Hello,
I am new to this forum, although I've lurked for some time now. I am an almost 34 year old female. Back in Nov 2011 I had a colonoscopy with biopsies, trying to rule out Celiac (after a good decade of symptoms and "episodes"). It was negative for Celiac, but the doc never called me about biopsy results. So it actually wasn't until a full year later, in Nov 2012, when I went back to the GI doc that he revealed that I've been diagnosed with Lymphocytic Colitis. I've been put on Asacol, and then Asacol HD.
The meds help with the consistency of my BMs--I don't get complete liquid anymore. But I am still getting a whole lot of mucus and "wet air/gas." I am still getting bloating, that "irritated" feeling in my digestive track, bloating, urgency. When I mentioned all that to the doc, he added Bentyl to treat what he thinks is IBS in addition to the MC.
I've been suspecting something like a food sensitivity for years and back in 2011 had the ALCAT blood testing done. It came back with a whole lot of "red" "orange" and "yellow" sensitivities--high, moderate and mild. Interestingly enough, gluten was a mild one for me, casein was negative completely, but whey was a moderate sensitivity. All in all, I have 12 "high sensitivity" foods; 17 "moderate" and about 30 "mild." awesome.
needless to say, i've tried to eliminate at least some of those for weeks at a time before my MC diagnosis and treatment, but really didn't feel a whole lot of difference. Once I got the meds, I've been eating everything. And still sick...
So I just wanted to introduce myself and share my story. I look forward to reading some more here. I will attempt eliminating some foods again to see if that helps. My next doc appointment is in two weeks....
Edited to add--I also have some other auto-immune things going on. I have 'suspected' Lupus--positive ANA and tons of symptoms. I have Raynaud's syndrome. I have nodules on my thyroid and every symptom in the book, but normal thyroid blood so far. And I have anxiety. so there is me--the oldest 34 year old on the planet!
New member--and sick
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Ugh, Fluffypoodle. I so sympathize with you. A lot of us have multiple auto-immune issues going on but they seem to be striking younger people at an alarming rate. I just wanted to welcome you and let you know you've come to the right place. I'm sure others will be checking in soon. The main food
culprits for us with MC on this forum are gluten, dairy and soy. I really believe gluten is playing a huge part in auto-immune issues. Good luck with your journey. This place is a God-send. Deb
culprits for us with MC on this forum are gluten, dairy and soy. I really believe gluten is playing a huge part in auto-immune issues. Good luck with your journey. This place is a God-send. Deb
Ray aids
Hello,
I'm new to this community too. I'm amazed to learn how many of us seem to have other symptom's in common. I too, have Raynauds , thyroid nodules (thyroid removed surgically so I take synthroid), fibromyalgia and know first hand that anxiety can be dibilitating. I'm more than twice your age however. Currently on day 4 of a rice, chicken banana elimination diet to see whether I can find dietary triggers of my collagenous colitis. Hope that very soon you'll find an eating plan that helps along with meds if needed. It does help to know that other people have similar problems.
Except for the collagenous colitis I did have the other problems at your age. It gave me a lift to read the
Joke page, I read that laughter is healing.
Kay
I'm new to this community too. I'm amazed to learn how many of us seem to have other symptom's in common. I too, have Raynauds , thyroid nodules (thyroid removed surgically so I take synthroid), fibromyalgia and know first hand that anxiety can be dibilitating. I'm more than twice your age however. Currently on day 4 of a rice, chicken banana elimination diet to see whether I can find dietary triggers of my collagenous colitis. Hope that very soon you'll find an eating plan that helps along with meds if needed. It does help to know that other people have similar problems.
Except for the collagenous colitis I did have the other problems at your age. It gave me a lift to read the
Joke page, I read that laughter is healing.
Kay
Kay
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fluffypoodle
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Thanks, guys, for the warm welcome! This seems like a nice group of people who understand.
I am def. Going to eliminate dairy and gluten. I have gone for weeks without gluten in the past but have never eliminated dairy. Hard for me because I just love cheese so much. But I am ready this time.
Soy would be easy too. Egg yolks, althought maybe the whole egg?
Funny enough chicken was on my orange list of sensitivities. My only safe protein was pork and quail and some fish, but not ones I usually eat. And egg whites. My grains were millet and quinoa. Good thing I love both!
Anyhow. My rheumatologist is also suspecting fibro. And some kind of inflammatory arthritis, although my doc was very clear that MC is NOT the type of IBD that can be linked to arthritis. But good times regardless.
I am def. Going to eliminate dairy and gluten. I have gone for weeks without gluten in the past but have never eliminated dairy. Hard for me because I just love cheese so much. But I am ready this time.
Soy would be easy too. Egg yolks, althought maybe the whole egg?
Funny enough chicken was on my orange list of sensitivities. My only safe protein was pork and quail and some fish, but not ones I usually eat. And egg whites. My grains were millet and quinoa. Good thing I love both!
Anyhow. My rheumatologist is also suspecting fibro. And some kind of inflammatory arthritis, although my doc was very clear that MC is NOT the type of IBD that can be linked to arthritis. But good times regardless.
Welcome F Poodle! I can't believe your doctor didn't tell you about your DX of MC! Crazy!
Sorry that you are suffering, but we all were where you are... or still are. Many of us have taken care of this with diet alone, and others have used a combination of drugs and diet. Getting this disease under control takes time, diligence, sacrifice, and PATIENCE.
The four most INFLAMMATORY foods are gluten, dairy, soy , and eggs. Almost all of us stay away from gluten. You probably won't notice right away feeling better when you eliminate it because the antibodies stay in your system for months. I have been doing this a little more than a year and I am still feeling progressively better with time.
Then there are the "IRRITANT FOODS". These are foods that don't actually cause Inflammation, but are very hard on a inflamed gut and can really stall any healing. These are RAW fruits and veggies, beans,legumes, salad, citrus, tomato ( acid), maybe coffee and black tea....) We are all different. These foods you can test back into your diet once you have healed and feel good. I have added many back in :)
So what can you eat? Again, we are all a bit different, but... meats, COOKED veggies, applesauce, rice and it's products. I also ate sweet potatoes, corn tortillas, almond butter, chex cereals with almond milk, eggs ....nuts (except peanuts) .Your quinoa and millet are good.
Sounds restrictive, but your system needs time to heal so you need to only eat the foods that are easy on it for a while.
There are many drugs that also tend to keep people from remission. Certain antidepressants, Ibuprofen, Aleve, acid reducers,...etc.
If you have the money, you may want to Take the food intolerance tests fron Enterolab. Google them. It saves a lot of guess work.
Okay, good luck. Read as much as you can here. Ask questions and keep us posted
Leah
Sorry that you are suffering, but we all were where you are... or still are. Many of us have taken care of this with diet alone, and others have used a combination of drugs and diet. Getting this disease under control takes time, diligence, sacrifice, and PATIENCE.
The four most INFLAMMATORY foods are gluten, dairy, soy , and eggs. Almost all of us stay away from gluten. You probably won't notice right away feeling better when you eliminate it because the antibodies stay in your system for months. I have been doing this a little more than a year and I am still feeling progressively better with time.
Then there are the "IRRITANT FOODS". These are foods that don't actually cause Inflammation, but are very hard on a inflamed gut and can really stall any healing. These are RAW fruits and veggies, beans,legumes, salad, citrus, tomato ( acid), maybe coffee and black tea....) We are all different. These foods you can test back into your diet once you have healed and feel good. I have added many back in :)
So what can you eat? Again, we are all a bit different, but... meats, COOKED veggies, applesauce, rice and it's products. I also ate sweet potatoes, corn tortillas, almond butter, chex cereals with almond milk, eggs ....nuts (except peanuts) .Your quinoa and millet are good.
Sounds restrictive, but your system needs time to heal so you need to only eat the foods that are easy on it for a while.
There are many drugs that also tend to keep people from remission. Certain antidepressants, Ibuprofen, Aleve, acid reducers,...etc.
If you have the money, you may want to Take the food intolerance tests fron Enterolab. Google them. It saves a lot of guess work.
Okay, good luck. Read as much as you can here. Ask questions and keep us posted
Leah
Hi Fluff,
It is total F-ing unbelievable that your doctor did not call you with your results and you suffered for an additional year. I thought it was incomprehensible to wait a month for an appointment to get on Entocort after my diagnosis--with the suffering I was going thru it seemed like they could sneak me in for an appointment in 3 or 4 days to alleviate the suffering.
I'd consider moving on to another GI doc. I'm on GI doc #2. Microscopic colitis is an inflammatory bowel disease. These GI docs know this.
Dietary changes are very key to going into remission.
Welcome to the forum and there is a lot of info on here, Brandy
It is total F-ing unbelievable that your doctor did not call you with your results and you suffered for an additional year. I thought it was incomprehensible to wait a month for an appointment to get on Entocort after my diagnosis--with the suffering I was going thru it seemed like they could sneak me in for an appointment in 3 or 4 days to alleviate the suffering.
I'd consider moving on to another GI doc. I'm on GI doc #2. Microscopic colitis is an inflammatory bowel disease. These GI docs know this.
Dietary changes are very key to going into remission.
Welcome to the forum and there is a lot of info on here, Brandy
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fluffypoodle
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Thanks Leah and Brandy,
I think I want to wait on enterolab. I know of them and about them from my celiac research before diagnosis. But because I spent an insane amount on the ALCAT years ago, I feel like I really can't. Justify this now.... Maybe later. But I appreciate the explanation of a difference between inflammatory foods and irritating ones. Makes complete and total sense. That's why any salad goes right through me, without gluten or dairy on it!
Brandy, you have no idea. I was speechless during that appointment when he told me he found something that can be treated! He actually thought that I was there for my biopsy follow up. He didn't realize the difference in the date. But he is one of top gi docs in Washington, so I do think he knows his stuff.
Thank you all again!
I think I want to wait on enterolab. I know of them and about them from my celiac research before diagnosis. But because I spent an insane amount on the ALCAT years ago, I feel like I really can't. Justify this now.... Maybe later. But I appreciate the explanation of a difference between inflammatory foods and irritating ones. Makes complete and total sense. That's why any salad goes right through me, without gluten or dairy on it!
Brandy, you have no idea. I was speechless during that appointment when he told me he found something that can be treated! He actually thought that I was there for my biopsy follow up. He didn't realize the difference in the date. But he is one of top gi docs in Washington, so I do think he knows his stuff.
Thank you all again!
Hi,fluffypoodle wrote:But he is one of top gi docs in Washington, so I do think he knows his stuff.
Welcome aboard. I hate to burst your bubble, but in addition to being guilty of malpractice for not informing you of your diagnosis until a year later, your doc appears to be totally lost, regarding MC. I wouldn't trust him to treat my dog. (FWIW, dogs are also diagnosed with MC).
First off, MC is commonly associated with arthritis symptoms. That relationship was discovered about 30 years ago — so much for your docs knowledge about MC. The fact that he is treating you for IBS symptoms, when you have a diagnosis of MC, is further proof of his lack of knowledge about the disease — it means that he doesn't have the foggiest idea that the inflammation that causes MC is perpetuated by food sensitivities. If he is actually one of the top GI specialists in Washington, I feel sorry for anyone living there who has digestive system issues that are associated with food sensitivities, because they are not likely to find qualified medical help.
The other bad news is that the blood tests (all but one of them, not just ALCAT's) are almost totally worthless for detecting the type of food sensitivities that are associated with celiac disease and MC. The one exception is mediator release testing (MRT), which can be helpful for tracking down the last few hard-to-detect food sensitivities. The other blood tests work for classic allergies (that are based on IgE reactions), but they are worthless for detecting the type of food sensitivities that are associated with MC. The food sensitivities that we are dealing with can only be accurately and reliably determined by means of either stool tests based on the detection of IgA antibodies (which are only available at EnteroLab), or by testing biopsy samples taken from the colon during a colonoscopy exam, for IgA antibodies by means of ELISA testing.
I hope that you can get your symptoms under control reasonably soon, but IMO the fastest way to get your life back is to forget the results of that ALCAT testing, and concentrate on the suggestions for diet changes made in this thread by Deb, Kay, Leah, and Brandy.
And I totally agree with Brandy that you need to find a qualified GI specialist. Your current doc leaves way too much to be desired, when it comes to treating this disease. Sadly, he appears to be lost.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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fluffypoodle
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oh, wow, Tex, thank you so much! Goodness, my bubble is completely gone now! :) I really thought he knew his stuff! He even said something like "I have a huge book on types of colitis, and MC is just a few pages"--he made it very clear that this is a light thing and is NOT related to what i'm eating. Yikes. I guess I better check out the link to good doctors on this site. I am so glad I found you guys!
Even my rheumatologist was ready to make the arthritis connection--but he admitted that he's only ever heard of UC and Crohn's and not MC so he called the GI doc for advice on my meds. He was told not to use biologics on me because it'll be like shooting a fly with a machine gun.
I am def. taking the diet advice here. I will also try to read the book this weekend. And I will take a further look at the stool test.
Thank you so much again!!!
Even my rheumatologist was ready to make the arthritis connection--but he admitted that he's only ever heard of UC and Crohn's and not MC so he called the GI doc for advice on my meds. He was told not to use biologics on me because it'll be like shooting a fly with a machine gun.
I am def. taking the diet advice here. I will also try to read the book this weekend. And I will take a further look at the stool test.
Thank you so much again!!!
Hi FP and !
Are you a poodle fan? I actually know of a poodle named Daisy who was diagnosed with MC and took Entocort! I believe she is fine now, once the family eliminated all grains from her diet (at my suggestion, not her vet's).
A little advice from me (as an MCer diagnosed 12 years ago and managed by diet alone, and a board-certified physician): don't waste too much time looking for a GI doc who "gets it". Yes, the GI doc is necessary to perfom the colonoscopy that leads to the MC diagnosis and to prescribe meds, but you will get well faster by designing your own treatment program based on the info on this website. The food connection in MC is just not out there yet in the literature that the GI docs read or the lectures they attend, for the most part.
I agree with getting the Enterolab tests as soon as you can afford them. They will definitely help you to set your course. I have a myriad of food sensitivities (see at left under my avatar), and I found one blood test to be especially helpful in fine-tuning my diet - the MRT or mediated release test.
But that is a test for down the road, only if you have eliminated the more common sensitivities and still have problems. Most do fine just eliminating the common ones, the ones Enterolab tests for.
Good luck on your journey to health!
Love,
Polly
!Are you a poodle fan? I actually know of a poodle named Daisy who was diagnosed with MC and took Entocort! I believe she is fine now, once the family eliminated all grains from her diet (at my suggestion, not her vet's).
A little advice from me (as an MCer diagnosed 12 years ago and managed by diet alone, and a board-certified physician): don't waste too much time looking for a GI doc who "gets it". Yes, the GI doc is necessary to perfom the colonoscopy that leads to the MC diagnosis and to prescribe meds, but you will get well faster by designing your own treatment program based on the info on this website. The food connection in MC is just not out there yet in the literature that the GI docs read or the lectures they attend, for the most part.
I agree with getting the Enterolab tests as soon as you can afford them. They will definitely help you to set your course. I have a myriad of food sensitivities (see at left under my avatar), and I found one blood test to be especially helpful in fine-tuning my diet - the MRT or mediated release test.
But that is a test for down the road, only if you have eliminated the more common sensitivities and still have problems. Most do fine just eliminating the common ones, the ones Enterolab tests for.
Good luck on your journey to health!
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Dear Fluff,
Welcome to our group. You've already gotten lots of good advice. I thoroughly second both the suggestions for diet changes, and Enterolab tests. They are expensive, but they give you a really good place to start with making changes to your diet.
I just wanted to caution you on soy: you said it would be easy to eliminate soy. I thought so too, since the only soy products I used were soy sauce and tempeh. Wrong!!! Soy is in just about everything on your grocery store shelves. Read the labels carefully, as soybean oil and soy lecithin are in so many products. And textured vegetable protein is often soy too.
Kay, welcome to you, too!
Love,
Martha
Welcome to our group. You've already gotten lots of good advice. I thoroughly second both the suggestions for diet changes, and Enterolab tests. They are expensive, but they give you a really good place to start with making changes to your diet.
I just wanted to caution you on soy: you said it would be easy to eliminate soy. I thought so too, since the only soy products I used were soy sauce and tempeh. Wrong!!! Soy is in just about everything on your grocery store shelves. Read the labels carefully, as soybean oil and soy lecithin are in so many products. And textured vegetable protein is often soy too.
Kay, welcome to you, too!
Love,
Martha
Martha
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fluffypoodle
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Here's where he made his mistake when he reached the conclusion that MC is a trivial issue because not much information is available on it, in the literature that he uses as his references:fluffypoodle wrote:I really thought he knew his stuff! He even said something like "I have a huge book on types of colitis, and MC is just a few pages"--he made it very clear that this is a light thing and is NOT related to what i'm eating.
Information about MC is as scarce as hen's teeth in that book, not because MC isn't worthy of more space, but because the authors of that book knew virtually nothing about the disease when they wrote the book. And they are in good company, because unfortunately, precious few GI specialists have a good working knowledge of the disease, and most of them don't understand the disease well enough to be qualified to successfully treat it.
You have to know at least a little about a disease in order to be able to write a significant amount of valid information about it. And the sad part is that mistaken assumptions tend to live a long time, and go a long way in medicine, and in the specialty of gastroenterology, especially. Misleading assumptions can cause a lot of unnecessary pain and suffering among patients.
If you would like to see this disease put into perspective, in relation to the other inflammatory bowel diseases, please check out the main article on the page at the link below. The article is titled Microscopic Colitis: The Elephant in the Room That No One Seems to Notice Unless They Have It.
http://microscopiccolitis.org/
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.
Polly,
Thanks for mentioning the mediator release testing — in my haste to get a late-night post finished, so that I could get to bed, I completely overlooked the MRT option when I wrote in a previous post that none of the blood tests are useful for detecting the type of food sensitivities that we have.
I have edited that post to correct the oversight.
Love,
Tex
Thanks for mentioning the mediator release testing — in my haste to get a late-night post finished, so that I could get to bed, I completely overlooked the MRT option when I wrote in a previous post that none of the blood tests are useful for detecting the type of food sensitivities that we have.
I have edited that post to correct the oversight.
Love,
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 and thank you
This website , as many of you have stated is a God-send. I'm learning more and more. Good luck with finding a better doc, Fluffy. I had considered changing doctors, but now am aware that most doctors don't know a great deal about the disease. My doctor did say, "We don't really know what causes it, but sometimes anti-inflammatory medicine is suspect and maybe antibiotics too. Some people are helped by avoiding gluten and/or dairy." Well, she is correct. Sadly she stopped a little short of what many of you have said and didn't offer practical suggestions on dietary changes. So here I am learning from the best about what works and what might help.
Tex,
At your suggestion I read the information about Mast cell involvement. It does sound likely. I react with hives, rashes,congestion and mouth sores to a lot of things. Fish, shell fish, milk chocolate, strawberries, honeydew melon, nuts, sulfa, ibuprofen, Calan ( a high blood pressure med), eggs (this one may have lessened), silk and wool. Am I correct in thinking that dietary changes may give me acceptable relief? Is the use of anti-histamines something I would do so that I could tolerate allergens and sensitivities. Or, is it wiser to avoid as many of the triggers as possible?
Thank you for your sound suggestions,
Kay
Tex,
At your suggestion I read the information about Mast cell involvement. It does sound likely. I react with hives, rashes,congestion and mouth sores to a lot of things. Fish, shell fish, milk chocolate, strawberries, honeydew melon, nuts, sulfa, ibuprofen, Calan ( a high blood pressure med), eggs (this one may have lessened), silk and wool. Am I correct in thinking that dietary changes may give me acceptable relief? Is the use of anti-histamines something I would do so that I could tolerate allergens and sensitivities. Or, is it wiser to avoid as many of the triggers as possible?
Thank you for your sound suggestions,
Kay
Kay