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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?
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:
Have the following levels been checked?
- 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?
Has your kidney function 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)
For ferritin issues, of course infections and bleeding have to be ruled out, but have all of these been checked together?
Have all the blood glucose balance and insulin production tests been checked? A few of your symptoms warrant testing these properly. These would include:
- Iron,
- Ferritin,
- Total Iron Binding Capacity (TIBC)
For further pancreas testing, the trypsin I mentioned already. Certainly good since you are eating so much protein.
- HbA1c, triglycerides, c-peptide, insulin, ketones, glucose
Have you ruled out celiac's disease?
- 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 cystic fybrosis?
Have these levels been checked?
Are you taking supplements that contain B6?
- Gamma-Glutamyl Transferase (GGT)
- Homocysteine
Have you checked B9, B12, zinc, copper, molybdenum levels?
Have the fat soluble vitamin levels been tested?
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.
- Vitamin A, E, D, K and CoQ10 (not officially a vitamin)
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.
And yes i have ever tried digestive enzyme before but no results, it was the same digestion...
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:
Have you done a toxic exposure panel? For example:
- 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.
- Doctor's Data Toxic Metals or
- Quest Diagnostics Heavy Metals Comprehensive Panel or
- Great Plains Laboratory Toxic Environmental (GPL-TOX)
Do you remember what it was, what strength? How did you use it? How long did you use it for?
And for vit D it was juste quite low but not very important https://forums.phoenixrising.me/att....37840/?hash=7cfa64da914127d56f9540ee6c4f04f0
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.
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?
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