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Diagnostic difficult despite many analyzes and tests

Messages
52
At last with this i have also photophobia, and i'm hurting when there a lot of wind

Thank you for your help and to share your experiences !
 

BeADocToGoTo1

Senior Member
Messages
536
Hi @nini

It looks like you have already done a tremendous amount of research. Very good to see that! That still does not help you resolve it, which is frustrating, I know.

A few more thoughts on what I read of your symptoms:
  • Albumin bit high - liver, kidney tests, MRI MRCP
  • Dizzy spells when changing position
  • Ferritin bit low - might be the link to your dizzy spells. See additional tests below
  • Zinc bit low - see note below on malabsorption, high use, excretion
  • Estradiol and progesterone bit high
  • Skin pain - See my parathyroid and Vitamin D question below
  • Unrestful sleep - See my blood glucose question below
  • Tough to gain weight - see the further pancreas tests. Do you lift weights daily?
  • Dry, flaking skin - see my points on vitamin D, A, blood glucose test, additional thyroid tests
  • Hard to wake up at the morning, low energy - additional thyroid, pancreas and nutrient testing
  • Dryness mouth and eyes, cold hands - additional thyroid and nutrient testing
  • Mucus in the morning - Do you ever feel heartburn, lump in throat, post nasal drip, rawness breathing?
  • Slightly elevated benzoate - Does any of your food contain preservatives (e.g. E210, E211, E212, and E213)? Have you been checked for SIBO via a breath test?
Have the following levels been checked?
  • calcium
  • albumin (for corrected calcium calculation) - Looked a bit elevated
  • ionized calcium (bound to other minerals)
  • parathyroid hormone PTH (helps regulate calcium, vitamin D, and phosphorus levels in the body)
  • osteocalcin (vitamin K dependent calcium binding protein)
  • Vitamin D (25-hydroxy)
Has your kidney function been checked?

For ferritin issues, of course infections and bleeding have to be ruled out, but have all of these been checked together?
  • Iron,
  • Ferritin,
  • Total Iron Binding Capacity (TIBC)
Have all the blood glucose balance and insulin production tests been checked? A few of your symptoms warrant testing these properly. These would include:
  • HbA1c, triglycerides, c-peptide, insulin, ketones, glucose
For further pancreas testing, the trypsin I mentioned already. Certainly good since you are eating so much protein.
  • Blood test fasting trypsin (to see if you produce enough enzyme for protein breakdown)
  • Stool elastase that shows the exact mcg/mL. It is tough to see from your graph, but it looks low. So an exact measurement would be good to see. Just because many of your symptoms overlap with EPI, and your stool pictures also show malabsorption. Eating meat did slow the passage of your food down considerably, which is visible in the stool as well. Less yellow, which is good. However, this does not mean you are digesting and absorbing everything optimally.
  • When you mentioned brazil nut pieces left in the stool, this clearly shows that you are/were not digesting fat properly. It would be interesting to do another 24 hour fecal lipids test now that your diet has changed considerably
  • Have you ever tried taking digestive or pancreatic enzymes with your food, either during the prior diet or the current one? Some doctors will allow this to see whether it alleviates symptoms, even if the tests are not absolutely clear.
Have you ruled out celiac's disease?

Have you ruled out cystic fybrosis?

Have these levels been checked?
  • Gamma-Glutamyl Transferase (GGT)
  • Homocysteine
Are you taking supplements that contain B6?

Have you checked B9, B12, zinc, copper, molybdenum levels?

Have the fat soluble vitamin levels been tested?
  • Vitamin A, E, D, K and CoQ10 (not officially a vitamin)
To rule out more serious issues with liver, gallbladder, pancreas and intestines it may be worth looking into the MRP with MRCP of the abdomen. You get a 3D picture of the ducts and a great overview of all those abdominal organs.

Have you tested copper levels, zinc levels and for Kryptopyrrole (a.k.a. Mauve, Pyrrole, HPL)? The latter is an oxidative stress marker and indication of vitamin B6 and zinc deficiencies as pyrroles bind to them. What I read was that a balanced copper-to-zinc ratio of roughtly between 0.7 and 1.0 in the blood is important. Do not just take zinc without knowing your copper levels and vice versa. Zinc lowers copper in the body, and when copper builds up it depletes vitamin C. Zinc, magnesium and calcium compete for absorption. But since you have low Zinc it can point to e.g. infection (Your immune system needs Zinc), malabsorption or excreting too much due to the pyrrole. All that could result in is to eat more zinc containing foods or add a supplement.
 
Last edited:

BeADocToGoTo1

Senior Member
Messages
536
Are you hydrating enough as some of your symptoms can also be from just not drinking enough water and your electrolyte balances. Same with the dizzy spells.

On that same note, are you adding enough high quality, mineral rich, salt to your diet? For example, pink himalayan, celtic sea salt, A. Vogel (with herbs) or hawaiian red salt. Since you are not eating processed, packaged food, you will be getting far lower levels of salt than perhaps thought.

One other question. What do you use to prepare your meat with? What kind of oil? Sauces?
 
Messages
52
Are you hydrating enough as some of your symptoms can also be from just not drinking enough water and your electrolyte balances. Same with the dizzy spells.

On that same note, are you adding enough high quality, mineral rich, salt to your diet? For example, pink himalayan, celtic sea salt, A. Vogel (with herbs) or hawaiian red salt. Since you are not eating processed, packaged food, you will be getting far lower levels of salt than perhaps thought.

One other question. What do you use to prepare your meat with? What kind of oil? Sauces?

I drink a lot along the day because of my dry mouth, but i have already dry mouth without saliva. I have only more saliva when i eat, but not a lot, and also when i used pilocarpine but it's effective only 30 min.

I used herbs like origan or thyme and of course salt on my food. I use this salt https://fr.openfoodfacts.org/produit/3445850061370/sel-fin-de-guerande-le-guerandais

Before i used olive oil but now i prefer to cook meat with animal fat like duck fat. Now i no longer use sauce with meat
 
Messages
52
Hi @nini

It looks like you have already done a tremendous amount of research. Very good to see that! That still does not help you resolve it, which is frustrating, I know.

A few more thoughts on what I read of your symptoms:
  • Albumin bit high - liver, kidney tests, MRI MRCP
  • Dizzy spells when changing position
  • Ferritin bit low - might be the link to your dizzy spells. See additional tests below
  • Zinc bit low - see note below on malabsorption, high use, excretion
  • Estradiol and progesterone bit high
  • Skin pain - See my parathyroid and Vitamin D question below
  • Unrestful sleep - See my blood glucose question below
  • Tough to gain weight - see the further pancreas tests. Do you lift weights daily?
  • Dry, flaking skin - see my points on vitamin D, A, blood glucose test, additional thyroid tests
  • Hard to wake up at the morning, low energy - additional thyroid, pancreas and nutrient testing
  • Dryness mouth and eyes, cold hands - additional thyroid and nutrient testing
  • Mucus in the morning - Do you ever feel heartburn, lump in throat, post nasal drip, rawness breathing?
  • Slightly elevated benzoate - Does any of your food contain preservatives (e.g. E210, E211, E212, and E213)? Have you been checked for SIBO via a breath test?
Have the following levels been checked?
  • calcium
  • albumin (for corrected calcium calculation) - Looked a bit elevated
  • ionized calcium (bound to other minerals)
  • parathyroid hormone PTH (helps regulate calcium, vitamin D, and phosphorus levels in the body)
  • osteocalcin (vitamin K dependent calcium binding protein)
  • Vitamin D (25-hydroxy)
Has your kidney function been checked?

For ferritin issues, of course infections and bleeding have to be ruled out, but have all of these been checked together?
  • Iron,
  • Ferritin,
  • Total Iron Binding Capacity (TIBC)
Have all the blood glucose balance and insulin production tests been checked? A few of your symptoms warrant testing these properly. These would include:
  • HbA1c, triglycerides, c-peptide, insulin, ketones, glucose
For further pancreas testing, the trypsin I mentioned already. Certainly good since you are eating so much protein.
  • Blood test fasting trypsin (to see if you produce enough enzyme for protein breakdown)
  • Stool elastase that shows the exact mcg/mL. It is tough to see from your graph, but it looks low. So an exact measurement would be good to see. Just because many of your symptoms overlap with EPI, and your stool pictures also show malabsorption. Eating meat did slow the passage of your food down considerably, which is visible in the stool as well. Less yellow, which is good. However, this does not mean you are digesting and absorbing everything optimally.
  • When you mentioned brazil nut pieces left in the stool, this clearly shows that you are/were not digesting fat properly. It would be interesting to do another 24 hour fecal lipids test now that your diet has changed considerably
  • Have you ever tried taking digestive or pancreatic enzymes with your food, either during the prior diet or the current one? Some doctors will allow this to see whether it alleviates symptoms, even if the tests are not absolutely clear.
Have you ruled out celiac's disease?

Have you ruled out cystic fybrosis?

Have these levels been checked?
  • Gamma-Glutamyl Transferase (GGT)
  • Homocysteine
Are you taking supplements that contain B6?

Have you checked B9, B12, zinc, copper, molybdenum levels?

Have the fat soluble vitamin levels been tested?
  • Vitamin A, E, D, K and CoQ10 (not officially a vitamin)
To rule out more serious issues with liver, gallbladder, pancreas and intestines it may be worth looking into the MRP with MRCP of the abdomen. You get a 3D picture of the ducts and a great overview of all those abdominal organs.

Have you tested copper levels, zinc levels and for Kryptopyrrole (a.k.a. Mauve, Pyrrole, HPL)? The latter is an oxidative stress marker and indication of vitamin B6 and zinc deficiencies as pyrroles bind to them. What I read was that a balanced copper-to-zinc ratio of roughtly between 0.7 and 1.0 in the blood is important. Do not just take zinc without knowing your copper levels and vice versa. Zinc lowers copper in the body, and when copper builds up it depletes vitamin C. Zinc, magnesium and calcium compete for absorption. But since you have low Zinc it can point to e.g. infection (Your immune system needs Zinc), malabsorption or excreting too much due to the pyrrole. All that could result in is to eat more zinc containing foods or add a supplement.


ferritin it's ok now https://forums.phoenixrising.me/att....37793/?hash=5baa89133fb7031b33ffbeb40cdedcdc

i have already made calcium rate

my pancreas test with lipasemie was normal https://forums.phoenixrising.me/att....37794/?hash=5baa89133fb7031b33ffbeb40cdedcdc https://forums.phoenixrising.me/att....37795/?hash=5baa89133fb7031b33ffbeb40cdedcdc

i have ever took zinc supplement but nothing happened to my illness.

my glucose test are already correct

For mucus i have this many times during the week but no all the day. And i haven't got heartburn or others, my breath is normal, i can make sports like usually.

No i didn't lift weight, it's stable

For the benzoate i see it was because of clostridum https://medecine-integree.com/metabolites-organiques-urinaires/ but after i have made analyzes for parasits and microbiology and it was normal.

I have already made breath test with lactulose and fuctose but it's been long time, and if i remember it was negative

i don't chek vitamin K

For the kidney fonction i have made creatinine test and that's all

for gama gt it's here and it was normal https://forums.phoenixrising.me/att....37796/?hash=5baa89133fb7031b33ffbeb40cdedcdc
homocysteine i have never test

for the celiac disease i have test tranglutaminase https://forums.phoenixrising.me/att....37797/?hash=5baa89133fb7031b33ffbeb40cdedcdc

my vitamin b oils contains b6

https://forums.phoenixrising.me/att....37798/?hash=5baa89133fb7031b33ffbeb40cdedcdc for stool elastase

https://forums.phoenixrising.me/attachments/dsc_0175-jpg.37799/ i have chek b12 and b9 but i don't make vit A, E, cooper and molybdenum, but i take b12 oils and also mixed oil wich contains molybdenum, selenium and iodine.
 

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Messages
52
And yes i have ever tried digestive enzyme before but no results, it was the same digestion.

I've tested a lot of thing like essential oils, liver cure, hydrotherapie, diamine oxydade, carpylic acid, multi vitamin, magnesium oil, zinc, differents types of pre and probiotic, glutamin, anafranil, n acétyl cystéine, jaborandi extract for dryness, butyric acid, high dose of vit c, complex vit b, acetyl l carnitine, msm, epa/dha, huperzine a, vit d, vit k, supplement, fast, grape cure, cérécholine, bétaine hcl, complex of amino acid, quercetin, bud macerats, dmae, monolaurin, Q10, lactoferrin, bcaa, nadh, milk thistle, SAMe, alpha lipoic acid, origan, mushrooms therapeutics of donatini doctor, anti parasitic cure of doctor clark, etc

and also i eat only biological fresh food

all doctors i see explain me it's the bowel irritable syndrome or chronic fatigue, so i think they don't really know, it's too simply to tell that, nothing in my analyzes could explain all my symptoms.

the only setting quiet low it's my vit b12, may be it's will be longer to remake an stock of b12 because of my ancient vegetarian diet. But until now i observe neither improvement.
 

BeADocToGoTo1

Senior Member
Messages
536
Hi @nini

You have done a lot of testing, which is good to see.

The reason I asked about the fat soluble vitamins is that it can also point to malabsorption due to EPI. Vitamin D and K deficiencies were some of the first to show up in my case. What was your vitamin D level? It is also why I mentioned osteocalcin as a blood test as it is linked with Vitamin K. Well worth checking. So you completed the parathyroid (not to be confused with thyroid) tests?

Regarding your blood glucose tests that you mentioned were good. What was your fasting glucose, c-peptide and HbA1c level if you do not mind sharing?

A couple of things stand out to me:
  • Low B12. Have you completed these tests? Since vitamin B12 can be impacted by EPI (or other causes of malabsorption), these tests check for other potential causes of B12 issues, such as autoimmune causes of gastritis and pernicious anemia.
    • Antiparietal Cell Antibody (APCA),
    • Methylmalonic Acid (MMA),
    • Intrinsic Factor Antibody (IFA) tests
  • And more imporantly lowish elastase. Yes, officially 200 micro gram/mL is the level at which a gastroenterologist will start thinking EPI (exocrine pancreatic insufficiency). My elastase was just a smidge under that 200 level when I was bedridden and at my worst. Since then I have had lower and higher test results. But whenever you get a reading around the 200 micro gram/mL mark there is a very high probability that you have EPI. A healthy pancreas will more likely produce double or more.
Have you done a toxic exposure panel? For example:
  • Doctor's Data Toxic Metals or
  • Quest Diagnostics Heavy Metals Comprehensive Panel or
  • Great Plains Laboratory Toxic Environmental (GPL-TOX)
 
Messages
52
Hi @nini

You have done a lot of testing, which is good to see.

The reason I asked about the fat soluble vitamins is that it can also point to malabsorption due to EPI. Vitamin D and K deficiencies were some of the first to show up in my case. What was your vitamin D level? It is also why I mentioned osteocalcin as a blood test as it is linked with Vitamin K. Well worth checking. So you completed the parathyroid (not to be confused with thyroid) tests?

Regarding your blood glucose tests that you mentioned were good. What was your fasting glucose, c-peptide and HbA1c level if you do not mind sharing?

A couple of things stand out to me:
  • Low B12. Have you completed these tests? Since vitamin B12 can be impacted by EPI (or other causes of malabsorption), these tests check for other potential causes of B12 issues, such as autoimmune causes of gastritis and pernicious anemia.
    • Antiparietal Cell Antibody (APCA),
    • Methylmalonic Acid (MMA),
    • Intrinsic Factor Antibody (IFA) tests
  • And more imporantly lowish elastase. Yes, officially 200 micro gram/mL is the level at which a gastroenterologist will start thinking EPI (exocrine pancreatic insufficiency). My elastase was just a smidge under that 200 level when I was bedridden and at my worst. Since then I have had lower and higher test results. But whenever you get a reading around the 200 micro gram/mL mark there is a very high probability that you have EPI. A healthy pancreas will more likely produce double or more.
Have you done a toxic exposure panel? For example:
  • Doctor's Data Toxic Metals or
  • Quest Diagnostics Heavy Metals Comprehensive Panel or
  • Great Plains Laboratory Toxic Environmental (GPL-TOX)


hello, thank for your comment

No i didn't do this, i advise to my medic to make test for intrinsic factor but he refused, it's complicated to search a doctor in france who accept to make advanced analyzes.


i have made chelation provocation test with dmps, but this test compare values with provocation with the scale without provocation, so i think a lot of people are above because of the provocation. I was too high in mercury, lead and arsenic but it's not significiant because all of people who made test with provocation for example have a lot of copper. So i don't know what to think about this test

https://forums.phoenixrising.me/att....37833/?hash=c523009bca73f216d69d5cca8c35d1f4

https://forums.phoenixrising.me/att....37834/?hash=c523009bca73f216d69d5cca8c35d1f4

https://forums.phoenixrising.me/att....37835/?hash=c523009bca73f216d69d5cca8c35d1f4

https://forums.phoenixrising.me/att....37837/?hash=c523009bca73f216d69d5cca8c35d1f4

https://forums.phoenixrising.me/att....37838/?hash=c523009bca73f216d69d5cca8c35d1f4

https://forums.phoenixrising.me/att....37839/?hash=c523009bca73f216d69d5cca8c35d1f4
 

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Messages
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Messages
52
i see a little your topic on cfs and epi, but except digestive enzyme what do you precognize ? how did you handle it ?
I think i will try to supplement in potassium to my dryness and i have see on a topic that blood test aren't significant.

I will try also to use an other enzyme more powerful, if ou have a brand to advide me.
 

BeADocToGoTo1

Senior Member
Messages
536

That is VERY low and not something to dismiss at all! It is very important. You are in an area where not only is it a warning sign of something that is not quite right, but you can do damage to your system. Vitamin D is more of a hormone and used in many metabolic processes in your body.

Healthy levels are around 40-50 (ng/mL)

Are you able to handle cod liver oil. I will take a tablespoon multiple times per week. If you can handle vitamin D pills you might want to look into taking 5,000 IU pills daily for a while until you are in a healthy range again. Also, the obvious.....more sunshine and being outdoors. Our DNA is not built on being indoors so long and it shows.
 

BeADocToGoTo1

Senior Member
Messages
536
i see a little your topic on cfs and epi, but except digestive enzyme what do you precognize ? how did you handle it ?
I think i will try to supplement in potassium to my dryness and i have see on a topic that blood test aren't significant.

I will try also to use an other enzyme more powerful, if ou have a brand to advide me.

The enzymes you had listed all seem to make the right noises. The problem with over the counter ones are that there are many other ingredients in them, they are not enteric coated and so often do not make it past the stomach. Pancreatic enzymes (a.k.a. pancrelipase) need to be activated in the duodenum, not the stomach, for them to be useful. If you are looking in that direction I would ask your doctor for a prescription for e.g. Creon (or another brand). The reason is that the quantity of enzymes are tightly controlled so you do not have to worry about quality or the age of the bottle, the pill or the batch being wildly different or even useless for the OTC one. Even storing it incorrectly can have an effect. Prescription are mostly enteric coated so they activate in the duodenum and survive the acid bath in the stomach. With prescription you take a number of variables out of the equation and can just focus on how many pills are good for your personal case and meal. It is also important how you take them. The first pill after the first bite. The last pill before the last bite. And if you take more, spread in between. You want it to be mixed with your food when it hits the duodenum. Many OTC ones are also just now powerful enough in enzyme quantity. And lastly, a prescription is going to be much cheaper.

Here is a thread I started on the link between CFS and EPI (exocrine pancreatic insufficiency). Since many doctors are unaware of many of the symptoms and how to really comprehensively help people with EPI I ended up writing a book on everything I had learned. Some of the symptoms can be quite subtle for years before things start really breaking down. It is great that you are listening to your body and recognizing that something is off and looking for answers.

https://forums.phoenixrising.me/thr...y-epi-and-chronic-fatigue-syndrome-cfs.62997/
 

BeADocToGoTo1

Senior Member
Messages
536
and there is something i don't really understand in this test https://forums.phoenixrising.me/thr...s-and-tests.80305/#lg=attachment37773&slide=0 it's why my lipid in relation to the dry weight it's too low

i have see in this site https://www.chu.ulg.ac.be/jcms/c_352003/fr/graisses-selles#:~:text=Teneur en lipides/poids sec,être absents ou en traces. it's because of constipation or undernutrition

That is curious. I would agree about the malnutrition or malabsorption as a possibility. Was that on carnivore diet? Vegetarian diet?

Since you are on such a restricted diet, this can also be a cause. Are you able to add more healthy fat to the diet? Nuts? Avocado? Olive? Olive Oil? Full fat plain yoghurt or kefir? More oily fish? How does that make you feel? Does it cause bloating, irritation, intestinal discomfort, stool changes? Perhaps in combination with a prescription pancrelipase pill and more fat in the diet this will correct. Are you able to handle Gouda cheese, for healthy fat and some vitamin K?
 
Messages
52
That is curious. I would agree about the malnutrition or malabsorption as a possibility. Was that on carnivore diet? Vegetarian diet?

Since you are on such a restricted diet, this can also be a cause. Are you able to add more healthy fat to the diet? Nuts? Avocado? Olive? Olive Oil? Full fat plain yoghurt or kefir? More oily fish? How does that make you feel? Does it cause bloating, irritation, intestinal discomfort, stool changes? Perhaps in combination with a prescription pancrelipase pill and more fat in the diet this will correct. Are you able to handle Gouda cheese, for healthy fat and some vitamin K?

no this is was before my carnivore diet. Yes it's strange because before my carnivore diet i eat a lot of salad with olive oil, mackerel and sardine, bread with olive oil, avocado, indian food with panir, kefir, grek cheese sometimes, cod liver, etc
Yes i can eat gouda or other
 

BeADocToGoTo1

Senior Member
Messages
536
no this is was before my carnivore diet. Yes it's strange because before my carnivore diet i eat a lot of salad with olive oil, mackerel and sardine, bread with olive oil, avocado, indian food with panir, kefir, grek cheese sometimes, cod liver, etc
Yes i can eat gouda or other

I was sensitive to most everything I ate for a long while during my ill period. However, I never had any sensitivities or allergies growing up, and could eat absolutely everything. During the bad time I was nauseous for months and had years of pain and intestinal distress. Since I was not digesting properly with mucus and stomach lining issues, my body was sensing these partially digested particles as invaders and reacting. Everything felt inflamed and I lived on chicken and vegetable soup for a long time. A form of reset diet, albeit forced. It took a while to calm down once I took the insults away, started using pancreatic enzymes, and rebalanced the nutrient deficiencies. Most all sensitivities went away.

Your carnivore diet could be seen as a 'reset' diet. It helps remove any possible irritant to help calm down the intestinal system. However, if you are not digesting food properly due to lack of enzymes it does not fully resolve the issue. And at some point in the future, adapting the diet again to be more rounded will help overall nutrient balances.

The enzymes you showed are expensive! The instructions are ridiculous. You should take them with food, not without meals...pointless and careless instructions. "Gastro-resistant" sounds good, but I do not buy that it is actually enteric coated. Sounds like marketing speak. They even state that the enzyme strength has not been verified on the bottle. This is another reason for getting a presciption!