Colonoscopy and Mast Cell Testing Results
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Joefnh
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Jenny, AS is Ankylosing Spondylitis, a type of arthritis that results in damage that fills in the spaces between joints with calcium and if untreated can fuse that joint together, although this takes many years for that level of damage to occur.
Usally it affects the lowest part of the back first and also can affect the joints around the neck and ribcage making it hard to take a deep breath. It's main issue when flaring up is pain and can be easily controlled with anti inflammatories or other meds like the TNF alpha meds such as Humira, Remicade etc.. Besides the joint pain it can also exhibit eye inflammation and D.
The only true treatment know to exist that can treat all symptoms are 'lobstaahs', BBQ and golden retriever hugs....I wish
..... But I'm willing to be a test subject for that treatment protocol...if only it were that easy
Usally it affects the lowest part of the back first and also can affect the joints around the neck and ribcage making it hard to take a deep breath. It's main issue when flaring up is pain and can be easily controlled with anti inflammatories or other meds like the TNF alpha meds such as Humira, Remicade etc.. Besides the joint pain it can also exhibit eye inflammation and D.
The only true treatment know to exist that can treat all symptoms are 'lobstaahs', BBQ and golden retriever hugs....I wish
..... But I'm willing to be a test subject for that treatment protocol...if only it were that easyJoe
Hi Joe!
Thanks for the update - I had been wondering about your latest results. Overall very encouraging, I'd say. I am a little concerned about that too-low vitamin D level. It should be higher on 5000 IUs/day. Although 40-80 is the recommended range, I'd aim for at least 60 if I were you. I'll bet the vitmain A you were taking reduced the absorption of vitamin D. What do you think? Are you still taking A?
Good luck with the rheumy! I'll look forward to your report.
Love,
Polly
Thanks for the update - I had been wondering about your latest results. Overall very encouraging, I'd say. I am a little concerned about that too-low vitamin D level. It should be higher on 5000 IUs/day. Although 40-80 is the recommended range, I'd aim for at least 60 if I were you. I'll bet the vitmain A you were taking reduced the absorption of vitamin D. What do you think? Are you still taking A?
Good luck with the rheumy! I'll look forward to your report.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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Joefnh
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Polly I'm not taking vitamin A and have not taken it for about a year. One of my concerns is that after the bowel resection a year ago, I lost almost 10 inches of the jejunum and I believe it's in the jejunum that vitamins and minerals are absorbed. Do you think this is a bit of short bowel syndrome affecting these levels?
I wouldn't think 10 inches of loss would have that much affect, but that whole area has been affected by the Crohns and my GI doctor has expressed some minor concern and is monitoring various levels including vitamin D a couple of times a year.
I am also concerned with the VD levels being this low, are there any hints or tricks on bringing this up? Is it safe to increase the dosage beyond 5000IU a day?
I wouldn't think 10 inches of loss would have that much affect, but that whole area has been affected by the Crohns and my GI doctor has expressed some minor concern and is monitoring various levels including vitamin D a couple of times a year.
I am also concerned with the VD levels being this low, are there any hints or tricks on bringing this up? Is it safe to increase the dosage beyond 5000IU a day?
Joe
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mzh
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Polly, any suggestions on how to get higher if we're taking 5,000 D3 and sit at 30? I think I know the answer - taking 50,000 D2 a day for 6 months got me to 70 - but that just seems like a terribly large amount of D to take long-term. I'd sure like to find another way to do it.Polly wrote:Hi Joe!
Thanks for the update - I had been wondering about your latest results. Overall very encouraging, I'd say. I am a little concerned about that too-low vitamin D level. It should be higher on 5000 IUs/day. Although 40-80 is the recommended range, I'd aim for at least 60 if I were you. I'll bet the vitmain A you were taking reduced the absorption of vitamin D. What do you think? Are you still taking A?
Good luck with the rheumy! I'll look forward to your report.
Love,
Polly
Also have sleep apnea
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Joefnh
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- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Jenny I just checked the Dartmouth Medical website and found that indeed Harvard Pilgrim is accepted at these locations.
http://patients.dartmouth-hitchcock.org ... urers.html
You can contact the billing office at Dartmouth Hitchcock to check on your specific plan at (800) 238-0505
http://patients.dartmouth-hitchcock.org ... urers.html
You can contact the billing office at Dartmouth Hitchcock to check on your specific plan at (800) 238-0505
Joe
As long as you take 20,000 IU per day or less, you're pretty safe for at least several months. I originally did that for a couple of weeks or so, and then went to about 10,000 IU per day for a couple of months to get my level up.
5,000 IU per day is the normal consumption level, so if you take no more than that, and you don't get any substantial amount from food or sunlight, your level will remain basically unchanged over time.
The literature shows that approximately 40,000 IU or more per day, every day, for months or years has generally been cited in the cases where a toxic reaction occurred. Absorption rates vary, though, and so does sunlight conversion rates, so to be on the safe side, it's best to not exceed 20,000 IU per day for any significant length of time.
For someone who is only moderately low (low relative to optimum, not low absolutely) I would think that 10,000 IU or thereabouts would be a safer daily dose, when trying to increase the blood level. Testing after 2 to 3 months will tell you how fast your level is increasing, and you can adjust the rate accordingly. Just remember that if you get a lot of sun exposure, your level will tend to increase faster, and less supplementation is needed. Most of us apparently don't get much vitamin D from the sun, though, and MC severely limits vitamin D availability for some of us, while for others, it doesn't seem to limit our vitamin D as much. That's why testing is so important, because we each have to work out our own optimum dosage rate, and the rate will change as we heal.
Tex
5,000 IU per day is the normal consumption level, so if you take no more than that, and you don't get any substantial amount from food or sunlight, your level will remain basically unchanged over time.
The literature shows that approximately 40,000 IU or more per day, every day, for months or years has generally been cited in the cases where a toxic reaction occurred. Absorption rates vary, though, and so does sunlight conversion rates, so to be on the safe side, it's best to not exceed 20,000 IU per day for any significant length of time.
For someone who is only moderately low (low relative to optimum, not low absolutely) I would think that 10,000 IU or thereabouts would be a safer daily dose, when trying to increase the blood level. Testing after 2 to 3 months will tell you how fast your level is increasing, and you can adjust the rate accordingly. Just remember that if you get a lot of sun exposure, your level will tend to increase faster, and less supplementation is needed. Most of us apparently don't get much vitamin D from the sun, though, and MC severely limits vitamin D availability for some of us, while for others, it doesn't seem to limit our vitamin D as much. That's why testing is so important, because we each have to work out our own optimum dosage rate, and the rate will change as we heal.
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.
Jenny,
If I were you I'd call my insurance provider. You could probably be covered, but from what I remember working in admitting at a hospital for several years is that it all depends on what type of insurance your company has bought into. I can't imagine that it wouldn't cover out of state, but you might want to check to be sure.
I go to the same GI as Joe in NH and my insurance does cover.
Joe & Jenny: I think the three of us should try to get together at some point seeing we all live kind of close.
Nancy
If I were you I'd call my insurance provider. You could probably be covered, but from what I remember working in admitting at a hospital for several years is that it all depends on what type of insurance your company has bought into. I can't imagine that it wouldn't cover out of state, but you might want to check to be sure.
I go to the same GI as Joe in NH and my insurance does cover.
Joe & Jenny: I think the three of us should try to get together at some point seeing we all live kind of close.
Nancy
Hi Joe,
My Mom has celiac disease and was diagnosed with celiac around age 50. Around age 45 she was diagnosed with lower back "osteoarthritis". She lives in a rural part of the country so never really went to a specialist. Her chiropracter prescribed low back exercises. She's been consistently doing her low back excercises daily for 30 years and I believe they really help her particularly after flying on airplanes. She may also be on meds for the low back issue. I'm not really sure. Reading your thread I think she probably has the undiagnosed A.S. as she's had everything else associated with celiac---tooth enamel issues in her 30's, GERD in her late 30's, and the low back "arthritis" as well as some other autoimmune things. The rheumy Doc may be able to give you some low back exercises in addition to meds that might help. Best wishes, Brandy
PS. Overall Mom is in great shape. I always kind of chuckle when I read posts about posters concerned they are trending towards celiac. Mom has a large garden every year. She stacks wood and builds fires
pretty much daily every winter. We'd all like to be as healthy and active as Mom at 75.
My Mom has celiac disease and was diagnosed with celiac around age 50. Around age 45 she was diagnosed with lower back "osteoarthritis". She lives in a rural part of the country so never really went to a specialist. Her chiropracter prescribed low back exercises. She's been consistently doing her low back excercises daily for 30 years and I believe they really help her particularly after flying on airplanes. She may also be on meds for the low back issue. I'm not really sure. Reading your thread I think she probably has the undiagnosed A.S. as she's had everything else associated with celiac---tooth enamel issues in her 30's, GERD in her late 30's, and the low back "arthritis" as well as some other autoimmune things. The rheumy Doc may be able to give you some low back exercises in addition to meds that might help. Best wishes, Brandy
PS. Overall Mom is in great shape. I always kind of chuckle when I read posts about posters concerned they are trending towards celiac. Mom has a large garden every year. She stacks wood and builds fires
pretty much daily every winter. We'd all like to be as healthy and active as Mom at 75.
Kitty,
Vitamin D is vital to facilitate calcium absorption to keep bones healthy and strong. Without adequate vitamin D our bones will deteriorate, regardless of how much calcium we ingest.
Vitamin D is essential for good immune system health. Without adequate vitamin D, our resistance to disease and infection is weakened.
Vitamin D helps to prevent just about every disease you can think of, all the way up to and including cancer.
A deficiency of vitamin D predisposes us to virtually all autoimmune diseases, especially inflammatory bowel disease.
This list is just the tip of the iceberg for the health benefits of vitamin D, but it should be enough to get the point across. Trust me, vitamin D is vital for good health.
People who develop Crohn's disease, for example, almost always have a vitamin D level below 20, and I'm guessing here (because most of them probably never even have their vitamin D level tested), but I suspect that most of them have a level below 10.
Tex
Vitamin D is vital to facilitate calcium absorption to keep bones healthy and strong. Without adequate vitamin D our bones will deteriorate, regardless of how much calcium we ingest.
Vitamin D is essential for good immune system health. Without adequate vitamin D, our resistance to disease and infection is weakened.
Vitamin D helps to prevent just about every disease you can think of, all the way up to and including cancer.
A deficiency of vitamin D predisposes us to virtually all autoimmune diseases, especially inflammatory bowel disease.
This list is just the tip of the iceberg for the health benefits of vitamin D, but it should be enough to get the point across. Trust me, vitamin D is vital for good health.
People who develop Crohn's disease, for example, almost always have a vitamin D level below 20, and I'm guessing here (because most of them probably never even have their vitamin D level tested), but I suspect that most of them have a level below 10.
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.