Hi! My name is Chelsea and I stumbled on this forum today and already feel so welcome. I knew I was in the right place after reading 'happiness is a dry fart'. If you have this disease and can't laugh about it occasionally then you're in real trouble!
My history:
Battled the D for about 10 years (I'm 28). I had an blood allergy test done but found no major allergies but a few minor ones. The D wasn't so bad while I was pregnant, I didn't have the urgency but after reading a few forums it may be because I was on an OTC heartburn med. After having my son in October I finally decided to get some help. I had a colonoscopy in the spring of '12 and was diagnosed with the collagenous varietal. I was placed on entcort (budesonide) and found immediate relief, hallelujah! My doc prescribed me for 30 days of budesonide. 3 days after my rx ran out the D was back in its full glory. I talked the doc into 60 more days and he begrudgingly approved. I've been off the rx for about a week and have never felt worse.
I'm at my wits end and trying to figure out what path to take now. I've called my gastro and my GP looking for some advice. I really feel like my gastro knows nothing about MC. At my last appointment he asked if I'd ever tried Imodium. Ummm, WHAT?! Of course I have! Grrrr. This week I had to do something I've fears most which is contain my 9 month old son (not easy to do) while I camp out in the bathroom.
So, I need some advice! What path should I head down next? Going GF and DF seems to make my symptoms worse. Should I do a liquid diet for a day or 2 before trying an elimination diet?
Newbie: I love you all already!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Dear Chelsea,
I'm sorry you have MC, but you have found a place where lots of people have experience to share.
My advice would be to get stool testing done at Enterolab. That can tell you if you are producing antibodies to gluten, dairy, soy, eggs, and yeast. And now they have more tests that can tell you about other foods. If you can get that done, it gives you a starting place to know what to eliminate.
As you have probably read on this site, gluten antibodies stay in the body for a long time, so even if you go GF for a few weeks, you may not (almost certainly not) see improvement in that amount of time. Your digestive system has a lot of damage done to it, and it doesn't heal quickly.
I was on Entocort for 3 months, and relapsed within a month of going off it. I didn't know about the dietary connection at that time. My doctor mentioned a patient whose MC improved when she ate two coconut macaroons a gay, so I decided to give that a try. Surprisingly, I noticed an improvement. Nothing like the improvement while I took Entocort, but it was way cheaper! That sent me on an internet search about diet, and I found this forum, heard about the diet link, which I thought must surely be wrong, but it wasn't.
Some people have figured out their intolerances just with an elimination diet, but it takes a lot of time, and patience. Enterolab testing gives you a starting point, and you can refine your diet after eliminating the things that the tests show you react to.
Wow, I can't imagine having to deal with MC and a small baby. My 11-month-old granddaughter has a "zone" in the living room. Maybe you'll have to make your son a "zone" in the bathroom with his toys available! Not anyone's first choice of a place to play, huh?
Love,
Martha
I'm sorry you have MC, but you have found a place where lots of people have experience to share.My advice would be to get stool testing done at Enterolab. That can tell you if you are producing antibodies to gluten, dairy, soy, eggs, and yeast. And now they have more tests that can tell you about other foods. If you can get that done, it gives you a starting place to know what to eliminate.
As you have probably read on this site, gluten antibodies stay in the body for a long time, so even if you go GF for a few weeks, you may not (almost certainly not) see improvement in that amount of time. Your digestive system has a lot of damage done to it, and it doesn't heal quickly.
I was on Entocort for 3 months, and relapsed within a month of going off it. I didn't know about the dietary connection at that time. My doctor mentioned a patient whose MC improved when she ate two coconut macaroons a gay, so I decided to give that a try. Surprisingly, I noticed an improvement. Nothing like the improvement while I took Entocort, but it was way cheaper! That sent me on an internet search about diet, and I found this forum, heard about the diet link, which I thought must surely be wrong, but it wasn't.
Some people have figured out their intolerances just with an elimination diet, but it takes a lot of time, and patience. Enterolab testing gives you a starting point, and you can refine your diet after eliminating the things that the tests show you react to.
Wow, I can't imagine having to deal with MC and a small baby. My 11-month-old granddaughter has a "zone" in the living room. Maybe you'll have to make your son a "zone" in the bathroom with his toys available! Not anyone's first choice of a place to play, huh?
Love,
Martha
Martha
Welcome Chelsea! I've spent many an hour with my kids in the bathroom. They are experts on D now!! Must explain their non-stop potty talk at ages 5 and 7. 
I seem to be good at getting in and getting out quickly now, although I only go 1-2 times/day, thanks to the diet changes I had to make. Most people here are GF/DF and Soy free. Others get additional testing to discover additional intolerances like eggs, yeast, seeds, legumes, certain nuts, some veggies, etc. Going GF and DF must be 100% to get any real benefit.
Have you been tested for celiac disease? MC is strongly associated with celiac and gluten sensitivity.
What other meds have you tried for symptom relief? Many here get mild symptom relief with Immodium. I get a little help when I'm flaring from Pepto Bismol tabs. Others can find docs willing to prescribe Entocort for much longer periods. Diet is the only long-term solution though.
Your are correct, gastros know next to nothing about MC, and even less about the relationship between diet and your gut. Go figure.
I seem to be good at getting in and getting out quickly now, although I only go 1-2 times/day, thanks to the diet changes I had to make. Most people here are GF/DF and Soy free. Others get additional testing to discover additional intolerances like eggs, yeast, seeds, legumes, certain nuts, some veggies, etc. Going GF and DF must be 100% to get any real benefit. Have you been tested for celiac disease? MC is strongly associated with celiac and gluten sensitivity.
What other meds have you tried for symptom relief? Many here get mild symptom relief with Immodium. I get a little help when I'm flaring from Pepto Bismol tabs. Others can find docs willing to prescribe Entocort for much longer periods. Diet is the only long-term solution though.
Your are correct, gastros know next to nothing about MC, and even less about the relationship between diet and your gut. Go figure.
Hi Chelsea,
Welcome to our internet family. We consider ourselves a family, because no one truly understands this disease and what living with it is like, unless they actually have it (and that especially apples to GI specialists). The advice that you've already received form Martha and Zizzle is right on target. Budesonide can suppress the symptopms, but the only way to prevent the inflammation that causes the symptoms from reoccurring, is to avoid whatever is causing the inflammation.
For some of us it is certain drugs (MC can be triggered by NSAIDs, antibiotics, PPIs, SSRIs, SNRIs, bisphosphonates, statins, and a few others), while for others, our symptoms are perpetuated by food sensitivities (beginning with gluten and casein for most of us, plus soy for about half of us, and including certain other foods for others).
We each have to work out our own personalized treatment program, because there is no one-size-fits-all treatment program that works for everyone, unfortunately. That's why most GI docs don't have much luck treating patients who have MC. Their drugs are only a temporary patch, and most GI docs still don't recognize/understand the connection with food sensitivities.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. We consider ourselves a family, because no one truly understands this disease and what living with it is like, unless they actually have it (and that especially apples to GI specialists). The advice that you've already received form Martha and Zizzle is right on target. Budesonide can suppress the symptopms, but the only way to prevent the inflammation that causes the symptoms from reoccurring, is to avoid whatever is causing the inflammation.
For some of us it is certain drugs (MC can be triggered by NSAIDs, antibiotics, PPIs, SSRIs, SNRIs, bisphosphonates, statins, and a few others), while for others, our symptoms are perpetuated by food sensitivities (beginning with gluten and casein for most of us, plus soy for about half of us, and including certain other foods for others).
We each have to work out our own personalized treatment program, because there is no one-size-fits-all treatment program that works for everyone, unfortunately. That's why most GI docs don't have much luck treating patients who have MC. Their drugs are only a temporary patch, and most GI docs still don't recognize/understand the connection with food sensitivities.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
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 Chelsea. Welcome. Well, you have your hands full! You will find that everyone's experience is different and you are already getting good advice. Tex is an expert, by the way.
If you can afford the Enterolab testing, that will speed your food intolerance journey up. I was unable to use the tests ( because i am IgA deficient, so I don't produce the antibodies they are looking for), so I had to do it the old fashioned way - Elimination diet.
The combination of Entocort AND the diet is a great way to go and has worked great for me. I am down to one pill one day and two days off. It's taken me 5 months to get to this place.
I went GF, DF,and later SF. These are the "inflammation makers". On top of all that I eliminated all fresh fruits and veggies (they are too hard on an inflamed gut). I also stayed away from peppers and tomato products. You may be asking "what did you eat?!" At first, I ate mainly meats, cooked veggies, rice and rice products, ground corn products, sweet potatoes, nut butters, canned peaches,apple sauce, avocados, and eggs. I use almond milk with GF cereal. Some of us can't have eggs though... and I was not doing well with white potatoes ( but most of us are fine with them). I call all of these foods "irritants".
Sounds daunting, I know. But know that if you do this along with the Entocort, you will eventually be able to taper the drug down AND ADD BACK IN MANY OF THE "IRRITANTS" once your gut heals. I can now eat small salads, beans, some tomato, some fruit....etc.
This process takes time and patience, but you can get your life back.
Good luck, ask as many questions as you need to, and keep us posted'
Leah
If you can afford the Enterolab testing, that will speed your food intolerance journey up. I was unable to use the tests ( because i am IgA deficient, so I don't produce the antibodies they are looking for), so I had to do it the old fashioned way - Elimination diet.
The combination of Entocort AND the diet is a great way to go and has worked great for me. I am down to one pill one day and two days off. It's taken me 5 months to get to this place.
I went GF, DF,and later SF. These are the "inflammation makers". On top of all that I eliminated all fresh fruits and veggies (they are too hard on an inflamed gut). I also stayed away from peppers and tomato products. You may be asking "what did you eat?!" At first, I ate mainly meats, cooked veggies, rice and rice products, ground corn products, sweet potatoes, nut butters, canned peaches,apple sauce, avocados, and eggs. I use almond milk with GF cereal. Some of us can't have eggs though... and I was not doing well with white potatoes ( but most of us are fine with them). I call all of these foods "irritants".
Sounds daunting, I know. But know that if you do this along with the Entocort, you will eventually be able to taper the drug down AND ADD BACK IN MANY OF THE "IRRITANTS" once your gut heals. I can now eat small salads, beans, some tomato, some fruit....etc.
This process takes time and patience, but you can get your life back.
Good luck, ask as many questions as you need to, and keep us posted'
Leah
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MaggieRedwings
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Welcome Chelsea.
I am one who uses diet alone - GF/SF/DF and the rest is in my profile. It took me longer than most but it was worth it. Along the way tried all of the meds and really got no good results until Entocort but had bad reaction on it so dropped it. You can do it and our family here can help you along the way.
Maggie
I am one who uses diet alone - GF/SF/DF and the rest is in my profile. It took me longer than most but it was worth it. Along the way tried all of the meds and really got no good results until Entocort but had bad reaction on it so dropped it. You can do it and our family here can help you along the way.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Thanks everyone for the warm welcome. I have been tested for celiac and that was negative. I also had a stool sample many years ago but showed nothing abnormal but I'm sure it wasn't tested for anything I'm concerned about. I'll check if our insurance covers the expensive testing.
I have to say I'm mostly scared and upset about eliminating fresh fruits and veggies as it makes up most of my diet. I pride myself on eating what I grow and the thought that those foods are my irritants is devastating.
I can contain my son Everett in our living room but he freaks out if he can't see me after awhile. I guess it's just the nature of the beast, he'll be fine I'm sure.
I go to the bathroom immediately in the morning several times. Does anyone else feel like this?
I have to say I'm mostly scared and upset about eliminating fresh fruits and veggies as it makes up most of my diet. I pride myself on eating what I grow and the thought that those foods are my irritants is devastating.
I can contain my son Everett in our living room but he freaks out if he can't see me after awhile. I guess it's just the nature of the beast, he'll be fine I'm sure.
I go to the bathroom immediately in the morning several times. Does anyone else feel like this?
Chelsea,You have stumbled onto the best forum. I don't have much else to add except to encourage you to address diet and maneuver around this site . . . we have talked about everything.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Hi Chelsea and welcome. For most of us the elimination of the fresh fruits and vegetables is just a temporary thing, enabling the guts time to heal. When things settle down you should be slowly able to reintroduce a lot of it. Also, I doubt the stool testing you had was the same as that offered by Enterolab. It checks for antibodies to the major irritants. Most of our insurances didn't cover it. But you will find help here. Good luck. Deb
That's a typical way for someone with MC to start the day, so yes, that was always my morning routine, before I discovered the diet connection. The primary problems with fruits and vegetables are fiber, fructose, and sorbitol. After we reach remission, and our gut has had some time to heal, we can usually (slowly) add most fruits and veggies back into our diet.Chelsea wrote:I go to the bathroom immediately in the morning several times. Does anyone else feel like this?
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.
I didn't mean to scare you Chelsea, but like most have said, the elimination of fresh fruits and veggies is temporary ( and remember, you can still cook those yummy veggies you are growing). I totally get where you are coming from though. I am a personal trainer and was eating very "healthy" until this hit. It's hard to wrap your head around it at first.
I did want to add that when you said you usually feel worse when you go gluten free.... it dawned on me that you may have substituted GF baked products. Sometimes the ingredients to these processed foods gives us D. I stayed away from them the first few months of healing, but can now eat GF bread and such with no problem.
Leah
I did want to add that when you said you usually feel worse when you go gluten free.... it dawned on me that you may have substituted GF baked products. Sometimes the ingredients to these processed foods gives us D. I stayed away from them the first few months of healing, but can now eat GF bread and such with no problem.
Leah
Hi Chelsea,
Welcome to the site! I see that you are already GF and DF (without relief). Something else out there has to be causing a problem. I really think you need to take a look at soy. Soy seems to be in everything, even when it makes no sense that it is in a product. Read labels. Check out the various diets (SCD, PALEO, and GAPS). They are pretty much all on line somewhere. Most even have "legal" food lists that you can use as a starting point. Keep a food diary and note your symptoms that day (and of course what the foods do by the next morning).
My doctor is taking me off of Entocort at the end of August as that will be a total of 5 months on it. In spite of the Entocort, I still have bad days and record all of it, and keep trying to figure out food problems. I seem to do best LF, GF, SF (and a few other items are suspect). Legumes seem to be a problem for me (beans, peas, lentils,and all soybean products). Oddly enough, I seem to be OK with natural peanut butter. Everyone is different!
Good luck with the challenge of figuring it all out! Keep asking questions, as others on this site have far more knowledge than myself. I am only a few months in. Like yourself, I have CC.
Marion
Welcome to the site! I see that you are already GF and DF (without relief). Something else out there has to be causing a problem. I really think you need to take a look at soy. Soy seems to be in everything, even when it makes no sense that it is in a product. Read labels. Check out the various diets (SCD, PALEO, and GAPS). They are pretty much all on line somewhere. Most even have "legal" food lists that you can use as a starting point. Keep a food diary and note your symptoms that day (and of course what the foods do by the next morning).
My doctor is taking me off of Entocort at the end of August as that will be a total of 5 months on it. In spite of the Entocort, I still have bad days and record all of it, and keep trying to figure out food problems. I seem to do best LF, GF, SF (and a few other items are suspect). Legumes seem to be a problem for me (beans, peas, lentils,and all soybean products). Oddly enough, I seem to be OK with natural peanut butter. Everyone is different!
Good luck with the challenge of figuring it all out! Keep asking questions, as others on this site have far more knowledge than myself. I am only a few months in. Like yourself, I have CC.
Marion