Thank you for this site!
For the past few years, I suspected I had IBS...but on March 10th I was nauseous all day and felt like I needed to throw up, but never did...then BOOM on the 11th I started having D and it has not stopped.
I saw doc on 4/1 and they did blood work...all was normal. I has colonoscopy on 5/2 and the GI doc recommended: 1) high fiber diet indefinitely 2) Metamucil (2 capsules 3x day) indefinitely 3) Imodium (1 caplet 2 x day) indefinitely....then when results came back he also wanted to put me on Entocort. I did not go on Entocort because I wanted to do some research.
After doing research, I went back to my regular doc and asked for thyroid test and stool sampling for C diff and E. coli - all came back showing nothing wrong and he said my sedimentation rate was only 4, so it is unlikely that I have any other autoimmune disorder.
I hate taking drugs, so I decided to see a retired nurse practitioner (7/1) who believes in natural remedies and diet. She also had me do a stool / saliva sample, but it was not through the lab mentioned here (which I didn't know about).
The results showed:
Light Geotrichum candidu
*Heavy growth mixed Gram negative rods/flora
*Light growth mixed Gram positive rods/flora
(*The mixed flora consists predominantly of: Nontoxigenic E. coli - Heavy growth and Pseudomonas aeruginosa - Heavy growth)
No Salmonella, Shigella, or E coli )157 isolated - No Yersinia, Vibrio, or Aeromonas isolated - No Proteus isolated
The results did show Total Intestinal SIgA (Stool) at 59 (which she said indicated Low Immune Function)
I tested positive for Milk (Casein) Ab. SIgA (Saliva)
The test for Gliadin Ab, SIgA (Saliva) was 12 (Reference Values show Borderline: 13-15 U/ml --- she said I would be considered gluten sensitive)
The test showed negative for Soy and Egg. All the other stuff they tested for was either "negative" or "not detected"...the Chymotrypsin (Stool) was good.
I have Fibromyalgia, dry eye syndrome and back issues, but overall I felt like I was managing them pretty well. This MC is of another breed and my life has not been the same since 3/10.
The NP has me on supplements to help with inflammation and to kill off yeast/fungi. The diet she has me on is what I would consider pretty much GF with only Stevia or honey as sweeteners. I have been doing this for approx. 3 weeks with very little cheating and am to see her again in a couple of weeks. She said if this doesn't help, she would recommend testing to see exactly which foods I have an issue with (which means for $$$).
Bottom line....I have zero energy and my D varies in frequency....but still very much D. Does anyone have any words of wisdom as I pray for remission.
Thank you in advance for trying to help me!
Newbie
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Terre,
Welcome to our internet family. It sounds as though your situation is sort of similar to what many/most of us are facing when we begin our journey back to health. You seem to be heading in the right direction, and with a bit of fine tuning, you should be able to get your life back.
I'm not familiar with the testing that you had, but it sounds as though those tests are designed to detect food allergies, rather than digestive system (intestinal) sensitivities. Even so, the results seem to have been useful for providing some guidance for your diet changes.
The main thing to remember is that if we are sensitive to gluten, being "pretty much GF" will provide little benefit (if any). With the GF diet, anything less than 100 % compliance is not likely bring remission, and even then it takes much longer than most people realize for intestinal healing to progress to the point where our digestive system will begin to function properly again. But with dedication, patience, and perseverance, we're able to bring the disease under control.
Fatigue and even brain fog are very common symptoms of MC, but as we begin to get our GI symptoms under control, our energy level, and brain fog slowly fade away.
Again, welcome aboard and please feel free to ask anything.
Tex
Welcome to our internet family. It sounds as though your situation is sort of similar to what many/most of us are facing when we begin our journey back to health. You seem to be heading in the right direction, and with a bit of fine tuning, you should be able to get your life back.
I'm not familiar with the testing that you had, but it sounds as though those tests are designed to detect food allergies, rather than digestive system (intestinal) sensitivities. Even so, the results seem to have been useful for providing some guidance for your diet changes.
The main thing to remember is that if we are sensitive to gluten, being "pretty much GF" will provide little benefit (if any). With the GF diet, anything less than 100 % compliance is not likely bring remission, and even then it takes much longer than most people realize for intestinal healing to progress to the point where our digestive system will begin to function properly again. But with dedication, patience, and perseverance, we're able to bring the disease under control.
Fatigue and even brain fog are very common symptoms of MC, but as we begin to get our GI symptoms under control, our energy level, and brain fog slowly fade away.
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.
Tex, thanks for your reply.
I've tried posting a reply three other times, but as I'm typing, my text just disappears?
I just wanted to say that the reason I said "pretty much" GF is because I noticed that other posts said that they were limiting some fruits and the lady helping me says at this time she will allow me to eat all fruit.
I asked if I should purchase GF or Paleo cookbooks to help me and she said she has me eating GF, but it would be fine to purchase Paleo.
I would like your input on Entocort - I do not want to take it, but am I limiting my chance for remission if I don't take it? Also, is there any chance of getting my old life back or will this be my way of life from this point forward? My husband and I love eating out and trying new restaurants and I just hate the thought of not being able to enjoy that....but it is what it is.
Thank you!
I've tried posting a reply three other times, but as I'm typing, my text just disappears?
I just wanted to say that the reason I said "pretty much" GF is because I noticed that other posts said that they were limiting some fruits and the lady helping me says at this time she will allow me to eat all fruit.
I asked if I should purchase GF or Paleo cookbooks to help me and she said she has me eating GF, but it would be fine to purchase Paleo.
I would like your input on Entocort - I do not want to take it, but am I limiting my chance for remission if I don't take it? Also, is there any chance of getting my old life back or will this be my way of life from this point forward? My husband and I love eating out and trying new restaurants and I just hate the thought of not being able to enjoy that....but it is what it is.
Thank you!
TerreFor your GI because he recommended fiber!
#5 Fiber does not help MC.
from Polly Robert M.D. What We Wish Our GI Specialists Knew About MC back cover of Tex's book. I got too many hits when I searched on the PP site.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
A KISS for our GI Docs is the online title for the list
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Terre,
Gluten (as in gluten-free) strictly refers to the gluten found in wheat, rye, barley, and for most of us, oats. Fruit does not contain gluten.
That said, most of us have to avoid most fruits because their high fructose content, and high fiber content can cause problems. While our digestion is compromised, we are usually unable to produce adequate amounts of certain enzymes, and as a result, we have trouble digesting most sugars, especially fructose. That means that it ends up in the colon, being fermented by bacteria, producing gas, bloating, cramping, and D. If you feel that you can't live without fruit, be sure that it is peeled (most of the fiber is in the peel), and thoroughly cooked (overcooked), to make it easier to digest. Even so, many of us can't tolerate even peeled, cooked fruit, and eating it can prevent us from reaching remission. Bananas are the exception — many of us can handle raw bananas, as long as we don't overdo them, and get into trouble with the fiber.
Any vegetables eaten should also be peeled, and overcooked, and the ones utilized should be selected carefully. Most of us are most likely to be able to handle veggies such as squash, carrots, green beans, and maybe broccoli (if the gas is not a problem).
In general, gluten-sensitivity, casein-sensitivity, and soy-sensitivity are permanent, once the genes that predispose to them are triggered, but most other foods can usually eventually be slowly added back into the diet, after our gut heals sufficiently (which often takes anywhere from half a year to a year or more). IOW, we will have to avoid gluten, dairy, and soy for the rest of our lives (provided that we produce antibodies to them), but after we heal, we can resume eating salads, and various fruits and vegetables, including raw fruits and vegetables.
Contrary to conventional thinking, corticosteroids do not promote healing — they actually retard healing. However, they are helpful for masking symptoms while our diet changes allow our intestines to heal. It's the diet that heals the gut, but it takes a while for the diet to take effect, so taking Entocort early on can relieve the symptoms of MC, so that we can go about our daily routine without having to worry about the location of every bathroom in the area. After the diet has had time to work it's "magic", then we can slowly taper off the Entocort and remain in remission by diet alone.
The key is to taper the dosage very slowly (especially the final stages), because budesonide causes a rebound effect if discontinued too abruptly, which can cause a relapse of symptoms. Most GI docs recommend reducing the dosage much too rapidly, and as a result, most of their patients suffer a relapse of symptoms. My theory is that reducing the budesonide dosage too rapidly can trigger the propagation of mast cells at an elevated rate, which leads to an increase in inflammation levels, and that's the cause of MC in the first place.
You don't have to take Entocort in order to control your symptoms. Many of us here (including me) achieved remission by diet alone. We just had to deal with the symptoms a bit longer than the people who took Entocort or some other med while they were waiting for the diet to work.
Tex
Gluten (as in gluten-free) strictly refers to the gluten found in wheat, rye, barley, and for most of us, oats. Fruit does not contain gluten.
That said, most of us have to avoid most fruits because their high fructose content, and high fiber content can cause problems. While our digestion is compromised, we are usually unable to produce adequate amounts of certain enzymes, and as a result, we have trouble digesting most sugars, especially fructose. That means that it ends up in the colon, being fermented by bacteria, producing gas, bloating, cramping, and D. If you feel that you can't live without fruit, be sure that it is peeled (most of the fiber is in the peel), and thoroughly cooked (overcooked), to make it easier to digest. Even so, many of us can't tolerate even peeled, cooked fruit, and eating it can prevent us from reaching remission. Bananas are the exception — many of us can handle raw bananas, as long as we don't overdo them, and get into trouble with the fiber.
Any vegetables eaten should also be peeled, and overcooked, and the ones utilized should be selected carefully. Most of us are most likely to be able to handle veggies such as squash, carrots, green beans, and maybe broccoli (if the gas is not a problem).
In general, gluten-sensitivity, casein-sensitivity, and soy-sensitivity are permanent, once the genes that predispose to them are triggered, but most other foods can usually eventually be slowly added back into the diet, after our gut heals sufficiently (which often takes anywhere from half a year to a year or more). IOW, we will have to avoid gluten, dairy, and soy for the rest of our lives (provided that we produce antibodies to them), but after we heal, we can resume eating salads, and various fruits and vegetables, including raw fruits and vegetables.
Contrary to conventional thinking, corticosteroids do not promote healing — they actually retard healing. However, they are helpful for masking symptoms while our diet changes allow our intestines to heal. It's the diet that heals the gut, but it takes a while for the diet to take effect, so taking Entocort early on can relieve the symptoms of MC, so that we can go about our daily routine without having to worry about the location of every bathroom in the area. After the diet has had time to work it's "magic", then we can slowly taper off the Entocort and remain in remission by diet alone.
The key is to taper the dosage very slowly (especially the final stages), because budesonide causes a rebound effect if discontinued too abruptly, which can cause a relapse of symptoms. Most GI docs recommend reducing the dosage much too rapidly, and as a result, most of their patients suffer a relapse of symptoms. My theory is that reducing the budesonide dosage too rapidly can trigger the propagation of mast cells at an elevated rate, which leads to an increase in inflammation levels, and that's the cause of MC in the first place.
You don't have to take Entocort in order to control your symptoms. Many of us here (including me) achieved remission by diet alone. We just had to deal with the symptoms a bit longer than the people who took Entocort or some other med while they were waiting for the diet to work.
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.
That is my biggest obstacle as well... My husband and I love to try new restaurants. =(
I ordered the test from EnteroLab (sp?) this week. I think if I know for sure what I'm sensitive to I will be better able to be really diligent. The $300 was a hit (no way I could afford the $600 test) but I am anxious to get those results!
I am really hoping for a negative on the casein. I know I am lactose intolerant. But, I can't imagine my life with no cheese ever again...
Were you diagnosed with MC?
I ordered the test from EnteroLab (sp?) this week. I think if I know for sure what I'm sensitive to I will be better able to be really diligent. The $300 was a hit (no way I could afford the $600 test) but I am anxious to get those results!
I am really hoping for a negative on the casein. I know I am lactose intolerant. But, I can't imagine my life with no cheese ever again...
Were you diagnosed with MC?
Yes, I had a colonoscopy in May and it showed both CC and LC....my life has not been the same since 3/10/13 when this all started and it hasn't stopped. This is NOT the way I would choose to lose weight!
I may do the test to determine all I am sensitive to, but at this time I am working with a retired NP who is also a nutritionist and I will see her again in about 2 weeks and will determine the next step.
I'm with you on the casein, but sadly the testing I've already done shows that I am positive for that...so I'm doing the best I can to avoid it, but I'm still having D. I understand that it is in so many products that it is going to be difficult to avoid....but I will try.
I'm so thankful for this wonderful site and I'm going to order Tex's book as soon as I can.
Have a wonderful day!
I may do the test to determine all I am sensitive to, but at this time I am working with a retired NP who is also a nutritionist and I will see her again in about 2 weeks and will determine the next step.
I'm with you on the casein, but sadly the testing I've already done shows that I am positive for that...so I'm doing the best I can to avoid it, but I'm still having D. I understand that it is in so many products that it is going to be difficult to avoid....but I will try.
I'm so thankful for this wonderful site and I'm going to order Tex's book as soon as I can.
Have a wonderful day!
Newbie here
Hi~
I am a 31 yo chick living with MC. After 2 years of a non stop flare that has me in the bathroom up to 20x's a day and has taken me from 123lbs to 99lbs I think I finally found a Dr. that can help me :) my other 2 doctors just weren't cutting it. the first one put me on entocort after my colonoscopy showed microscopic colitis. my MC just laughed at those meds for the next 6 months. it did nothing. after 6 months of being on it and my dopey doctor telling me he wanted to keep me on it for another few months(uh, no thanks!) my boyfriend went online and found a doctor online at Cleveland Clinic who specialized in GI diseases in women. she did a TON of blood work, stool samples and her own colonoscopy which big surprise showed microscopic/lymphocytic colitis(my spelling is not the best sorry)
so she put me on amitriptyline cause my nerves were shot from all the D. i mean i work in an office with 20 other girls. we have one bathroom. just kill me now. i was so stressed out, i feel like poo(ha!) all the time, i never want to go anywhere, no matter what i eat its going right through me. but she didn't really give me any other real meds. just the anti anxiety. kept telling me it was all stress. i finally got really depressed. i just couldn't take living like this anymore. i am in serious pain ALL the time!! its the worst cramping/burning pain ever. i called my PCP and she put me on lexapro and i started looking for another new GI dr. my boyfriend hit the internet again and found my new savior. He reviewed all me records and lab work and immediately started me on Uceris and the climidine(antispasmodic). I just started the Uceris this AM and i'll admit i feel shi**y. headache, dizzy but i'm hopeful. the point of all this blabbering- anyone else on uceris? did it work? side effects? i really like my new doc, i think he can help me but i'm curious if any one on here has taken this stuff.
thank you so much!
this is such a great site :)
oddly comforting to know you aren't suffering alone
I am a 31 yo chick living with MC. After 2 years of a non stop flare that has me in the bathroom up to 20x's a day and has taken me from 123lbs to 99lbs I think I finally found a Dr. that can help me :) my other 2 doctors just weren't cutting it. the first one put me on entocort after my colonoscopy showed microscopic colitis. my MC just laughed at those meds for the next 6 months. it did nothing. after 6 months of being on it and my dopey doctor telling me he wanted to keep me on it for another few months(uh, no thanks!) my boyfriend went online and found a doctor online at Cleveland Clinic who specialized in GI diseases in women. she did a TON of blood work, stool samples and her own colonoscopy which big surprise showed microscopic/lymphocytic colitis(my spelling is not the best sorry)
so she put me on amitriptyline cause my nerves were shot from all the D. i mean i work in an office with 20 other girls. we have one bathroom. just kill me now. i was so stressed out, i feel like poo(ha!) all the time, i never want to go anywhere, no matter what i eat its going right through me. but she didn't really give me any other real meds. just the anti anxiety. kept telling me it was all stress. i finally got really depressed. i just couldn't take living like this anymore. i am in serious pain ALL the time!! its the worst cramping/burning pain ever. i called my PCP and she put me on lexapro and i started looking for another new GI dr. my boyfriend hit the internet again and found my new savior. He reviewed all me records and lab work and immediately started me on Uceris and the climidine(antispasmodic). I just started the Uceris this AM and i'll admit i feel shi**y. headache, dizzy but i'm hopeful. the point of all this blabbering- anyone else on uceris? did it work? side effects? i really like my new doc, i think he can help me but i'm curious if any one on here has taken this stuff.
thank you so much!
this is such a great site :)
oddly comforting to know you aren't suffering alone
Just started Uceris, Clidinium and lexapro.
Hi Jenny,
Welcome to our internet family. I have some bad news for you. None of your GI docs have the foggiest idea how to treat this disease. If you want to get your life back, you will need to do what the rest of us have done, namely, change your diet. Virtually all of us are sensitive to gluten, most of us are also sensitive to casein (the primary protein in all dairy products), and soy, and some have other additional food sensitivities. Most of the damage is done by gluten, and since this is non-celiac gluten sensitivity (in most cases), mainstream doctors have absolutely no way to test for it. Every one of them will make the same mistake — they'll use the celiac blood tests and tell you that you are not sensitive to gluten, but that is absolutely incorrect. The celiac blood tests will only detect most cases of fully-developed celiac disease. They will never detect non-celiac gluten sensitivity, nor will they even detect celiac disease in any stage other than fully-developed. That's why it takes an average of 9.7 years from the first onset of symptoms to get an official diagnosis of celiac disease. Their testing program is a pathetic joke.
The only reliable and accurate tests for food sensitivities are offered by EnteroLab, in Dallas, TX, but most mainstream MDs tend to boycot that lab, because they offer their testing direct to the patient, over the internet, and that upsets most doctors big time (they like to be running the whole show). So because of their hard-headed ignorance, that means that those doctors have no way to test for non-celiac gluten sensitivity, or other food sensitivities that are commonly associated with MC.
Your first GI doc came the closest to offering a treatment, because Entocort will at least mask the symptoms for most patients, though they will relapse when the treatment is discontinued, unless they have removed their food sensitivities from their diet at the start of the program. But as you have discovered, Entocort doesn't work for everyone, and not everyone can tolerate Entocort. That means that diet changes are your only option for long-term relief, unless Uceris happens to work for you, and you don't mind taking that drug for the rest of your life.
Uceris is a new drug, but it was specifically developed to treat ulcerative colitis, so it may not work so well for MC. UC affects the distal end of the colon (the sigmoid colon and the rectum), whereas MC/LC can affect the entire GI tract, but it is typically most concentrated in the ascending (right side) colon, where the Uceris may not affect it.
The bottom line is that the inflammation that causes this disease is perpetuated by food sensitivities that cause autoimmune-like reactions. Anti-inflammatory medications can suppress the inflammation and mask the symptoms, but the only way to stop the inflammation from being continually regenerated is by changing your diet to remove the foods that are causing the problem.
Incidentally, MC is a common term used to describe an entire family of microscopic inflammatory bowel diseases, including LC, CC, and 9 or 10 other less-commonly seen types that most GI docs have never heard of. So your second colonoscopy was a waste of time and money. The treatment is the same for all of them, so it really doesn't matter what you call them — they're all the same basic disease. Also, please be aware that while a few MC patients are helped by anti-depressants, and anti-anxiety medications, that class of drugs causes more cases of MC than they help. There are many other drugs that are known to cause MC, also, including but not limited to antibiotics, NSAIDs, PPIs, SSRIs, SNRIs, statins, bisphosphonates, beta blockers, and others.
Not all of us are sensitive to all of those drugs, obviously, but the problem is that if we happen to be taking one that triggers MC for us, then we will not be able to achieve remission (no matter what we do) until we stop taking that drug (including other drugs in that class).
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. I have some bad news for you. None of your GI docs have the foggiest idea how to treat this disease. If you want to get your life back, you will need to do what the rest of us have done, namely, change your diet. Virtually all of us are sensitive to gluten, most of us are also sensitive to casein (the primary protein in all dairy products), and soy, and some have other additional food sensitivities. Most of the damage is done by gluten, and since this is non-celiac gluten sensitivity (in most cases), mainstream doctors have absolutely no way to test for it. Every one of them will make the same mistake — they'll use the celiac blood tests and tell you that you are not sensitive to gluten, but that is absolutely incorrect. The celiac blood tests will only detect most cases of fully-developed celiac disease. They will never detect non-celiac gluten sensitivity, nor will they even detect celiac disease in any stage other than fully-developed. That's why it takes an average of 9.7 years from the first onset of symptoms to get an official diagnosis of celiac disease. Their testing program is a pathetic joke.
The only reliable and accurate tests for food sensitivities are offered by EnteroLab, in Dallas, TX, but most mainstream MDs tend to boycot that lab, because they offer their testing direct to the patient, over the internet, and that upsets most doctors big time (they like to be running the whole show). So because of their hard-headed ignorance, that means that those doctors have no way to test for non-celiac gluten sensitivity, or other food sensitivities that are commonly associated with MC.
Your first GI doc came the closest to offering a treatment, because Entocort will at least mask the symptoms for most patients, though they will relapse when the treatment is discontinued, unless they have removed their food sensitivities from their diet at the start of the program. But as you have discovered, Entocort doesn't work for everyone, and not everyone can tolerate Entocort. That means that diet changes are your only option for long-term relief, unless Uceris happens to work for you, and you don't mind taking that drug for the rest of your life.
Uceris is a new drug, but it was specifically developed to treat ulcerative colitis, so it may not work so well for MC. UC affects the distal end of the colon (the sigmoid colon and the rectum), whereas MC/LC can affect the entire GI tract, but it is typically most concentrated in the ascending (right side) colon, where the Uceris may not affect it.
The bottom line is that the inflammation that causes this disease is perpetuated by food sensitivities that cause autoimmune-like reactions. Anti-inflammatory medications can suppress the inflammation and mask the symptoms, but the only way to stop the inflammation from being continually regenerated is by changing your diet to remove the foods that are causing the problem.
Incidentally, MC is a common term used to describe an entire family of microscopic inflammatory bowel diseases, including LC, CC, and 9 or 10 other less-commonly seen types that most GI docs have never heard of. So your second colonoscopy was a waste of time and money. The treatment is the same for all of them, so it really doesn't matter what you call them — they're all the same basic disease. Also, please be aware that while a few MC patients are helped by anti-depressants, and anti-anxiety medications, that class of drugs causes more cases of MC than they help. There are many other drugs that are known to cause MC, also, including but not limited to antibiotics, NSAIDs, PPIs, SSRIs, SNRIs, statins, bisphosphonates, beta blockers, and others.
Not all of us are sensitive to all of those drugs, obviously, but the problem is that if we happen to be taking one that triggers MC for us, then we will not be able to achieve remission (no matter what we do) until we stop taking that drug (including other drugs in that class).
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.