Hello,
My name is Lilja, I’m 67 years old and live in Norway.
I was diagnosed with Collagenous Colitis in 2010, after having had explosive D for 7 months, with up to 20 visits to the bathrom per day.
I was given no instructions as to diet etc, I just got a box of Entocort, and that’s it.
I finished the box of Entocort, the D stopped, and I was pretty much left to myself. My doctor had nothing to offer me, besides Entocort, and I was not willing to stay on medication at that time.
For three years my life was a living h…, I started getting all kinds of symptoms; tingling, unsteady gait, nausea, brainfog, no appetite, slept a lot, pain in my legs and in my lower back, could not follow a simple conversation, could not concentrate on the simplest tasks… I felt like I was sitting in a bubble, just registering what was going on around me.
Thinking back, I do not remember anything from these three years, other than the pain, the brainfog, and this feeling of grief over living such a meaningless life.
I had my first grandchild during this period, and I hardly remember visiting her at the hospital.
After these three years I visited a group of doctors, calling themselves «functional medicine doctors», and they promptly stated that I had a «leaky gut» and advised me to cut all grains and dairy products, and to live from broth, chicken, fruits low in sugar, some specific well cooked vegetables, coconut oil, magnesium oil (on the skin), raw egg yolks from biological eggs, electrolyte drinks, gelatine, and to take a lot of pro- and prebiotics, glutamine, B12 injections, Epsom-salt baths – and to excercise. I did not get any form of pharmaceutical remedies, apart from the B12-shots (methylcobalamine).
I did that for 1,5 years. The D was still gone, but I lost 12 kilos, all my muscles went away, I had no joy of living, I just existed. I felt I had a meaningless life. No joy, no good food, just aching pains and a lot of sleeping. The functional medicine doctors were awfully expensive, so I had to quit going there.
Then, in May this year, I had a bad flare up with explosive D for 2,5 months, coming out of the blue, just like that. I had not had any «accidents» as regards to food etc. So, I gave in to my GP’s advice, and started an Entocort-regime that will last for 10 weeks.
My stomach is now ok. The d has stopped. I continue to stick to the GF and DF, no sugar, no additives, cook all my meals from scratch. It is a lot of work… and I’m happy that I am retired. I could not have gone to work keeping this time-consuming food-regime…
I am excited as to what will happen when I go off my Entocort-cure, though!
My concern now is how to gain some weight, and this loss of muscles; my arms and legs are so thin, with saggy skin. I go to the gym twice a week, weighlifting etc., but nothing seems to help.
I wonder if anyone of you have had the same problem with weight loss and loss of muscle mass, and what did you do?
PS: Thank you for a wonderful forum. I have learned a lot
Best regards from Lilja
CC: Loss of weight and muscles
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Lilja,
I am so sorry to hear you are having such a difficult time. As far as diet, there is no certain diet that works for everyone, you could be reacting to eggs, chicken, or soy (is in a lot of foods in the US). Many of us cannot tolerate fruit other than banana.
I am not sure if you can do the Enterolab tests or something similar there.
The Entocort may help with the weight gain and symptoms, but will not help in the long run.
To regain muscle be sure you are eating a lot of protein.
Many of us can eat potato chips or fritos even when we don't feel like eating anything else...they are high calorie.
I am sure others will be along with more info and encouragement.
Welcome to the group.
I am so sorry to hear you are having such a difficult time. As far as diet, there is no certain diet that works for everyone, you could be reacting to eggs, chicken, or soy (is in a lot of foods in the US). Many of us cannot tolerate fruit other than banana.
I am not sure if you can do the Enterolab tests or something similar there.
The Entocort may help with the weight gain and symptoms, but will not help in the long run.
To regain muscle be sure you are eating a lot of protein.
Many of us can eat potato chips or fritos even when we don't feel like eating anything else...they are high calorie.
I am sure others will be along with more info and encouragement.
Welcome to the group.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
Thank you Nerdhume!
I only eat chicken that grass outside and don't get any drugs, and eggs from chicken who grass outside. I avoid soy, I am good at reading labels
I tested very high on zonulin (mauve factor in urine, also called Pyrroluria). My "total peptides" measured in urine was 128, where max should be 150, but I don't know what this means, or if it is important to know.
Glutenexorphine A5 was also high, but the other gluten- and casein tests were 0.
I was asked to read Loren Cordain's book Paleo Diet, and to avoid almonds, bananas, broccoli, corn and lemon. I don't think our tests are as sophisticated as the ones you have in the U.S.
Comments on my test sheets were: "No pathologic cells. Normal hormone analyses. Total IgE-concentration in serum somewhat elevated, but specific IgE anti bodies are not deteced in this test".
I think I have been a "good girl" and followed orders, but the body works in mysterious ways!
I finally looked up the meaning of peptides, which I have tried to translate from Norwegian. Maybe it can be beneficial for others on this forum?
PEPTIDES:
Glutenexorphines are peptides from the gluten proteine. Gluten is found in wheat, barley and rye. The peptides can pass the gut-/brain barriere, and since they are opioid-alike molecules, they can stick to specific receptoirs in the brain and influence a normal neuro-transmission.
Casomorphines are peptides from caseine. The caseine protein is found in cow’s milk and other kinds of milk. The peptides can pass the gut-/brain barriere, and since they are opioid-alike molecules, they can stick to specific receptoirs in the brain and influence a normal neuro-transmission. Beta-casomorphines are not involved in lactose intolerance.
Opioids? Like in opium? Well, that may explain my constant brain fog and the feeling of being constantly drunk. Fortunately, since I changed my food regime, I don’t have this problem anymore.
I only eat chicken that grass outside and don't get any drugs, and eggs from chicken who grass outside. I avoid soy, I am good at reading labels
I tested very high on zonulin (mauve factor in urine, also called Pyrroluria). My "total peptides" measured in urine was 128, where max should be 150, but I don't know what this means, or if it is important to know.
Glutenexorphine A5 was also high, but the other gluten- and casein tests were 0.
I was asked to read Loren Cordain's book Paleo Diet, and to avoid almonds, bananas, broccoli, corn and lemon. I don't think our tests are as sophisticated as the ones you have in the U.S.
Comments on my test sheets were: "No pathologic cells. Normal hormone analyses. Total IgE-concentration in serum somewhat elevated, but specific IgE anti bodies are not deteced in this test".
I think I have been a "good girl" and followed orders, but the body works in mysterious ways!
I finally looked up the meaning of peptides, which I have tried to translate from Norwegian. Maybe it can be beneficial for others on this forum?
PEPTIDES:
Glutenexorphines are peptides from the gluten proteine. Gluten is found in wheat, barley and rye. The peptides can pass the gut-/brain barriere, and since they are opioid-alike molecules, they can stick to specific receptoirs in the brain and influence a normal neuro-transmission.
Casomorphines are peptides from caseine. The caseine protein is found in cow’s milk and other kinds of milk. The peptides can pass the gut-/brain barriere, and since they are opioid-alike molecules, they can stick to specific receptoirs in the brain and influence a normal neuro-transmission. Beta-casomorphines are not involved in lactose intolerance.
Opioids? Like in opium? Well, that may explain my constant brain fog and the feeling of being constantly drunk. Fortunately, since I changed my food regime, I don’t have this problem anymore.
-
Sheila
- Rockhopper Penguin
- Posts: 1150
- Joined: Wed May 18, 2011 5:10 am
- Location: Palm Beach Gardens, Fl
I'm so sorry that you have had such a difficult time. I was diagnosed in my late 60's and was fortunate to have knowledge of Enterolab testing and of this Board. My mother also had MC and I found the board years ago when she was sick. I got sick in 2011 and I stopped gluten, soy, dairy and eggs immediately and started Entocort. Many other foods were eliminated over the next few years. This past year I finally weaned myself off Entocort. I was down to one 3 mg capsule every other day. I was terrified to stop taking it because I knew it afforded me protection if I ate the "wrong" thing. It took all of that time, from 2011 to 2014 to finally get the inflammation of MC and celiac disease under control. I am eating a modified Paleo diet, adding in some grains in order to maintain my weight. Each of us has to experiment with diet to find food that won't make us sick. I feel "almost" normal. Of course, I'm older now and you don't bounce back as quickly at this age. I go to the gym in order to keep up muscle strength. I'm in the mountains now and walking up and down steep hills is great exercise.
I'm sorry to say it can take 2-3 years of eating right for the inflammation of these diseases to subside. Others in the group who are more knowledgeable will give you much more detailed advice.
Wishing you well,
Sheila W
I'm sorry to say it can take 2-3 years of eating right for the inflammation of these diseases to subside. Others in the group who are more knowledgeable will give you much more detailed advice.
Wishing you well,
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
A person who never made a mistake never tried something new. Einstein
Hi Lilja,
Your symptoms concern me. Some of them were/are due to CC, some of them (unsteady gait, balance, brain fog, etc.) are probably due to damage caused by years of untreated gluten sensitivity, and symptoms such as paresthesia (tingling) are usually caused by a vitamin B-12 deficiency. But your continued loss of muscle mass is what concerns me the most.
Statins are notorious for causing muscle loss. Are you by any chance taking a statin? If so, that is almost surely the reason for your muscle issues.
Have your doctors ever checked your iron level? I don't mean just serum iron level, but serum ferritin also. If they haven't already done so, please ask your doctors to check your serum ferritin level, in order to see whether you have excess iron in storage in the cells of your body. Excess iron can cause serious problems, and one of the symptoms is loss of muscle. Vitamin B-12 deficiency and the treatments used to correct it are often associated with iron issues.
Have your doctors ever checked your methyl folate level (methyl folate is the active form of folic acid)? Many of us have gene mutations that cause folate problems, because our body can't properly convert folic acid into methyl folate so that is is usable. Without an adequate level of methyl folate, the body cannot properly absorb and utilize vitamin B-12, no matter how much supplemental vitamin B-12 we take.
Also, I notice that you did not mention vitamin D. Vitamin D is very important for anyone who has an inflammatory bowel disease (IBD), and CC is an IBD. Vitamin D deficiency leads to a greatly increased risk of developing an (IBD). In addition, IBDs tend to deplete the body's vitamin D supply, so that even if we were not deficient to begin with, we probably eventually will be if we don't take supplemental vitamin D. Most of us here take significant doses of vitamin D, in order to increase our serum vitamin D level, because without adequate vitamin D, the immune system is crippled, and cannot perform correctly. The farther away from the equator we live, the more likely we are to have a vitamin D deficiency, because at higher latitudes, sunlight does not contain adequate levels of ultraviolet B light to allow our skin to manufacture enough vitamin D for our needs (except in summer), even if we receive adequate exposure to sunlight.
Most of us here determine or verify our food sensitivities by means of stool testing. The types of food sensitivities that are associated with CC result in the production of IgA antibodies, and blood tests do not exist to accurately and reliably detect the IgA antibodies associated with food sensitivities in the digestive system. The blood tests are reasonably reliable for determining skin-related allergies, and respiratory allergies (which are marked by IgE antibodies), but they simply don't work for digestive system problems. The only lab in the world that offers reliable, accurate stool tests for food antibodies is EnteroLab, located in Dallas, Texas. They do not license their tests to any other labs, because the tests require a level of consistent performance that most labs cannot deliver. At EnteroLab, all of the tests are done by a single individual, who holds a PhD in chemistry, in order to guarantee reliable, accurate results. The samples have to be shipped frozen, by overnight delivery, but tests can be ordered from anywhere in the world, wherever FedEx, UPS, or DHL overnight services are available. Here's a link to the lab, if you are interested.
https://www.enterolab.com/StaticPages/TestInfo.aspx
Some of us here are sensitive to chicken — all chicken, whether it's organically produced or not. EnteroLab offers a test Panel that includes testing for antibodies to chicken, beef, pork, tuna, etc. Note that it's not necessary to order stool tests if you are sure that you understand your food sensitivities, and you have tracked down all of them and eliminated them from your diet. But if you're not sure about certain foods, these tests can provide reliable results, to remove any doubt about them.
Peptides are simply amino acid strings that are sections broken out of protein molecules during the digestive process. When the digestive system breaks down protein molecules during digestion, certain strings of amino acids (peptides) cannot be broken down any further, because humans lack the digestive enzymes necessary to do that. These peptides either pass harmlessly out of the digestive system with other waste, or in the case of people who are sensitive to the gliadin and glutenin peptides in wheat, and beta-casein peptides in dairy products, the peptides slip through the tight junctions in the gut, into the blood stream, and they are subsequently deposited in organs and joints all over the body, resulting in inflammation, pain, stiffness, etc. This is known as the leaky gut syndrome, and it's the primary cause of systemic symptoms with celiac disease and other IBDs.
Yes, gluten and casein are addictive for many people, and they actually have withdrawal symptoms if they try to discontinue using them.
Tex
Your symptoms concern me. Some of them were/are due to CC, some of them (unsteady gait, balance, brain fog, etc.) are probably due to damage caused by years of untreated gluten sensitivity, and symptoms such as paresthesia (tingling) are usually caused by a vitamin B-12 deficiency. But your continued loss of muscle mass is what concerns me the most.
Statins are notorious for causing muscle loss. Are you by any chance taking a statin? If so, that is almost surely the reason for your muscle issues.
Have your doctors ever checked your iron level? I don't mean just serum iron level, but serum ferritin also. If they haven't already done so, please ask your doctors to check your serum ferritin level, in order to see whether you have excess iron in storage in the cells of your body. Excess iron can cause serious problems, and one of the symptoms is loss of muscle. Vitamin B-12 deficiency and the treatments used to correct it are often associated with iron issues.
Have your doctors ever checked your methyl folate level (methyl folate is the active form of folic acid)? Many of us have gene mutations that cause folate problems, because our body can't properly convert folic acid into methyl folate so that is is usable. Without an adequate level of methyl folate, the body cannot properly absorb and utilize vitamin B-12, no matter how much supplemental vitamin B-12 we take.
Also, I notice that you did not mention vitamin D. Vitamin D is very important for anyone who has an inflammatory bowel disease (IBD), and CC is an IBD. Vitamin D deficiency leads to a greatly increased risk of developing an (IBD). In addition, IBDs tend to deplete the body's vitamin D supply, so that even if we were not deficient to begin with, we probably eventually will be if we don't take supplemental vitamin D. Most of us here take significant doses of vitamin D, in order to increase our serum vitamin D level, because without adequate vitamin D, the immune system is crippled, and cannot perform correctly. The farther away from the equator we live, the more likely we are to have a vitamin D deficiency, because at higher latitudes, sunlight does not contain adequate levels of ultraviolet B light to allow our skin to manufacture enough vitamin D for our needs (except in summer), even if we receive adequate exposure to sunlight.
Most of us here determine or verify our food sensitivities by means of stool testing. The types of food sensitivities that are associated with CC result in the production of IgA antibodies, and blood tests do not exist to accurately and reliably detect the IgA antibodies associated with food sensitivities in the digestive system. The blood tests are reasonably reliable for determining skin-related allergies, and respiratory allergies (which are marked by IgE antibodies), but they simply don't work for digestive system problems. The only lab in the world that offers reliable, accurate stool tests for food antibodies is EnteroLab, located in Dallas, Texas. They do not license their tests to any other labs, because the tests require a level of consistent performance that most labs cannot deliver. At EnteroLab, all of the tests are done by a single individual, who holds a PhD in chemistry, in order to guarantee reliable, accurate results. The samples have to be shipped frozen, by overnight delivery, but tests can be ordered from anywhere in the world, wherever FedEx, UPS, or DHL overnight services are available. Here's a link to the lab, if you are interested.
https://www.enterolab.com/StaticPages/TestInfo.aspx
Some of us here are sensitive to chicken — all chicken, whether it's organically produced or not. EnteroLab offers a test Panel that includes testing for antibodies to chicken, beef, pork, tuna, etc. Note that it's not necessary to order stool tests if you are sure that you understand your food sensitivities, and you have tracked down all of them and eliminated them from your diet. But if you're not sure about certain foods, these tests can provide reliable results, to remove any doubt about them.
Peptides are simply amino acid strings that are sections broken out of protein molecules during the digestive process. When the digestive system breaks down protein molecules during digestion, certain strings of amino acids (peptides) cannot be broken down any further, because humans lack the digestive enzymes necessary to do that. These peptides either pass harmlessly out of the digestive system with other waste, or in the case of people who are sensitive to the gliadin and glutenin peptides in wheat, and beta-casein peptides in dairy products, the peptides slip through the tight junctions in the gut, into the blood stream, and they are subsequently deposited in organs and joints all over the body, resulting in inflammation, pain, stiffness, etc. This is known as the leaky gut syndrome, and it's the primary cause of systemic symptoms with celiac disease and other IBDs.
Yes, gluten and casein are addictive for many people, and they actually have withdrawal symptoms if they try to discontinue using them.
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.
Hello Tex! Thank you for a long and very instructive answer!
I agree with you, and think my muscle loss is due to many years with undiscovered gluten intolerance, which now has lead to CC.
But no, I would never dream of taking statins!
Some yars ago I read this clip from the book «The Great Cholesterol Con: The Truth About What Really Causes Heart Disease and How to Avoid It»:
«Statins are the so-called "wonder drugs" widely prescribed to lower blood cholesterol levels that claim to offer unparalleled protection against heart disease. Many experts claim that they are completely safe and that they are also capable of preventing a whole series of other conditions. This groundbreaking study exposes the truth behind the hype surrounding statins and reveals a number of crucial facts, including that high cholesterol levels do not cause heart disease; that high-fat diets?saturated or otherwise?do not affect blood cholesterol levels; and that for most men and all women the benefits offered by statins are negligible at best. Other data is also provided that shows that statins have many more side affects than is often acknowledged. This hard-hitting survey also points a finger at the powerful pharmaceutical industry and an unquestioning medical profession as perpetrators of the largely facetious concepts of «good» and «bad» cholesterol that are designed to convince millions of people to spend billions on statins. With clarity and wit, this appeal to common sense and scientific fact debunks common assumptions on what constitutes a healthy lifestyle and diet, as well as the idea that there is a miracle cure for heart disease».
My iron levels were good in September 2013, at least I think they are «within»:
Serum Ferritin: 91 (15- 200)
Serum Iron: 16,3 (9,0-34,0)
Serum Folate: >45 (>5,7)
Yes, I know that B12 and B9 are synergists, so I have been taking B9 together with B12 for the last 18 months.
In Norway we are aware of vitamine D (we did «invent» the cod liver oil some 150 years ago…), and we also live in the dark half of the year, so I take 5.600 i.u. of D-vitamins daily, together with a tablespoon of fermented cod liver oil.
My stools and my hair was tested for all kind of vitamins, minerals, parasites, mercury etc, but not for food allergies/intolerances. I am not sure we have laboratories who do these tests, but I will investigate the matter.
I will stop eating chicken. And by doing so, there is scarcely anything left to eat – other than fruit low in sugar, broth, well cooked meat, fish, crabs, lobsters and prawns, and some well cooked vegetables. As to pork, I am not a big fan.
Speaking of porc: I think it is important to think about what the animals you eat have been eating themselves
I agree with you, and think my muscle loss is due to many years with undiscovered gluten intolerance, which now has lead to CC.
But no, I would never dream of taking statins!
Some yars ago I read this clip from the book «The Great Cholesterol Con: The Truth About What Really Causes Heart Disease and How to Avoid It»:
«Statins are the so-called "wonder drugs" widely prescribed to lower blood cholesterol levels that claim to offer unparalleled protection against heart disease. Many experts claim that they are completely safe and that they are also capable of preventing a whole series of other conditions. This groundbreaking study exposes the truth behind the hype surrounding statins and reveals a number of crucial facts, including that high cholesterol levels do not cause heart disease; that high-fat diets?saturated or otherwise?do not affect blood cholesterol levels; and that for most men and all women the benefits offered by statins are negligible at best. Other data is also provided that shows that statins have many more side affects than is often acknowledged. This hard-hitting survey also points a finger at the powerful pharmaceutical industry and an unquestioning medical profession as perpetrators of the largely facetious concepts of «good» and «bad» cholesterol that are designed to convince millions of people to spend billions on statins. With clarity and wit, this appeal to common sense and scientific fact debunks common assumptions on what constitutes a healthy lifestyle and diet, as well as the idea that there is a miracle cure for heart disease».
My iron levels were good in September 2013, at least I think they are «within»:
Serum Ferritin: 91 (15- 200)
Serum Iron: 16,3 (9,0-34,0)
Serum Folate: >45 (>5,7)
Yes, I know that B12 and B9 are synergists, so I have been taking B9 together with B12 for the last 18 months.
In Norway we are aware of vitamine D (we did «invent» the cod liver oil some 150 years ago…), and we also live in the dark half of the year, so I take 5.600 i.u. of D-vitamins daily, together with a tablespoon of fermented cod liver oil.
My stools and my hair was tested for all kind of vitamins, minerals, parasites, mercury etc, but not for food allergies/intolerances. I am not sure we have laboratories who do these tests, but I will investigate the matter.
I will stop eating chicken. And by doing so, there is scarcely anything left to eat – other than fruit low in sugar, broth, well cooked meat, fish, crabs, lobsters and prawns, and some well cooked vegetables. As to pork, I am not a big fan.
Speaking of porc: I think it is important to think about what the animals you eat have been eating themselves
That article about cholesterol is right on target. Statins are one of the cruelest hoaxes ever perpetrated on the public by the coalition of the pharmaceutical and medical industries. In this country, doctors make a big deal out of testing cholesterol levels as part of almost every checkup, pretending that the information those tests provide actually mean something. I guess they don't know what else to test, and they feel that they need to test something in order to earn their high wages. 
Your iron levels appear to be fine. Yes, I remember that cod liver oil originated over there. I can remember taking it when I was very young. That's probably enough vitamin D, but it wouldn't hurt to have it tested sometime, just to be sure.
Most of the members here who cannot tolerate chicken do well on turkey. Duck and goose are other options that are similar, and usually safe.
I would be afraid to eat pork from China and some of the SE Asia countries, but in this country, pork rations in feedlots are usually mostly corn and soybeans, with a few trace minerals added. Swine are actually much more sanitary animals than most people give them credit for. Growing up on a farm, I learned that chickens are the most unsanitary animals on the farm. They never hesitate to defecate in their own feed and water (something that pigs will never do, at least not intentionally), and they will eat almost anything, including any and all grain that they can locate in the manure of other animals.
Tex
Your iron levels appear to be fine. Yes, I remember that cod liver oil originated over there. I can remember taking it when I was very young. That's probably enough vitamin D, but it wouldn't hurt to have it tested sometime, just to be sure.
Most of the members here who cannot tolerate chicken do well on turkey. Duck and goose are other options that are similar, and usually safe.
I would be afraid to eat pork from China and some of the SE Asia countries, but in this country, pork rations in feedlots are usually mostly corn and soybeans, with a few trace minerals added. Swine are actually much more sanitary animals than most people give them credit for. Growing up on a farm, I learned that chickens are the most unsanitary animals on the farm. They never hesitate to defecate in their own feed and water (something that pigs will never do, at least not intentionally), and they will eat almost anything, including any and all grain that they can locate in the manure of other animals.
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 Lilja,
I can relate to everything you said. I was dx in my 30s and experienced much of what you have described. For me, it turns out my thyroid was a big contributor to my issues and I'm working on managing that in addition to my CC. Some years are a blur of pain and remembrance of a pretty poor quality of life without much help from the doctors. Keep reading here for answers. Some things may help your case and some may not since we are all the same but so different too. The suggestions of what has worked for others in our shoes is worth trying. The Enterolab tests are a great place to start.
I do not have nearly the muscle mass I once did but now have started a routine again. I focus on getting enough protein daily and have started using my Total Gym again build back what I lost.
I agree, the cooking part can become tedious. Don't give up hope because there are answers here!
Oh, I'm on Entocort too. Don't want to be but sometimes we have to take what helps. Good luck.
I can relate to everything you said. I was dx in my 30s and experienced much of what you have described. For me, it turns out my thyroid was a big contributor to my issues and I'm working on managing that in addition to my CC. Some years are a blur of pain and remembrance of a pretty poor quality of life without much help from the doctors. Keep reading here for answers. Some things may help your case and some may not since we are all the same but so different too. The suggestions of what has worked for others in our shoes is worth trying. The Enterolab tests are a great place to start.
I do not have nearly the muscle mass I once did but now have started a routine again. I focus on getting enough protein daily and have started using my Total Gym again build back what I lost.
I agree, the cooking part can become tedious. Don't give up hope because there are answers here!
Oh, I'm on Entocort too. Don't want to be but sometimes we have to take what helps. Good luck.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Sheila,
Raising chickens in confinement is politically incorrect and therefore unpopular these days, but one thing about it — chickens raised in confinement aren't allowed the freedom to do some of the unsavory things that free-range chickens do.
Tex
Raising chickens in confinement is politically incorrect and therefore unpopular these days, but one thing about it — chickens raised in confinement aren't allowed the freedom to do some of the unsavory things that free-range chickens do.
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 Lilja. You are doing many things right so far. This disease takes some time to figure out for all of us. One diet does not fit all. The main culprits are gluten, dairy, soy, and eggs, but many of us have discovered that we have other intolerances that if eaten, can prevent remission.
I am able to eat ALL animal proteins ( well, not dairy), so you might want to try many more types of meat. Protein helps our muscles build ( I'm a personal trainer), but also helps heal our guts.
We have found that pre and probiotics can cause more harm then good, so if you are still taking them, you might want to rethink that one. Every time I have tried one, my D returns.
All fruit for me was an issue… at least at the beginning. Any fiber foods like RAW fruits and veggies and beans /legumes can also be trouble.
Most of us can eat white rice, but some can't. Most of us can eat potatoes, but sweet potatoes are even better.
SOme of us can eat nuts and butters and some can't . I have always been Ok with almonds and cashews.
I was on Entocort for 6 months while I eliminated most problematic foods. it's important to take it long enough ( at least 4 months) , lower the dose when you start to get constipated, and SLOWLY wean off of it when the time comes. It's extremely important to figure out the food thing because ( as you know), your symptoms will just come back when you get off the drug again.
Can you do the Enterolab test from where you are?
Good luck and keep us posted
Leah
I am able to eat ALL animal proteins ( well, not dairy), so you might want to try many more types of meat. Protein helps our muscles build ( I'm a personal trainer), but also helps heal our guts.
We have found that pre and probiotics can cause more harm then good, so if you are still taking them, you might want to rethink that one. Every time I have tried one, my D returns.
All fruit for me was an issue… at least at the beginning. Any fiber foods like RAW fruits and veggies and beans /legumes can also be trouble.
Most of us can eat white rice, but some can't. Most of us can eat potatoes, but sweet potatoes are even better.
SOme of us can eat nuts and butters and some can't . I have always been Ok with almonds and cashews.
I was on Entocort for 6 months while I eliminated most problematic foods. it's important to take it long enough ( at least 4 months) , lower the dose when you start to get constipated, and SLOWLY wean off of it when the time comes. It's extremely important to figure out the food thing because ( as you know), your symptoms will just come back when you get off the drug again.
Can you do the Enterolab test from where you are?
Good luck and keep us posted
Leah
Hi Lilja and welcome,
I just have one thing to point out, the advice you got from you functional medicine doctors seem to be good. After you have eliminated all your major trigger foods, the most important thing is to enjoy life, do things that you like, stress management, be grateful and have fun.
If you think life feels like crap, can not find joy in life, get yourself worked up over the food and so on, it does not matter what you are eating. You will not get well as long as you don't take care of that first.
My advice is: Eliminate major problem foods, if you have problems with that, do the Enterolab test (you can do that from Norway), supplement with things recommended on this forum (like D-vit, zinc, mag), and try to have fun, do some stress management and give it some time.
Jonas
I just have one thing to point out, the advice you got from you functional medicine doctors seem to be good. After you have eliminated all your major trigger foods, the most important thing is to enjoy life, do things that you like, stress management, be grateful and have fun.
If you think life feels like crap, can not find joy in life, get yourself worked up over the food and so on, it does not matter what you are eating. You will not get well as long as you don't take care of that first.
My advice is: Eliminate major problem foods, if you have problems with that, do the Enterolab test (you can do that from Norway), supplement with things recommended on this forum (like D-vit, zinc, mag), and try to have fun, do some stress management and give it some time.
Jonas
Thank you Tex, DebE13, Sheila and Leah !
In an ideal world we should rely on the food, and that the food was full of the nutrients we need. But that is not the case, so we have to take all kinds of supplements, and especially we who cannot eat what we want.
It is almost like being a detective, finding what is good and bad for us
But, I didn’t know that chicken eat their own pooh… That makes it all easier to cut out chicken meat!
DebE13: It’s a good idea to take a thyroid test, maybe mine is working on high speed, since I lose weight.
Thank you again for contributing with good input in this «jungle»
Hej Jonas: Tack för uppmuntrande ord!
Lilja
In an ideal world we should rely on the food, and that the food was full of the nutrients we need. But that is not the case, so we have to take all kinds of supplements, and especially we who cannot eat what we want.
It is almost like being a detective, finding what is good and bad for us
But, I didn’t know that chicken eat their own pooh… That makes it all easier to cut out chicken meat!
DebE13: It’s a good idea to take a thyroid test, maybe mine is working on high speed, since I lose weight.
Thank you again for contributing with good input in this «jungle»
Hej Jonas: Tack för uppmuntrande ord!
Lilja
