Thanks Donna for information on your fat intake. Yes I have come to realize that most in here are getting good sources of fat & protein from meats. I can't not eat meat. I ate a shrimp last night and that worked out ok, but I would need to eat more than 1 and there is the problem, I can't eat enough of anything.
If you saw from my above post you will see I ordered a new liquid protein drink from Kate Farm, https://katefarms.com/
I think this will fill the gap till I get things more balanced.
Thanks for the offer of a scone recipe I would certainly love to try it ! No hurries, when you have time.
I love to bake, it's therapy for me !
Thank You so much !
Hugs,
Rebecca
Feeling Lost & Confused
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
The initial issues I see with the kate farms product is the ingredients
https://katefarms.com/collections/front ... ts/vanilla
the issue with the ingredients is that if you react to one or two of them, you will react to the whole product type thing.
we encourage people to go with items that have no more than 5 ingredients.
if you are reacting to soy, then you are high risk to react to the pea protein that is in this product
Also the Super foods blend has lots of ingredients and quite a few of these are issues for MC'ers
there are lots of single source type protein powders that are gluten, free and dairy free
https://katefarms.com/collections/front ... ts/vanilla
the issue with the ingredients is that if you react to one or two of them, you will react to the whole product type thing.
we encourage people to go with items that have no more than 5 ingredients.
if you are reacting to soy, then you are high risk to react to the pea protein that is in this product
Also the Super foods blend has lots of ingredients and quite a few of these are issues for MC'ers
there are lots of single source type protein powders that are gluten, free and dairy free
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thanks Gabes for looking at the ingredients in the Kate Farm product, I so appreciate that. I ordered 12, but will go slow and see what happens.
Good tip on keeping ingredients to just 5, I like that and it makes sense.
I am not sure if I am having issues with soy, of course that is what my TPN is and so far it doesn't seem to be adding to the WD. In fact I have to say things have slowed down in regards to frequency. I still have WD but wow I am not going 15 times a day.
I have had no gluten for 5 days and I honestly feel this is making a difference with the frequency problem, and I have had this skin rash thing going on for some time as well as some fluid under my eye. The rash is almost gone and the fluid is going down. I am very pleased to see some positive changes in a couple of areas. Having less trips to the bathroom is huge and I know you all get that !!
I am so getting that gluten is an issue now ! This is BIG !!
I am going to look for some single source type protein powders that are gluten, free and dairy free as you suggested.
Thank You for this !!
Hugs, Rebecca
Good tip on keeping ingredients to just 5, I like that and it makes sense.
I am not sure if I am having issues with soy, of course that is what my TPN is and so far it doesn't seem to be adding to the WD. In fact I have to say things have slowed down in regards to frequency. I still have WD but wow I am not going 15 times a day.
I have had no gluten for 5 days and I honestly feel this is making a difference with the frequency problem, and I have had this skin rash thing going on for some time as well as some fluid under my eye. The rash is almost gone and the fluid is going down. I am very pleased to see some positive changes in a couple of areas. Having less trips to the bathroom is huge and I know you all get that !!
I am so getting that gluten is an issue now ! This is BIG !!
I am going to look for some single source type protein powders that are gluten, free and dairy free as you suggested.
Thank You for this !!
Hugs, Rebecca
Rebecca,
With your gastroparesis a high fat diet would not be helpful as it would delay emptying further. Perhaps there are other choices in terms of your tube feeding formula that you might tolerate better. Have you tried different formulas? Also, are they by passing your stomach and feeding you directly into your small intestine?
With your gastroparesis a high fat diet would not be helpful as it would delay emptying further. Perhaps there are other choices in terms of your tube feeding formula that you might tolerate better. Have you tried different formulas? Also, are they by passing your stomach and feeding you directly into your small intestine?
Donna
Diagnosed with CC August 2011
Diagnosed with CC August 2011
Thanks Donna, I have a feeding tube in my arm, ( I was on this same feeding method for two years and then off it for 8 mo, until the MC showed up and now I am back on it)
The doctors said they can't ever use my stomach because of the gatroparesis and now because of the MC they said I am not a candidate to by pass the stomach and use the intestines, which we were going to do.
So my feeding tube is called TPN ( total parental nutrition) It goes into my blood. I have a central line in my arm to my heart ( called a picc line) I have a second central line ( a port) in my chest that also goes to the heart that we use for IVIG.
TPN in the USA only comes with the soy, but I am thinking soy isn't an issue because my WD is less frequent on the soy TPN and no gluten now for several days.
You would think if soy was an issue I would be having major problems all over my body, because I was running the TPN for 24 hours a day for the first 4 days after I was home from hospital and now I am running it 14 hours a day.
Hugs,
Rebecca
The doctors said they can't ever use my stomach because of the gatroparesis and now because of the MC they said I am not a candidate to by pass the stomach and use the intestines, which we were going to do.
So my feeding tube is called TPN ( total parental nutrition) It goes into my blood. I have a central line in my arm to my heart ( called a picc line) I have a second central line ( a port) in my chest that also goes to the heart that we use for IVIG.
TPN in the USA only comes with the soy, but I am thinking soy isn't an issue because my WD is less frequent on the soy TPN and no gluten now for several days.
You would think if soy was an issue I would be having major problems all over my body, because I was running the TPN for 24 hours a day for the first 4 days after I was home from hospital and now I am running it 14 hours a day.
Hugs,
Rebecca
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
I have a few photo albums set up in this area
http://www.perskyfarms.com/phpBB2/viewforum.php?f=38
http://www.perskyfarms.com/phpBB2/viewforum.php?f=38
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I would be surprised if there are more than a handful of MDs who understand this, but believe it or not, the clenching strength of the lower esophageal sphincter (LES) is determined by the pH level to which the backside (stomach side) is exposed. IOW, the lower the pH (the more acidic) the stomach contents, the tighter the LES will (normally) clench. If the stomach has only weak acidity, the LES tends to relax, which can allow reflux.Rebecca wrote:But when you speak of of being low on stomach acid would increasing that make my reflux even worse?
This is why PPIs weaken the LES and worsen the very problem they are prescribed to treat. PPIs neutralize the acid in the stomach, but because this weakens the clenching strength of the LES, reflux is much worse when PPIs are used. The patient is unaware of the reflux though because she or he cannot feel it with the acid neutralized. So they mistakenly think that the PPI is helping to stop the reflux. The LES is a muscle, and if it is not exercised regularly it loses it's strength. This is how PPIs severely compromise the function of the LES. Weak normal acid production can have the same effect. Of course if the LES has been surgically or chemically damaged, all bets are off. Rebuilding the strength of the LES can take a lot of time, in some cases, but if you have never taken a PPI, it should be easier. Here's a link to a longer article with more detail if you are interested:
http://www.microscopiccolitisfoundation ... 112716.pdf
If that's from a biopsy report, it indicates a possible early stage of celiac disease. If it's from a (visual) endoscope report (IOW, if the GI doc wrote that, rather than a pathologist), it suggests that like most of us, you have the same type of inflammation in your small intestine as in your colon (T cell infiltration). Alternatively, it could mean that your pancreas is not providing an adequate supply of bicarbonate, resulting in acid damage to the mucosa of the duodenum.Rebecca wrote:On one of my tests it says I have abnormal mucosa of the duodenum, does this say anything of value?
Erythromelalgia sounds to me a lot like a syndrome caused by endothelial dysfunction. IOW the blood vessels of your feet have lost much of their viscosity so that they are not able to properly expand and contract with blood pressure changes, compromising their ability to properly regulate blood flow to and from the feet. Endothelial dysfunction can be treated by a certain combination of the active forms of vitamins B-12, B-9, and B-6. The prescription product known as Metanx treats endothelial dysfunction, but there is now an OTC generic available. Here's what I (and others here) use (because it's one-fifth the cost of Metanx):
https://www.amazon.com/Thorne-Research- ... 00O5AHC4S/
But if erythromelalgia is not caused by endothelial dysfunction, then this product might not be appropriate.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
SAY WHAT .. "I would be surprised if there are more than a handful of MDs who understand this, but believe it or not, the clenching strength of the lower esophageal sphincter (LES) is determined by the pH level to which the backside (stomach side) is exposed. IOW, the lower the pH (the more acidic) the stomach contents, the tighter the LES will (normally) clench. If the stomach has only weak acidity, the LES tends to relax, which can allow reflux."
I sorta get that.... LOL
I have never taken a PPI, however when they have me prisoner in the hospital they always try to put it in my IV bag. It is always a standing order, I have tried to get it off but somehow its always there, and every time the pathologist writes his report up he says I should be on PPI's. But I don't take them. Those things are nasty and have some recent science about causing dementia.
I can usually tolerate the problem but for some reason it much worse since the MC came on board.
I believe the the test for my abnormal mucosa was a biopsy. wow interesting you brought up the pancreas I have been asking my doctors about my pancreas for some time, for a while I was have a white bm. This went on for maybe 2 months, it was so white I could hardly see it in toilet. The problem only occurs now and again. This WD has never been white, so I am guessing what ever was going on with that is not as bad.
I think your thoughts on the Erythromelalgia are spot on, and I have looked into Metanx and actually have a print out of their product. I am waiting for this MC thing to calm down before adding anymore supplements. I know my neurologist at Stanford would write the script and it wouldn't cost me much. I have looked at Thorne's Methyl-Guard Plus , a year ago I ended up getting Seeking Health's Active B12 with L-5MTHF, and I believe it had a slight improvement in the burning but did not completely stop it. Maybe I didn't get the right supplement.
The heat really gets my feet flaring. I am very happy to have your comments on this and to have two recommendations on some viable products to try, I know for a fact I will want to try to get better relief when I become more active and with summer right around the corner all the pain becomes much worse. I also would like to share you comments in my Erythromelalgia forum if you don't mind. I know of a women who actually cut one foot off due to this problem, and was going to have the second one removed but after the first foot was taken off she didn't want to go through with it. It is horrid pain but I wouldn't cut my feet off but I have to say the thought crosses my mind when it's at it's worst.
OK, I just decided to make a file called Tex, I am printing out all of your wonderful suggestions and explanations of what could be going on with different ailments . You are amazing ! I am so over the top happy I found you and this forum !! Thank You from the bottom of my heart !!
I sorta get that.... LOL
I have never taken a PPI, however when they have me prisoner in the hospital they always try to put it in my IV bag. It is always a standing order, I have tried to get it off but somehow its always there, and every time the pathologist writes his report up he says I should be on PPI's. But I don't take them. Those things are nasty and have some recent science about causing dementia.
I can usually tolerate the problem but for some reason it much worse since the MC came on board.
I believe the the test for my abnormal mucosa was a biopsy. wow interesting you brought up the pancreas I have been asking my doctors about my pancreas for some time, for a while I was have a white bm. This went on for maybe 2 months, it was so white I could hardly see it in toilet. The problem only occurs now and again. This WD has never been white, so I am guessing what ever was going on with that is not as bad.
I think your thoughts on the Erythromelalgia are spot on, and I have looked into Metanx and actually have a print out of their product. I am waiting for this MC thing to calm down before adding anymore supplements. I know my neurologist at Stanford would write the script and it wouldn't cost me much. I have looked at Thorne's Methyl-Guard Plus , a year ago I ended up getting Seeking Health's Active B12 with L-5MTHF, and I believe it had a slight improvement in the burning but did not completely stop it. Maybe I didn't get the right supplement.
The heat really gets my feet flaring. I am very happy to have your comments on this and to have two recommendations on some viable products to try, I know for a fact I will want to try to get better relief when I become more active and with summer right around the corner all the pain becomes much worse. I also would like to share you comments in my Erythromelalgia forum if you don't mind. I know of a women who actually cut one foot off due to this problem, and was going to have the second one removed but after the first foot was taken off she didn't want to go through with it. It is horrid pain but I wouldn't cut my feet off but I have to say the thought crosses my mind when it's at it's worst.
OK, I just decided to make a file called Tex, I am printing out all of your wonderful suggestions and explanations of what could be going on with different ailments . You are amazing ! I am so over the top happy I found you and this forum !! Thank You from the bottom of my heart !!
OK, Tex, I re-read the whole reflux info you wrote and I DO GET what you are saying ... wow thanks for this and I thank you for the great link and wow it is related to MC ??? SO why on earth doesn't my GI doc know this, I asked her point blank is my WD for 5 months related to the worsening of my reflux and she said she didn't think so.
How do you know so much TEX ?????
I am floored ! I am a Tex fan !
How do you know so much TEX ?????
I am floored ! I am a Tex fan !
White stool indicates that no bile is being produced, or at least none is being released from the common bile duct into the duodenum. Usually that's due to a blocked bile duct, but if you can't digest any type of food properly, the blockage might be in the common bile duct, below the junction with the pancreatic duct (aka the duct of Wirsung). I can't believe your doctors didn't check that out when it was happening, because it's typically a sign of a possibly serious problem.
Sure, feel free to share anything I write, but be careful about sharing some of my comments with your doctors because they might throw you out of their office for attempting to spread radical propaganda written by an idiot.
To me it seems rather obvious — the inflammation associated with MC often causes difficult and/or incomplete digestion (aka indigestion). And indigestion causes fermenting food, gas, bloating, pressure, and acid reflux. But if you Google "What causes indigestion?", Google will respond, "Indigestion is often a sign of an underlying problem, such as gastroesophageal reflux disease (GERD)" . . .
Really? Even Google is confused about this. Indigestion causes GERD, not the other way around. IOW, indigestion is not a symptom of GERD. GERD is clearly a symptom of indigestion because the GERD did not exist before the indigestion began. At least that's how I see it.
You're most welcome,
Tex
Sure, feel free to share anything I write, but be careful about sharing some of my comments with your doctors because they might throw you out of their office for attempting to spread radical propaganda written by an idiot.
It's not that I know much — I don't. I'm just a fairly decent researcher and I can sometimes recognize associations that are overlooked by almost everyone else. I've been researching and studying this disease for over 15 years now, and for almost 13 years I've been learning from the best teachers in the world — the members of this forum. Reading this forum is almost as good as attending grad school at Microscopic Colitis University. I learn something here every day. And besides, even a blind hog finds an acorn now and then.Rebecca wrote:How do you know so much TEX ?????
Because it hasn't been published in a prestigious, peer-reviewed medical research journal. A million MC patients could complain to the typical GI specialist that their MC is causing acid reflux, and a hundred guys like me (who don't have a medical degree) could explain in detail why that is true, and it wouldn't mean a thing. If it isn't published in a prestigious . . . it doesn't exist (as far as they're concerned).Rebecca wrote:SO why on earth doesn't my GI doc know this, I asked her point blank is my WD for 5 months related to the worsening of my reflux and she said she didn't think so.
To me it seems rather obvious — the inflammation associated with MC often causes difficult and/or incomplete digestion (aka indigestion). And indigestion causes fermenting food, gas, bloating, pressure, and acid reflux. But if you Google "What causes indigestion?", Google will respond, "Indigestion is often a sign of an underlying problem, such as gastroesophageal reflux disease (GERD)" . . .
Really? Even Google is confused about this. Indigestion causes GERD, not the other way around. IOW, indigestion is not a symptom of GERD. GERD is clearly a symptom of indigestion because the GERD did not exist before the indigestion began. At least that's how I see it.You're most welcome,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I just Love sarcasm, nothing better than a cutting expression and your post was ripe with it, thank you for being you !
I wouldn't waste my time sharing anything with most of my doctors, are you kidding me. My GI doctor who I am not fond of at all, (I call her the Great Oz, ) the women wizard behind the curtain, she is a fraud. Just like the wizard was in the Wizard of Oz.
( I do have an amazing doctor at the children's hospital at Stanford who is a true healing wizard, he is my immune guy, and he would be very impressed with you, he see's adults also with adult on-set immune diseases. )
Since my GI doctor put me in hospital I haven't even heard from her. I got my test results off the My Health Chart on line. I am still floored she has never called to tell me what the MC means in her ill-informed world. I didn't pick her as my doctor she was forced on me by some other doctors at Stanford.
But that's ok I am getting the best help right here !
So I have been reading this ... yes a published journal article, but it has some good studies in rats ... Enzyme replacement therapy for pancreatic insufficiency: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132852/
You got me thinking and I just have a feeling I might do well with something like an enzyme replacement and it might improve my motility. Is there something out there natural, or do I need a script of some ox or pig's enzyme... (I am joking but I know they use that.) Or do you not think this is the right direction for me now or ever ?
By the way you are more than a a fairly decent researcher, and you have an uncanny ability to realize there are no coincidences and you connect the dots. It's pretty cool !
Well I am doing so much better in regards to frequency but still have WD. But I for sure feel less fatigue, it is extremely notable how less fatigued I feel. It is has been almost a week off gluten. Can it really be that ? If so I think we should all go back to being hunter/gatherers - this whole planet would be better off.
Ok I am feeling bad that I am taking up to much of your time and ( others ) you all have given me some great things to work on.
I did start a file tonight, I don't want to have to go back through 6 pages of stuff to find out something you guys said. This is going to be so handy to have everything in a file.
Thank You again for being so generous, kind, bright and a true healer ! I will stay busy with the current assignments you have given me and keep you updated.
My books come tomorrow, I can't wait !!
I wouldn't waste my time sharing anything with most of my doctors, are you kidding me. My GI doctor who I am not fond of at all, (I call her the Great Oz, ) the women wizard behind the curtain, she is a fraud. Just like the wizard was in the Wizard of Oz.
( I do have an amazing doctor at the children's hospital at Stanford who is a true healing wizard, he is my immune guy, and he would be very impressed with you, he see's adults also with adult on-set immune diseases. )
Since my GI doctor put me in hospital I haven't even heard from her. I got my test results off the My Health Chart on line. I am still floored she has never called to tell me what the MC means in her ill-informed world. I didn't pick her as my doctor she was forced on me by some other doctors at Stanford.
But that's ok I am getting the best help right here !
So I have been reading this ... yes a published journal article, but it has some good studies in rats ... Enzyme replacement therapy for pancreatic insufficiency: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132852/
You got me thinking and I just have a feeling I might do well with something like an enzyme replacement and it might improve my motility. Is there something out there natural, or do I need a script of some ox or pig's enzyme... (I am joking but I know they use that.) Or do you not think this is the right direction for me now or ever ?
By the way you are more than a a fairly decent researcher, and you have an uncanny ability to realize there are no coincidences and you connect the dots. It's pretty cool !
Well I am doing so much better in regards to frequency but still have WD. But I for sure feel less fatigue, it is extremely notable how less fatigued I feel. It is has been almost a week off gluten. Can it really be that ? If so I think we should all go back to being hunter/gatherers - this whole planet would be better off.
Ok I am feeling bad that I am taking up to much of your time and ( others ) you all have given me some great things to work on.
I did start a file tonight, I don't want to have to go back through 6 pages of stuff to find out something you guys said. This is going to be so handy to have everything in a file.
Thank You again for being so generous, kind, bright and a true healer ! I will stay busy with the current assignments you have given me and keep you updated.
My books come tomorrow, I can't wait !!
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
the combo of giving up gluten, increased magnesium (via the foot soaks) and a bit of enthusiasm that you are getting some clarity on your health issues would help reduce fatigue.
with new gained info you are enthused to embrace the changes that have been suggested.
enjoy your books.
with new gained info you are enthused to embrace the changes that have been suggested.
enjoy your books.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
proteolytic enzyme & digestive enzyme
Hello !
I am very interested in starting a Digestive Enzyme ASAP. I am not entirely sure of what I am suppose to be looking for.
I read about digestive enzyme formulas and proteolytic enzyme formulas. I sure could use some guidance on this, I am especially confused if a person needs a digestive enzyme & a proteolytic enzyme. So two different pills, one before a meal and one after?
This company Baseline Nutritionals has something that maybe ok but it has minute traces of gluten left from the original malt.
Those of you in the 'know' can you help ?
https://www.baselinenutritionals.com/pr ... 1489292793
I am very interested in starting a Digestive Enzyme ASAP. I am not entirely sure of what I am suppose to be looking for.
I read about digestive enzyme formulas and proteolytic enzyme formulas. I sure could use some guidance on this, I am especially confused if a person needs a digestive enzyme & a proteolytic enzyme. So two different pills, one before a meal and one after?
This company Baseline Nutritionals has something that maybe ok but it has minute traces of gluten left from the original malt.
Those of you in the 'know' can you help ?
https://www.baselinenutritionals.com/pr ... 1489292793