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Protein deficiency: possible root causes?

Pearshaped

...and then Life went pearshaped.
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Have you been found with Protein deficiency?(despite of eating much protein)

Could there be a connection between CFS and protein deficiency?

Underlying causes/ diseases???

Id like to hear what you know /think about it.
Im bedbound and many websites which seem to provide some information cant be opened with my mobile. :(
 

Moof

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Metabolic profiling by Fluge & Mella in 2016 found unexpectedly low levels of certain amino acids (the building blocks of protein) in women with ME, suggesting their bodies were using them as an alternative way of producing energy:

https://insight.jci.org/articles/view/89376

I wonder if this could be connected to your protein deficiency? The reductions were only in some amino acids (mostly the ketogenic ones), and if you know which ones you're short of, you could compare your results.

I and some others have found that supplementing with branched-chain amino acids (BCAAs) is a good way to reduce post-exertional malaise after overdoing things a bit, which might possibly support this – though it's important to say that some ME patients don't seem to benefit from them at all.

I should also say that I have no special knowledge in this area, so do bear that in mind!
 

Pearshaped

...and then Life went pearshaped.
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Thank you @Moof for your interesting reply.
Well they told me ALL my amino acids were very very low.alltogether.despite eating lots of protein.

Where does the protein go?
asking myself if this could be due to some Liver issues or could this be bound to other diseases? Everyone else has protein deficiency despite eating loads of protein?
 

Moof

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Where does the protein go?
If the research is correct, you may be burning it as fuel instead of glucose.

There are other causes of protein loss, so if it's severe enough to produce symptoms, your doctor should investigate. If s/he doesn't currently think you need further tests, maybe try supplementing proteins from sources other than red meat for a couple of months, and then ask for the same test again? I wouldn't take very large amounts, though, especially from sources such as protein shakes. Upping your intake of nuts and pulses, and fish and white meat (assuming you eat them) is probably healthier than only taking in loads of whey protein.
 

Pearshaped

...and then Life went pearshaped.
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Doc was concerned but seems to be clueless whats wrong.
He told me to add protein shakes to diet but i do that already.
don't like fish but eat eggs,chicken, nuts,cheese and sometimes bacon.
I take vinegar before protein intake for better digestion.
This is interesting; so if Body uses Aminos for fuel would it still use Aminos while on Keto? This illness is smart
 

Moof

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so if Body uses Aminos for fuel would it still use Aminos while on Keto?
I guess so? If the theory holds, there's no obvious reason that diet would change the ME body's inability to utilise glucose as effectively as it should. But remember that the apparent metabolic adaptations haven't yet been proven to exist in everyone with ME; and even if they are shown, we'd still need to understand fully why and to what extent they occur in the various sub-groups.

I don't go in for special diets, other than making sure I'm getting as wide as possible a range of healthy foods containing a reasonable amount of protein, so I've no direct experience of keto etc. I'm with you on the oily fish, though, which tastes so unbelievably disgusting that I can't believe people are actually willing put it in their mouths voluntarily!! :vomit: I take the best quality fish oil I can afford instead.
 

Zebra

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Hi, @Pearshaped!

I know that you are asking for help regarding protein, but I don't know anything about that.

However, I do know a little something about Amino Acid profile testing, both serum and urine, so I am concerned about your results.

I hope you won't mind if I comment on that aspect of your thread.

A complete amino acid profile usually comprises 32 individual amino acids. Depending on the quality of the lab, there should be a doctor's interpretation at the bottom of your lab report.

I do not know what would cause your entire amino acid profile to be low, but it is certainly suggestive of an inborn error of metabolism, meaning a genetic metabolic disease that is separate from ME/CFS.

You mentioned that your doctor was concerned, but clueless what to do. In my opinion, he should refer you to a geneticist that specializes in metabolic diseases.

Such specialists usually work at pediatric clinics, but see adults as well.

I realize that you are currently bed bound and may not be interested in pursuing this path.

Although this class of diseases is rare, a few drug companies have taken interest, and offer treatments to improve quality of life for just a few of the many metabolic diseases.

I wish I didn't know about any of this stuff, but I do, so if I can help you in any way, you can respond here or send me a private message. I'll be back online at some point this weekend.

Best of luck to you!
Zebra
 

Pearshaped

...and then Life went pearshaped.
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Dear @Zebra
Thank you very much for that info.
I have no idea where to find such a specialist in my country and if the journey to get there and appt itself is worth the crash afterwards..
I have to think about it..

my glutathione is also very low in blood and even in cerbral fluid.when they finally find something unusual they don't know what it means and just shrug.
Isnt it unlikely to have a rare inborn disease as an Adult?
 

valentinelynx

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I had low serum protein for a few years. It puzzled me a lot at first, because I was eating much more protein than would normally be necessary, especially for someone who wasn't very active. Eventually, however, I was worked up for anemia and discovered I had enteropathy: damage to my small intestine. Mine appeared like NSAID enteropathy, and I had been taking ibuprofen daily for a year or more (but no more than recommended). My small intestine was full of ulcers and strictures. In addition to covert blood loss, this kind of damage to the the small intestinal mucosa can cause leakage and loss of protein into the GI tract. It's called protein-losing enteropathy. My protein levels have returned to normal now, and I believe it is because my gut, while not completely healed, is much better.

Do you have any signs of gut issues, @Pearshaped ? Do you also have anemia? It might be worth investigating. Pathology in the small bowel cannot be seen on standard upper or lower endoscopy (the instruments cannot go that far). It's done with "video enteroscopy", otherwise known as a PillCam® study, in which you swallow a tiny camera shaped like a capsule. The camera is activated just before you swallow it and takes pictures (with a flash!) every second or so for 8 hours as it traverses your gut, and sends those images to a device you wear during the study. You just poop out the camera later (and flush it away...). A gastroenterologist can order the study, if it's indicated.
 

Pearshaped

...and then Life went pearshaped.
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Very interesting @valentinelynx Thank you very much.
Yes I have gut issues especially in the I upper gut/small bowel.But no anemia.
PillCam was already in my mind so i think im going to "beg" Dr.for it.And i'll look into proetin- loosing entheropathy.

Im glad to hear your protein levels have returned to normal.
 

Pearshaped

...and then Life went pearshaped.
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Well I finally managed to open a website with a bit of Info. at least for PLE.
from Wikipedia:
Possible Causes(!among others!) for Protein Losing Enteropathy:
-IBS
-coeliac disease
-(surprise!) infections
-systemic Lupus
-sarcoidosis
-ulcer.gastroenteritis
-amyloidosis (not sure spelling is right)
 

Pearshaped

...and then Life went pearshaped.
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From labtestonline.org:
"A low protein level can suggest a liver disorder or a kidney disorder in which protein is not digested or absorbed properly.
Low protein levels my be seen in severe malnutrition or in conditions that cause malabsorbition such as celiac disease or IBD"
 

CFS_for_19_years

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https://www.drcourtneycraig.com/nutritionist-for-mecfs
First diagnosed with Chronic Fatigue Syndrome at age 16, my academic and career trajectory was fueled by the constant need to understand and overcome the illness.
https://www.drcourtneycraig.com/blo...siderations-for-severe-mecfs-patients-protein
Special Dietary Considerations for Severe ME/CFS Patients: Protein
In chronic illness, protein demands increase due to the body being under constant physiological stress. Stress hormones such as epinephrine and norepinephrine, degrade existing proteins and inhibit creation of new ones. Chronic inflammation and oxidative stress can inhibit the activity of important enzymes involved in protein synthesis.
[...]
Even short periods of bed rest, 5-6 days, can result in up to 1kg of muscle loss. Several studies of those with longer duration bed rest between 10 and 42 days, average a rate of muscle loss of approximately 0.5–0.6% of total muscle mass per day.
[...]
Synthesis of protein relies on dietary sources of complete protein—that is foods that contain all of the essential amino acids. Most important of these is the amino acid leucine, which is essential for synthesis of muscle protein. Foods high in leucine include beef, chicken, pork, fish, octopus, hard cheeses, pumpkin seeds, pistachios, and white beans. Supplemental whey protein is also rich in leucine and has been shown to increase muscle protein in elderly subjects who supplements with 15g per day.

A diet of at least 25% of calories coming from protein is recommended to maintain muscle tissue and support protein utilization of every organ system. Aim for 1.5-2g/kg body weight/day. Multiply your body weight (kg) by 1.5-2g protein. For example, a 59kg female would require 89-118g of dietary protein per day. These same recommendations can be made for less severe patients.
 

Zebra

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Hi @Pearshaped,

I can see by the ongoing thread that you are more interested in pursuing protein issues, but I still wanted to respond to the question you sent me and provide you with some references.

Isnt it unlikely to have a rare inborn disease as an Adult?

I had much specialized testing, as well as genetic testing, for inborn metabolic and mitochondrial disease at the ripe old age of 44.

My neuro, who is SUCH a smart and dedicated doctor, oversaw this workup by ordering more common labwork, such as the amino acid profile (and much, much more) and then using those abnormalities to refer me to specialists in those areas. Again, the purpose was to look for primary metabolic or mitochondrial diseases, that are not secondary to ME/CFS.

I will leave you with a few links to journal articles. The first is link is just an abstract. The second link is a longer article that goes into detail. Might be helpful to your doctor.

Please know that I wish you the very best in your journey. I know how hard it is to keep pushing for answers and, hopefully, solutions.

Warm regards,
Z

https://www.ncbi.nlm.nih.gov/m/pubmed/18953373/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5800716/
 

lenora

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r.Hello Zebra, I'm Lenora, and quite new to this site.

So keep checking in and you'll find an answer or read one one day in the futur e. That's what we do, day by day it seems. Good luck in getting to the bottom of your predicament.. G'night all. Yours Lenora
 
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lenora

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Hi @Pearshaped,

I can see by the ongoing thread that you are more interested in pursuing protein issues, but I still wanted to respond to the question you sent me and provide you with some references.




I had much specialized testing, as well as genetic testing, for inborn metabolic and mitochondrial disease at the ripe old age of 44.

My neuro, who is SUCH a smart and dedicated doctor, oversaw this workup by ordering more common labwork, such as the amino acid profile (and much, much more) and then using those abnormalities to refer me to specialists in those areas. Again, the purpose was to look for primary metabolic or mitochondrial diseases, that are not secondary to ME/CFS.

I will leave you with a few links to journal articles. The first is link is just an abstract. The second link is a longer article that goes into detail. Might be helpful to your doctor.

Please know that I wish you the very best in your journey. I know how hard it is to keep pushing for answers and, hopefully, solutions.

Warm regards,
Z

https://www.ncbi.nlm.nih.gov/m/pubmed/18953373/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5800716/
Hi Zebra,

I did read all the links and found them to be interesting. Not any answers yet, but more detailed questions. This is all part of the research link and we just have to patiently wait it through.

I was told many, many years ago that iisyou have one genetic problem, chances are great that you'll have others. Of course I didn't like hearing it at the time, but darned if hasn't proven to be true. The hard part is accepting and dealing with matters as soon as they appear. I feel very fortunate to live in the times we do; true it's too late for me, but I'm "turned on" by being to help others in helping them move forward in their lives. We've lucky to live in the times we do, where so many are taking to research as a career and answers are coming fast and furiously. This is all good for you younger people. Even if it doesn't lead a to a cure, it will lead to new and improved treatments. We just have to keep these folks employed. Research is the key to the answers. I'm thankful so many of our young have developed a following and work together for the betterment of everyone affected by this (se) illness(es). A new Age of Enlightenment is upon us and the onus is on us to keep it rolling forward. We've had enough setbacks in our lives to know better, at least that's the lesson I've taken away. Let's wish each other the very best of luck and do whatever we can for research...give 'til it hurts is a good motto to live and work by. Yours, Lenora
 
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valentinelynx

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My protein levels were low for a couple of years. I associated it with the problems I was having with my small intestine, which had multiple ulcerations and strictures and chronic bleeding. This was attributed to NSAID use, however has not fully resolves despite no NSAID use for two years. My protein and albumin levels have returned to normal, however, so I believe my gut has healed to some extent. Intestinal inflammation can lead to what's called "protein-losing enteropathy". This, malnutrition, and chronic liver disease are the most common causes of protein deficiency.
 

lenora

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Thanks, Valentine, it's good of you to give me your experience(s). Right now, I recognize the feeling as that of coming off all steroid meds. The exact same thing happened to me last time; I was warned that I'd be feeling than I'd ever felt in my entire life, but didn't know what to expect. I fell totally backwards 7 times in 5 days, no warning. The same thing began happening last evening, and it still didn't tweak until just now. I fell, really fell, banged my head and then my legs, absolutely no warning whatsoever.

This time my electrolytes are being checked every two wks./and I'm showing low levels of sodium in spite of greatly increasing the same. I gather it's the after-effects of coming off the steroid med, but it seems I need that to prevent a recurrence of the Auto-Immune Encephalitis. Oh me, oh my, what a mess!! This is a fairly new diagnosed disease, and I'm fortunate that I've had a diagnosis. Still, it seems the root cause, an electroyte imbalance is also a separate disease (dependent upon what's read)...; in all good fortune I see my newer neurologist a week tomorrow and boy, do I I have some questions for her. Poor woman, at least she's capable (as is my old Doc, but you sure do have to wonder about some of them!) Medicine everywhere is changing at the speed of lightening and the onus is on us to find the answers....I don't know where that leaves most patients, but I know where it leaves me....asking a whole lot of questions, then spending a lot of time on Research. Well, if that's what it takes....at least they're learning something to help others with the same problem and personally, I feel that all education is valuable.

I wish you well and wish I had some easy answers for you. I would just encourage you to keep researching this matter yourself, as ask others in an even better position to do so, for you. You'll get some answer somewhere along the way. Until then, I wish you well, and hope you'll keep checking in with me. I feel pretty battered up this a.m, now it last a few days and will then go the way of the other. Keep on fighting, Valentine, keep of fighting.!!! Yours, Lenora. xoxo.