Hello All,
I haven't written in a while. I have been on a gluten free diet for a few months now and am on my 4th gastro doc. I am still being told that I have IBS even though my biopsy on my colonoscopy showed lymphocytic colitis. I have been told to use a fiber supplement which would firm up my stools along with a probiotic. In addition, I was prescribed Lexapro as he feels that this is mostly stress/anxiety related. So I started taking all these meds, and had a very bad case of diarrhea along with some major incontinence issues. I didn't know which pill was causing it, so I discontinued the probiotic and fiber supplement, the supplement was giving me alot of bloating/gas symptoms. So I'm into the meds for a month and am still going my normal 4-5 times every morning. My gynecologist is very concerned with my weight loss - 15 pounds in a year - Im currently only 98 pounds. I eat a good amount of food each day, but cannot gain a pound. I realize that I have to heal somewhat before I can gain weight - but what I don't understand is how all these tests come back normal. How could I not have malabsorption issues when I cannot put weight on? I have had stool tests for malabsorption, parasites, etc, and all came back normal.
I've been getting very depressed because of all the comments I receive at work - "why can't you put on weight?", "do you really think eating gluten free will make a difference", "you're obviously not eating enough!" I'm tired of defending the way my body looks at the moment - they don't understand that I have a chronic illness. I'm not getting skinnier because I'm dieting!
I'm just very afraid of the weight loss - it scares me, especially because I am eating enough. I'm very careful with what I eat - is it normal to take this long to heal?
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Gabes-Apg
- Emperor Penguin
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- Location: Hunter Valley NSW Australia
Barbie,
Sorry you are still struggling
for some yes it can take this long to heal, especially when healing is interrupted by wrong supplements, and/or too much fibre.
Mainstream tests do not identify majority the type of issues that most MC'ers have.
Healing - takes low inflammation high animal protein approach.
Weight gain - will come when gut is better healed/not triggered.
Most of all it takes time, for most 6-9 months minimum, for some 12-15 months.
Sorry you are still struggling
for some yes it can take this long to heal, especially when healing is interrupted by wrong supplements, and/or too much fibre.
Mainstream tests do not identify majority the type of issues that most MC'ers have.
Healing - takes low inflammation high animal protein approach.
Weight gain - will come when gut is better healed/not triggered.
Most of all it takes time, for most 6-9 months minimum, for some 12-15 months.
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 assume you're also avoiding all dairy products and soy. Some people are lucky, and they reach remission relatively quickly. But it can take as long as a year or more for a few of us. You have to check supplements very carefully, and avoid most of them. They can easily prevent you from reaching remission.
This is just my opinion — I haven't seen any published medical research on the topic (though there might be some that I've overlooked), but in my opinion the reason why some of us lose so much weight and can't regain it for so long is because we have steatorrhea and/or bile acid malabsorption (BAM), meaning that we cannot absorb most of the fat in our food. So we lose our most useful calories. The reason why budesonide causes weight gain for some people is because research shows that cortisol regulates bile absorption. Therefore it allows patients who have BAM to absorb the fat that is entrapped in the bile). At the other extreme, bile acid sequestrants waste fat (they send it down the toilet with the bile), preventing us from absorbing any of it.
Tex
I assume you're also avoiding all dairy products and soy. Some people are lucky, and they reach remission relatively quickly. But it can take as long as a year or more for a few of us. You have to check supplements very carefully, and avoid most of them. They can easily prevent you from reaching remission.
This is just my opinion — I haven't seen any published medical research on the topic (though there might be some that I've overlooked), but in my opinion the reason why some of us lose so much weight and can't regain it for so long is because we have steatorrhea and/or bile acid malabsorption (BAM), meaning that we cannot absorb most of the fat in our food. So we lose our most useful calories. The reason why budesonide causes weight gain for some people is because research shows that cortisol regulates bile absorption. Therefore it allows patients who have BAM to absorb the fat that is entrapped in the bile). At the other extreme, bile acid sequestrants waste fat (they send it down the toilet with the bile), preventing us from absorbing any of it.
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 BarbieAnn,
I’m sorry you are still dealing with this and with a doc who is way off track. I agree with Tex and Gabes- until you have healed more you won’t be able to absorb the nutrients you are taking in. At least that was my experience. My malabsorption tests were also normal while I was dropping 25 pounds in about 10 weeks and lost a good portion of my muscle mass. I felt like I was on the edge of death and all my blood tests would come back just fine. It was baffling. I found the weight loss also to be scary. Budesonide did slow down my weight loss, so it was helpful in that respect. I really didn’t put weight back on until I was close to remission, 2+ years after all that weight loss. Healing is a very slow process. If I had taken what your doc recommended it would have created greater problems for me, especially any extra fiber. That would be like sandpaper on an already inflamed intestine. I think you were wise to abandon the fiber and probiotics.
As for questions like “do you really think eating gluten free is going to make a difference?” Hell yes it will ! It will be the difference between staying sick and getting to remission. Those of us who have reached remission and healing through diet are living proof.
You said it best when you said ‘I’m dealing with a chronic illness’. Getting better is a slow uphill climb. You will get there. It’s just that the pace of healing is slow and that’s ‘normal’.
Carol
I’m sorry you are still dealing with this and with a doc who is way off track. I agree with Tex and Gabes- until you have healed more you won’t be able to absorb the nutrients you are taking in. At least that was my experience. My malabsorption tests were also normal while I was dropping 25 pounds in about 10 weeks and lost a good portion of my muscle mass. I felt like I was on the edge of death and all my blood tests would come back just fine. It was baffling. I found the weight loss also to be scary. Budesonide did slow down my weight loss, so it was helpful in that respect. I really didn’t put weight back on until I was close to remission, 2+ years after all that weight loss. Healing is a very slow process. If I had taken what your doc recommended it would have created greater problems for me, especially any extra fiber. That would be like sandpaper on an already inflamed intestine. I think you were wise to abandon the fiber and probiotics.
As for questions like “do you really think eating gluten free is going to make a difference?” Hell yes it will ! It will be the difference between staying sick and getting to remission. Those of us who have reached remission and healing through diet are living proof.
You said it best when you said ‘I’m dealing with a chronic illness’. Getting better is a slow uphill climb. You will get there. It’s just that the pace of healing is slow and that’s ‘normal’.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Thank you all for your answers - I really appreciate your feedback.
Yes, I have eliminated all dairy and soy as well. It puts my mind at ease to know that the healing process does take time.
Tex - is there any test for the BAM - or would that have been part of my stool tests? I know there must be something going on with my body not absorbing nutrients, otherwise I would be gaining weight. And what about SIBO - should I be tested for that as well?
I see alot of recipes that contain almond or coconut flour - are these safe to eat?
Yes, I have eliminated all dairy and soy as well. It puts my mind at ease to know that the healing process does take time.
Tex - is there any test for the BAM - or would that have been part of my stool tests? I know there must be something going on with my body not absorbing nutrients, otherwise I would be gaining weight. And what about SIBO - should I be tested for that as well?
I see alot of recipes that contain almond or coconut flour - are these safe to eat?
As far as I know, there is no medical test for BAM, but research shows that BAM is present in 60 % of LC cases and 44 % of CC cases (Ung et al, 2000, Fernandez-Banares et al., 2001).194, 195
Here are those references:
194. Ung, K., Gillberg, R., Kilander, A., & Abrahamsson, H. (2000). Role of bile acids and bile acid binding agents in patients with collagenous colitis. Gut, 46(2), 170–175. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1727822/
195. Fernandez-Bañares, F., Esteve, M., Salas, A., Forné, T. M., Espinos, J. C., Martín-Comin, J., & Viver, J. M. (2001). Bile acid malabsorption in microscopic colitis and in previously unexplained functional chronic diarrhea. Digestive Diseases and Sciences, 46(10), 2231–2238. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/11680602
That doesn't mean that treating BAM will bring remission in 60 % of LC cases and 44 % of CC cases, however. Out in the real world, treating BAM brings remission only in a relatively small percentage of cases, but in a few cases that have been unresponsive to other treatments, the diarrhea may stop if a bile acid sequestrant is added to the treatment program. This will not help with weight however, since as I pointed out above, the bile acid sequestrant will waste the fat along with the bile.
To save typing, here's a quote of my opinion of "SIBO" taken from pages 177–179 of Understanding Microscopic Colitis:
202. Dukowicz, A. C., Lacy, B. E., & Levine, G. M. (2007). Small intestinal bacterial overgrowth. Gastroenterology & Hepatology, 3(2), 112–122. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099351/
Regarding your question about recipes using almond and coconut flours — yes, those are safe for most of us. Only a very small percentage of patients would have any problems with them.
I hope this helps.
Tex
Here are those references:
194. Ung, K., Gillberg, R., Kilander, A., & Abrahamsson, H. (2000). Role of bile acids and bile acid binding agents in patients with collagenous colitis. Gut, 46(2), 170–175. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1727822/
195. Fernandez-Bañares, F., Esteve, M., Salas, A., Forné, T. M., Espinos, J. C., Martín-Comin, J., & Viver, J. M. (2001). Bile acid malabsorption in microscopic colitis and in previously unexplained functional chronic diarrhea. Digestive Diseases and Sciences, 46(10), 2231–2238. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/11680602
That doesn't mean that treating BAM will bring remission in 60 % of LC cases and 44 % of CC cases, however. Out in the real world, treating BAM brings remission only in a relatively small percentage of cases, but in a few cases that have been unresponsive to other treatments, the diarrhea may stop if a bile acid sequestrant is added to the treatment program. This will not help with weight however, since as I pointed out above, the bile acid sequestrant will waste the fat along with the bile.
To save typing, here's a quote of my opinion of "SIBO" taken from pages 177–179 of Understanding Microscopic Colitis:
And here is reference 202 from that quote:SIBO is defined as an abnormally high number of bacteria in the small intestine (Dukowicz, Lacy, & Levine, 2007).202 It's frequently claimed to be the cause of chronic diarrhea and malabsorption, particularly by naturopathic practitioners. But in the real world, a shift in the balance among bacterial species is frequently considered to be SIBO. The reality is that species of bacteria and balances among those species in our intestines tend to change as our diet is changed and as our digestive abilities changes during the course of the disease.
Poor digestion leads to increases in population levels of certain opportunistic species that can benefit from the fermentation of partially-digested food. As the gut heals, and digestion improves, those species are “starved out” and replaced by some of the species of bacteria that were there originally. Likewise, as we change our diet to eat more protein and less carbohydrates, bacterial species that thrive on the altered diet tend to crowd out species that can't compete when fed that particular food. And as we heal, and gradually go back to eating some of the foods that were originally cut out of our diet, the bacterial balance among the various species of gut bacteria will shift again, to reflect the new diet.
Naturopaths often recommend testing for SIBO. And of course the testing almost always finds “SIBO” in patients with active microscopic colitis because SIBO has been found to be associated with many diseases.ii So they recommend treating the “SIBO”. But just because “SIBO” happens to be associated with a disease does not mean that it caused the disease. Fire trucks can be found near fires, but they are virtually never the cause of the fire. Is it really SIBO, or just a natural shift in the balances among the various bacterial species in response to diet changes or to loss of digestive efficiency as a result of the disease?
Digestive diseases create opportunities for bacteria, so they can hardly be blamed for for taking advantage of the situation. Logic suggests that SIBO is not the likely cause of all of the diseases attributed to it. It's much more likely that those diseases cause SIBO. Virtually every one of the diseases associated with SIBO is related to, or caused by a digestive system disorder. Digestive diseases naturally tend to cause poor digestion and poor digestion causes changes in gut bacteria populations as opportunistic bacteria take advantage of undigested or poorly-digested food to establish colonies that thrive under such conditions. So it's much more likely that digestive system problems cause SIBO than SIBO causes digestive system diseases. Consequently, there's little point in treating SIBO because that is simply treating a symptom— it's not treating the cause of the symptom. When the cause of the symptom is resolved, then the symptom will automatically disappear.
As the inflammation decreases, in response to proper diet changes, bacterial balances tend to realign to a more normal pattern in most patients, regardless of whether or not “SIBO” is treated. The point is, what may be interpreted as SIBO will usually be corrected automatically without any intervention, as the microscopic colitis is brought under control by stopping the inflammation with diet changes that avoid the inflammatory foods.
So in most cases, the “SIBO” tends to be a symptom of MC, rather than the MC being a symptom of SIBO. Except for truly pathogenic populations of certain species, treating a gut bacteria balance shift is usually pointless, because after the treatment, the balance among the various species populating the intestines is going to be determined by diet and the effectiveness of the digestive system at that point in time. So the population balance will tend to sort out according to those criteria after a few weeks. That said, if a true infection exists, it should be treated. Normally however, treating “SIBO” associated with MC appears to be a waste of time and money for many patients.
202. Dukowicz, A. C., Lacy, B. E., & Levine, G. M. (2007). Small intestinal bacterial overgrowth. Gastroenterology & Hepatology, 3(2), 112–122. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099351/
Regarding your question about recipes using almond and coconut flours — yes, those are safe for most of us. Only a very small percentage of patients would have any problems with them.
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.
If you are still having D 4 times in the a.m. I would probably try the almond flour and coconut flours after you are in remission.
Have you seen Gabes Level I and Level II eating regimens? They are a good plan.
It took me about 6 months for my gut to settle and 2 years to fully heal.
Eat all day with your safe foods even if you are not hungry. If you can tolerate them eat bananas, rice, potato, bacon etc
but Gabes Level I and Level II are very key early on.
I find I kick into remission faster when I eliminate supplements. I slowly add back supplements once I am in remission. Oral supplements are problematic for me when I am not in remission.
Some of my worst stress was from coworkers and friends. Friends wanted me to fly from Florida to Mayo Clinic in Rochester
for some "magical solution." THis seemed ridiculous to me but it caused me a lot of stress. My boss insisted I get on meds--
again, major stress.
If you look at my sign on I've had this disease for 8 years. YES, TO GO INTO REMISSION YOU MUST GET AND STAY GF!
My life is good. I just returned from a week long cruise from Athens Greece to VEnice Italy with NO PROBLEMS.
Have you seen Gabes Level I and Level II eating regimens? They are a good plan.
It took me about 6 months for my gut to settle and 2 years to fully heal.
Eat all day with your safe foods even if you are not hungry. If you can tolerate them eat bananas, rice, potato, bacon etc
but Gabes Level I and Level II are very key early on.
I find I kick into remission faster when I eliminate supplements. I slowly add back supplements once I am in remission. Oral supplements are problematic for me when I am not in remission.
Some of my worst stress was from coworkers and friends. Friends wanted me to fly from Florida to Mayo Clinic in Rochester
for some "magical solution." THis seemed ridiculous to me but it caused me a lot of stress. My boss insisted I get on meds--
again, major stress.
If you look at my sign on I've had this disease for 8 years. YES, TO GO INTO REMISSION YOU MUST GET AND STAY GF!
My life is good. I just returned from a week long cruise from Athens Greece to VEnice Italy with NO PROBLEMS.
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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 Brandy's reply above.
Any time I am experiencing stress, whether it be physical and or mental and or emotional stress or if I am not well, I revert back to the stage 1 eating plan
The stage 2 eating plan is my everyday eating plan 90% -95% of the time.
Being well enough to work (ie minimal symptoms) is more important than variety in my eating plan.
Any time I am experiencing stress, whether it be physical and or mental and or emotional stress or if I am not well, I revert back to the stage 1 eating plan
The stage 2 eating plan is my everyday eating plan 90% -95% of the time.
Being well enough to work (ie minimal symptoms) is more important than variety in my eating plan.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
It is quite embarrassing and I was wondering if any of you had this issue and if you took anything that helpedBarbieAnn, I don't have much to add but to answer your question about flours. We all react differently but if I were you I would hold off on baked goods until your gut is healed. I'm 5 years post-diagnosis and I just baked zucchini bread with almond flour and my stomach feels a bit off. I don't bake often but thought I would try this recipe because zucchini is in season. I also had four smelling gas and stools until my gut was healed. I was embarrassed to use the ladies room at work.
Brandy, that is awesome about the cruise! So happy you didn't have any issues!
Brandy, that is awesome about the cruise! So happy you didn't have any issues!
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
BarbieAnn,
That's very good advice from Marcia (and Brandy) about delaying any baking until you are in stable remission. Most of us can tolerate those flours OK, but baked cakes, cookies, pies, etc. don't usually work very well for us while we are still reacting. We are much less likely to have any problems with baked goods after we have been in remission for a while.
As Marcia pointed out, foul-smelling gas and bloating are very common with MC because of the poor digestion caused by the disease. As your digestion begins to improve, those problems will fade away.
Tex
That's very good advice from Marcia (and Brandy) about delaying any baking until you are in stable remission. Most of us can tolerate those flours OK, but baked cakes, cookies, pies, etc. don't usually work very well for us while we are still reacting. We are much less likely to have any problems with baked goods after we have been in remission for a while.
As Marcia pointed out, foul-smelling gas and bloating are very common with MC because of the poor digestion caused by the disease. As your digestion begins to improve, those problems will fade away.
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.
Tex -
Just wanted your opinion on one other thing. Is it possible that the Lexapro is causing my bowel incontinence? Since I've been on it, my issues seem to be a bit worse. I was told that I need to stay on it awhile and suffer through the symptoms as my body will adjust to the meds and I should feel less anxiety. Last night I had a horrible night, with night sweats, anxiety and having to run to the bathroom which I rarely do at 2am in the morning!
Just wanted your opinion on one other thing. Is it possible that the Lexapro is causing my bowel incontinence? Since I've been on it, my issues seem to be a bit worse. I was told that I need to stay on it awhile and suffer through the symptoms as my body will adjust to the meds and I should feel less anxiety. Last night I had a horrible night, with night sweats, anxiety and having to run to the bathroom which I rarely do at 2am in the morning!
Yes, it's very possible. SSRIs are blamed by many patients as a cause of their MC. But if you're having night sweats because of it, those are allergic symptoms. That advice — "that I need to stay on it awhile and suffer through the symptoms as my body will adjust to the meds and I should feel less anxiety" is BS. Your doctor should know better. I have a very low opinion of drugs that come with the claim that you should put up with worse symptoms so that you can feel better later. If you are having allergic symptoms, that drug needs to go.barbieAnn wrote:Tex -
Just wanted your opinion on one other thing. Is it possible that the Lexapro is causing my bowel incontinence? Since I've been on it, my issues seem to be a bit worse. I was told that I need to stay on it awhile and suffer through the symptoms as my body will adjust to the meds and I should feel less anxiety. Last night I had a horrible night, with night sweats, anxiety and having to run to the bathroom which I rarely do at 2am in the morning!
Anxiety and depression are symptoms of magnesium deficiency. Anxiety and depression are common symptoms of MC because we are all magnesium deficient as a result of the disease. Magnesium treats depression and anxiety — that has been demonstrated in clinical trials. But doctors continue to promote anti-anxiety and anti-depression drugs because it's a multi-billion dollar industry (and there's no money in it for them if they recommend magnesium instead of prescribing expensive drugs).
Several years ago, I had an allergic reaction to Bactrim, and it depleted what was left of my already too small magnesium reserves. I had exactly the same kind of horrible nights with night sweats, anxiety, and running to the bathroom that you describe. I almost felt as though I were having panic attacks every night. And it went on and on, night after night. None of my doctors had a clue as to what was causing my symptoms.
Magnesium deficiency isn't even on their radar. Once I figured out that the problem was caused by magnesium deficiency, and I doubled my magnesium intake, the symptoms all disappeared, virtually overnight.I would take about 300–400 mg of oral magnesium glycinate and liberally use magnesium lotion or oil on your legs, arms, belly, or wherever you prefer to put it, and/or soak your feet in Epsom salt, or add Epsom salt to your bath water. You should be much improved by tomorrow, and you should be completely free of those symptoms in a few days.
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 Tex -
I am going to call my doctor today and tell him about the incontinence and that I am going to wean myself off of the Lexipro. My incontinence was so bad this morning - usually I'm able to make it to the bathroom with just a little leakage. This was a full on bowel movement! I just wanted to know if the incontinence usually goes along with the MC - even without taking SSRI's because I have had this as a symptom even without the drugs. It just seems like with me, whatever drug I take, makes the incontinence worse.
Is there any particular brand of magnesium that you would suggest? I want to make sure I don't take too much, as I've heard it can cause diarrhea - also - I know I've asked you this before - but is there a blood test to show my mag levels?
Thank you so much Tex!
I am going to call my doctor today and tell him about the incontinence and that I am going to wean myself off of the Lexipro. My incontinence was so bad this morning - usually I'm able to make it to the bathroom with just a little leakage. This was a full on bowel movement! I just wanted to know if the incontinence usually goes along with the MC - even without taking SSRI's because I have had this as a symptom even without the drugs. It just seems like with me, whatever drug I take, makes the incontinence worse.
Is there any particular brand of magnesium that you would suggest? I want to make sure I don't take too much, as I've heard it can cause diarrhea - also - I know I've asked you this before - but is there a blood test to show my mag levels?
Thank you so much Tex!
I believe that viewpoint is correct. The MC causes the incontinence, but when the MC is caused by a drug, continuing to take the drug obviously makes the reaction worse. Though it is somewhat common, only in the worst cases involve incontinence.barbieAnn wrote:It just seems like with me, whatever drug I take, makes the incontinence worse.
Doctor's Best band of chelated magnesium (magnesium glycinate) seems to work well for most of us. It contains 100 mg of magnesium per tablet. I would initially try 200–300 mg per day (take one tablet with or after each meal). If you are concerned about it causing D, use topically-applied magnesium, in the form of magnesium oil, or lotion. But it takes a lot of topical magnesium to provide as much magnesium as oral tablets.barbieAnn wrote:Is there any particular brand of magnesium that you would suggest? I want to make sure I don't take too much, as I've heard it can cause diarrhea - also - I know I've asked you this before - but is there a blood test to show my mag levels?
The serum magnesium test that doctors prefer to order is so inaccurate as to be virtually useless. The Red Blood Cell (RBC) magnesium test provides a much more accurate test result.
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.