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Several years ago, as the result of a colonoscopy/endoscopy with tissue biopsy, I was diagnosed with Collagenous Colitis. I went through a horrible period dealing with D. My gall bladder was removed about a year later, and not sure if it was a coincidence, but my D. stopped not to long after the surgery. Even though I rarely get D., my stomach gives me fits (pain, discomfort, gas, bloating). It comes and goes. I will go through a period where it's not too bad, then I will go through a period where it is. Some days are better than others. Are these typical symptoms? It seems that most of the individuals on this forum deal primarily with D.
Hi,
Welcome to the discussion board. You're correct that most people who have CC/LC/MC typically have a problem with uncontrollable D. But some of us (including me) have alternating periods of D and C (constipation) when our MC is active. And a few of us have only C. Fewer still have normal bowel movements, but other symptoms may include nausea, abdominal pains, cramps, gas, bloating, lower back pains, headaches or migraines, etc. Some have only vague stomach or abdominal distress, that can wax and wane. All of these symptoms are a result of the inflammation that is associated with the disease whenever it is active.
So while your symptoms are typical, it's somewhat uncommon for them to not include D. It's difficult to control symptoms in cases such as yours with an anti-inflammatory medication, because most of the medications that are the most effective, tend to cause C, so they're not appropriate if D is not present, and they can make the symptoms worse.
In cases such as yours, diet changes to avoid the foods that are causing the inflammation offer the only practical way to treat the disease. Regardless of the type of symptoms we have, most of us are able to control our symptoms by means of diet changes, but tracking down all of the problem foods can require a lot of detective work in most cases. Stool testing to look for IgA antibodies to certain foods can catch most of the most common food sensitivities, but tests are not available for all foods, only the ones that are the most common problems.
For most people, removal of their gallbladder typically triggers D, due to excess bile acid, result in bile acid malabsorption. The fact that your D stopped with the removal of your gallbladder suggests that your case may be "interesting", and possibly more difficult to resolve.
Are you taking any medications now? Sometimes medications can cause the very symptoms that they are prescribed to treat, or they can cause other problems due to side effects. Many medications are known to affect MC.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the discussion board. You're correct that most people who have CC/LC/MC typically have a problem with uncontrollable D. But some of us (including me) have alternating periods of D and C (constipation) when our MC is active. And a few of us have only C. Fewer still have normal bowel movements, but other symptoms may include nausea, abdominal pains, cramps, gas, bloating, lower back pains, headaches or migraines, etc. Some have only vague stomach or abdominal distress, that can wax and wane. All of these symptoms are a result of the inflammation that is associated with the disease whenever it is active.
So while your symptoms are typical, it's somewhat uncommon for them to not include D. It's difficult to control symptoms in cases such as yours with an anti-inflammatory medication, because most of the medications that are the most effective, tend to cause C, so they're not appropriate if D is not present, and they can make the symptoms worse.
In cases such as yours, diet changes to avoid the foods that are causing the inflammation offer the only practical way to treat the disease. Regardless of the type of symptoms we have, most of us are able to control our symptoms by means of diet changes, but tracking down all of the problem foods can require a lot of detective work in most cases. Stool testing to look for IgA antibodies to certain foods can catch most of the most common food sensitivities, but tests are not available for all foods, only the ones that are the most common problems.
For most people, removal of their gallbladder typically triggers D, due to excess bile acid, result in bile acid malabsorption. The fact that your D stopped with the removal of your gallbladder suggests that your case may be "interesting", and possibly more difficult to resolve.
Are you taking any medications now? Sometimes medications can cause the very symptoms that they are prescribed to treat, or they can cause other problems due to side effects. Many medications are known to affect MC.
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 Tex,
Thanks for responding. I am not taking any prescription meds at this time. My GI doc wanted to put me on meds when I was first diagnosed, but I did not want to go that route because I do not tolerate prescription meds very well. I do take quite a few supplements. Are there any supplements that should be avoided?
Thanks for responding. I am not taking any prescription meds at this time. My GI doc wanted to put me on meds when I was first diagnosed, but I did not want to go that route because I do not tolerate prescription meds very well. I do take quite a few supplements. Are there any supplements that should be avoided?
Depending on your food sensitivities, some supplements can be a mine field. Usually, we're not sensitive to the active ingredients in common pharmaceutical products (including supplements) — it's the inactive ingredients that cause problems. I'm sure there are exceptions to this for some of us (because we are all different), so probably in some cases, active ingredients cause problems. But with most products, it's the inactive ingredients that are the problem, because manufacturers never seem to worry about choosing inactive ingredients that cause problems for many people who use those products.
The biggest problem for many of us is that so many supplements contain soy or a derivative of soy, and over half of us are sensitive to soy. And in most cases, if we are sensitive to a food or ingredient, we are sensitive to even tiny traces. Even the small amounts found in medications and supplements can cause our immune system to react. Some of us have to avoid all of the many medications that contain some form of lactose. And a while back, herbs used for seasoning were in the news because so many of them apparently contain all sorts of foreign matter ranging from rodent droppings to who-knows-what. Of course herbal products are pretty much outside of FDA regulation, unless they are advertised to cure some ill.
And in their infinite wisdom, when our legislature passed the law that mandates food labeling to clearly point out certain allergens, for some unknown reason they chose to exempt pharmaceutical products. My guess is that the reason is associated with the big contributions that pharmaceutical companies make to reelection campaigns.
In fact, according to law, a manufacturer of pharmaceutical products only has to list the active ingredient or ingredients, and the amount in the product. Fortunately, most manufacturers voluntarily list inactive ingredients in products, but they are under no legal obligation to do so, so one wonders if all of those labels are accurate.
At any rate, because they are exempted from the requirement to make a special note (in plain language) on the label about allergens, we have to read those labels very carefully. Sometimes such ingredients are hidden in long, complicated chemical names that we may not be familiar with unless we do our homework.
Many/most of us have problems with tolerating probiotic products while we are recovering. After we are in remission, most of us can usually tolerate many probiotics. But while our gut is inflamed, most of us find that probiotics do not help, and some of us find that they can make our symptoms much worse.
Lower back pain is usually associated with a sensitivity to either gluten or casein (casein is the primary protein in all dairy products), or both gluten and casein. In fact, lower back pain, along with bloating, are usually the first symptoms that I notice if my diet becomes accidentally contaminated with gluten or casein.
Tex
The biggest problem for many of us is that so many supplements contain soy or a derivative of soy, and over half of us are sensitive to soy. And in most cases, if we are sensitive to a food or ingredient, we are sensitive to even tiny traces. Even the small amounts found in medications and supplements can cause our immune system to react. Some of us have to avoid all of the many medications that contain some form of lactose. And a while back, herbs used for seasoning were in the news because so many of them apparently contain all sorts of foreign matter ranging from rodent droppings to who-knows-what. Of course herbal products are pretty much outside of FDA regulation, unless they are advertised to cure some ill.
And in their infinite wisdom, when our legislature passed the law that mandates food labeling to clearly point out certain allergens, for some unknown reason they chose to exempt pharmaceutical products. My guess is that the reason is associated with the big contributions that pharmaceutical companies make to reelection campaigns.
In fact, according to law, a manufacturer of pharmaceutical products only has to list the active ingredient or ingredients, and the amount in the product. Fortunately, most manufacturers voluntarily list inactive ingredients in products, but they are under no legal obligation to do so, so one wonders if all of those labels are accurate.At any rate, because they are exempted from the requirement to make a special note (in plain language) on the label about allergens, we have to read those labels very carefully. Sometimes such ingredients are hidden in long, complicated chemical names that we may not be familiar with unless we do our homework.
Many/most of us have problems with tolerating probiotic products while we are recovering. After we are in remission, most of us can usually tolerate many probiotics. But while our gut is inflamed, most of us find that probiotics do not help, and some of us find that they can make our symptoms much worse.
Lower back pain is usually associated with a sensitivity to either gluten or casein (casein is the primary protein in all dairy products), or both gluten and casein. In fact, lower back pain, along with bloating, are usually the first symptoms that I notice if my diet becomes accidentally contaminated with gluten or casein.
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.
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Area51Flyer
- Posts: 3
- Joined: Wed Aug 12, 2015 10:37 pm
- Location: LAS VEGAS NV
Hi everyone, I'm new and happy I found this forum!
I was diagnosed with LC in 2009, Dr did a colonoscopy and said it was mild, had me going to Dr visits a lot and did nothing. I was involuntary laid off my job and could not keep my insurance, so I did not go back and just lived with my LC.
I just recently got my insurance back! I have a GI Dr. Appt next week, since it's been years gone by, what should I ask the doctor, do you have a list of tests? Etc.. I want to be extra prepared and more assertive this time. Thank you in advance!
Carol
Hi Carol,
Welcome to our Internet family. Unless you have better luck than most of us, trying to direct the way most GI specialists choose to treat this disease is a lot like trying to herd cats (unless they happen to actually understand this disease, and that is still somewhat uncommon). Most of them have their own standard plan, and like to stick with it.
Most of us are vitamin D deficient, and MC depletes vitamin D, so testing your vitamin D level is very important. As long as you have been reacting, you may also be low on vitamin B-12 by now, so it might be a good idea to test for that.
If you are willing to change your diet to stop the inflammation so that your intestines can begin to heal, the only test that we have found to be useful for determining our food sensitivities is a panel of stool tests offered by EnteroLab, in Dallas, Texas. The blood tests that most doctors want to order for food sensitivities are pretty much worthless for discovering food sensitivities. But unfortunately most GI docs don't believe in stool testing for food sensitivities, so I would be surprised if yours will order the tests needed. If she or he is willing to order the EnteroLab tests, then you have found a winner who may actually understand how to treat this disease. You can order the tests yourself, direct from the lab, but your insurance is much more likely to pay on the tests if a doctor orders them.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. Unless you have better luck than most of us, trying to direct the way most GI specialists choose to treat this disease is a lot like trying to herd cats (unless they happen to actually understand this disease, and that is still somewhat uncommon). Most of them have their own standard plan, and like to stick with it.
Most of us are vitamin D deficient, and MC depletes vitamin D, so testing your vitamin D level is very important. As long as you have been reacting, you may also be low on vitamin B-12 by now, so it might be a good idea to test for that.
If you are willing to change your diet to stop the inflammation so that your intestines can begin to heal, the only test that we have found to be useful for determining our food sensitivities is a panel of stool tests offered by EnteroLab, in Dallas, Texas. The blood tests that most doctors want to order for food sensitivities are pretty much worthless for discovering food sensitivities. But unfortunately most GI docs don't believe in stool testing for food sensitivities, so I would be surprised if yours will order the tests needed. If she or he is willing to order the EnteroLab tests, then you have found a winner who may actually understand how to treat this disease. You can order the tests yourself, direct from the lab, but your insurance is much more likely to pay on the tests if a doctor orders them.
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.
Most members here order the combination of Panels A1 + C1 because the discounted combination price provides the most bang for our buck, and they cover the most common food sensitivities associated with MC. The most important tests are those covered by the A1 panel, because those sensitivities are very common, and they are almost always permanent (with the possible exception of eggs for some of us). The C1 panel covers 11 additional foods that are also common problems, but their effects are not as catastrophic, and after we are in remission long enough, many of us can add many of these foods back into our diet, depending on how the test results are ranked.
Tex
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.
If you would like to see some examples of test results for some of us, you can see some examples at the following links:
Food Sensitivity Test Results For Names A–J
Food Sensitivity Test Results For Names K–Z
Of course every set of test results comes with a personalized sheet of explanations and interpretation of results by Dr. Fine, but most of us here can also offer some insight on the test results, based on our accumulated experience with them.
Tex
Food Sensitivity Test Results For Names A–J
Food Sensitivity Test Results For Names K–Z
Of course every set of test results comes with a personalized sheet of explanations and interpretation of results by Dr. Fine, but most of us here can also offer some insight on the test results, based on our accumulated experience with 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.
Follow Up Endoscopy/Colonoscopy
Hi Tex,
I had a follow up endoscopy/colonoscopy today. It's been seven years since I had both tests. My GI doc took biopsy samples to check my CC that was diagnosed seven years ago. He also informed me today that I have diverticulosis. Is it common to have both CC and diverticulosis? Does the diverticulosis complicate the CC situation? Any info will be greatly appreciated.
Thanks very much.
I had a follow up endoscopy/colonoscopy today. It's been seven years since I had both tests. My GI doc took biopsy samples to check my CC that was diagnosed seven years ago. He also informed me today that I have diverticulosis. Is it common to have both CC and diverticulosis? Does the diverticulosis complicate the CC situation? Any info will be greatly appreciated.
Thanks very much.
That's a very good question. I also had diverticulosis, which in my case frequently caused diverticulitis, but to be honest, I really couldn't tell which was causing all the symptoms. I say I "had" diverticulosis because a little over 5 years ago my colon had to be removed because of an inherited issue that had nothing to do with MC, and probably nothing to do with diverticulitis, but that got rid of my diverticulitis problems. (It did not cure my MC however, contrary to what most GI docs claim).
In my case, I suppose it might have made my symptoms worse, because diverticulitis is caused by the same type of inflammation that is found with both LC and CC (T-cell infiltration into the lining of the colon), but as I said, I really couldn't tell which problem was causing the symptoms. Diverticulosis is very common after the age of about 40, but most people never seem to have any problems from it. But as common as diverticulosis is, I would guess that most people who have MC probably also have diverticulosis, simply because it's such a common condition.
In most cases, MC does not cause fever during a reaction. Some of my reactions involved fever, so I'm guessing that diverticulitis was probably involved during those episodes, but that's strictly a guess based on the fact that an acute diverticulitis event does typically involve fever.
Tex
In my case, I suppose it might have made my symptoms worse, because diverticulitis is caused by the same type of inflammation that is found with both LC and CC (T-cell infiltration into the lining of the colon), but as I said, I really couldn't tell which problem was causing the symptoms. Diverticulosis is very common after the age of about 40, but most people never seem to have any problems from it. But as common as diverticulosis is, I would guess that most people who have MC probably also have diverticulosis, simply because it's such a common condition.
In most cases, MC does not cause fever during a reaction. Some of my reactions involved fever, so I'm guessing that diverticulitis was probably involved during those episodes, but that's strictly a guess based on the fact that an acute diverticulitis event does typically involve fever.
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.
Yes, that's an intermediate stage in the development of celiac disease, and it's an example of what gluten does to the villi in the small intestine of someone who has celiac disease, if their diet is somewhat regularly contaminated with small amounts of gluten.
That degree of damage is known in medical circles as a Marsh 3a level of damage, and it's about half way to the amount of damage needed for an official diagnosis of celiac disease.
It's also possible that it could be residual damage remaining because of insufficient time for complete healing during recovery. Depending on the age of the patient, it can take up to 5 years for small intestinal damage caused by gluten to heal completely after gluten is withdrawn from the diet, and in some cases the residual damage may even be permanent. Kids can heal in a year or less, but the older we are, the longer it takes for gluten damage to heal.
I'm guessing that in your case, your small intestine just hasn't had sufficient time to heal.
You're very welcome,
Tex
That degree of damage is known in medical circles as a Marsh 3a level of damage, and it's about half way to the amount of damage needed for an official diagnosis of celiac disease.
It's also possible that it could be residual damage remaining because of insufficient time for complete healing during recovery. Depending on the age of the patient, it can take up to 5 years for small intestinal damage caused by gluten to heal completely after gluten is withdrawn from the diet, and in some cases the residual damage may even be permanent. Kids can heal in a year or less, but the older we are, the longer it takes for gluten damage to heal.
I'm guessing that in your case, your small intestine just hasn't had sufficient time to heal.
You're very welcome,
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.
Thanks so much Tex, you are a wealth of knowledge. It's a shame that most of the GI docs out there are so in the dark when it comes to CC.
I am 64 and have been gluten free for several years now. I have very little D, but considerable stomach discomfort, gas and bloating. I also wanted to ask you if there are any advantages/disadvantages when it comes to taking supplements such as DGL, Slippery Elm Bark, and Pepzin GI.
Again, thanks very much for your help and all you do for the MC community.
Joe
I am 64 and have been gluten free for several years now. I have very little D, but considerable stomach discomfort, gas and bloating. I also wanted to ask you if there are any advantages/disadvantages when it comes to taking supplements such as DGL, Slippery Elm Bark, and Pepzin GI.
Again, thanks very much for your help and all you do for the MC community.
Joe
Joe,
One of the reasons why GI docs remain in the dark (intentionally or otherwise) on so many issues is because they are forced by law, convention, rules, and regulations (not to mention fear of lawsuits), to more or less play by the rule book that they have been issued by the state issuing their license, and the hospital or clinic they work for or with. Consequently, many of them check any innovation and open-mindedness that they might otherwise have, at the door, when they go to work each day.
Most GI docs should be well aware of what that particular biopsy marker means, but they may be reluctant to bring it up because that would surely prompt questions from the patient, leading to more time spent on the appointment, and time is money to a busy specialist (and most other folks, for that matter). So they don't bring it up, because it probably won't matter for that particular case. If it were important to the outcome of treating the patient, it would be their implied duty to address it.
If you have been following a restricted diet for several years, and you are still having those symptoms (those are signs of poor digestion, probably resulting from continued inflammation), then either you have 1 or more additional food sensitivity/s that need/s to be avoided, or your diet is somehow being cross-contaminated by trace amounts of gluten or some other food that causes your immune system to produce antibodies. For some of us, the problem turns out to be some of the inactive ingredients in 1 or more of our supplements, or personal care products (such as toothpaste), or one of the medications that we are taking.
Personally, I've never used either of the items that you mentioned, but some members here have posted that they felt that they have benefited from taking them. Just be careful, because like any med, they can have side effects, and they can interact with other medications in certain situations.
You're very welcome.
Tex
One of the reasons why GI docs remain in the dark (intentionally or otherwise) on so many issues is because they are forced by law, convention, rules, and regulations (not to mention fear of lawsuits), to more or less play by the rule book that they have been issued by the state issuing their license, and the hospital or clinic they work for or with. Consequently, many of them check any innovation and open-mindedness that they might otherwise have, at the door, when they go to work each day.
Most GI docs should be well aware of what that particular biopsy marker means, but they may be reluctant to bring it up because that would surely prompt questions from the patient, leading to more time spent on the appointment, and time is money to a busy specialist (and most other folks, for that matter). So they don't bring it up, because it probably won't matter for that particular case. If it were important to the outcome of treating the patient, it would be their implied duty to address it.
If you have been following a restricted diet for several years, and you are still having those symptoms (those are signs of poor digestion, probably resulting from continued inflammation), then either you have 1 or more additional food sensitivity/s that need/s to be avoided, or your diet is somehow being cross-contaminated by trace amounts of gluten or some other food that causes your immune system to produce antibodies. For some of us, the problem turns out to be some of the inactive ingredients in 1 or more of our supplements, or personal care products (such as toothpaste), or one of the medications that we are taking.
Personally, I've never used either of the items that you mentioned, but some members here have posted that they felt that they have benefited from taking them. Just be careful, because like any med, they can have side effects, and they can interact with other medications in certain situations.
You're very welcome.
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.