Hello,
I was recently diagosed with lymphocytic colitis after months of urgent bowel movements in the morning along with nausea and stomach pain, fatigue etc. I feel absolutely horrible and have been to several doctors already - have had no luck with the medicines prescribed and have received different opinions from each. One of the docs could not understand why I had nausea as he said that is not usually a symptom with MC and believes that I have IBS even though my colonoscopy showed MC. Another doctor had prescribed Budenoside for 3 months and I had to go off of it after 2 weeks because of bad nausea and increased cramping/diarrhea. He told me that if the Budenoside did not work, then I probably have an infection and went on to prescribe me antibiotics which I have not taken. I dont want to take antibiotics if I "probably" have an infection. So now I am on my 3rd doc who is sending me for sonograms and stool sampling tests of which I have completed. They have shown nothing - I have to still go for pelvic sonogram. Does anyone know of a doctor on Long Island New York who understands this disease? I don't know what to do - I can't work while I'm feeling like this - it is debilitating.
Thank you -
Newly Diagnosed Lymphocytic Colitis
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hello BarbieAnn,
Welcome to the forum. Your case sounds typical of MC patients. And your experience with gastroenterologists is common. It's a crying shame the way that GI specialists claim to be "experts" on digestive system diseases when most of them are so confused about microscopic colitis (MC). I would be surprised if you have any luck finding a good physician to treat MC on Long Island. NY is kind of a medical desert when it comes to treating MC. The only recommendation we have for the entire state is:
Dr. Paul Pervil
Gastrointestinal Associates
146A Manetto Hill Rd.
Suite 205
Plainview, NY 11803
(516) 822-4404
https://www.healthcare4ppl.com/physicia ... 99862.html
That doesn't mean that he is the only candidate in the area — it just means that he is the only one who has been recommended by another member here.
If you don't want to use medications, you don't you just treat yourself (like most of us here) and save a pile of money and time and trouble in the process. Medications can only temporarily control MC anyway. The proper way to control MC is to stop eating the foods that are causing your immune system to produce antibodies that cause intestinal inflammation. That will allow your gut to heal and remain in remission as long as you follow the diet.
Again, welcome aboard and please feel free to ask anything.
Tex
Welcome to the forum. Your case sounds typical of MC patients. And your experience with gastroenterologists is common. It's a crying shame the way that GI specialists claim to be "experts" on digestive system diseases when most of them are so confused about microscopic colitis (MC). I would be surprised if you have any luck finding a good physician to treat MC on Long Island. NY is kind of a medical desert when it comes to treating MC. The only recommendation we have for the entire state is:
Dr. Paul Pervil
Gastrointestinal Associates
146A Manetto Hill Rd.
Suite 205
Plainview, NY 11803
(516) 822-4404
https://www.healthcare4ppl.com/physicia ... 99862.html
That doesn't mean that he is the only candidate in the area — it just means that he is the only one who has been recommended by another member here.
If you don't want to use medications, you don't you just treat yourself (like most of us here) and save a pile of money and time and trouble in the process. Medications can only temporarily control MC anyway. The proper way to control MC is to stop eating the foods that are causing your immune system to produce antibodies that cause intestinal inflammation. That will allow your gut to heal and remain in remission as long as you follow the diet.
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.
Hello ^^
Did you restrict your diet? No dairy, no fiber, no sugar, no gluten, low fat,...
You should definitely restrict your diet first, and see if there's any improvement. Also Vitamin D3 can help with the fatigue.
I think it takes a bit of time for Budesonide to start helping you. I've been taking 9mg of Budesonide for 3 months now and when I first started taking it, it kinda didn't help at all, and my stools were way more loose (maybe because the body is trying to kinda get used to it? ) but as time went by, it started getting better, and I started noticing it was finally helping me, allowing me to eat some more stuff, even though Budesonide is definitely not letting me put weight on (even though I do eat a lot and many times a day, I still can't get out of the underweight zone).
Don't take antibiotics without being sure that you really have a infection, because they make the situation worse!
Everything takes its time, so follow a really restricted diet for a while (there's a suggesting plan for meals somewhere here in the forum), and also Vitamin D3 and Magnesium can help :)
If the situation dont get better with the diet only, then maybe try taking Budesonide again. In my country, Portugal, pacients with IBD get their medications expenses mostly covered by the government, so I only pay like 15 dollars for 1 pack of Budesonide (it lasts 2 months). I don't know if they do something like that in the States, and I know that Budesonide is very very expensive, but sometimes we need to make investments in our well-being.
Even if it almost impossible not stressing out because of this disease, remember that stress it's like poison to us! So let's try our best to stay away from it!
Wish you the best!
Did you restrict your diet? No dairy, no fiber, no sugar, no gluten, low fat,...
You should definitely restrict your diet first, and see if there's any improvement. Also Vitamin D3 can help with the fatigue.
I think it takes a bit of time for Budesonide to start helping you. I've been taking 9mg of Budesonide for 3 months now and when I first started taking it, it kinda didn't help at all, and my stools were way more loose (maybe because the body is trying to kinda get used to it? ) but as time went by, it started getting better, and I started noticing it was finally helping me, allowing me to eat some more stuff, even though Budesonide is definitely not letting me put weight on (even though I do eat a lot and many times a day, I still can't get out of the underweight zone).
Don't take antibiotics without being sure that you really have a infection, because they make the situation worse!
Everything takes its time, so follow a really restricted diet for a while (there's a suggesting plan for meals somewhere here in the forum), and also Vitamin D3 and Magnesium can help :)
If the situation dont get better with the diet only, then maybe try taking Budesonide again. In my country, Portugal, pacients with IBD get their medications expenses mostly covered by the government, so I only pay like 15 dollars for 1 pack of Budesonide (it lasts 2 months). I don't know if they do something like that in the States, and I know that Budesonide is very very expensive, but sometimes we need to make investments in our well-being.
Even if it almost impossible not stressing out because of this disease, remember that stress it's like poison to us! So let's try our best to stay away from it!
Wish you the best!
She's a butterfly with broken wings and bleeding feathers, but still she flies... - J.Iron Word
- August 2017 - Diagnosed with Lymphocytic Colitis at 21 years old
- Probiotics + Budenofalk 9mg + Vitamin D3 2200 IU
- August 2017 - Diagnosed with Lymphocytic Colitis at 21 years old
- Probiotics + Budenofalk 9mg + Vitamin D3 2200 IU
Hi BarbieAnn,
I am 5 1/2 years post diagnosis and have been in remission for the past 3 years (confirmed by my biopsies). I also took Budesonide for just over 4 months but what Tex and others here will tell you is true- it’s the diet that heals. The meds bought me time (by reducing inflammation) but as soon as I read the surveys here and saw that 95% of us are intolerant of gluten followed by dairy, then soy, I immediately went gluten and dairy free. Two months later I eliminated soy and after I stopped Entocort I found I was reacting to eggs. Enterolab tests confirmed I was reacting to all 4. I have to say I found the Enterolab tests to be accurate and provided me with insights I needed to make my diet changes more quickly and with confidence. When I was as sick as you describe I also eliminated sugar, fat, fiber and caffeine just because everything was an irritant. I started a daily ‘food and poop’ journal to see patterns of how what I ate affected me. My safe diet was baked chicken, rice, cooked carrots and green beans, red potatoes, and later I added ground beef. You’ll have to find your own ‘safe diet’. And by the way I had absolutely debilitating nausea. I’d wake up with it and have to wait a couple of hours for it to let up. I also worked so dragging myself to work that way was a huge challenge. What helped my nausea the most was acupuncture. For me the results were long lasting without the side effects of drugs. Budesonide really doesn’t help with nausea. PPIs helped some, even though we don’t like to take them. OTC Bonine (meclizine) like we take motion sickness helped. I found Zofran to be somewhat sedating so I only took that if I was going to be home. For awhile taking a Zantac at bedtime helped. The bottom line is that nausea can be very much a feature of LC. The inflammation can be throughout our entire GI tract.
There are sections for newbies on the Main menu. I would not be as well as I am if not for the guidance I received here on this board. The Drs will only prescribe meds, but those are just a stop gap measure and will not bring remission. The diet heals.
I’m sorry you are going through this but I can assure you that you have come to the right place for help.
Best wishes,
Carol
I am 5 1/2 years post diagnosis and have been in remission for the past 3 years (confirmed by my biopsies). I also took Budesonide for just over 4 months but what Tex and others here will tell you is true- it’s the diet that heals. The meds bought me time (by reducing inflammation) but as soon as I read the surveys here and saw that 95% of us are intolerant of gluten followed by dairy, then soy, I immediately went gluten and dairy free. Two months later I eliminated soy and after I stopped Entocort I found I was reacting to eggs. Enterolab tests confirmed I was reacting to all 4. I have to say I found the Enterolab tests to be accurate and provided me with insights I needed to make my diet changes more quickly and with confidence. When I was as sick as you describe I also eliminated sugar, fat, fiber and caffeine just because everything was an irritant. I started a daily ‘food and poop’ journal to see patterns of how what I ate affected me. My safe diet was baked chicken, rice, cooked carrots and green beans, red potatoes, and later I added ground beef. You’ll have to find your own ‘safe diet’. And by the way I had absolutely debilitating nausea. I’d wake up with it and have to wait a couple of hours for it to let up. I also worked so dragging myself to work that way was a huge challenge. What helped my nausea the most was acupuncture. For me the results were long lasting without the side effects of drugs. Budesonide really doesn’t help with nausea. PPIs helped some, even though we don’t like to take them. OTC Bonine (meclizine) like we take motion sickness helped. I found Zofran to be somewhat sedating so I only took that if I was going to be home. For awhile taking a Zantac at bedtime helped. The bottom line is that nausea can be very much a feature of LC. The inflammation can be throughout our entire GI tract.
There are sections for newbies on the Main menu. I would not be as well as I am if not for the guidance I received here on this board. The Drs will only prescribe meds, but those are just a stop gap measure and will not bring remission. The diet heals.
I’m sorry you are going through this but I can assure you that you have come to the right place for help.
Best wishes,
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
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In the long run it doesn't matter what your doctor wants to call your problem, MC or IBS. He would be better off saying I really don't know anything. Many of us have had nausea as a symptom. In general the medical profession will not offer you much help in getting better. What will offer you help is the information you can get here from people who have been successful.
As other's have said diet is the key. Gluten, dairy, soy (and other legumes) and eggs are the key offenders. There can be others. Along with those four I have to avoid chicken. Also until you have healed your system fiber is to be avoided. If you vigorously pursue your food sensitivities and scrupulously avoid eating them in any and all circumstances you have an excellent chance to obtain remission. Patience is essential too and acceptance of your new reality.
Jean
As other's have said diet is the key. Gluten, dairy, soy (and other legumes) and eggs are the key offenders. There can be others. Along with those four I have to avoid chicken. Also until you have healed your system fiber is to be avoided. If you vigorously pursue your food sensitivities and scrupulously avoid eating them in any and all circumstances you have an excellent chance to obtain remission. Patience is essential too and acceptance of your new reality.
Jean
Hi! Just wanted to comment that I am also very new here and I just bought Tex's book at it's great! Thank you so much for gathering all this information for us.
To BarbieAnn, nausea is definitely something I feel is related to MC. I have had MC for probably my entire life. When I hit puberty I began to have nausea with my diarrhea all the time and especially right after I wake up. I've found it helpful to eat or drink something ASAP when I wake up. I also tend to get nauseated when I take a really hot shower, so cooling it down a bit helps this.
To BarbieAnn, nausea is definitely something I feel is related to MC. I have had MC for probably my entire life. When I hit puberty I began to have nausea with my diarrhea all the time and especially right after I wake up. I've found it helpful to eat or drink something ASAP when I wake up. I also tend to get nauseated when I take a really hot shower, so cooling it down a bit helps this.
Thank you all for your replies. This entire problem hasn't been helped by the fact that I have been a caregiver to my husband who has been fighting Lymphoma. He seems to be okay now, but these past few months have been hell. In addition to him, I have a 26 year old daughter who has a learning disability and have been in the process of getting her SSI, which was another hell on earth! So because of these other issues, the docs all seem to think that my problem is stress related.
I had a terrible night last night - woke up with excruciating pains which almost brought me to the ER. I went about 4 times and felt like my insides were coming out of me. I have another doc appointment today which I am not looking forward to. I believe he wants to do an endoscopy and CAT scan. I wanted to ask - can an endoscopy show a gluten intolerance? His next available appt for endoscopy is in 3 weeks and I wanted to see if he could push it up - to no avail. He also wants to do a pelvic ultrasound - to check ovaries I guess.
I'm just finding it increasingly hard to work. Between the fatigue, the cramps and the nausea, I can't seem to function. I worry because I carry our health insurance and I'm always afraid that I won't be able to work and we will lose our insurance. I'm also so underweight right now. I have always been a very thin, petite woman - the type who could eat as much as they want but never gain a pound. My normal weight is 115 pounds which looks fine on me. I am now down to 100 pounds, and on my small body it is showing rapidly. The doc told me it's not that much weight to lose. ?!? I dont get it.
Thank you all for your help and guidance. I also wanted to know if the stool sampling from that company in Texas is worth it?
I had a terrible night last night - woke up with excruciating pains which almost brought me to the ER. I went about 4 times and felt like my insides were coming out of me. I have another doc appointment today which I am not looking forward to. I believe he wants to do an endoscopy and CAT scan. I wanted to ask - can an endoscopy show a gluten intolerance? His next available appt for endoscopy is in 3 weeks and I wanted to see if he could push it up - to no avail. He also wants to do a pelvic ultrasound - to check ovaries I guess.
I'm just finding it increasingly hard to work. Between the fatigue, the cramps and the nausea, I can't seem to function. I worry because I carry our health insurance and I'm always afraid that I won't be able to work and we will lose our insurance. I'm also so underweight right now. I have always been a very thin, petite woman - the type who could eat as much as they want but never gain a pound. My normal weight is 115 pounds which looks fine on me. I am now down to 100 pounds, and on my small body it is showing rapidly. The doc told me it's not that much weight to lose. ?!? I dont get it.
Thank you all for your help and guidance. I also wanted to know if the stool sampling from that company in Texas is worth it?
Sadly, the symptoms probably are associated with stress, but they are real — that's just the nature of MC — it can be triggered by stress. An endoscopy can show celiac disease damage, and it can be used to diagnose celiac disease, but it cannot be used to rule out gluten sensitivity. And it cannot be used to diagnose the type of gluten sensitivity that most of us have — non-celiac gluten sensitivity.
The only test that will accurately and reliably detect any form of gluten sensitivity (including non-celiac gluten sensitivity) is the EnteroLab stool tests. The doctors don't have any test to diagnose non-celiac gluten sensitivity (most of them don't believe in and don't endorse the EnteroLab tests because they get cut out of the loop — the test results go straight to the patient, and doctors don't like that). The Enterolab tests are the best money that most of us have ever spent on our health care. They take all the doubt out of whether or not we have certain food sensitivities so that we can select a diet that works for us.
I know where you're coming from. It's mighty tough to continue to work when our MC is really active and the symptoms are severe. The quicker you can stop the inflammation and begin to heal your digestive system, the sooner you can get back to a more normal life.
Tex
The only test that will accurately and reliably detect any form of gluten sensitivity (including non-celiac gluten sensitivity) is the EnteroLab stool tests. The doctors don't have any test to diagnose non-celiac gluten sensitivity (most of them don't believe in and don't endorse the EnteroLab tests because they get cut out of the loop — the test results go straight to the patient, and doctors don't like that). The Enterolab tests are the best money that most of us have ever spent on our health care. They take all the doubt out of whether or not we have certain food sensitivities so that we can select a diet that works for us.
I know where you're coming from. It's mighty tough to continue to work when our MC is really active and the symptoms are severe. The quicker you can stop the inflammation and begin to heal your digestive system, the sooner you can get back to a more normal life.
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,
Have you checked your VitD levels?
If you are not already taking an Elemental Magnesium supplement or applying it externally albeit Epsom salt soaks, oil, or lotion, then you need to get going with this right away. Most VitD3 at your local store is ok, Magnesium may need to be gotten online unless you have a really great naturalistic store near you. Otherwise IHerb.com, Vitacost.com and Drcarolyndean.com have great selections without gluten, dairy, and soy in them....be sure to read the labels and only order these types. A good rule of thumb when just starting out would be for every pound of body weight to take 4 to 5 mg of Magnesium daily IE: 120# x 5 = 600 mg Elemental Magnesium. I take 600-800mg daily in different methods internal and external and I have been healing for 2.5 years now.
VitD and Magnesium work in tandem and one without the other isn't going to do anything for the body and when they do work together and one omits Gluten, and Dairy from their diet and begins a regimen of VitD and Magnesium many good things begin to happen. Nausea leaves, fatigue begins to leave, energy levels begin again....it took me anywhere from a few days to a few weeks to get to a really good place but once I got there it hasn't left and I feel well and rested each morning now, even if my bathroom trips aren't perfect. I also do not run to the Loo numerous times every morning anymore due to starting this new way of life
plus no more stomach cramps....that is something I do not miss one bit!
Ask lots of questions,
Take care,
Erica
Have you checked your VitD levels?
If you are not already taking an Elemental Magnesium supplement or applying it externally albeit Epsom salt soaks, oil, or lotion, then you need to get going with this right away. Most VitD3 at your local store is ok, Magnesium may need to be gotten online unless you have a really great naturalistic store near you. Otherwise IHerb.com, Vitacost.com and Drcarolyndean.com have great selections without gluten, dairy, and soy in them....be sure to read the labels and only order these types. A good rule of thumb when just starting out would be for every pound of body weight to take 4 to 5 mg of Magnesium daily IE: 120# x 5 = 600 mg Elemental Magnesium. I take 600-800mg daily in different methods internal and external and I have been healing for 2.5 years now.
VitD and Magnesium work in tandem and one without the other isn't going to do anything for the body and when they do work together and one omits Gluten, and Dairy from their diet and begins a regimen of VitD and Magnesium many good things begin to happen. Nausea leaves, fatigue begins to leave, energy levels begin again....it took me anywhere from a few days to a few weeks to get to a really good place but once I got there it hasn't left and I feel well and rested each morning now, even if my bathroom trips aren't perfect. I also do not run to the Loo numerous times every morning anymore due to starting this new way of life
plus no more stomach cramps....that is something I do not miss one bit!Ask lots of questions,
Take care,
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Thank you both so much for your guidance.
Tex - what type of test should I ask for from Enterolab - I just had to tell you that I went to my Gastro again today and told him about the nausea and he asked me where it's coming from! I guess I'm the doctor?!?
Erica - so if I weigh 105, I should take 500 mg of Magnesium in addition to the Epsom salt soaks? I already take 1000 of Vitamin D.
Tex - what type of test should I ask for from Enterolab - I just had to tell you that I went to my Gastro again today and told him about the nausea and he asked me where it's coming from! I guess I'm the doctor?!?
Erica - so if I weigh 105, I should take 500 mg of Magnesium in addition to the Epsom salt soaks? I already take 1000 of Vitamin D.
Hi Kde,
Right now in the beginning stages you can do both 500 and epsom plus I’d up the VitD3 too. I take 5000 iu daily and spread the magnesium out over my day with the last small dose a couple hours before bed...a foot soak might be something to do at that time maybe.
Once a year I have my VitD levels tested. I was at 9 back in 2008....I couldn’t get my VitD above 45 so I had to increase my VitD to 10000 daily with my magnesium and after 7 months I got up to 83 and my body is happily being in this range now. So now I have backed off to 5000 a day plus 600-800 magnesium and I’ll be here for a while I think.
As far as magnesium goes if you get too much it will give you D until it’s out of your intestines, lol then live an learn what your tolerance level resides and you’ll be golden
Right now in the beginning stages you can do both 500 and epsom plus I’d up the VitD3 too. I take 5000 iu daily and spread the magnesium out over my day with the last small dose a couple hours before bed...a foot soak might be something to do at that time maybe.
Once a year I have my VitD levels tested. I was at 9 back in 2008....I couldn’t get my VitD above 45 so I had to increase my VitD to 10000 daily with my magnesium and after 7 months I got up to 83 and my body is happily being in this range now. So now I have backed off to 5000 a day plus 600-800 magnesium and I’ll be here for a while I think.
As far as magnesium goes if you get too much it will give you D until it’s out of your intestines, lol then live an learn what your tolerance level resides and you’ll be golden
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Most people order the A1 Panel and the C1 Panel at the discounted combination price. That answer from your gastroenteroligist tells you how much he understands (or doesn't understand) about this disease. Yes, you have to be the doctor if you are going to get this disease under control.barbieAnn wrote:Tex - what type of test should I ask for from Enterolab - I just had to tell you that I went to my Gastro again today and told him about the nausea and he asked me where it's coming from! I guess I'm the doctor?!?
This is just my opinion, but at 105 lbs., I think 300 mg of the right kind of magnesium daily is plenty. Taking a lot more than you need means that you won't be able to absorb it all and you will be unnecessarily risking diarrhea. If you absorb more than your system can handle (and still keep your blood level in the normal range) your kidneys have to remove the excess, and over the long term, the extra load can lead to kidney damage. Been there, done that.barbieAnn wrote:Erica - so if I weigh 105, I should take 500 mg of Magnesium in addition to the Epsom salt soaks? I already take 1000 of Vitamin D.
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,
I have heard that New York State will not allow the enterolab testing? Is this true?
In addition, I am waiting to get an endoscopy done - so my doc told me that I cannot stick to the gluten free diet because the test will not be accurate if I cut gluten from my diet. I have to keep consuming gluten - meanwhile I have to wait for this test which is scheduled around Christmas. I can't bear to wait another 4 weeks. He also wants to do a CAT scan and sonogram. He has prescribed me some new meds, I would like your opinion as soon as I see what exactly it is.
Barb
I have heard that New York State will not allow the enterolab testing? Is this true?
In addition, I am waiting to get an endoscopy done - so my doc told me that I cannot stick to the gluten free diet because the test will not be accurate if I cut gluten from my diet. I have to keep consuming gluten - meanwhile I have to wait for this test which is scheduled around Christmas. I can't bear to wait another 4 weeks. He also wants to do a CAT scan and sonogram. He has prescribed me some new meds, I would like your opinion as soon as I see what exactly it is.
Barb
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Yes that is true, in the past Jean (user JFR) has been the transit point for the testing kit for people that live in New York State.
Re the Endocoscpy - so far as whether you decide to continue eating gluten is up to you. the GI will see damaged villia if you continue to eat gluten, but your journey to this point with symptoms etc proves that you have inflammation and damaged villi. Do you need further confirmation?
Re the Endocoscpy - so far as whether you decide to continue eating gluten is up to you. the GI will see damaged villia if you continue to eat gluten, but your journey to this point with symptoms etc proves that you have inflammation and damaged villi. Do you need further confirmation?
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama