Hello: I am a newbie here and need some guidance / feedback. I will try to be as clear / brief as possible...
I was diagnosed two years ago with collagenous colitis. Shortly afterward I started experiencing excessive hair shedding. While I was able to get the diarrhea / pain from the colitis under control by making many changes to my diet (no meds - I wouldn't do it), I cannot get the hair shedding to stop! Luckily, I had a massive head of hair to begin with, but after two years of excessive shedding, this is becoming a major issue! I've been to my gp (more than once), dermatologist and an endocrinologist. None of these doctors have helped me. I feel it just has to be related to this colitis because that's when this all started. I do not have Alopecia and the hair shedding is all over my head - not just in certain areas, which indicates to me this is something systemic. I had the blood tests done with the endoncrinologist, and the only thing she had to say was that it could be because of a slightly elevated testosterone level, as I was getting estrogen / testosterone injections for hormone therapy. I stopped getting the testosterone injections six months ago but that apparently wasn't the problem because my hair is still falling out! There is no history of early hair loss in my family either.
Have any of you experienced this long-term hair loss issue due to the onset of colitis? Could this be a result of inflammation even though I have the colitis symptoms mostly under control? Could it be that my body is unable to absorb the needed nutrients? I wonder, because all of this has also taken a toll on my skin, etc.
Any feedback or guidance would certainly be appreciated. I am only 54 years and do NOT want to go bald!
Thank you so much!
Connie
Help! Hair Loss / Excessive Hair Shedding with CC
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Connie,
Welcome to the forum. Hair loss is a tough problem to resolve. Usually, with MC patients it's due to certain anti-inflammatory medications, but since you haven't been taking any, that rules out those medications in your case. There are no applicable medical references so we can only speculate about the cause. MC causes a malabsorption problem. In the short term, it may not be a problem, but over the long-term certain vitamin and mineral deficiencies begin to become a problem. We know for example that most MC patients soon become vitamin D and magnesium deficient (if they were not already), and after enough years, the "B" vitamins tend to become deficient. Beyond that, there are probably others (including trace elements) that eventually become deficient.
We suspect that deficiencies of biotin, niacin (vitamin B3), vitamin C, and certain minerals such as zinc and iron, can be a factor in hair loss. The testosterone might have been a factor, but I'm not sure that raising testosterone levels automatically lowers estrogen levels. I wonder about hormones such as estrogen, because during pregnancy, hair often becomes thicker (as estrogen levels rise), and then that extra hair falls out as estrogen levels decline again to more normal levels.
Altogether, this poses a rather complex problem when trying to pinpoint the exact cause. It might be helpful to get a hair sample analysis. The analysis won't tell you what your vitamin and mineral levels are now, but it should be able to detect any deficiencies that occurred while the hair was growing, sort of like looking at the growth rings of trees to analyze the growing conditions during the lifespan of the tree.
Maybe someone with this same problem can offer some suggestions. My own hair aged at an accelerated rate after the onset of MC. I was in my upper 50s and it relatively quickly turned grey, started to fall out, etc., and it continues to thin now, but I haven't really been concerned about it. It's probably associated with old age (as most doctors would say.
) Of course we know it isn't really due to old age — everything has a reason, and that reason is never old age. There's a specific cause for everything that happens, if we can only track it down.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the forum. Hair loss is a tough problem to resolve. Usually, with MC patients it's due to certain anti-inflammatory medications, but since you haven't been taking any, that rules out those medications in your case. There are no applicable medical references so we can only speculate about the cause. MC causes a malabsorption problem. In the short term, it may not be a problem, but over the long-term certain vitamin and mineral deficiencies begin to become a problem. We know for example that most MC patients soon become vitamin D and magnesium deficient (if they were not already), and after enough years, the "B" vitamins tend to become deficient. Beyond that, there are probably others (including trace elements) that eventually become deficient.
We suspect that deficiencies of biotin, niacin (vitamin B3), vitamin C, and certain minerals such as zinc and iron, can be a factor in hair loss. The testosterone might have been a factor, but I'm not sure that raising testosterone levels automatically lowers estrogen levels. I wonder about hormones such as estrogen, because during pregnancy, hair often becomes thicker (as estrogen levels rise), and then that extra hair falls out as estrogen levels decline again to more normal levels.
Altogether, this poses a rather complex problem when trying to pinpoint the exact cause. It might be helpful to get a hair sample analysis. The analysis won't tell you what your vitamin and mineral levels are now, but it should be able to detect any deficiencies that occurred while the hair was growing, sort of like looking at the growth rings of trees to analyze the growing conditions during the lifespan of the tree.
Maybe someone with this same problem can offer some suggestions. My own hair aged at an accelerated rate after the onset of MC. I was in my upper 50s and it relatively quickly turned grey, started to fall out, etc., and it continues to thin now, but I haven't really been concerned about it. It's probably associated with old age (as most doctors would say.
) Of course we know it isn't really due to old age — everything has a reason, and that reason is never old age. There's a specific cause for everything that happens, if we can only track it down.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.
Thank you for your quick response, Tex!
While I have no idea where to go for a hair analysis, I will certainly look into it. I also look forward to hearing from anyone else who would have any insight as to where to go from here. If I don't get a handle on this soon, I'll be forced to purchase a wig which is ridiculous at my age! Again, I feel there is a connection to the colitis since that is when this excessive shedding all began. I have been on the estrogen therapy for many years, so I don't feel it's that - but who knows!! I wish I knew what type of doctor to see to determine what is causing this crazy hair loss. It's certainly NOT normal!
Thanks again - and I so appreciate this forum and all of the wonderful / informative posts from all of you! Bless you!!
Connie
While I have no idea where to go for a hair analysis, I will certainly look into it. I also look forward to hearing from anyone else who would have any insight as to where to go from here. If I don't get a handle on this soon, I'll be forced to purchase a wig which is ridiculous at my age! Again, I feel there is a connection to the colitis since that is when this excessive shedding all began. I have been on the estrogen therapy for many years, so I don't feel it's that - but who knows!! I wish I knew what type of doctor to see to determine what is causing this crazy hair loss. It's certainly NOT normal!
Thanks again - and I so appreciate this forum and all of the wonderful / informative posts from all of you! Bless you!!
Connie
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
i am in agreement with Tex's suggestions above.
my observations and this is from forums with people with other health issues, there are a few key nutrients that are key to stopping hair loss;
- zinc
- biotin
- B3
- amino acids
home made bone broth is a good source of amino acids and collegon that are important to hair health.
in addition to Tex's comments about hormones, nutrients such as magnesium, B6 and zinc are key for balanced hormones (which then means minimised issues due to imbalanced hormones)
if this has been an issue for a while, please note that it will take a few months of the right supplements before you see improvements, be patient.
my observations and this is from forums with people with other health issues, there are a few key nutrients that are key to stopping hair loss;
- zinc
- biotin
- B3
- amino acids
home made bone broth is a good source of amino acids and collegon that are important to hair health.
in addition to Tex's comments about hormones, nutrients such as magnesium, B6 and zinc are key for balanced hormones (which then means minimised issues due to imbalanced hormones)
if this has been an issue for a while, please note that it will take a few months of the right supplements before you see improvements, be patient.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I'm not familiar with Great Plains collagen, so I can't help there, but mesalamine is one of the medications that often causes hair thinning.
Your hair should recover when you stop using the medication.
Tex
Your hair should recover when you stop using the medication.
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.
Thank you, Gabes & Brandy!
I have more questions...
1)If I have deficiencies in these key nutrients, wouldn't it be mostly likely due to my body's inability to properly absorb these nutrients from my food (due to the colitis / inflammation / abnormal gut) since the collagenous colitis onset)?
2) Also, collagenous colitis is (what I was told) an over-production / build-up of collagen (protein) in my intestines. What I wonder is, if that is the case, how would my gut be able to properly absorb / distribute collagen, or any of the other supplements?
3) Is there a way to get these supplements in the way of shots as opposed to orally?
4) Should I get bloodwork done by a regular doctor to see what my deficiencies are, or should I see someone else -- a nutritionalist? Could they help me more than my GP (who seems to be clueless with helping me with my hair shedding?
5) If I just started taking supplements on my own without finding out my levels, how much of each supplement should I take?
I am embarrassed guys, as I feel like such a "simpleton" with all of this. I just don't have a great understanding of how all of this works for people who don't have a normal gut anymore. In addition to that, I've never had to worry about any of this prior to the onset of this colitis!! I was a healthy, happy person! (as I'm sure you all understand what I mean) :-)
Thanks for your responses / help - I very, very much appreciate it, because I feel so lost right now and don't know where to turn at this point .... :-(
All the Best,
Connie
I have more questions...
1)If I have deficiencies in these key nutrients, wouldn't it be mostly likely due to my body's inability to properly absorb these nutrients from my food (due to the colitis / inflammation / abnormal gut) since the collagenous colitis onset)?
2) Also, collagenous colitis is (what I was told) an over-production / build-up of collagen (protein) in my intestines. What I wonder is, if that is the case, how would my gut be able to properly absorb / distribute collagen, or any of the other supplements?
3) Is there a way to get these supplements in the way of shots as opposed to orally?
4) Should I get bloodwork done by a regular doctor to see what my deficiencies are, or should I see someone else -- a nutritionalist? Could they help me more than my GP (who seems to be clueless with helping me with my hair shedding?
5) If I just started taking supplements on my own without finding out my levels, how much of each supplement should I take?
I am embarrassed guys, as I feel like such a "simpleton" with all of this. I just don't have a great understanding of how all of this works for people who don't have a normal gut anymore. In addition to that, I've never had to worry about any of this prior to the onset of this colitis!! I was a healthy, happy person! (as I'm sure you all understand what I mean) :-)
Thanks for your responses / help - I very, very much appreciate it, because I feel so lost right now and don't know where to turn at this point .... :-(
All the Best,
Connie
Yes, the inflammation that causes MC (LC & CC) causes a malabsorption problem.Connie wrote:]1)If I have deficiencies in these key nutrients, wouldn't it be mostly likely due to my body's inability to properly absorb these nutrients from my food (due to the colitis / inflammation / abnormal gut) since the collagenous colitis onset)?
The collagen band thickening in your lamina propria won't directly affect the way that your digestive system handles collagen/gellatin, other then the malabsorption issue for certain nutrients.Connie wrote:]2) Also, collagenous colitis is (what I was told) an over-production / build-up of collagen (protein) in my intestines. What I wonder is, if that is the case, how would my gut be able to properly absorb / distribute collagen, or any of the other supplements?
Possibly, but it's usually more practical to use transdermal patches or spray or just larger oral doses.Connie wrote:]3) Is there a way to get these supplements in the way of shots as opposed to orally?
You'll probably have to see a naturopath or a nutritionist to order a hair test (or order it yourself).Connie wrote:]4) Should I get bloodwork done by a regular doctor to see what my deficiencies are, or should I see someone else -- a nutritionalist? Could they help me more than my GP (who seems to be clueless with helping me with my hair shedding?
If it were me, and I wanted to get to remission as surely and as fast as possible, I would take somewhere in the range of 5,000–10,000 IU of vitamin D (depending on my current blood level of vitamin D) and about 300–400 mg of magnesium (or the transdermal equivalent) in order to help control the inflammation and maximize healing.Connie wrote:]5) If I just started taking supplements on my own without finding out my levels, how much of each supplement should I take?
Not to worry. We all started with a clean slate as far as knowledge about the disease is concerned. If you continue to read and ask questions you'll soon know more about how to control this disease than your gastroenterologist ever dreamed.Connie wrote:I am embarrassed guys, as I feel like such a "simpleton" with all of this. I just don't have a great understanding of how all of this works for people who don't have a normal gut anymore. In addition to that, I've never had to worry about any of this prior to the onset of this colitis!! I was a healthy, happy person! (as I'm sure you all understand what I mean) :-)
I hope this helps.
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.
https://www.amazon.com/Great-Lakes-Gela ... G7EDU?th=1
Real protein is better but I add this to broth sometimes.
My hair stopped falling out after I went into remission. Now my hair and nails are great!
If you are not having D can you get off of the mesalamine?
Real protein is better but I add this to broth sometimes.
My hair stopped falling out after I went into remission. Now my hair and nails are great!
If you are not having D can you get off of the mesalamine?
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
to expand on Tex's replies
home made bone broth is a good starting point, it has amino acids and other nutrients in a easily absorbable state for your body. you dont have to drink it straight, things like soups, stews made on homle made bone broth, cook veges in it
sticking with bland low inflammation eating plan, starting with key supplements like Vit D and magnesium with time your body will absorb nutrients way better.
there are some patch vitamins that others here have found useful. but if you start with the Vit D3 and magnesium dosages suggested by Tex, that is your best starting point. in a few weeks, look at starting things like active B's. (thorne methyl guard plus is a good product)
most of all, be patient, healing and fixing nutrient deficiences takes time.. we have to take it at the pace your body can handle. if you overload it with high dose multiple nutrients, it may cause issues
home made bone broth is a good starting point, it has amino acids and other nutrients in a easily absorbable state for your body. you dont have to drink it straight, things like soups, stews made on homle made bone broth, cook veges in it
sticking with bland low inflammation eating plan, starting with key supplements like Vit D and magnesium with time your body will absorb nutrients way better.
there are some patch vitamins that others here have found useful. but if you start with the Vit D3 and magnesium dosages suggested by Tex, that is your best starting point. in a few weeks, look at starting things like active B's. (thorne methyl guard plus is a good product)
most of all, be patient, healing and fixing nutrient deficiences takes time.. we have to take it at the pace your body can handle. if you overload it with high dose multiple nutrients, it may cause issues
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thanks for your advice / replies, Tex, Brandy, Gabes!
Tex: First of all, thanks a million for your suggested levels on the "D" and magnesium!
Another question, I read on-line that many hair analysis tests warrant providing way too much hair to do a proper hair analysis. One individual even said in her review that she sent her test back to the company she ordered it from on-line because she was already thinning too much (as I am) to spare that much hair. Do you think blood tests would suffice?
Brandy: Thanks for the on-line link!
Gabes: Thank you! I will take your advice and am looking into homemade bone broth. My excessive shedding has been occurring for over 2.5 years, so I am learning the hard way to be patient. I do realize that it will take several months in order to see results. Bless you!
Tex: First of all, thanks a million for your suggested levels on the "D" and magnesium!
Another question, I read on-line that many hair analysis tests warrant providing way too much hair to do a proper hair analysis. One individual even said in her review that she sent her test back to the company she ordered it from on-line because she was already thinning too much (as I am) to spare that much hair. Do you think blood tests would suffice?
Brandy: Thanks for the on-line link!
Gabes: Thank you! I will take your advice and am looking into homemade bone broth. My excessive shedding has been occurring for over 2.5 years, so I am learning the hard way to be patient. I do realize that it will take several months in order to see results. Bless you!
Hi again:
I forgot to ask a question about "remission". Is remission from Colitis when you no longer have daily diarrhea and stomach pain? If that is the case, I'm in remission for the most part. If I eat certain foods (such as chocolate, highly processed food or fried food, the diarrhea comes back). If I stay away from those types of foods, I'm basically OK with the exception of some bloating, having gas and actually sometimes having the opposite problem - straining to have a bm (if that makes any sense at all). Who would think I would have constipation after being diagnosed with colitis! This is all so confusing! Often times though, I am on the borderline of diarrhea. Maybe I should do this Enterolab testing you all refer to get a specific report on everything I am sensitive to? Thoughts???
Thanks much, :-)
Connie
I forgot to ask a question about "remission". Is remission from Colitis when you no longer have daily diarrhea and stomach pain? If that is the case, I'm in remission for the most part. If I eat certain foods (such as chocolate, highly processed food or fried food, the diarrhea comes back). If I stay away from those types of foods, I'm basically OK with the exception of some bloating, having gas and actually sometimes having the opposite problem - straining to have a bm (if that makes any sense at all). Who would think I would have constipation after being diagnosed with colitis! This is all so confusing! Often times though, I am on the borderline of diarrhea. Maybe I should do this Enterolab testing you all refer to get a specific report on everything I am sensitive to? Thoughts???
Thanks much, :-)
Connie
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
remission is slightly different things to different people
for me, remission is minimal symptoms most of the time! that i can live life.
in line with your situation above that you have highly processed food or fried food and the D comes back, i would not call this remission. for me it is that i can have small treats and not have major reactions.
constipation is common, and there are quite a few of us that had C dominate MC. for 2 years or more my BM were either constipation or MC mud.
constipation is still an indicator of inflammation and magnesium deficiency.
entorolab testing is fastest way to fine tune eating plan to set up your staples with safest foods.
for me, remission is minimal symptoms most of the time! that i can live life.
in line with your situation above that you have highly processed food or fried food and the D comes back, i would not call this remission. for me it is that i can have small treats and not have major reactions.
constipation is common, and there are quite a few of us that had C dominate MC. for 2 years or more my BM were either constipation or MC mud.
constipation is still an indicator of inflammation and magnesium deficiency.
entorolab testing is fastest way to fine tune eating plan to set up your staples with safest foods.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Connie,
If you need to see on paper exactly which foods cause you to react, then the EnteroLab tests will be a big help because they will virtually remove all doubt about which foods are safe and which foods are not.
Remission to me is when I have no MC symptoms and I feel great, never having to worry about bathroom accidents, or constipation at the other extreme
Many of us are sensitive to chocolate. It's also a high-histamine food. Many of us react to highly processed foods because they often contain one or more ingredients that we cannot tolerate. Fried foods are a problem for many of us during recovery, especially if they are fried in vegetable (which is usually soy) oil. Refined coconut oil is much better for frying.
Tex
If you need to see on paper exactly which foods cause you to react, then the EnteroLab tests will be a big help because they will virtually remove all doubt about which foods are safe and which foods are not.
Remission to me is when I have no MC symptoms and I feel great, never having to worry about bathroom accidents, or constipation at the other extreme
Many of us are sensitive to chocolate. It's also a high-histamine food. Many of us react to highly processed foods because they often contain one or more ingredients that we cannot tolerate. Fried foods are a problem for many of us during recovery, especially if they are fried in vegetable (which is usually soy) oil. Refined coconut oil is much better for frying.
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.