first time in forum
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first time in forum
Im new to this forum and find it a bit confusing but ill try anything. Diagnosed with Lymphocytic MC in July 2016, been miserable for eight months. weight loss, and malabsorbtion biggest issues. headaches, joint aches, tired, dry eyes, losing muscle, skin very thin and wrinkled, hair getting thin. On fourth GI doctor, all kinds of tests, MRIs, Cat scans, blood tests etc, no answers. It is affecting my mental state too, getting depressed. Feel like there is no hope.
Diagnosed with Lymphocytic MC in July 2016, miserable ever since
Hi Bob,
Welcome to the forum, you came to the right place! We know what you are going through. Have you been prescribed medicine (Entocort) against the inflammation yet? This will help greatly in the beginning to get the inflammation under control. You also need to get on a bland allergen free diet. No gluten/wheat, lactose, casein, soy, eggs, no raw salads/vegetables (think overcooked), no fruits (only banana or cooked apple might work). Add vit D3 and Magnesium to your regimen. Slowly things will get better. You can find everything you need to know on this forum. Others will chime in to give you more detailed information.
Good luck!
Henry
Welcome to the forum, you came to the right place! We know what you are going through. Have you been prescribed medicine (Entocort) against the inflammation yet? This will help greatly in the beginning to get the inflammation under control. You also need to get on a bland allergen free diet. No gluten/wheat, lactose, casein, soy, eggs, no raw salads/vegetables (think overcooked), no fruits (only banana or cooked apple might work). Add vit D3 and Magnesium to your regimen. Slowly things will get better. You can find everything you need to know on this forum. Others will chime in to give you more detailed information.
Good luck!
Henry
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Hi Bob
welcome to our group (sympathies on the diagnosis and months of symptoms and that you had to find us)
Henry has summed up what I would say.
we have suggestions for the bland eating plan that works really well to reduce symptoms and encourage healing.
http://www.perskyfarms.com/phpBB2/viewforum.php?f=79
also spend some time reading posts in the 'members success stories' area - this will give you an idea of what others have done, how long it took etc.
there are some other recent new people that have been asking questions, so if you look at some of the posts in this main message board area, and read the discussions in those posts then this will also help you
There is hope, lots of it! The hard part is there is no quick fix. but with some eating plan adjustments, and taking the right supplements you can minimise symptoms and get your life back
welcome to our group (sympathies on the diagnosis and months of symptoms and that you had to find us)
Henry has summed up what I would say.
we have suggestions for the bland eating plan that works really well to reduce symptoms and encourage healing.
http://www.perskyfarms.com/phpBB2/viewforum.php?f=79
also spend some time reading posts in the 'members success stories' area - this will give you an idea of what others have done, how long it took etc.
there are some other recent new people that have been asking questions, so if you look at some of the posts in this main message board area, and read the discussions in those posts then this will also help you
There is hope, lots of it! The hard part is there is no quick fix. but with some eating plan adjustments, and taking the right supplements you can minimise symptoms and get your life back
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 Bob,
I have 2 pieces of advice. First, listen to all of the folks on this forum. They give great advice that actually works. I wasn't sure to trust when I was diagnosed with LC, but I took a leap of faith in following all of the incredible people in this forum, and I credit their advice to my progress in getting better.
Second, actually put the time in to learn and take the advice of others. If nothing else, I've learned that once you start to get some strategies that work, the healing process takes some time. But if you pay attention, you'll notice the small improvements that add up over time. My point: it's well worth the struggle to get better because you will in fact feel better.
Brian
I have 2 pieces of advice. First, listen to all of the folks on this forum. They give great advice that actually works. I wasn't sure to trust when I was diagnosed with LC, but I took a leap of faith in following all of the incredible people in this forum, and I credit their advice to my progress in getting better.
Second, actually put the time in to learn and take the advice of others. If nothing else, I've learned that once you start to get some strategies that work, the healing process takes some time. But if you pay attention, you'll notice the small improvements that add up over time. My point: it's well worth the struggle to get better because you will in fact feel better.
Brian
Hello Bob,
Welcome aboard.
Been there, done that, and I definitely agree that after we get to the depression stage, our world shrinks until it seems to become a hopeless place where instead of living, we merely exist . But I can assure you that once you get your diet sorted out, and your vitamin D and magnesium levels restored to a better level, your outlook on life, and your optimism will be revitalized.
And as Brian pointed out, life after MC (at least after it is under control) is not only good, but it can be awesome, if we are dedicated and willing to reorganize our priorities as needed. But we have to buckle down and really pay attention to details during the recovery stage. There's a lot to learn, but if we take life a day at a time it is certainly doable.
Again, welcome aboard and please feel free to ask anything.
Tex
Welcome aboard.
The reason why your doctors have been unable to provide the reasons for your symptoms is because they do not understand the disease (MC). Like all IBDs, the inflammation that perpetuates the disease causes malabsorption problems, and the malabsorption problems lead to vitamin and mineral deficiencies. As Henry pointed out, virtually all of us are deficient in both vitamin D and magnesium. While the joint aches are due to the increased intestinal permeability (leaky gut) caused by gluten sensitivity, most of the other symptoms are due to vitamin D and magnesium deficiencies. Fatigue, muscle issues, thinning skin, hair loss, and other neurological issues, including depression, are typical symptoms of magnesium deficiency. I can provide medical research references for these claims if you want to see them.Bob wrote:eight loss, and malabsorbtion biggest issues. headaches, joint aches, tired, dry eyes, losing muscle, skin very thin and wrinkled, hair getting thin. On fourth GI doctor, all kinds of tests, MRIs, Cat scans, blood tests etc, no answers. It is affecting my mental state too, getting depressed. Feel like there is no hope.
Been there, done that, and I definitely agree that after we get to the depression stage, our world shrinks until it seems to become a hopeless place where instead of living, we merely exist . But I can assure you that once you get your diet sorted out, and your vitamin D and magnesium levels restored to a better level, your outlook on life, and your optimism will be revitalized.
And as Brian pointed out, life after MC (at least after it is under control) is not only good, but it can be awesome, if we are dedicated and willing to reorganize our priorities as needed. But we have to buckle down and really pay attention to details during the recovery stage. There's a lot to learn, but if we take life a day at a time it is certainly doable.
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.
Bob, don't lose hope. I was that way last May when I latched on to this forum. I have been in remission since mid October. Things came together once I had followed the eating plan. Meat and Turkey and well cooked 2 to 3 veggies. Morning noon and night with turkey snacks in between. Also Magnesium and Vit.D levels up. This all took about 5 mos. I feel much better and am gaining weight. The G.I. Docs are far and few between who understand this disease. Read and read this site and ask questions. Gabes and Tex always reply to help no matter the time of day. Good luck and I will send positive vibes and prayers your way.
Janie
Hi Bob,
Welcome,
If you have not seen Tex's (Wayne Persky's book on Microscopic Colitis) it is highly recommended. Link is in the upper right hand corner of the forum.
I believe there are some New York doctors on this thread that have been recommended by MCers.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14422
Honestly....it sounds like you could use a bit of a break from doctors for awhile.
I had pretty severe neurological issues early on with this disease. The neurological issues have been gone for years with the help of this forum. I only got platitudes from the doctors.
Welcome,
If you have not seen Tex's (Wayne Persky's book on Microscopic Colitis) it is highly recommended. Link is in the upper right hand corner of the forum.
I believe there are some New York doctors on this thread that have been recommended by MCers.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14422
Honestly....it sounds like you could use a bit of a break from doctors for awhile.
I had pretty severe neurological issues early on with this disease. The neurological issues have been gone for years with the help of this forum. I only got platitudes from the doctors.
Hi Bob,
Everyone has given you really good information. Please know that it is normal to feel overwhelmed and depressed; however, pat yourself on your back for finding us early in your diagnosis rather than ten years after diagnosis, as I did. I was diagnosed in 2009 after 3y of WD, then a change in GI doctor prompted a new colonoscopy that said, "nope, you don't have it," despite the symptoms. Three years later, after living in a fog and trying to figure this out, I changed to another GI, new colonoscopy indicated positive for MC. While awaiting test results I found this group and I'm so thankful that I did.
Had I not found this group, I would have never known about the benefits of Magnesium and VD. I would never have known about which specific foods are the safest to begin the healing process, I would have never known about Entero Labs that narrowed down the specific foods and additives that trigger the flaring. And I would never have known the positive support that I receive from this family.
Stay with us. Ask questions. You will get better and the fog will clear.
Everyone has given you really good information. Please know that it is normal to feel overwhelmed and depressed; however, pat yourself on your back for finding us early in your diagnosis rather than ten years after diagnosis, as I did. I was diagnosed in 2009 after 3y of WD, then a change in GI doctor prompted a new colonoscopy that said, "nope, you don't have it," despite the symptoms. Three years later, after living in a fog and trying to figure this out, I changed to another GI, new colonoscopy indicated positive for MC. While awaiting test results I found this group and I'm so thankful that I did.
Had I not found this group, I would have never known about the benefits of Magnesium and VD. I would never have known about which specific foods are the safest to begin the healing process, I would have never known about Entero Labs that narrowed down the specific foods and additives that trigger the flaring. And I would never have known the positive support that I receive from this family.
Stay with us. Ask questions. You will get better and the fog will clear.
Diana
Hi, Bob. I don't have much to add except welcome to our internet family. We've all been in your shoes so there is no better group to help you get your life back. It's normal to feel depressed, this certainly is a life changing disease. I am upbeat most of the time, but now and again 3 years post-diagnosis I just want to go out and have pizza with my family. That's not going to happen and I know it so I put mind over matter and enjoy my life for what it is now. Search the forums and don't hesitate to ask questions. We're all here to help you.
Marcia
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Vit D3, at least 5000 iu per day while there are symptoms etc.
Magnesium daily requirement is about 350-400mg ELEMENTAL magnesium per day - to correct a deficiency you may need at least 600mg per day for a couple of months
with both of these, we suggest starting one at a time, start low dose and work up gradually to the daily dosage we suggest
Magnesium daily requirement is about 350-400mg ELEMENTAL magnesium per day - to correct a deficiency you may need at least 600mg per day for a couple of months
with both of these, we suggest starting one at a time, start low dose and work up gradually to the daily dosage we suggest
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Bob,
Regarding magnesium, chelated magnesium (magnesium glycinate) seems to work best for most of us. Some types of magnesium supplements are not well absorbed. Magnesium oxide is the worst. We can absorb only about 2 % of magnesium oxide. The rest remains in our gut where it mixes with water to form magnesium hydroxide (aka milk of magnesia) which is a potent laxative. IOW, if we don't absorb the magnesium supplement well, it acts as a laxative, and most of us certainly don't need a laxative.
Tex
Regarding magnesium, chelated magnesium (magnesium glycinate) seems to work best for most of us. Some types of magnesium supplements are not well absorbed. Magnesium oxide is the worst. We can absorb only about 2 % of magnesium oxide. The rest remains in our gut where it mixes with water to form magnesium hydroxide (aka milk of magnesia) which is a potent laxative. IOW, if we don't absorb the magnesium supplement well, it acts as a laxative, and most of us certainly don't need a laxative.
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.