Aa
Undiagnosed health issue
Hello, I am writing on behalf of a friend. I will past here her story, we are looking for help and any tips, if you know anything what can cause following described healt issues we will be very gratefull for help.
I know it is a lot of reading but I would like to present all of information. If anybody has a tip or meet something similar please let me know.
This is her story:
-----------------------------------
No never smoking, never drinking, never drugs.
Current medication:
L- Thyroxine
Start : June 2018
100 mg a day
Surgeries :
2014 Big cysts removed from the ovary
2018 Thyroid cancer. Left side is removed, no radiation therapy.
2019 Salivary gland tumor 5 cm removed on left side.
2020 umbilical hernia repair
My normal day was :
30 min workout before work at 08.00 am
Cardio
45 min workout after work at 17.00 pm
Boxing
Evening workout starting at 21.00 pm
Running 10 km
This was a routine for 7 days for many years.
My weight was 58 kilo. Hight : 1.73
Suddenly out of nowhere
March 2016
1 Bloating and pain :
My stomach started to blow up with a huge amount of air only on 1 spot.
5 cm above the belly button
The size of the stomach got really big, compared to a pregnancy of 7 till 8 months,
especially after food.
(No constipation)
My whole body stayed the same size but the stomach got really big.
The heavy bloating continued for 20 days.
Pain :
After 20 days the bloating was a bit less but then the pain appeared.
The pain is always on one and same spot above the stomach.
5 cm above the belly button.
The size of the pain is about 0,5 cm.
It's like a dot and really sharp.
It is a sharp and heavy pain.
The pain is always there on a scale between 5 and 10 and becomes stronger when i :
Bend forwards
Make up the bed/household
Suddenly movement
Drinking
Eating
It is also a feeling of that something heavy lays on my stomach, also during nighttime,
especially when i roll over from one side to another.
The most quit moment with a pain level of 2 to 3 on a scale of 10 is at night.
2 Sharp extraordinary pain left arm :
Also, very suddenly a massive pain in the left arm appeared from top to bottom of
the arm.
It was not possible to move the arm from pain. My surroundings thought of a heart
attack because of the incredible pain and it was so suddenly.
The heart was checked and was normal.
Pain on a scale from 1 till 10 a 10.
The pain in the left arm continues every day until now in different stages of pain.
The pain in the left arm gets worse after eating and movement.
3 Suddenly heavy chest pain
Again, out of nowhere, after 5 days that the pain in the left arm started suddenly a
massive pain on the chest appeared.
Very difficult to breathe in.
Pain on a scale from 1 till 10 is 10.
The pain on the chest continues every day until now in different stages.
Pain and a heavy feeling on the chest gets worse during movement and sometimes
food. But can appear without any movement.
4 Calf
On this step the calf on the left leg started to get big. It gets bigger 3 to 5 times than
the right side.
The moment i start moving, the calf starts to get big without pain.
Left leg including calf gets very big after food and movement.
5 Blood in urine
A lot of blood in the urine.
Always after heavy movement.
This appeared in March 2016 till June 2017
6 Sudden food intolerance
Intolerance for almost everything.
90% of the fruit and vegetables.
Histamine level in faeces was:
Reference : < 500
Result : 1600 !
This lasted for 1,5 year and disappeared just as suddenly as appeared.
At this moment the intolerance is not how it started but i can get suddenly a extreme
rash after eating something or it can come up in the shower.
The most weard moment was two weeks ago, i ate some green fresh beans and after
two bites i got this pain in the left arm, dizzy, pain on the chest, rash, and finally i
fainted.
7 Suddenly weight gain/ water retention
After 10 months of all the above described symptoms my weight started to grow
extremely fast.
The first 5 kilo's were gained in only 3 days
The weight started to grow disproportionate.
The thickness was directly located on the
inner thighs.
The body started to grow disproportionate.
The more i moved.. the faster the weight went up. !!
The water retention started specially to come up in the left leg, the left breast got
bigger, and especially located on the thights.
8 Extraordinary fast increase of insulin levels
After 10 months of all the above described symptoms suddenly the insuline started to
increase.
The normal (Belgium) standarts is 500
My level was at 1538
Of cource with this came extra weight gain as i got into insulin resistance very fast.
I went from a healthy athlete body to a very fast weight gain from waterretention
and then 10 months later to a increased form of fatty liver
Extra info :
When everything comes together i call it a attack of symptoms, the following
happens :
Pain and heavy feeling on the chest.
Pain level in stomach is a 10
Pain in left arm
Pain in left leg
Swelling of the left leg
Sometimes the face gets bigger and you see the water going from one side to another
for a short time
Weight goes up a couple of kilo's
Dizziness
Extra info :
When the first symptoms appeared of pain in chest, the swelling, pain in left arm and
leg the pain radiated to my back.
That gave an extraordinary pain, as if my back was broken, it is even not possible to
describe the pain.
This symptom appeared only for 6 months.
During that time nothing was found on a MRI of the back but there was a small
amount of fluid in the lungs.
That disappeared by itself.
When i feel dizzy and all of the symptoms come together i get a feeling as i describe
like Somebody stepping slowly on a garden hose and the air suddenly gets sucked out of
me
Procedures that have been done :
The procedures that i have done :
Colonscopy 3 x in 7 years
Small intestine ecam with a camera that i swallowed (2016)
MRI of small intestine
5 to 6 MRI'S of the abdomen
PET/CT 4 times
Dotatate 3 x
Endo ultrasound 4 times for pancreas
Gastric examination
Bile duct scintigraphy
Leukocytes scintigraphy
Liver puncture
MRI of the pituitary gland
Echo's of the stomach
Echo of the blood vessel in the abdomen
During my operation in 2019 of the umbilical hernia the surgeon told me that he tried
to look for something unusual during laparoscopy but did not see/find anything
unusual.
Findings of all the above :
None of the procedures gave any information. Everething was normal.
Pancreas 2022 :
Only in the pancreas there was a tiny little cyst found in 2022.
After 6 months the cyst was 50% smaller and on the third chek 6 months later it was
the same as the second time.
Pancreas 2023 :
I really wanted to undergo a fastingtest of 3 days in the hospital to be sure that there
is no insulinoma.
The results of the test were negative for a insulinoma.
The bloodtest showed that during eating of cracker day before fasting the insuline
level increased up to 514 while the referance is 17,8 - 173
During my hospital stay i did not experience pain in the left arm or leg
The pain in the stomach was a 2 or 3 on a scale of 10.
In the attachments you can find the results of the fasting test in the hospital.
Thank you very much for reading. I know it is a lot but I would like to present all of information. If anybody has a tip, meet something similar please let me know.
I know it is a lot of reading but I would like to present all of information. If anybody has a tip or meet something similar please let me know.
This is her story:
-----------------------------------
No never smoking, never drinking, never drugs.
Current medication:
L- Thyroxine
Start : June 2018
100 mg a day
Surgeries :
2014 Big cysts removed from the ovary
2018 Thyroid cancer. Left side is removed, no radiation therapy.
2019 Salivary gland tumor 5 cm removed on left side.
2020 umbilical hernia repair
My normal day was :
30 min workout before work at 08.00 am
Cardio
45 min workout after work at 17.00 pm
Boxing
Evening workout starting at 21.00 pm
Running 10 km
This was a routine for 7 days for many years.
My weight was 58 kilo. Hight : 1.73
Suddenly out of nowhere
March 2016
1 Bloating and pain :
My stomach started to blow up with a huge amount of air only on 1 spot.
5 cm above the belly button
The size of the stomach got really big, compared to a pregnancy of 7 till 8 months,
especially after food.
(No constipation)
My whole body stayed the same size but the stomach got really big.
The heavy bloating continued for 20 days.
Pain :
After 20 days the bloating was a bit less but then the pain appeared.
The pain is always on one and same spot above the stomach.
5 cm above the belly button.
The size of the pain is about 0,5 cm.
It's like a dot and really sharp.
It is a sharp and heavy pain.
The pain is always there on a scale between 5 and 10 and becomes stronger when i :
Bend forwards
Make up the bed/household
Suddenly movement
Drinking
Eating
It is also a feeling of that something heavy lays on my stomach, also during nighttime,
especially when i roll over from one side to another.
The most quit moment with a pain level of 2 to 3 on a scale of 10 is at night.
2 Sharp extraordinary pain left arm :
Also, very suddenly a massive pain in the left arm appeared from top to bottom of
the arm.
It was not possible to move the arm from pain. My surroundings thought of a heart
attack because of the incredible pain and it was so suddenly.
The heart was checked and was normal.
Pain on a scale from 1 till 10 a 10.
The pain in the left arm continues every day until now in different stages of pain.
The pain in the left arm gets worse after eating and movement.
3 Suddenly heavy chest pain
Again, out of nowhere, after 5 days that the pain in the left arm started suddenly a
massive pain on the chest appeared.
Very difficult to breathe in.
Pain on a scale from 1 till 10 is 10.
The pain on the chest continues every day until now in different stages.
Pain and a heavy feeling on the chest gets worse during movement and sometimes
food. But can appear without any movement.
4 Calf
On this step the calf on the left leg started to get big. It gets bigger 3 to 5 times than
the right side.
The moment i start moving, the calf starts to get big without pain.
Left leg including calf gets very big after food and movement.
5 Blood in urine
A lot of blood in the urine.
Always after heavy movement.
This appeared in March 2016 till June 2017
6 Sudden food intolerance
Intolerance for almost everything.
90% of the fruit and vegetables.
Histamine level in faeces was:
Reference : < 500
Result : 1600 !
This lasted for 1,5 year and disappeared just as suddenly as appeared.
At this moment the intolerance is not how it started but i can get suddenly a extreme
rash after eating something or it can come up in the shower.
The most weard moment was two weeks ago, i ate some green fresh beans and after
two bites i got this pain in the left arm, dizzy, pain on the chest, rash, and finally i
fainted.
7 Suddenly weight gain/ water retention
After 10 months of all the above described symptoms my weight started to grow
extremely fast.
The first 5 kilo's were gained in only 3 days
The weight started to grow disproportionate.
The thickness was directly located on the
inner thighs.
The body started to grow disproportionate.
The more i moved.. the faster the weight went up. !!
The water retention started specially to come up in the left leg, the left breast got
bigger, and especially located on the thights.
8 Extraordinary fast increase of insulin levels
After 10 months of all the above described symptoms suddenly the insuline started to
increase.
The normal (Belgium) standarts is 500
My level was at 1538
Of cource with this came extra weight gain as i got into insulin resistance very fast.
I went from a healthy athlete body to a very fast weight gain from waterretention
and then 10 months later to a increased form of fatty liver
Extra info :
When everything comes together i call it a attack of symptoms, the following
happens :
Pain and heavy feeling on the chest.
Pain level in stomach is a 10
Pain in left arm
Pain in left leg
Swelling of the left leg
Sometimes the face gets bigger and you see the water going from one side to another
for a short time
Weight goes up a couple of kilo's
Dizziness
Extra info :
When the first symptoms appeared of pain in chest, the swelling, pain in left arm and
leg the pain radiated to my back.
That gave an extraordinary pain, as if my back was broken, it is even not possible to
describe the pain.
This symptom appeared only for 6 months.
During that time nothing was found on a MRI of the back but there was a small
amount of fluid in the lungs.
That disappeared by itself.
When i feel dizzy and all of the symptoms come together i get a feeling as i describe
like Somebody stepping slowly on a garden hose and the air suddenly gets sucked out of
me
Procedures that have been done :
The procedures that i have done :
Colonscopy 3 x in 7 years
Small intestine ecam with a camera that i swallowed (2016)
MRI of small intestine
5 to 6 MRI'S of the abdomen
PET/CT 4 times
Dotatate 3 x
Endo ultrasound 4 times for pancreas
Gastric examination
Bile duct scintigraphy
Leukocytes scintigraphy
Liver puncture
MRI of the pituitary gland
Echo's of the stomach
Echo of the blood vessel in the abdomen
During my operation in 2019 of the umbilical hernia the surgeon told me that he tried
to look for something unusual during laparoscopy but did not see/find anything
unusual.
Findings of all the above :
None of the procedures gave any information. Everething was normal.
Pancreas 2022 :
Only in the pancreas there was a tiny little cyst found in 2022.
After 6 months the cyst was 50% smaller and on the third chek 6 months later it was
the same as the second time.
Pancreas 2023 :
I really wanted to undergo a fastingtest of 3 days in the hospital to be sure that there
is no insulinoma.
The results of the test were negative for a insulinoma.
The bloodtest showed that during eating of cracker day before fasting the insuline
level increased up to 514 while the referance is 17,8 - 173
During my hospital stay i did not experience pain in the left arm or leg
The pain in the stomach was a 2 or 3 on a scale of 10.
In the attachments you can find the results of the fasting test in the hospital.
Thank you very much for reading. I know it is a lot but I would like to present all of information. If anybody has a tip, meet something similar please let me know.
A 2022 medical news release: "Histamine-producing gut bacteria can trigger chronic abdominal pain"
https://www.sciencedaily.com/releases/2022/07/220727153643.htm
"The study found that the bacterium Klebsiella [produces] histamine, a known mediator of pain.
The bacterial histamine then activates the gut immune system through histamine-4 receptor, which draws immune mast cells into the intestines. These activated mast cells produce even more histamine and other pain-signalling mediators, triggering inflammation and pain."
Her doctors must be aware of this because they ordered testing for fecal histamine, which is rarely tested for.
So what to do about this?
"...a diet low in fermentable carbohydrates"
and
"...treatments targeting mast cells or histamine, such as mast cell stabilizers or antihistamines."
That page doesn't mention:
- there are also OTC capsules containing the DAO enzyme which breaks down histamine.
- Klebsiella is also associated with some severe inflammatory disorders, including Ankylosing Spondylitis which destroys the spine.
- there are low-histamine food lists in books and on the internet
- commonly used plant-derived mast cell stabilizers are quercetin, luteolin, fisetin
https://www.sciencedaily.com/releases/2022/07/220727153643.htm
"The study found that the bacterium Klebsiella [produces] histamine, a known mediator of pain.
The bacterial histamine then activates the gut immune system through histamine-4 receptor, which draws immune mast cells into the intestines. These activated mast cells produce even more histamine and other pain-signalling mediators, triggering inflammation and pain."
Her doctors must be aware of this because they ordered testing for fecal histamine, which is rarely tested for.
So what to do about this?
"...a diet low in fermentable carbohydrates"
and
"...treatments targeting mast cells or histamine, such as mast cell stabilizers or antihistamines."
That page doesn't mention:
- there are also OTC capsules containing the DAO enzyme which breaks down histamine.
- Klebsiella is also associated with some severe inflammatory disorders, including Ankylosing Spondylitis which destroys the spine.
- there are low-histamine food lists in books and on the internet
- commonly used plant-derived mast cell stabilizers are quercetin, luteolin, fisetin
I had a lot of these symptoms and my tests came out clean also. I went on the candida diet and in three months' time, I was feeling oh so much better. You will eliminate a lot of foods on that diet, so it can be used to diagnose other things. Book is called "The Candida Cure," by Ann Boroch. You can google it and find the PDF for free online if you don't want to buy the book. If you decide to try the diet, don't do the organ cleanses as that is very hard on your body and organs cleanse themselves. If you need support, let me know - I've been on the diet over 8 years now. I had pain so bad, I had to pull to the side of the road because breathing hurt so bad and the pain was REALLY bad. If your problem is not candida, you still may likely find an answer using this diet. It seems really hard but it's actually easy - let me know if you decide to do it and need help. I hope you will feel better soon!
1 Comments
Hi, ParrotQueen. Congratulations on overcoming your severe gut problem. That took a lot of determination.
The reason I didn't focus on Candida is that I think over many years she would have made the association of consuming sugar/sucrose and then having flareups. Plus Candida has been a known thing since the 1980s and the docs must have considered Candida. There's something missing here on what the docs looked into. Maybe the docs ruled out gut microbes, and maybe they are correct or maybe not.
We also have to account for the blood glucose problem. If the pancreas is inflamed/infected, that can mean it doesn't secrete enough insulin. Insulin should drive down the blood glucose level. If there is not enough, then there is high blood glucose after eating carbs. It turns out that Klebsiella is more likely to cause pancreatitis than Candida.
"The most common organisms associated with pancreatic infections are Escherichia coli, Klebsiella pneumoniae, Enterobacter spp., and Enterococcus spp"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7381849/
But on the other hand, if she ate a pound of Belgian chocolate before the first bad huge-gas episode, that tends a lot towards Candida. Meanwhile, Klebsiella is one of the *starch* loving bacteria that can behave like Candida.
Still, different species and strains of bacteria or yeast can behave differently, so anything is possible.
Her PET scan(s) can see many infections, but probably can't see Candida or Klebsiella since they are low level.
As you say, a restricted diet would treat a variety of gut microbe problems. As as a radical approach, even having nothing but meat and fat for a few days as a test is possible. Even though the Carnivore diet is a fad these days, there are still some rare people for whom it is medically necessary - but that's a different story.
There are also natural gut microbe killers for her to cautiously try. Raw garlic is a weaker one, Oregano oil is a strong one. Which ones did you try?
The reason I didn't focus on Candida is that I think over many years she would have made the association of consuming sugar/sucrose and then having flareups. Plus Candida has been a known thing since the 1980s and the docs must have considered Candida. There's something missing here on what the docs looked into. Maybe the docs ruled out gut microbes, and maybe they are correct or maybe not.
We also have to account for the blood glucose problem. If the pancreas is inflamed/infected, that can mean it doesn't secrete enough insulin. Insulin should drive down the blood glucose level. If there is not enough, then there is high blood glucose after eating carbs. It turns out that Klebsiella is more likely to cause pancreatitis than Candida.
"The most common organisms associated with pancreatic infections are Escherichia coli, Klebsiella pneumoniae, Enterobacter spp., and Enterococcus spp"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7381849/
But on the other hand, if she ate a pound of Belgian chocolate before the first bad huge-gas episode, that tends a lot towards Candida. Meanwhile, Klebsiella is one of the *starch* loving bacteria that can behave like Candida.
Still, different species and strains of bacteria or yeast can behave differently, so anything is possible.
Her PET scan(s) can see many infections, but probably can't see Candida or Klebsiella since they are low level.
As you say, a restricted diet would treat a variety of gut microbe problems. As as a radical approach, even having nothing but meat and fat for a few days as a test is possible. Even though the Carnivore diet is a fad these days, there are still some rare people for whom it is medically necessary - but that's a different story.
There are also natural gut microbe killers for her to cautiously try. Raw garlic is a weaker one, Oregano oil is a strong one. Which ones did you try?
"The most weard moment was two weeks ago, i ate some green fresh beans and after two bites i got this pain in the left arm, dizzy, pain on the chest, rash, and finally i fainted."
Oh yes, that certainly is very weird :)
There is such a thing as Oral Allergy Syndrome, very rare
https://my.clevelandclinic.org/health/diseases/23996-oral-allergy-syndrome
You don't even have to swallow for the bad effect to occur. Please note that allergy involves mast cells and histamine. If blood vessels dilate enough from histamine, then blood pressure going to the head drops and fainting can occur.
I think your friend should get and always carry an Epi-pen or some similar fast-auto-injection device. If she ever starts to have her lips swelling, get her to the Emergency Dept immediately. Anaphylaxis can kill.
OVERALL CONCLUSION
I think altogether what she should focus on is histamine and mast cells. Put aside test for IL-6 and TNF and all of that for now.
Push the docs to focus on histamine and mast cells.
Oh yes, that certainly is very weird :)
There is such a thing as Oral Allergy Syndrome, very rare
https://my.clevelandclinic.org/health/diseases/23996-oral-allergy-syndrome
You don't even have to swallow for the bad effect to occur. Please note that allergy involves mast cells and histamine. If blood vessels dilate enough from histamine, then blood pressure going to the head drops and fainting can occur.
I think your friend should get and always carry an Epi-pen or some similar fast-auto-injection device. If she ever starts to have her lips swelling, get her to the Emergency Dept immediately. Anaphylaxis can kill.
OVERALL CONCLUSION
I think altogether what she should focus on is histamine and mast cells. Put aside test for IL-6 and TNF and all of that for now.
Push the docs to focus on histamine and mast cells.
IMPORTANT: With her very high fecal histamine, wasn't she tested for Plasma Histamine and its metabolite Urinary Methylhistamine?
Has any doctor mentioned Mast Cells? Those immune cells can have a huge variety of effects when they become overactive. They have over 100 receptors and can secrete over 200 powerful biochemicals. They are found in abundance in the GI and in the skin. Does she ever have skin flushing episodes with no apparent cause?
Related to that, have you heard the term Aquagenic Urticaria? (a very rare rash from water/shower, involving histamine; and histamine is mostly made by mast cells.) See the connection?
Excess mast cells would not be seen on a scan or by a camera, they can be detected only by a biopsy snip. That is as a parallel commonly done these days with an endoscope in the *esophagus* (food tube to the stomach), looking for a once mysterious condition called Eosinophilic Esophagitis. However, to look deeper into the intestine at her crucial spot, they could use an enteroscope. So that's a possibility.
Has any doctor mentioned Mast Cells? Those immune cells can have a huge variety of effects when they become overactive. They have over 100 receptors and can secrete over 200 powerful biochemicals. They are found in abundance in the GI and in the skin. Does she ever have skin flushing episodes with no apparent cause?
Related to that, have you heard the term Aquagenic Urticaria? (a very rare rash from water/shower, involving histamine; and histamine is mostly made by mast cells.) See the connection?
Excess mast cells would not be seen on a scan or by a camera, they can be detected only by a biopsy snip. That is as a parallel commonly done these days with an endoscope in the *esophagus* (food tube to the stomach), looking for a once mysterious condition called Eosinophilic Esophagitis. However, to look deeper into the intestine at her crucial spot, they could use an enteroscope. So that's a possibility.
1 Comments
Histamine causes blood vessels to become permeable/leaky, and that can cause water-weight gain.
But she should also rule out a different cause which is hypoalbumenemia.
But she should also rule out a different cause which is hypoalbumenemia.
What family history does she have of overactive immune conditions such as Lupus, Sjogrens, Raynaud's, Rheumatoid Arthritis, severe allergies to food or to bee stings or mold or perfumes?
What happened in the month or two before her first episode? If nothing special, then what was unsual in the previous two years? Foreign travel (parasite?), exposure to chemical toxins, extreme stress (apart from excess exercise)?
She's had so many scans that it's doubtful there is some anatomical cause.
"Small intestine ecam with a camera that i swallowed (2016)"
Did that look only for bumps/tumors, or also for redness/inflammation at that one crucial spot in the small intestine?
Is it possible that the left arm pain is "referred pain", caused by that one crucial spot?
What happened in the month or two before her first episode? If nothing special, then what was unsual in the previous two years? Foreign travel (parasite?), exposure to chemical toxins, extreme stress (apart from excess exercise)?
She's had so many scans that it's doubtful there is some anatomical cause.
"Small intestine ecam with a camera that i swallowed (2016)"
Did that look only for bumps/tumors, or also for redness/inflammation at that one crucial spot in the small intestine?
Is it possible that the left arm pain is "referred pain", caused by that one crucial spot?
2 Comments
Was there some prior infection? Some long courses of antibiotics?
Any possible exposure to Lyme Disease? In Belgium or in travel. There is even Lyme in Australia now. There doesn't need to be seen the telltale bull's eye rash.
Hi, first of all: what medications is she taking? Any corticosteroids such as prednisone?
Next: what about blood tests, aside from insulin? Specifically cortisol, and also inflammatory markers such as the basic two being CRP and ESR; then more advanced such as IL-1, IL-6, TNF?
What about ANA? Anti Nuclear Antibody
From what I have seen:
-when a patient is ill for many years and sees many specialists
-with no diagnosis
-particularly women
-including illness onset in young very fit women
...then it's most often immune system dysfunction. Some gut dysfunction is often a contributing factor.
Next: what about blood tests, aside from insulin? Specifically cortisol, and also inflammatory markers such as the basic two being CRP and ESR; then more advanced such as IL-1, IL-6, TNF?
What about ANA? Anti Nuclear Antibody
From what I have seen:
-when a patient is ill for many years and sees many specialists
-with no diagnosis
-particularly women
-including illness onset in young very fit women
...then it's most often immune system dysfunction. Some gut dysfunction is often a contributing factor.
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