I am a newbie, diagnosed with LC on 1/8/17. I am awaiting my Enterolab results. I began budesonide on 1/9/17 which quickly ended the D. I still have some abdominal pain, of course.
I've been following the Stage One diet plan, learning as I go, thanks to the immense information on this forum. (Yes, like others, I have felt very alone. Sometimes I want to cry and wish I had a punching bag to pound. This is my 2nd AI as I was diagnosed with chromic urticaria (hives) three years ago. Fortunately, that is now under control with medications. I am female, age 67 and was not feeling a lot of stress prior to the diagnosis. It's hard to not be feeling it now, but I am trying!)
A problem I have is that I am not getting enough calories and have lost 8 pounds. I was fine with a 5-6 pound loss but now it's getting to be too much for my height and weight. I'd love to get back on the treadmill to do my fast walking and slow jog, which makes me feel mentally better, but have avoided doing it due to further weight loss.
Please offer any suggestions that you can. Are there any commercial, safe drinks I can buy like Ensure? I, forever, have only eaten two meals a day as I am not at all hungry first thing in the morning and wait until I want to eat, around 11:00 AM.
As an aside, I meet with the GI doc's PA this afternoon. I want to increase the budesonide regime beyond 3 months, after reading Wayne's book and advice form many of you. My doctor, too, never mentioned diet, so I don't know how the PA is going to respond. Fingers crossed.
Skp
New, Stage One, Too Much Weight Loss!
Hi,
Welcome to our Internet family. It sounds as though you're off to a good start on your recovery journey.
Yes, the diet changes to cut out grains/carbs tends to cause weight loss because of the calorie loss. But remember that carbs produce fat, not muscle. Protein builds muscle, and we need additional protein to help repair the damage caused by the inflammation in our intestines. Reasonable exercise shouldn't cause significant weight loss because it stimulates appetite to replace the calories burned, and we need to eat more to help heal our gut. As you are aware, a lot of the weight loss from exercise is temporary because it's water and electrolytes.
The solution is to ingest more calories from the foods that you can safely eat. Part of the problem (IMO) is skipping breakfast. By limiting yourself to 2 meals, you are limiting your potential calorie intake. But there's nothing wrong with eating breakfast later in the day if you don't feel like eating first thing in the morning, as long as you eat enough altogether during the day.
For most of us, eating more (but smaller) meals each day works better for treating MC than eating 2 or 3 big meals. Why? Because the inflammation compromises the ability of our small intestine to produce normal amounts of the enzymes needed, especially those needed for the digestion of carbs. And this is another reason why limiting carbs in our diet gives our digestive system a break and improves digestion. Eating smaller, but more frequent meals helps because it reduces the quantity of the respective enzymes needed during the relatively short window of time when they must be produced on demand.
Breakfast is my biggest meal of the day, which makes sense because it's the first meal after a relatively long period of fasting, overnight. My breakfast is mostly protein and it gets me off to a great start. When I was recovering, my breakfast often consisted of the same foods as my other meals. But back then, the size of my breakfast (or choice of foods) sometimes depended on how I felt, because on some mornings I felt as though I had been hit by a truck. I was lucky to get some soup down, because of the nausea.
Regarding the budesonide, if your doc or PA will not extend your budesonide prescription, that might not be necessary if you respond well to your diet changes. With a good response, you may be able to begin tapering your budesonide dose sooner than normal and that will allow you to stretch out the supply of pills you have so that you can extend the dosage tapering farther. Many members here find that the best way to determine when to step down their budesonide dosage is to reduce the dose at the first signs of constipation. For some, that comes much sooner than the treatment regimen laid out by their doctor, so their supply of capsules go much farther. Of course for others that point comes later, so they may need an extension of their prescription in order to have an adequate supply.
None of the "energy" drinks are safe for us. Most are loaded with proteins that we cannot tolerate, particularly casein and its derivatives.
I hope that some of this is helpful. Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. It sounds as though you're off to a good start on your recovery journey.
Yes, the diet changes to cut out grains/carbs tends to cause weight loss because of the calorie loss. But remember that carbs produce fat, not muscle. Protein builds muscle, and we need additional protein to help repair the damage caused by the inflammation in our intestines. Reasonable exercise shouldn't cause significant weight loss because it stimulates appetite to replace the calories burned, and we need to eat more to help heal our gut. As you are aware, a lot of the weight loss from exercise is temporary because it's water and electrolytes.
The solution is to ingest more calories from the foods that you can safely eat. Part of the problem (IMO) is skipping breakfast. By limiting yourself to 2 meals, you are limiting your potential calorie intake. But there's nothing wrong with eating breakfast later in the day if you don't feel like eating first thing in the morning, as long as you eat enough altogether during the day.
For most of us, eating more (but smaller) meals each day works better for treating MC than eating 2 or 3 big meals. Why? Because the inflammation compromises the ability of our small intestine to produce normal amounts of the enzymes needed, especially those needed for the digestion of carbs. And this is another reason why limiting carbs in our diet gives our digestive system a break and improves digestion. Eating smaller, but more frequent meals helps because it reduces the quantity of the respective enzymes needed during the relatively short window of time when they must be produced on demand.
Breakfast is my biggest meal of the day, which makes sense because it's the first meal after a relatively long period of fasting, overnight. My breakfast is mostly protein and it gets me off to a great start. When I was recovering, my breakfast often consisted of the same foods as my other meals. But back then, the size of my breakfast (or choice of foods) sometimes depended on how I felt, because on some mornings I felt as though I had been hit by a truck. I was lucky to get some soup down, because of the nausea.
Regarding the budesonide, if your doc or PA will not extend your budesonide prescription, that might not be necessary if you respond well to your diet changes. With a good response, you may be able to begin tapering your budesonide dose sooner than normal and that will allow you to stretch out the supply of pills you have so that you can extend the dosage tapering farther. Many members here find that the best way to determine when to step down their budesonide dosage is to reduce the dose at the first signs of constipation. For some, that comes much sooner than the treatment regimen laid out by their doctor, so their supply of capsules go much farther. Of course for others that point comes later, so they may need an extension of their prescription in order to have an adequate supply.
None of the "energy" drinks are safe for us. Most are loaded with proteins that we cannot tolerate, particularly casein and its derivatives.
I hope that some of this is helpful. 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.
Hi skp,
I lost 12 kilos during 6 months in 2012-2013.
Quitting all casein and gluten, (together with Entocort for a period), stopped my watery D, and my nausea, my unsteady gait and the brainfog disappeared. But, I was unable to gain weight. I also took magnesium glycinate, Epsom-salt baths, B12, B9 and B6, zink and lots of vitamin D3.
I started making bone broth in 2013, and now I drink 3-4 cups a day. To begin with I ate only well cooked meat and some well cooked vegetables, steamed fish and some herring, and also cooked the rice and my peeled potatoes in bone broth. I'm now able to digest meat hardly cooked. The thing that turned everything around for me, was when I decided to switch to a traditional diet, i.e. to eat like our forefathers did. I eat raw liver (50 grams/day), make fermented milk from unpasteurized, unhomogenized milk, hardly cooked meat, 3-4 raw organic egg yolks, fermented cod liver oil. I have quit taking supplements for now, except for magnesium chloride (liquid).
As to the raw liver, I'm still on chicken liver, planning to advance to lamb's liver, and then cattle liver,(preferrably from grass fed animals). This is because the taste is awful, but if I put on heaps of cinnamon and eat it together with fermented milk, I can do it.
I hope to get a hold of liver (and hearts) from venison, because this food is said to be the most nutritious food one can eat.
PS: I got so excited by talking about my new diet, that I forgot to mention my weight gain, which is 2.1 kilos since November, 2016.
Lilja
I lost 12 kilos during 6 months in 2012-2013.
Quitting all casein and gluten, (together with Entocort for a period), stopped my watery D, and my nausea, my unsteady gait and the brainfog disappeared. But, I was unable to gain weight. I also took magnesium glycinate, Epsom-salt baths, B12, B9 and B6, zink and lots of vitamin D3.
I started making bone broth in 2013, and now I drink 3-4 cups a day. To begin with I ate only well cooked meat and some well cooked vegetables, steamed fish and some herring, and also cooked the rice and my peeled potatoes in bone broth. I'm now able to digest meat hardly cooked. The thing that turned everything around for me, was when I decided to switch to a traditional diet, i.e. to eat like our forefathers did. I eat raw liver (50 grams/day), make fermented milk from unpasteurized, unhomogenized milk, hardly cooked meat, 3-4 raw organic egg yolks, fermented cod liver oil. I have quit taking supplements for now, except for magnesium chloride (liquid).
As to the raw liver, I'm still on chicken liver, planning to advance to lamb's liver, and then cattle liver,(preferrably from grass fed animals). This is because the taste is awful, but if I put on heaps of cinnamon and eat it together with fermented milk, I can do it.
I hope to get a hold of liver (and hearts) from venison, because this food is said to be the most nutritious food one can eat.
PS: I got so excited by talking about my new diet, that I forgot to mention my weight gain, which is 2.1 kilos since November, 2016.
Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Lilja and Tex have covered most of what i would say
you will need to increase to 3 meals a day, (and ideally have some protein snacks imbetween meals)
In regards to the hives etc, have you read the posts about histamine/mast cell. This is a common issues for many MC'ers. Taking P5P (active form of B6) will help with this issue and the MC healing plan, and is line with Lilja's reply about taking B6, B9, B12
what supplements are you taking? these will help the healing process.
good luck with the healing journey
you will need to increase to 3 meals a day, (and ideally have some protein snacks imbetween meals)
In regards to the hives etc, have you read the posts about histamine/mast cell. This is a common issues for many MC'ers. Taking P5P (active form of B6) will help with this issue and the MC healing plan, and is line with Lilja's reply about taking B6, B9, B12
what supplements are you taking? these will help the healing process.
good luck with the healing journey
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi,
I forgot to mention the importance of coconut oil (a couple of tablespoons a day) , and unrefined sea salt. As soon as my tommy aches, or I notice that a flu is on the way, or my joints hurt, or I'm sleepless I take 1,5 teaspoon of salt a couple of times during the day, and a cap of the liquid magnesium chloride and it all disappears. This particular magnesium, that someone spoke so highly about on this board (whose name I cannot remember), is very good:
https://www.rnareset.com/products/remag ... 3899661319
Lilja
I forgot to mention the importance of coconut oil (a couple of tablespoons a day) , and unrefined sea salt. As soon as my tommy aches, or I notice that a flu is on the way, or my joints hurt, or I'm sleepless I take 1,5 teaspoon of salt a couple of times during the day, and a cap of the liquid magnesium chloride and it all disappears. This particular magnesium, that someone spoke so highly about on this board (whose name I cannot remember), is very good:
https://www.rnareset.com/products/remag ... 3899661319
Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Hi skp,
I'm no expert, but I can tell you what worked for me. I dropped close to 30 pounds before I was diagnosed with MC (and it was weight I could not afford to lose), and have only slowly been gaining it back. I am a runner, so that doesn't help keep weight on, but I ended up eating 4 "meals" a day (typically meat, mushy squash, and sometimes a coconut bar or cream of rice). I remain on that diet, and use the following tool to track my calorie intake and goals:
cronometer.com
I'm not a big fan of micromanaging my nutrition, etc., but that tool helps. Often one of my "meals" comes when I don't feel particularly hungry, and perhaps that is a bad thing, but I feel that getting proper nutrients and calories is important during my recovery. If others feel differently, I'd love to hear their opinions (as I am figuring this out, too).
Hope that helps? I'm hoping for a quick recovery for you.
I'm no expert, but I can tell you what worked for me. I dropped close to 30 pounds before I was diagnosed with MC (and it was weight I could not afford to lose), and have only slowly been gaining it back. I am a runner, so that doesn't help keep weight on, but I ended up eating 4 "meals" a day (typically meat, mushy squash, and sometimes a coconut bar or cream of rice). I remain on that diet, and use the following tool to track my calorie intake and goals:
cronometer.com
I'm not a big fan of micromanaging my nutrition, etc., but that tool helps. Often one of my "meals" comes when I don't feel particularly hungry, and perhaps that is a bad thing, but I feel that getting proper nutrients and calories is important during my recovery. If others feel differently, I'd love to hear their opinions (as I am figuring this out, too).
Hope that helps? I'm hoping for a quick recovery for you.
I definitely agree with you. It takes protein and other vital nutrients to heal the damage done by inflammation in our gut.Brian wrote:I feel that getting proper nutrients and calories is important during my recovery. If others feel differently, I'd love to hear their opinions (as I am figuring this out, too).
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.
Wow, thanks so much for your quick replies and for your support! It's a relief to correspond with others who have walked this walk.
It's obvious that I need to eat more than twice a day and up my protein. I have snacked with plain rice crackers and almond butter which hasn't caused a problem. Also agreeable has been liver pate, grass fed pork with no additives. I've made bone broth five times, big pots so that I can drink some each day. I like the idea of making my rice with it. Sometimes I've added carrots and chicken. My diet includes lots of chicken but I will up that amount. Sweet potatoes without the skin have been a staple and I had well cooked green beans the other night. I always add coconut oil to something I am eating.
Tex, I did have two days of constipation so I upped my magnesium and now my stools are soft but still normal. I may cut it back to one 250 mg a day instead of two for the time being. I have taken chelated magnesium but because it can be a laxative, I've ordered Life Flo Magnesium lotion, 330 mg per teaspoon. How much should I use?
The ReMag, Gabes, sounds pretty ideal and will consider that. I appreciate your dosing and testing information via another discussion and will try to find that again.
Because I was not able to extend the budesonide with the PA (I may post my experience with another topic heading), I'm glad to know Tex that I may be able to wean off with the what I have.
As regards my hives and histamine, the FDA gave the thumbs up to an asthma medication, for chronic hives. Xolair. It has been a life saver for so many of us with this horrible disease. It is an injection which I get once a month. Xolair blocks IgE. It captures most of the IgE, blocking its role in the allergic response, including histamine. Also, many of us with chronic hives take another allergy medicine once a day, Singluair or the generic. It inhibits leuotriene in the allergic response process. I was also taking four Allegra (generic) a day but am down to one of two.
My supplements include:
GNC Women's multiple vitamin with out iron or iodine. ( Iron used to hurt my stomach, years ago and I am allergic to shell fish so avoid the iodine.)
Calcium Citrate with D (A few years ago osteopenia began. I refused to take the bone density meds and instead upped my calcium and D. All subsequent bone density tests have remained the same. Therefore, I am reluctant to not take it.)
Vitamin D3. I took 6000 IU for years and have now increase to almost 10,000.
Vitamin B12, 1000 mcg
Vitamin C, 250 mg twice a day
Omega 3 twice a day
Magnesium (see above)
CoQ10 250 mg
Only one of the above includes soy but may contain other things that are not to my benefit.
The GI doc put me on Prilosec as GERD symptoms began about the same time as the diarrhea. I had already read negative things about it but quit it entirely a week ago. Instead, I am taking famotidine 2-3 times a day.
The cronometer sounds interesting and I will check it out.
Thanks again!
Skp
It's obvious that I need to eat more than twice a day and up my protein. I have snacked with plain rice crackers and almond butter which hasn't caused a problem. Also agreeable has been liver pate, grass fed pork with no additives. I've made bone broth five times, big pots so that I can drink some each day. I like the idea of making my rice with it. Sometimes I've added carrots and chicken. My diet includes lots of chicken but I will up that amount. Sweet potatoes without the skin have been a staple and I had well cooked green beans the other night. I always add coconut oil to something I am eating.
Tex, I did have two days of constipation so I upped my magnesium and now my stools are soft but still normal. I may cut it back to one 250 mg a day instead of two for the time being. I have taken chelated magnesium but because it can be a laxative, I've ordered Life Flo Magnesium lotion, 330 mg per teaspoon. How much should I use?
The ReMag, Gabes, sounds pretty ideal and will consider that. I appreciate your dosing and testing information via another discussion and will try to find that again.
Because I was not able to extend the budesonide with the PA (I may post my experience with another topic heading), I'm glad to know Tex that I may be able to wean off with the what I have.
As regards my hives and histamine, the FDA gave the thumbs up to an asthma medication, for chronic hives. Xolair. It has been a life saver for so many of us with this horrible disease. It is an injection which I get once a month. Xolair blocks IgE. It captures most of the IgE, blocking its role in the allergic response, including histamine. Also, many of us with chronic hives take another allergy medicine once a day, Singluair or the generic. It inhibits leuotriene in the allergic response process. I was also taking four Allegra (generic) a day but am down to one of two.
My supplements include:
GNC Women's multiple vitamin with out iron or iodine. ( Iron used to hurt my stomach, years ago and I am allergic to shell fish so avoid the iodine.)
Calcium Citrate with D (A few years ago osteopenia began. I refused to take the bone density meds and instead upped my calcium and D. All subsequent bone density tests have remained the same. Therefore, I am reluctant to not take it.)
Vitamin D3. I took 6000 IU for years and have now increase to almost 10,000.
Vitamin B12, 1000 mcg
Vitamin C, 250 mg twice a day
Omega 3 twice a day
Magnesium (see above)
CoQ10 250 mg
Only one of the above includes soy but may contain other things that are not to my benefit.
The GI doc put me on Prilosec as GERD symptoms began about the same time as the diarrhea. I had already read negative things about it but quit it entirely a week ago. Instead, I am taking famotidine 2-3 times a day.
The cronometer sounds interesting and I will check it out.
Thanks again!
Skp