had damage. So much for needing to be eating gluten to
get an informative biopsy. I was walking normally by then too.
The report by the fda, link above, states
that damage can occur in more than the celiac section of our digestive tracts. They give their sources too.
Tc .. X
Thanks! Sorry to because I don't know why I was picking you up as Enid. One of those daysI
You're welcome. I have those days all the time too so I totally get it.
Btw, before I forget, what I like so much about the FDA PDF is that they've summed up a lot of the research I've been seeing on gluten intolerance over the last 7 years now. And they list all their sources. I haven't seen this written so concisely anywhere else. All their source studies can be found in theglutenfile too tho.
another great article ..
tc ... x
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