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My 17yo daughter is experiencing severe abdominal pain. Started across the top but then developed through bottom as well. Has had diarrhoea which turn turns to constipation after most meals. Ended up at Emergency Dept and they ruled out anything that was likely to rupture. We then had series of doctors visit. Colonoscopy & gastroscopy showed nothing. All clear. Pathology from biopsies clear. Urine & blood tests normal. Ultrasound checked for gall stones was clear. Doctor says because all tests are clear it must be “stress”. In desperation saw a Kinisielogist who suggests parasites in bowel. Currently taking a herbal pill to try to treat in case it’s that. Any one had similar symptoms and what was your outcome?
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There are different quality parasite testings:
one off stool samples are a start, but not the one and only definite answer.
After a one off native stool normal result
of culture, PCR for most common pathogens, ovum, worm, cyst, parasite search,
there are 3-time-stool-sample concentration tests, where stool is put into a medium and collected from 3 different stools to exclude more likely false negative results for microscopic searches (no culture from those possible of course due to medium).
Depending where you live or have travelled to, you might want to include a tropical institute too, to make sure no gut nasties were picked up in water through drinking or skin/nose.
Also there is another stool test for Calprotectin, that you might just like to have done indicating inflammation of guts (it's a white blood cell protein).
Exclusions are very helpful and peace of mind, too.
We even went so far as to these dubious(?) holistic bio stool culture testing (expensive, private) ordered by naturopath-doc just finding out, that everything was in order anyway. Those tests can vary each time and are a bit unregulated and healthy bacteria exposed to air simply die on the way to lab, too. Yet, if something drastic was picked up, no harm done to have that known, addressed with very certain diets and probiotics.
I doubt though, it would fix it all.
Others go from there and have stool implants done via colonoscopy, if they suffer colonic inertia and had a very bad reading of there bio stool sample whole flora screen in healthy gut bacteria culture.
Debatable, but I just want to mention.
Once these non invasive stool results are clear (as a herbal pill will not do it for most parasites),
and you have also excluded food triggers via a food diary
and different diet approaches (from low FODMAP, to no grain, no milk, no egg, bland to GAPS to low fibre vs high fibre) very time consuming process, but best self help, also valuable for doctors) or even had sugar breath tests for malabsorption of certain sugars or rule out SIBO or H.pylori breath tests,
and have tried digestive enzyme capsules,
relaxation however possible (daily meditation),
I would recommend you to look outside the box
join relevant patient fb groups, who can navigate you to your local 'best' doc for certain physical questions.
If you were in the USA, cheer. Anywhere else, get a helmet for banging your head against a brick wall...... ;-)
It is always state of the art to get imaging, x-rays, scopes, scans, basic blood tests and ultrasounds.
It is a relief, if nothing 'urgent' 'life threatening' is seen and found.
On the other hand it is utter frustrating.
It doesn't mean though, all of physical possibilities were covered, hence all is fine, all is stress.
Some have even bile flow problems, can't remember what that was called,
kind of 'sludge' but not stones, hence needed special visualisation like HIDA scans, functional scans, not usual visual one off stone search via ultrasound or even x-ray with the 10-20% radiolucent stones of false negative results.
If your girl had surgery before, there could also be the possibility of adhesions troubling gut motility.
I let you know what my suffering now-life-disabled girl has (and took two years to discover and actually I got the stone rolling after diagnosing a compression in a so called 'normal' concluded MRE):
nutcracker = rare diseases of physical compression of duodenum or vascular/nerval system.
It seems spine and vascular system not always growing well in tune.
Nutcrackers (compression of left renal vein by superior mesenteric artery) are always too 'high' up in axial imaging planes with a lot of liver in same plane, it is studied and a known anatomical phenomenon, causing often trouble as the duodenum squeezes through the same narrow SMA/AA angle.
Hence there is the reluctance to operate straight away on children and good so as there is hope to 'grow out' of it.
There is no hope for getting better for adults though or once growing is finished.
I also have the feeling, that all the 'psychological counselling' especially done with children/teenagers, when 'nothing' is found, is doing exactly that:
buying time for growth, anatomical alignment in many cases.
One will never know, but that is my theory after reading 1000s of studies of physical issues and how the follow up went.
Because as a teenaged GIRL all must be more hormonal or psychological or stress, right? So not right.
Can also be, but is not the 100% for all explanation and is too often used as that.
There are many facebook groups about those mentioned conditions and everyone in the same boat:
basic tests normal, hence dismissed with 'psychological' 'anxiety' issues.
Mostly teenagers or women after pregnancy effected and no,
it is not a depression, it is physical compression.
Also sometimes radiologists and sonographers overlook something, too. They are humans.
Sometimes the protocol ordered makes it invisible to be picked up.
I am not rambling against mistakes, I am rambling against forgetting of 'loops' and being simply humans.
I urge you to request a copy not only of doc letters and written results,
but of each imaging (you get them as a link to download, on CD or USB) as you will want to start looking yourself and bring them to other docs that you will see to avoid them to have to do the request to facility as they are sometimes not directly connected to the facilities, where your imaging was done. It takes too much time. Just always have the whole record on yourself.
We have wasted(?) very much money for naturopathic therapy, tests, acupuncture, teas, supplements, heat pads, oil wraps, books, diets, dieticians, apps, nothing helped, yet, one needs to try!
I am just saying,
you are still not at a dead end even all this still possible helpful avenues do not improve symptoms.
For us it is purely physical compression (and two years before diagnosis)
and all the other things (like juices I press, smoothies I make), clinical pilates and if wanted psychologist or even antidepressants,
are more counteracting a collateral damage by malabsorption, loss of quality of life and weakness as a secondary thing on top, not tackling the root cause.
Yet you will get docs though,
who will accuse the resulted weakness as the cause
and twist the time line to their explanation model of preconception.
Wishing you a lot of energy
and soon improvement with the usual digestive helps or finding culprit triggers.
Otherwise please do not give up, the 'rare' disease community as not as rare as one might think.
Try a Flora critical care 50 billion probiotic...I had same symptoms and said thought I had IBS"...took that particular probiotic and it was gone after half bottle. Continued taking them and still do...hope that works..
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