Please get her in to see a rheumatologist. As someone who suffers from MCTD. Much of what you are saying is familiar.
Hi Fireworks 10. Welcome to the forum.
I can feel your pain as a parent. What you're posting sounds familiar.
Having a child go through all this is a very devastating experience
and I can relate to it very well, as my daughter went through something very similar in the recent past.
In MCTD, mentioned by msnova74, high amounts of the antibodies ANA and anti-RNP would show in the blood tests, which was not the case according to what you posted.
Ileocecal Valve Syndrome, has to be investigated thoroughly, as I think that is the main cause of your girl's issues. All her symptoms are TYPICAL of IVS, including the kidney issues.
You see toxicity is normally handled by the liver, but with food rotting in the small intestine because of IVS with the ileocecal valve being closed most of the time, the build up of toxins and bacteria cannot be handled by an overworked liver. Should some of these enter the blood stream, the ONLY other organ that comes to the rescue is the kidney, that constantly filters the blood and this explains the dehydration, as the kidney now is working overtime filtering out the toxins using extra water. Water is the best detoxifying agent! Also another function of the kidneys is water regulation.
When chronic conditions cause the kidney to overwork, kidney dysfunction is inevitable.
Another link to dehydration is low Aldosterone, indirectly caused probably
by her serious deficiencies associated with her malabsorption issues
Aldosterone is a hormone secreted by the adrenals that regulates water levels.
It is unfortunate that no medical doctor so far, took the time to piece this together and help your daughter get better.
She needs to avoid fibre.
Any roughage will further inflame her Ileocecal Valve.
Only soft cooked vegetables and fruit are allowed, dark leafy vegetables and proteins like fish, meat, eggs but you must test everything in small quantities as she may have developed sensitivities, intolerance and allergies to many foods by now.
Must avoid at all costs, raw veggies and fruit, legumes (beans and lentils),
any acidic foods like vinegar, onions, garlic, leaks, caffeine, chocolate,
fermented foods, grains, nuts, seeds, popcorn, hot spicy foods
All these will inflame more intestinal lining and the ileocecal valve and contribute to continued dysfunction.
Also supplementing with liquid chlorophyll extract, would help repair some damage, as it delivers magnesium very fast, contains vitamins A, C, E, K, folic acid, iron, calcium, protein, and is one of the most important natural chelates!
It will also increase her PH (more alkaline) which is recommended for IVS.
It really isn't that complicated, but the way the medical model is nowadays we are facing a health care delivery crisis!
My suggestion, run from conventional medicine. Find a knowledgeable holistic practitioner to help you with the specifics.
You daughter will get better!
My thoughts and prayers go out to her, and I hope you find a good health practitioner who cares and helps her regain her health.
The aforementioned information, is only for educational purposes and not intended as a substitute for medical advice.
Please let me know if you need any details. You may post again or you
may send me a message any time.
Hey I have the same thing as your daughter. Have you found a cure yet? I am 22, was a triathalete/fitness guy for a while. Now I've got adrenal fatigue from hell. Can barely do anything. Same pain almost exact levels as you described. Have you seen an endocrinologist?
Jakeskelly, I'm o sorry for your suffering.
BTW Fireworks has not posted again since her original only post 2.5 years ago.
I suggest you start your own thread, posting your question and providing
some details.about your situation.
FYI, most conventional endocrinologists, do not recognize Adrenal Fatigue
until it becomes total adrenal failure, called Addison's/Adrenal Insufficiency, for which there's no cure.
My son has mctd and he complains about urinating. Sometimes urine wont flow good when he urinates. I understand mctd can affect kidneys