Hi everyone. I have been reading on here for a few months and have gotten lots of ideas and help. long story short- Im a 34 year old pilot that came down with LC in april 2015. I have lost about 25lbs, already thin to begin with; and still losing weight. My GI doctor here in Pensacola told me that he doesnt know what causes LC. I went from having D everyday that was debilitating down to about 1 or 2 times a week with prednisone/ welchol/ and lialda; he told me that this is as good as im going to get? He also told me that i need to eat more foods and i asked what kinds...his response was just try stuff?? He also wants me to eliminate carbs? I cannot allow myself to imagine being stuck like this. I have no appetite, no energy, muscle pain and fatigue all the time; especially after eating. Previously I was very healthy and didn't have any concerns. Right now i'm only eating meats/ some cooked veggies and plain white boiled rice. If I eat something that is bad it messes me up for about 2 days then I feel rotten for a few more; so im afraid to try new things. Allegy testing showed nothing. I'm feeling like i am at the end of my rope...my job is greatly affected and im not sure how much longer I can keep working. I bought the book in the upper right and have been reading it and will follow it to the letter. My doctor thinks food isn't a trigger.....he wants to do an upper GI in two weeks to see what else is going on.
any info would be greatly appreciated..
any good doctors for this in Alabama or florida?
new to this and need help!!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
-
armstrongpilot
- Adélie Penguin
- Posts: 121
- Joined: Wed Sep 02, 2015 4:31 pm
Hi,
Welcome to our Internet family. Unfortunately, the closest doctors I'm aware of who are at least reasonably familiar with treating MC are up in the Atlanta, GA area, or way down in Jupiter, Florida. As sick as this disease makes most of us, I'm impressed that you've been able to continue working as a pilot without having good control of your symptoms. Most GI specialists are way short of receiving the training they so desperately need in order to understand and effectively treat this disease. That was the reason why this discussion board was originally formed over 10 years ago, and unfortunately the problem still exists because of outdated medical school training.
As far as food testing is concerned, the only lab that we have found that offers tests that can be depended upon to be accurate and reliable, is EnteroLab in Dallas, TX. They do stool testing for IgA antibodies to certain foods, and their tests are far superior to most other tests, because the antibodies are located in the intestines (and in stool), and not in the blood. We're not actually allergic to these food (IOW, we don't normally produce IgE antibodies to them). Instead, we produce IgA antibodies to them (in the digestive tract), and those antibodies cause longer-term inflammation due to the proliferation of killer T cells and mast cells within the mucosal lining of our intestines. Medications can suppress the inflammation somewhat, and help to mask the symptoms, but the only way to stop the inflammation from being produced, is by totally avoiding the foods that cause the inflammation (as you have already figured out).
You seem to be on the right track with your diet. Some of us react to certain meats however, and that makes selecting a safe diet (without any test results) much tougher. In general, virtually no one here reacts to turkey or lamb though, so those meats, plus wild game, are by far the safest when trying an elimination diet.
Do you know your vitamin D level? Most of us are vitamin D deficient, because not only are IBDs associated with vitamin D deficiency, but IBDs (including LC) further deplete vitamin D levels. And corticosteroids also deplete vitamin D, because they suppress inflammation by exploiting the active form of vitamin D to do the actual suppression of inflammation. Without adequate vitamin D, we can't heal, because the immune system cannot function properly without adequate vitamin D.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. Unfortunately, the closest doctors I'm aware of who are at least reasonably familiar with treating MC are up in the Atlanta, GA area, or way down in Jupiter, Florida. As sick as this disease makes most of us, I'm impressed that you've been able to continue working as a pilot without having good control of your symptoms. Most GI specialists are way short of receiving the training they so desperately need in order to understand and effectively treat this disease. That was the reason why this discussion board was originally formed over 10 years ago, and unfortunately the problem still exists because of outdated medical school training.
As far as food testing is concerned, the only lab that we have found that offers tests that can be depended upon to be accurate and reliable, is EnteroLab in Dallas, TX. They do stool testing for IgA antibodies to certain foods, and their tests are far superior to most other tests, because the antibodies are located in the intestines (and in stool), and not in the blood. We're not actually allergic to these food (IOW, we don't normally produce IgE antibodies to them). Instead, we produce IgA antibodies to them (in the digestive tract), and those antibodies cause longer-term inflammation due to the proliferation of killer T cells and mast cells within the mucosal lining of our intestines. Medications can suppress the inflammation somewhat, and help to mask the symptoms, but the only way to stop the inflammation from being produced, is by totally avoiding the foods that cause the inflammation (as you have already figured out).
You seem to be on the right track with your diet. Some of us react to certain meats however, and that makes selecting a safe diet (without any test results) much tougher. In general, virtually no one here reacts to turkey or lamb though, so those meats, plus wild game, are by far the safest when trying an elimination diet.
Do you know your vitamin D level? Most of us are vitamin D deficient, because not only are IBDs associated with vitamin D deficiency, but IBDs (including LC) further deplete vitamin D levels. And corticosteroids also deplete vitamin D, because they suppress inflammation by exploiting the active form of vitamin D to do the actual suppression of inflammation. Without adequate vitamin D, we can't heal, because the immune system cannot function properly without adequate vitamin D.
Again, welcome aboard, and please feel free to ask anything.
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.
Welcome!
Dr. Glover, University of Florida Shands, Gainesville https://ufhealth.org/sarah-glover.
Can you get on Entocort so you can keep your job? Entocort does not heal you...it really is the diet but Entocort will stabilize things while you figure out the diet. A lot of folks on the forum go on Entocort. If you can get on this locally it would save you a lot of aggravation of going to Gainesville.
For calories try Oscar Meyer uncured bacon. Most can tolerate this. You can pick this up at Publix. Also avacados are good for calories and most can tolerate avacados.
It takes time to heal.....like months.
Dr. Glover, University of Florida Shands, Gainesville https://ufhealth.org/sarah-glover.
Can you get on Entocort so you can keep your job? Entocort does not heal you...it really is the diet but Entocort will stabilize things while you figure out the diet. A lot of folks on the forum go on Entocort. If you can get on this locally it would save you a lot of aggravation of going to Gainesville.
It sounds like you are eating a safe diet. Early on the few foods regimen is best.Right now i'm only eating meats/ some cooked veggies and plain white boiled rice. If I eat something that is bad it messes me up for about 2 days then I feel rotten for a few more; so im afraid to try new things.
For calories try Oscar Meyer uncured bacon. Most can tolerate this. You can pick this up at Publix. Also avacados are good for calories and most can tolerate avacados.
It takes time to heal.....like months.
I agree with Brandy. To enhance your chances of being able to continue working while you are getting your symptoms under control (because it takes a significant amount of time for the gut to heal from the damage done by these reactions), you would be much better off if your doctor would prescribe Entocort or Uceris while your diet changes are healing your gut.
Prednisone is not a very nice drug, especially for longer term use, and many members here find that if they are to continue working while healing, it's very beneficial to help mask the symptoms with budesonide (the active ingredient in both Entocort and Uceris), for at least 6 months to maybe a year, depending on circumstances. Budesonide is relatively safe to use for such extended treatment, whereas prednisone would not be. And budesonide is at least as effective as prednisone, for most people. No drug is totally risk-free of course, but for many of us, budesonide can make life much more pleasant while our diet changes are healing our gut. And after the gut has healed sufficiently, the Entocort dosage can be very slowly tapered, in order to wean off it without a significant risk of a rebound effect as mast cell numbers begin to rebuild again. Uceris is a relatively new product, so we don't have much data on it yet, regarding a possible need for tapering the dosage when ending a treatment regimen.
Tex
Prednisone is not a very nice drug, especially for longer term use, and many members here find that if they are to continue working while healing, it's very beneficial to help mask the symptoms with budesonide (the active ingredient in both Entocort and Uceris), for at least 6 months to maybe a year, depending on circumstances. Budesonide is relatively safe to use for such extended treatment, whereas prednisone would not be. And budesonide is at least as effective as prednisone, for most people. No drug is totally risk-free of course, but for many of us, budesonide can make life much more pleasant while our diet changes are healing our gut. And after the gut has healed sufficiently, the Entocort dosage can be very slowly tapered, in order to wean off it without a significant risk of a rebound effect as mast cell numbers begin to rebuild again. Uceris is a relatively new product, so we don't have much data on it yet, regarding a possible need for tapering the dosage when ending a treatment regimen.
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.
Hi Pilot,
Yes you will get better.
I don't have Dr. Glover on Tex's masterlist because of the aggravation factor of going to Shands (it is so big.) Dr. Glover will overtest in my opinion for our disease (another reason I don't have her on Tex's masterlist.) If you go to see her skip the blood allergy test as it was useless for our purposes. She wanted me to get an MRI but I overslept due to MC fatigue and missed my MRI appmt and no one said anything plus Tex had told me an MRI would be useless.
Dr. Glover tells all her MC patients to get and stay GF. I think she typically prescribes Entocort as first drug. She told me it would take awhile to get my energy back.
She was my #2 GI doc. #1 GI doc was useless.
Dr. Glover is right on top of mast cell stuff and mast cell stuff is one of her fields of research.
I suspect Dr. Glover is as good as it gets for an MC gastro doc in Florida. One of our forum members from Tampa as also seen Dr Glover and liked her. Dr. Glover will spend unlimited time with patients so her schedule can run hours late for appointments.
One of my friends works with all of the gastro docs at Shands/UF and thinks Dr. Glover is the best for tougher situations.
I also found the Enterlab tests very helpful.
Yes you will get better.
I don't have Dr. Glover on Tex's masterlist because of the aggravation factor of going to Shands (it is so big.) Dr. Glover will overtest in my opinion for our disease (another reason I don't have her on Tex's masterlist.) If you go to see her skip the blood allergy test as it was useless for our purposes. She wanted me to get an MRI but I overslept due to MC fatigue and missed my MRI appmt and no one said anything plus Tex had told me an MRI would be useless.
Dr. Glover tells all her MC patients to get and stay GF. I think she typically prescribes Entocort as first drug. She told me it would take awhile to get my energy back.
She was my #2 GI doc. #1 GI doc was useless.
Dr. Glover is right on top of mast cell stuff and mast cell stuff is one of her fields of research.
I suspect Dr. Glover is as good as it gets for an MC gastro doc in Florida. One of our forum members from Tampa as also seen Dr Glover and liked her. Dr. Glover will spend unlimited time with patients so her schedule can run hours late for appointments.
One of my friends works with all of the gastro docs at Shands/UF and thinks Dr. Glover is the best for tougher situations.
I also found the Enterlab tests very helpful.
-
armstrongpilot
- Adélie Penguin
- Posts: 121
- Joined: Wed Sep 02, 2015 4:31 pm
Thank you for the replies! I have a feeling im going to be on here a lot looking for help. My doctor seems to be cluesless and is masking that by saying im as good as I am going to get with this. Switching to a new doc next week to start over.....i hate all the waiting. I have not flown for 1 1/2 months; have been using contract pilots and just working on the jet on the ground. I am able to fly if its a good day...but I have no idea when those are or are not. When i have a bad day it seems to be most of the day...but then the day after i feel like a bus ran me over. I think with out the info I have received from reading this sight I would be far worse off then I am now. I am thankful for that.
right now bkfst is 2 serving rice crispies or rice chex w/ eggs or bacon
lunch is usually white boiled rice with 2 hamburgers or 4 chicken tenders (grilled)
dinner is usually chicken/ fish/ pork/ steak and a late snack of eggs or bacon again for calories
im taking flora 90 billion probiotics and started gnc green vitamins ( soy gluten dairy free)
I figure im around 1800-2000 cals. a day right now
not sure what else I can eat any ideas?
banannas don't work, nuts seems not to work....corn im not sure yet.
when ever I try veggies it works for a few days but then doesn't...I don't know if its something else or not that is messing me up
right now bkfst is 2 serving rice crispies or rice chex w/ eggs or bacon
lunch is usually white boiled rice with 2 hamburgers or 4 chicken tenders (grilled)
dinner is usually chicken/ fish/ pork/ steak and a late snack of eggs or bacon again for calories
im taking flora 90 billion probiotics and started gnc green vitamins ( soy gluten dairy free)
I figure im around 1800-2000 cals. a day right now
not sure what else I can eat any ideas?
banannas don't work, nuts seems not to work....corn im not sure yet.
when ever I try veggies it works for a few days but then doesn't...I don't know if its something else or not that is messing me up
-
armstrongpilot
- Adélie Penguin
- Posts: 121
- Joined: Wed Sep 02, 2015 4:31 pm
one more thing...I don't know about this or not but I showed my doctor the enterolab website and asked about it...he said it was a flat out scam and that I would be waisting my time and money on it....he said if that kind of testing worked that it would be mainstream use. My immunologist had the same opinion ( hes a new doc I tried with this diagnosis) ( WASNT MUCH HELP EITHER) I don't know which way to go on it...so much conflicting information.
Please be aware that unless you are using the gluten-free version of Rice Krispies (Kellogg's was producing a GF version for a while, using brown rice, but I haven't seen that version in my local stores in a while), the original version contains gluten in the ingredient listed as "malt flavor". Rice Chex is gluten-free.
I always just ate much larger helpings of the things that I could safely eat, to make sure that I was taking in plenty of calories. Cooking with refined coconut oil (or bacon grease) can help boost calories. Are you eating the cereal dry? Most of us are able to use Almond Milk or Coconut Milk, to add calories, calcium, and maybe a little vitamin D. If you locate the canned, undiluted coconut milk (a product of Thailand), it can be used for some purposes, and it's a very high-calorie product. I've never tried it on cereal, but it works well in smoothies, for example.
Note that many/most of us cannot tolerate most probiotics until after we have been in remission for a while. For some of us, probiotics cause D (violent D in some cases) even after we have been in remission for a while, for most of us they make no difference either way, and for a handful of us, they seem to help. Sometimes, stopping the use of a probiotic for a few days or so can be enlightening, if the product happens to be perpetuating the D.
If vegetables work for a while and then cause problems, it's probably due to the fiber. We have to minimize fiber in our diet, because it's very abrasive to a gut that is already hyper-inflamed. Similar to histamine in foods, fiber tends to have a dosage effect. IOW, we may do okay, until we exceed our accumulated limit.
Have you tried potatoes? Most of us can tolerate potatoes. Red or yellow potatoes are easier to digest than the Russets that are most commonly used. Russets are the hardest to digest. If potatoes are a problem, sweet potatoes may work OK, and they are a good source of extra calories. Avocados have a high fat content, if you can tolerate them.
Currently, doctors have absolutely no way to officially diagnose non-celiac gluten sensitivity. Doctors now know (finally) that it exists, but they have no way to diagnose it, because they don't have an officially-approved test that will diagnose it.
And the reason why they don't have an officially-approved way to diagnose it is because of plain old professional snobbery. Dr. Kenneth Fine is a certified GI specialists in Dallas, Texas, who happens to have MC himself. That's why he devoted so much time to researching ways to treat the disease. He's one of the pioneers in the field of research into the understanding and treatment of microscopic colitis. He is the creator of the Pepto-Bismol treatment, for example, and you can find his published research articles online. Roughly 15 years ago, when Dr. Fine developed his stool tests and patented them, and created EnteroLab, he decided to offer his tests direct to the public, over the internet. Up until that point, the medical journals were accepting his research articles for publication, and you can still find many of them in the literature online.
But offering lab tests direct to the public (which means cutting out doctors) infuriates doctors faster than having to skip a golf appointment because of work, and so his decision naturally made them absolutely livid. He was immediately blacklisted, and the medical research articles he wrote were no longer accepted for publication. And since then, he has further infuriated them by having the gall to let his hair grow long, and to learn to play the guitar, and write and perform rock music (and horror of horrors — he even sells his music online.)
Of course that's a "backroom", "under-the-table" policy, because if the public were aware of it, such unprofessional discrimination by his prior colleagues wouldn't go over very well. And of course because of the lack of publication, most doctors refused to recognize his tests as valid, (even though they are patented, and his lab is fully accredited by the state of Texas, with absolutely no complaints against his medical license the last time I checked).
Today, more and more doctors "who get it", that is to say, doctors who recognize the role that food sensitivities play in digestive diseases and overall health in general, are beginning to accept Dr. Fine's tests and a few even recommend them. But these are typically not mainstream doctors, because the upper echelon in the medical community (members of the Good Ol' Boys Club, who control the decisions about who gets published and who doesn't), are not likely to change. They have the memory of an elephant, and in their professional opinion, any GI specialist who sells his services direct to the public on the Internet, and who has long hair, plays guitar, and writes and performs rock music, is too "unprofessional" for them to associate with. Dr. Fine has submitted his research for publication numerous times, but because of the reasons stated above, it will never be published.
Medical politics is just one more example among many problems with modern medicine. Medical politics sucks. Politics sneaks into everything, and usually spoils it for everyone, when it does.
Tex
I always just ate much larger helpings of the things that I could safely eat, to make sure that I was taking in plenty of calories. Cooking with refined coconut oil (or bacon grease) can help boost calories. Are you eating the cereal dry? Most of us are able to use Almond Milk or Coconut Milk, to add calories, calcium, and maybe a little vitamin D. If you locate the canned, undiluted coconut milk (a product of Thailand), it can be used for some purposes, and it's a very high-calorie product. I've never tried it on cereal, but it works well in smoothies, for example.
Note that many/most of us cannot tolerate most probiotics until after we have been in remission for a while. For some of us, probiotics cause D (violent D in some cases) even after we have been in remission for a while, for most of us they make no difference either way, and for a handful of us, they seem to help. Sometimes, stopping the use of a probiotic for a few days or so can be enlightening, if the product happens to be perpetuating the D.
If vegetables work for a while and then cause problems, it's probably due to the fiber. We have to minimize fiber in our diet, because it's very abrasive to a gut that is already hyper-inflamed. Similar to histamine in foods, fiber tends to have a dosage effect. IOW, we may do okay, until we exceed our accumulated limit.
Have you tried potatoes? Most of us can tolerate potatoes. Red or yellow potatoes are easier to digest than the Russets that are most commonly used. Russets are the hardest to digest. If potatoes are a problem, sweet potatoes may work OK, and they are a good source of extra calories. Avocados have a high fat content, if you can tolerate them.
That's exactly why your doctors are unable to effectively treat MC patients. They are lost due to a pandemic infection of professional snobbery among mainstream doctors.armstrongpilot wrote:one more thing...I don't know about this or not but I showed my doctor the enterolab website and asked about it...he said it was a flat out scam and that I would be waisting my time and money on it....he said if that kind of testing worked that it would be mainstream use. My immunologist had the same opinion ( hes a new doc I tried with this diagnosis) ( WASNT MUCH HELP EITHER) I don't know which way to go on it...so much conflicting information.
Currently, doctors have absolutely no way to officially diagnose non-celiac gluten sensitivity. Doctors now know (finally) that it exists, but they have no way to diagnose it, because they don't have an officially-approved test that will diagnose it.And the reason why they don't have an officially-approved way to diagnose it is because of plain old professional snobbery. Dr. Kenneth Fine is a certified GI specialists in Dallas, Texas, who happens to have MC himself. That's why he devoted so much time to researching ways to treat the disease. He's one of the pioneers in the field of research into the understanding and treatment of microscopic colitis. He is the creator of the Pepto-Bismol treatment, for example, and you can find his published research articles online. Roughly 15 years ago, when Dr. Fine developed his stool tests and patented them, and created EnteroLab, he decided to offer his tests direct to the public, over the internet. Up until that point, the medical journals were accepting his research articles for publication, and you can still find many of them in the literature online.
But offering lab tests direct to the public (which means cutting out doctors) infuriates doctors faster than having to skip a golf appointment because of work, and so his decision naturally made them absolutely livid. He was immediately blacklisted, and the medical research articles he wrote were no longer accepted for publication. And since then, he has further infuriated them by having the gall to let his hair grow long, and to learn to play the guitar, and write and perform rock music (and horror of horrors — he even sells his music online.
)Of course that's a "backroom", "under-the-table" policy, because if the public were aware of it, such unprofessional discrimination by his prior colleagues wouldn't go over very well. And of course because of the lack of publication, most doctors refused to recognize his tests as valid, (even though they are patented, and his lab is fully accredited by the state of Texas, with absolutely no complaints against his medical license the last time I checked).
Today, more and more doctors "who get it", that is to say, doctors who recognize the role that food sensitivities play in digestive diseases and overall health in general, are beginning to accept Dr. Fine's tests and a few even recommend them. But these are typically not mainstream doctors, because the upper echelon in the medical community (members of the Good Ol' Boys Club, who control the decisions about who gets published and who doesn't), are not likely to change. They have the memory of an elephant, and in their professional opinion, any GI specialist who sells his services direct to the public on the Internet, and who has long hair, plays guitar, and writes and performs rock music, is too "unprofessional" for them to associate with. Dr. Fine has submitted his research for publication numerous times, but because of the reasons stated above, it will never be published.
Medical politics is just one more example among many problems with modern medicine. Medical politics sucks. Politics sneaks into everything, and usually spoils it for everyone, when it does.
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.
-
armstrongpilot
- Adélie Penguin
- Posts: 121
- Joined: Wed Sep 02, 2015 4:31 pm
Oh my goodness!! tex thank you...I was wondering why im not improving much most days the D is gone but I still hurt in my guts all the time...it always wakes me up around 430 or 5 am with pain and cramping.....I usually have two big bowls a day of rice crispies...ive been eating gluten still all this time.... I guess we all know what they say about assumptions....rice is not just rice. I am hopeful this was the last piece of my puzzle and now I can start feeling human again.
Again thank you for the help and information.
Again thank you for the help and information.
Hi,
I have a rather lengthy post its in the "Stickys" area at the top of the Main Message Board, it's called "need input I'm not going to get from a Dr". There is lots to consider in that post even how I started out with my foods an what I eventually ended up with. Many others have contributed to it with their invaluable contributions regarding how things worked for them. There seems to be a common theme with MC an it's healing. Diet - Stress - Meds/noMeds an Faith we have the willpower to listen to ourselves an be kind an willing to go with the flow during healing.
Many times I wished I knew I had a genetic link to gluten intolerance, perhaps I could have kept myself from letting MC raise its ugly head at age 40...but being to stubborn to really do anything about it until I was 45, an even then the Drs didn't know how to guide me. So now I'm 48 an I can say diet an removing excess hormone treatment is having positive results.
I know I still have a ways of healing to go. You'll start feeling better soon too
Something that would be hot an good to eat daily is bone broth hand made in a crockpot an turned into a soup with over cooked carrots celery an GF rice noodles, seasoned with sea salt to taste only. Mm Good!
Take care,
Erica
I have a rather lengthy post its in the "Stickys" area at the top of the Main Message Board, it's called "need input I'm not going to get from a Dr". There is lots to consider in that post even how I started out with my foods an what I eventually ended up with. Many others have contributed to it with their invaluable contributions regarding how things worked for them. There seems to be a common theme with MC an it's healing. Diet - Stress - Meds/noMeds an Faith we have the willpower to listen to ourselves an be kind an willing to go with the flow during healing.
Many times I wished I knew I had a genetic link to gluten intolerance, perhaps I could have kept myself from letting MC raise its ugly head at age 40...but being to stubborn to really do anything about it until I was 45, an even then the Drs didn't know how to guide me. So now I'm 48 an I can say diet an removing excess hormone treatment is having positive results.
I know I still have a ways of healing to go. You'll start feeling better soon too
Something that would be hot an good to eat daily is bone broth hand made in a crockpot an turned into a soup with over cooked carrots celery an GF rice noodles, seasoned with sea salt to taste only. Mm Good!Take care,
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007