I was recently diagnosed with lymphocytic colitis, primary symptoms just diarrhea, severe at times, but not consistent. I have had symptoms for years, but I was due for a colonscopy and my gastro doc immediately suspected microscopic colitis.
I had celiac blood tests and biopsies and did not test positive for any gluten issues.
I also had blood tests done for allergies and IGE was elevated but I did not test positive for any specific allergen.
Prior to the colonscopy, I tried Align probiotic and it seemed to help-The gastro doc put me on entecort for 8 weeks- (in week 2 now) and I am better, but not sure it is better than the probiotic in helping with the diarrhea.
I have done some work on eliminating and reintroducing foods with no consistent results. Mostly I tried bread and milk tests, but can't find any cause or effect there.
I have heartburn/gerd, improved since my last upper endoscopy, so I am off proton pump inhibitors, but continuing with my nsaid, after discussing with my gastro doc. He seems knowledgeable, but thinks the benefits of the nsaid outweigh the problems with the LC. ??? I have arthritis in multiple joints and a herneated disk, so without the nsaids I am pretty uncomfortable, maybe worse than the colitis symptoms.
I am also hypothyroid, which I noted many of you are also.
The advice I got from the gastro doc is that foods aren't causing this, so changing my diet won't cure it either. I am still hoping to find dietary changes that work but feel at a dead end for ideas.
Glad to have found you- there is tons of stuff to read and I am just getting started. I just wanted to introduce myself and look for any guidance from others who can't seem to find a diet correlation.
new member, looking for some guidance
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Motsy,
Welcome to the board. Well, after thinking about this a bit, the only cases where there is not a diet correlation, is in cases that are drug-induced, which may possibly be the case with you. The problem is, if you continue to take the drugs that cause your MC symptoms, you will not be able to avoid developing food sensitivities at some point down the line, and probably other autoimmune diseases, as well.
Regarding the diet, I had severe arthritis symptoms, also, roughly 10 years ago. Some days, I couldn't turn my head, because my neck was so stiff and sore, I could barely walk, with the aid of a cane, and I still have a couple of fingers that are crooked and twisted, as proof of a problem that I used to have. After I was on the GF diet long enough for my gut to heal, all my symptoms disappeared, including the arthritis, (except for the permanent damage to the fingers and other joints, of course - but they no longer bother me).
The blood tests for celiac disease are worthless for detecting the type of gluten-sensitivity that we have. Those tests will only detect fully-developed celiac disease. The antibodies associated with gluten-sensitivity that's linked with MC are not found in the blood, they're only found in the intestines, and the only tests that will reliably detect them are the stool tests offered by Enterolab, in Dallas.
It takes a long time for the gut to heal from gluten damage, so the diet is a long-term treatment - it usually won't show any significant results in just a week or so. It typically takes 6 months to a year, to achieve remission by diet, but some people see improvement in less time. Also, most of us are sensitive to not only gluten, but to all dairy products, and about half of us are sensitive to soy. Some of us have various other food sensitivities. Eliminating one food-sensitivity won't do any good - we have to eliminate all foods to which we are sensitive, (at the same time), in order to control our symptoms, and it takes time for the gut to heal. Avoiding all problem foods, while taking Entocort, is the fastest route to remission, but be aware that until your gut has time to heal by means of the diet, soon after you discontinue the Entocort treatment, your symptoms will relapse.
Yes, most GI docs don't know how to properly treat this disease, because they don't realize that food sensitivities are the cause of the inflammation in the first place. They don't have the foggiest idea what is causing the inflammation, (or what is not causing it), but for some silly reason, they will argue until they're blue in the face, that there is no proof that MC can be treated by diet changes, and yet they also have no proof that it can't be successfully treated by diet. Doctors have some weird ideas, sometimes.
Again, welcome to the board, and I hope you can find some answers here, so that you can learn how to control your symptoms, and start enjoying life again.
Tex
Welcome to the board. Well, after thinking about this a bit, the only cases where there is not a diet correlation, is in cases that are drug-induced, which may possibly be the case with you. The problem is, if you continue to take the drugs that cause your MC symptoms, you will not be able to avoid developing food sensitivities at some point down the line, and probably other autoimmune diseases, as well.
Regarding the diet, I had severe arthritis symptoms, also, roughly 10 years ago. Some days, I couldn't turn my head, because my neck was so stiff and sore, I could barely walk, with the aid of a cane, and I still have a couple of fingers that are crooked and twisted, as proof of a problem that I used to have. After I was on the GF diet long enough for my gut to heal, all my symptoms disappeared, including the arthritis, (except for the permanent damage to the fingers and other joints, of course - but they no longer bother me).
The blood tests for celiac disease are worthless for detecting the type of gluten-sensitivity that we have. Those tests will only detect fully-developed celiac disease. The antibodies associated with gluten-sensitivity that's linked with MC are not found in the blood, they're only found in the intestines, and the only tests that will reliably detect them are the stool tests offered by Enterolab, in Dallas.
It takes a long time for the gut to heal from gluten damage, so the diet is a long-term treatment - it usually won't show any significant results in just a week or so. It typically takes 6 months to a year, to achieve remission by diet, but some people see improvement in less time. Also, most of us are sensitive to not only gluten, but to all dairy products, and about half of us are sensitive to soy. Some of us have various other food sensitivities. Eliminating one food-sensitivity won't do any good - we have to eliminate all foods to which we are sensitive, (at the same time), in order to control our symptoms, and it takes time for the gut to heal. Avoiding all problem foods, while taking Entocort, is the fastest route to remission, but be aware that until your gut has time to heal by means of the diet, soon after you discontinue the Entocort treatment, your symptoms will relapse.
Yes, most GI docs don't know how to properly treat this disease, because they don't realize that food sensitivities are the cause of the inflammation in the first place. They don't have the foggiest idea what is causing the inflammation, (or what is not causing it), but for some silly reason, they will argue until they're blue in the face, that there is no proof that MC can be treated by diet changes, and yet they also have no proof that it can't be successfully treated by diet. Doctors have some weird ideas, sometimes.
Again, welcome to the board, and I hope you can find some answers here, so that you can learn how to control your symptoms, and start enjoying life again.
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.
Motsy. You've found tthe best place in the world for information and support.This is for your doc
but he is not alone in his thinking. We know that diet has everything to do with it in most cases. Tex posted about the other cases.DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
A lot of us are the proof!
I found this site on the Friday I got my diagnosis. I read and read and read some more. I saw that there were people just like me. By Monday, I was gluten free.
I hated my GI at first and even had my DH cancel his appointment with her. She started to listen and believe me as time passed. I guess she realized that I wasn't taking any Lialda or Entocort she offered.
Tex says, "You can get your life back." You may have to listen to the PP instead of your doc.
I found this site on the Friday I got my diagnosis. I read and read and read some more. I saw that there were people just like me. By Monday, I was gluten free.
I hated my GI at first and even had my DH cancel his appointment with her. She started to listen and believe me as time passed. I guess she realized that I wasn't taking any Lialda or Entocort she offered.
Tex says, "You can get your life back." You may have to listen to the PP instead of your doc.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Thanks for your quick responses- I did have biopsies to look for celiac- but gluten intolerance is still a possibility?
I kind of think the blood tests I had may not have been good anyway- full spectrum of airborn and food born with NO allergies- very odd, since I have allergy symptoms every fall.
I have noticed that when I do the Atkins diet I have an almost immediate cessation of heartburn/gerd issues. That may be a place to start- Typically I make my own food and it is gluten free by accident. (meats, fish, vegetables, home seasoned) I have tried to "cause" a reaction with bread or milk and haven't been successful, so I guess I need to learn more about timing of reactions too-
Thanks for listening and the encouragement.
I kind of think the blood tests I had may not have been good anyway- full spectrum of airborn and food born with NO allergies- very odd, since I have allergy symptoms every fall.
I have noticed that when I do the Atkins diet I have an almost immediate cessation of heartburn/gerd issues. That may be a place to start- Typically I make my own food and it is gluten free by accident. (meats, fish, vegetables, home seasoned) I have tried to "cause" a reaction with bread or milk and haven't been successful, so I guess I need to learn more about timing of reactions too-
Thanks for listening and the encouragement.
Yes! Doctors used to deny that it was possible, but the latest research has shown that many people have non-celiac gluten-sensitivity, and we are just as sensitive to gluten as someone with celiac disease. You don't even have to have to have a celiac gene, to be sensitive to gluten. That are several other genes that predispose to non-celiac gluten-sensitivity. Also, if it's not treated, by avoiding gluten, it carries the same basic health risks as untreated celiac disease.Motsy wrote:I did have biopsies to look for celiac- but gluten intolerance is still a possibility?
GERD is commonly associated with MC, and certainly foods tend to cause GERD. Here's a list of foods to avoid, at least for several hours before bedtime:
http://www.acidrefluxcure.net/diet/
Many members here have found that as they control their MC symptoms, their allergies become less of a problem. If you prepare most of your own meals, and cook from scratch, it's much easier to follow a diet that avoids food-sensitivities. Dee's Kitchen on this board, contains hundreds of excellent recipes that are free of gluten, dairy, and soy.
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
The best way to do a gluten challenge, to verify whether or not you are truly sensitive to gluten, is to avoid it 100%, for at least a couple of months, and then eat enough of it to allow a good test, (such as at least a couple of slices of bread, or a slice of cake, etc.). You will know by your reaction, (or lack of one), whether you are sensitive to it. The reason for waiting until a couple of months have passed, without any gluten in the diet, is to allow the antibodies to decline enough so that the immune system will be at full sensitivity. That way, there won't be any problem with interpreting the reaction - it will be obvious, or nothing at all.
You're most 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.