Very Discouraged.
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Very Discouraged.
I’ve posted here before and I thank Tex for his quick replies and always encouraging posts. I am really at a loss. I started seeing a new naturopathic person and she recommended a paleo diet. I only eat organic , grass fed meats. No grains at all. Low sugar. Haven’t been eating fruit except for banana. I make my own coffee creamer with hemp seeds made into milk with some homemade almond milk. I cook everything very well. I am still having constant WD. I am losing my mind. I don’t know what is wrong with me. It’s been since April 21st. And I haven’t had one solid BM. I don’t know what to do. I have a bottle of budesonide but I don’t even know what good it’ll do. My GI doesn’t believe in tapering so I feel like I’d be doing it on my own and I have no clue where to begin. I use simple mills almond banana muffin mix in order to have something for breakfast to eat. The ingredients are simple and there’s no gums or extra added things that can make me react. Maybe it hasn’t been long enough. But I’m just so depressed. I don’t know what to do. I quit eating chicken bc it was advised I was reacting to that. I only eat organic turkey, beef or fish. No eggs. No dairy at all. Please any insights.
Re: Very Discouraged.
I understand how discouraging this disease can be, but you're feeling discouraged way too soon. if we happen to be one of the unlucky MC patients who have severe, persistent symptoms, we have to learn to be extremely patient and dedicated to pursuing a solution.
Back when I first began to have digestive system problems, I dealt with diarrhea for several years. But when it turned into watery diarrhea, I decided I must have cancer, so I reluctantly went to see my doctor. Sure enough, he diagnosed me with cancer and sent me to a gastroenterologist. He confirmed the cancer diagnosis and sent me to the emergency department for a quick series of CT scans. They couldn't see any cancer in the scans, so the G.I. Doc sent me back for a series of tests, which took several months altogether. This was back in the year 2000, when gastroenterologist still believed that this was a disease of older ladies, so he never even bothered to take biopsies during my colonoscopy. In my final visit with him, he told me all those tests showed that nothing was wrong with me, so all of my problems must be in my head. He suggested that I go see a good psychiatrist for my treatment. That's when I realized I was on my own, and yes, I felt very discouraged and depressed.
I lived with the symptoms for over two more years, since it was obvious to me that I wasn't going to get any help from the medical profession. A few months later, I discovered that even back then, there were a heck of a lot of medical research articles on the Internet. So I began researching my symptoms and decided that whatever I had, appeared to be a lot like celiac disease. So I totally (and permanently ) removed gluten from my diet, and began keeping a food journal. It took me a year and a half of experimenting with various foods (since I had no guidelines at the time, and I had never heard of EnteroLab), and documenting the results, before I determined all my food sensitivities. But after I cut all of them out of my diet, within a couple of weeks, I was in remission, and my digestive system began to slowly heal.
My point is, we're capable of showing an immense amount of patience, if we're determined to find a solution. And after watching my body and overall health deteriorate during all those years of diarrhea, I knew I couldn't continue to live like that, if I expected to survive to a ripe old age. So I was determined to find a solution, and I did. So can you.
All that said, I have a few observations to point out about your diet. But remember, this is just my opinion, and other opinions may vary. Based on my own experiences, I experimented with hemp milk early on. It didn't seem to cause diarrhea ( or worsen my diarrhea ), but it definitely caused bloating for me, which means that I wasn't able to digest it properly. I had the same symptoms after I ate any beef, and I still do, so I don't eat beef. How many ingredients are in the muffin mix you use? Many, probably most of us, react to virtually any commercially processed foods that contain more than five ingredients, even when all those ingredients are individually safe for us. For me, such foods didn't cause any immediate reaction. Instead, problems from such foods crept up on me, and I would develop diarrhea several days later, if I continued to eat the product. My breakfast looked like any other meal. During my recovery, it usually consisted of leftovers from meals that I had the day before.
Fish is another possible red flag. Many of us show antibodies to tuna on EnteroLab tests, which may make us sensitive to salmon, and possibly other fish. I eat only pork, although there are probably many other meats that I could be eating.him where did somebody go. The bottom line is, "Never give up, because there's a solution for you somewhere out there." If you want your life back, keep searching until you find that solution.
If you've never tried budesonide, and you want or need prompt relief, you might find that budesonide will resolve the diarrhea for you within a day or two. As you're apparently aware, however, despite your gastroenterologist's rather dangerous policy of ignoring a need to taper budesonide treatments, a long, drawn out taper is necessary to prevent a relapse when a budesonide treatment is ended.
Have you read the last Microscopic Colitis Foundation Newsletter? It contains an article about selecting diets. Here's a direct link, if you haven't already read that issue:
https://www.microscopiccolitisfoundatio ... 479987.pdf
At least, those are my thoughts, after reading your post.
Tex
Back when I first began to have digestive system problems, I dealt with diarrhea for several years. But when it turned into watery diarrhea, I decided I must have cancer, so I reluctantly went to see my doctor. Sure enough, he diagnosed me with cancer and sent me to a gastroenterologist. He confirmed the cancer diagnosis and sent me to the emergency department for a quick series of CT scans. They couldn't see any cancer in the scans, so the G.I. Doc sent me back for a series of tests, which took several months altogether. This was back in the year 2000, when gastroenterologist still believed that this was a disease of older ladies, so he never even bothered to take biopsies during my colonoscopy. In my final visit with him, he told me all those tests showed that nothing was wrong with me, so all of my problems must be in my head. He suggested that I go see a good psychiatrist for my treatment. That's when I realized I was on my own, and yes, I felt very discouraged and depressed.
I lived with the symptoms for over two more years, since it was obvious to me that I wasn't going to get any help from the medical profession. A few months later, I discovered that even back then, there were a heck of a lot of medical research articles on the Internet. So I began researching my symptoms and decided that whatever I had, appeared to be a lot like celiac disease. So I totally (and permanently ) removed gluten from my diet, and began keeping a food journal. It took me a year and a half of experimenting with various foods (since I had no guidelines at the time, and I had never heard of EnteroLab), and documenting the results, before I determined all my food sensitivities. But after I cut all of them out of my diet, within a couple of weeks, I was in remission, and my digestive system began to slowly heal.
My point is, we're capable of showing an immense amount of patience, if we're determined to find a solution. And after watching my body and overall health deteriorate during all those years of diarrhea, I knew I couldn't continue to live like that, if I expected to survive to a ripe old age. So I was determined to find a solution, and I did. So can you.
All that said, I have a few observations to point out about your diet. But remember, this is just my opinion, and other opinions may vary. Based on my own experiences, I experimented with hemp milk early on. It didn't seem to cause diarrhea ( or worsen my diarrhea ), but it definitely caused bloating for me, which means that I wasn't able to digest it properly. I had the same symptoms after I ate any beef, and I still do, so I don't eat beef. How many ingredients are in the muffin mix you use? Many, probably most of us, react to virtually any commercially processed foods that contain more than five ingredients, even when all those ingredients are individually safe for us. For me, such foods didn't cause any immediate reaction. Instead, problems from such foods crept up on me, and I would develop diarrhea several days later, if I continued to eat the product. My breakfast looked like any other meal. During my recovery, it usually consisted of leftovers from meals that I had the day before.
Fish is another possible red flag. Many of us show antibodies to tuna on EnteroLab tests, which may make us sensitive to salmon, and possibly other fish. I eat only pork, although there are probably many other meats that I could be eating.him where did somebody go. The bottom line is, "Never give up, because there's a solution for you somewhere out there." If you want your life back, keep searching until you find that solution.
If you've never tried budesonide, and you want or need prompt relief, you might find that budesonide will resolve the diarrhea for you within a day or two. As you're apparently aware, however, despite your gastroenterologist's rather dangerous policy of ignoring a need to taper budesonide treatments, a long, drawn out taper is necessary to prevent a relapse when a budesonide treatment is ended.
Have you read the last Microscopic Colitis Foundation Newsletter? It contains an article about selecting diets. Here's a direct link, if you haven't already read that issue:
https://www.microscopiccolitisfoundatio ... 479987.pdf
At least, those are my thoughts, after reading your post.
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.
Re: Very Discouraged.
Tex, thank you so much for your in-depth reply. You are correct in that I get too discouraged too soon. I have fought many other things such as depression and such so I guess I’m just tired. Even at the age of 30. I just want a normal life, as I know y’all of all people can truly relate. Not many people without this condition can. I guess my first thoughts are of dread...thinking I’m perhaps one of those who cannot heal or that diet won’t help. But in my heart of hearts I know that God has me and doesn’t want me to live this way forever or be in constant dread and panic over what I’m eating and frantic about it. I have been following the GF, DF, SF diet pretty well but I have had a few cheats here and there and maybe it is adding up more than I thought and I’m not as accurately looking at my part in all of this. My naturopath uses some sort of energy testing (sounds crazy I know) but she advised me against the chicken and pork which is why I was doing the beef and fish and turkey. I wish I just knew for sure bc either way I go I’m eating something probably making me react. I just don’t have the money for Enterolab tests at the moment.
For the simple mills muffins the ingredient list is very slim. Almond flour, banana, organic coconut sugar, arrowroot, organic coconut flour, baking soda, sea salt. I’ve also been eating plantain chips at times and hummus as it was also told to me that my system wasn’t reacting to chick peas. I’ve also had many of the cassava chips from the Siete brand. I realized though that all of those may have been too soon to introduce. It very well may be I am still eating the wrong combination of stuff.
I have a bottle of about 90 budesonide. I had the idea of maybe taking it and titrating the doses myself since my doctor doesn’t believe in that and since I’ve already tried it twice. It did work well both times but it wasn’t stopped slow enough and came back. If I could successfully control my symptoms with diet within weeks I would vouch to do it that way, just don’t know how to get started since it was advised I react to chicken and chicken broth seems to had been a staple of the intro diet. I guess the more I seek help and advise the more answers I get, and subsequently more confused what to listen to and apply. It’s hard to try to figure all of this out while in nursing school and working and with clinicals and studying but hopefully during the summer (while I’m not in school only working full time) I can hone in on this and get some better sort of control. I just have exhausted all options it seems and I’m exhausted trying to figure it all out myself.
For the simple mills muffins the ingredient list is very slim. Almond flour, banana, organic coconut sugar, arrowroot, organic coconut flour, baking soda, sea salt. I’ve also been eating plantain chips at times and hummus as it was also told to me that my system wasn’t reacting to chick peas. I’ve also had many of the cassava chips from the Siete brand. I realized though that all of those may have been too soon to introduce. It very well may be I am still eating the wrong combination of stuff.
I have a bottle of about 90 budesonide. I had the idea of maybe taking it and titrating the doses myself since my doctor doesn’t believe in that and since I’ve already tried it twice. It did work well both times but it wasn’t stopped slow enough and came back. If I could successfully control my symptoms with diet within weeks I would vouch to do it that way, just don’t know how to get started since it was advised I react to chicken and chicken broth seems to had been a staple of the intro diet. I guess the more I seek help and advise the more answers I get, and subsequently more confused what to listen to and apply. It’s hard to try to figure all of this out while in nursing school and working and with clinicals and studying but hopefully during the summer (while I’m not in school only working full time) I can hone in on this and get some better sort of control. I just have exhausted all options it seems and I’m exhausted trying to figure it all out myself.
Re: Very Discouraged.
if you happen to be sensitive to soy, as many of us are, then you will also be sensitive to most legumes, and that includes chickpeas. No one reacts to turkey, unless it's injected with some sort of tenderizer solution. Find a brand without any additives. And remember that wild type meats such as duck, goose, quail, venison, etc., are always safe, even if they're farm or ranch raised. It's possible that you're not sensitive to beef (or chicken, for that matter) — I'm merely suggesting what works for most of us, when we're trying to eliminate all possible risks, so that we can get into remission.
Never cheat on your diet, unless you crave diarrhea. if you decide that you need additional budesonide, and your doctor won't prescribe it, you can order it without a prescription, for pennies on the dollar, from a pharmacy in India. I can provide a link, if you need it.
Tex
Never cheat on your diet, unless you crave diarrhea. if you decide that you need additional budesonide, and your doctor won't prescribe it, you can order it without a prescription, for pennies on the dollar, from a pharmacy in India. I can provide a link, if you need it.
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.
Re: Very Discouraged.
What are your thoughts on the almond flour muffins? And the plantain chips? Also, let’s say I’m sensitive to chicke , can I still cook the bones down in a bone broth and sip on that for the collagen and minerals in order to heal my gut? If not what other bones might you suggest for this? Please also send link to the India pharmacy, as I’m thinking of possibly trying the LDN through this source if possible. Although I’m 100% sure no medication will cure what food will in this case. Thank you so much.
Re: Very Discouraged.
The ingredient list in the muffins looks OK, as long as the combination doesn't cause problems for you. If you react to chicken, you'll react to bone broth made from their bones. It's much safer to use turkey bones to make the broth.
Here's a link for the budesonide:
https://www.alldaychemist.com/catalogse ... t/?q=budez
I'm not sure whether they offer LDN, but you can do a search for it on the site. They have always shipped promptly in the past, but delivery may take significantly longer than usual because international shipping is really disrupted these days, due to the COVID issue. They will ask for a prescription from your doctor when you order, but prescriptions are invalid across borders, anyway. In the past, everyone here has just ignored that request for a prescription, and their orders have always been sent, anyway. Don't order more than a 90-day supply at one time (270 capsules, if you order the budesonide), because U.S. Customs agents may seize larger orders, under the assumption that the order may be going to a drug dealer.
Tex
Here's a link for the budesonide:
https://www.alldaychemist.com/catalogse ... t/?q=budez
I'm not sure whether they offer LDN, but you can do a search for it on the site. They have always shipped promptly in the past, but delivery may take significantly longer than usual because international shipping is really disrupted these days, due to the COVID issue. They will ask for a prescription from your doctor when you order, but prescriptions are invalid across borders, anyway. In the past, everyone here has just ignored that request for a prescription, and their orders have always been sent, anyway. Don't order more than a 90-day supply at one time (270 capsules, if you order the budesonide), because U.S. Customs agents may seize larger orders, under the assumption that the order may be going to a drug dealer.
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.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Re: Very Discouraged.
so sorry that you have ongoing WD - it is very discouraging and overwhelming.
sadly - there is more to MC triggers than just the foods
what other drinks are you having??
coffee is a trigger for some, it might be worth stopping it for a few days to see if things improve
stress
other than the MC and WD - are there other stresses in your life physical, mental emotional??
nutrients
are you taking Vit D3?
hormones
not sure what age you are? are you having any hormonal issues at the moment
histamine / allergies
are you having allergy symptoms as well, running nose, itchy eyes etc?
a good way to do a mini reset is to have bone broth based on single ingredient safe meat and small amount of a rice or single vegetable
do this for a few days and if the BM's improve then start to check other ingredients
if doing bland 1-2 ingredients doesnt help - that is a good indicator that you need some medication help
another good option is cholestryamine -
hope this helps
sadly - there is more to MC triggers than just the foods
what other drinks are you having??
coffee is a trigger for some, it might be worth stopping it for a few days to see if things improve
stress
other than the MC and WD - are there other stresses in your life physical, mental emotional??
nutrients
are you taking Vit D3?
hormones
not sure what age you are? are you having any hormonal issues at the moment
histamine / allergies
are you having allergy symptoms as well, running nose, itchy eyes etc?
a good way to do a mini reset is to have bone broth based on single ingredient safe meat and small amount of a rice or single vegetable
do this for a few days and if the BM's improve then start to check other ingredients
if doing bland 1-2 ingredients doesnt help - that is a good indicator that you need some medication help
another good option is cholestryamine -
hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Re: Very Discouraged.
i forgot another key item
are you taking any other medications for other health issues?/
are you taking any other medications for other health issues?/
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Re: Very Discouraged.
Thank you Gabes for your reply. I am 30 years old, so my hormone issues are very real. Although since getting COVID, my periods are very off. Some months I haven’t even had a period. And although stress could have played a role during the last semester of nursing school, it still persists even though I’m at summer break and the stress levels now are much lower. (Until august at least lol). So I believe there’s a lot going on there and I’m def not in balance there.
Coffee is a daily drink. Only thing I really drink besides water. I sometimes have tea, but it isn’t often. Green tea or peppermint tea or ginger tea from Trader Joe’s. But coffee is a much more often drink I have every single morning. I had been using homemade almond + hemp seed milk in it bc I don’t like drinking it black though I do if I’m at work bc I don’t have access to healthy alternative creamers.
I do experience allergy issues, I’m hesitant on trying an allergy medicine that is safe bc of all the added ingredients but I do take diphenhydramine (Benadryl) 50mg every night. But if taking an extra dose of a non sedating allergy med might help I’m all for trying one.
I am not taking any other medications at the moment. I take Vitamin D3, a B complex and glutamine powder (added yesterday to see if it helps). I have had depression in the very recent past but stopped taking antidepressants bc I was afraid it was making my condition worse. I’ve been off of them for almost 7 months.
I have had much less WD and it seems to be very very mushy lately, as of the last day. I made turkey bone broth last night and drank some this am. Chilled overnight and reheated this morning to limit the histamine issues. I’m not sure about what my safe proteins are at the moment but trying to stick to turkey. I bought lamb and salmon although Tex advised maybe the fish I’m reacting to. I just don’t know.
Coffee is a daily drink. Only thing I really drink besides water. I sometimes have tea, but it isn’t often. Green tea or peppermint tea or ginger tea from Trader Joe’s. But coffee is a much more often drink I have every single morning. I had been using homemade almond + hemp seed milk in it bc I don’t like drinking it black though I do if I’m at work bc I don’t have access to healthy alternative creamers.
I do experience allergy issues, I’m hesitant on trying an allergy medicine that is safe bc of all the added ingredients but I do take diphenhydramine (Benadryl) 50mg every night. But if taking an extra dose of a non sedating allergy med might help I’m all for trying one.
I am not taking any other medications at the moment. I take Vitamin D3, a B complex and glutamine powder (added yesterday to see if it helps). I have had depression in the very recent past but stopped taking antidepressants bc I was afraid it was making my condition worse. I’ve been off of them for almost 7 months.
I have had much less WD and it seems to be very very mushy lately, as of the last day. I made turkey bone broth last night and drank some this am. Chilled overnight and reheated this morning to limit the histamine issues. I’m not sure about what my safe proteins are at the moment but trying to stick to turkey. I bought lamb and salmon although Tex advised maybe the fish I’m reacting to. I just don’t know.
Re: Very Discouraged.
How often do you suggest drinking the bone broth to promote healing?
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Re: Very Discouraged.
re drinking the bone broth - as often as you can. the amino acids and many are ingredients are gut healing
check the tea- many teas have soy in them.
small amount of coffee is ok - but too much does deplete magnesium
mushy poop is good - this is progress! dont rush changes implementing things
check the tea- many teas have soy in them.
small amount of coffee is ok - but too much does deplete magnesium
mushy poop is good - this is progress! dont rush changes implementing things
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Re: Very Discouraged.
Will do. I have stopped taking any and all supplements with soy in them. Stopped using spray oils with soy in them. I’ve reconstructed my entire kitchen pantry to implement a GF, DF, SF diet. I will continue just eating the same simple foods without much variety and seeing where it goes from there. Thank you so much for your reply. I have ReMag, the oral liquid magnesium solution and I used mountain spring mineral water to make my bone broth in to get added minerals and healing. But not sure how much of it is absorbed or if it’s causing more D since magnesium can cause that