Hi! Please be patient while I explain what happened to me. My wife and I went out for dinner one evening. Had fish and fries. That evening she has loose stool and the next day I get it. That was Jan. 17. After a week or so and starting to have weight loss I contact my primary care Dr.. He puts me on Flagil and Bactrim since I have a hx of diverticulosis. After about 3 days of the antibiotics and getting severe gas my heart goes into Afib. This will be the 4th time that has happened and each time it has been directly related to me having severe abdominal bloating. Needless to say it involved a stay in the hospital and now I am on Multaq, Cardizam, Bystolic for the cardiac issues. Still having diarrhea. CAT scan of the abdomen shows all is normal. Finally get to see a GI Dr. and he puts me on an antibiotic for 3 days. No relief. He also has me wean off Omeprazole which I was on since 2011 for severe gastritis. Finally he agrees to do a upper and lower GI. End result is he tells me I have Collagenous Colitis. Still having diarrhea. He then puts me on Sulfasalazine and Folic acid. I do the 30 days of the Sulfasalazine and the diarrhea finally stops. During this period they tell me I can eat regular, but when I tell them about the continued gas and bloating they say well you may want to try GF. Did that for a week or two, some but not a lot of real improvement. Back to the GI DR. and get to see the PA. They now think because of the gas I have an infection. They put me on Xifaxan for 10 days. Thank God for free samples. It was going to be $450 for the scrip. Back to see the PA and talk about how I still am having the gas, etc. and then its well it sounds like you have GERD. Now I have been taking Dexilant for 10 days. Helps with the gas, etc. I have been trying to stay GF during this time also. The other day I had an English muffin and a sandwich with Rye bread and guess what. Gas is bad again and now I am back running to the bathroom. I started back on a second scrip of the Sulfasalazine and Folic acid today.
There are times when I get this God awful feeling in my chest and it seems to all be coming from my belly. I know from reading some of the posts that many of you have it a lot worse than me. I have always been an active person and weighed 215 lbs. when this started. I now am down to 193 lbs. I have lost most of my muscle mass and needless to say the clothes don't fit well anymore. Great way to lose weight!
I don't know which way to turn right now. I certainly don't feel like I am getting enough nutrition and am at a loss as to what I can eat. Any advice will be appreciated.
Again, sorry for the long post!
Gary
New to CC and needing help
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Welcome to the group Gary.
Your journey so far sounds very familiar several of us have gone through the same routines trying to get a proper dx and treatment.
I am fairly new here too. Got the Enterolab tests and am now GF, SF, EF, and DF.
It seems to work best to keep to a simple diet plain meats and veggies peeled and overcooked.
If GF seemed to help then obviously that is a starting point.
I'm sure some more experienced people will chime in soon.
Your journey so far sounds very familiar several of us have gone through the same routines trying to get a proper dx and treatment.
I am fairly new here too. Got the Enterolab tests and am now GF, SF, EF, and DF.
It seems to work best to keep to a simple diet plain meats and veggies peeled and overcooked.
If GF seemed to help then obviously that is a starting point.
I'm sure some more experienced people will chime in soon.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
-
MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
Welcome, Gary!Whew, your body is putting you through the wringer! But you can get your life back! Though it won't be the same life, it can definitely be even better! It sounds like you already know what you need to do--drop the gluten, and possibly other things like dairy and soy. A couple of weeks gluten-free will not make much (if any) difference. Many times it's only after some time GF that any improvement is seen. Also, cross-contamination can be an issue. Iron, aluminum, and wood can become gluten-impregnated, so if you prepare or cook food with them you will still be exposed. And oats don't have gluten, but are usually cross-contaminated as well as having a protein that is extremely similar to gluten and often causes the same reaction.
I suggest you go to a very simple diet to start calming your gut. My go-to is chicken soup: chicken, broth, and carrots. Sometimes applesauce. Some people can tolerate rice and some can tolerate potatoes. It depends on your gut, and we are all different.
As you can see from my signature, I was diagnosed with CC in 2010. I was in pain a lot and had heartburn 24/7. Now I rarely have pain and heartburn only comes when I have eaten something by accident that my gut doesn't like. Brain fog is also a thing of the past, and there have been other benefits. I'm not a doctor, but I wouldn't be surprised if your cardiac issues subside and/or are much easier to medicate.
Welcome again, and please feel free to talk about or to ask anything. We are all family here.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Welcome Gary.
If you are prepared to take things into your own hands and really do the elimination diet thing, then we all can help you get your gut health better and your life ( and weight ) back.
Please know that doctors will continue to throw drugs at you… sometimes drugs that can make things worse. Most of them are clueless as to the food/symptom connection ( eye roll).
One diet does not fit all BUT we all very similarities. When the colitis gene was triggered, so too were most of your food intolerances. Many proteins have similar amino acid chains, so they "look" alike to your system- that is trying to fight off the invader. That leads to an inflammatory response that will not let up until you stop eating the foods that are triggering it.
Almost all of us can not have gluten. Most of us can not eat dairy ( and anyone with gut issues can not break down dairy). The next most common is soy, and then eggs. If you want to be tested for sure, google ENTEROLAB. It is accurate.
Then there are the other foods that are not intolerances, but for now, can cause major intestinal distress. Some of those would be RAW fruits and veggies, acid foods like citrus and tomato products, beans and legumes, caffeine maybe, sugar and sugar substitutes.
I can eat white rice and corn products. Some of us can't.
I know what you mean about being an active person. I was dx over two years ago. I'm a certified personal trainer/nutrition specialist and at first struggled with the "lack of nutrition" my new diet had. But what is best for you right now is to figure out what your offenders are and stop eating them. Your immune system lies in your gut. So what is the most healthy thing for you right now? Eat clean fresh food that you prepare yourself and let your gut heal! This takes time. Getting all the gluten antibodies clear of your body can take 4 months! I took a drug called Entocort ( budesonide) for 6 months while I also changed my diet. It's the most common one prescribed for us. Since I weaned off the drug, i have been progressing nicely and have been able to add many of the "irritants " back into my diet. There is hope! my healing diet consisted mostly of meats, eggs, cooked veggies like carrots, squash, and green beans, white rice, GF Chex cereals with almond milk, almond butter on rice cakes, a little apple sauce, avocados, and olives… and corn tortillas. I also only used olive and coconut oils. We are all different in the fine tuning, but it's important to stick to a simple diet for a while.
You might want to buy Tex's book on MC. it's a great source of info. Just click on the picture of it in the upper right hand corner and you will be in Amazon. You probably will be hearing from Tex soon. he's the best.
Well, I think I've given you a place to start. When your gut heals, may of your other intestinal problems will ease up also.
Good luck and let us know how you are doing.
Leah
If you are prepared to take things into your own hands and really do the elimination diet thing, then we all can help you get your gut health better and your life ( and weight ) back.
Please know that doctors will continue to throw drugs at you… sometimes drugs that can make things worse. Most of them are clueless as to the food/symptom connection ( eye roll).
One diet does not fit all BUT we all very similarities. When the colitis gene was triggered, so too were most of your food intolerances. Many proteins have similar amino acid chains, so they "look" alike to your system- that is trying to fight off the invader. That leads to an inflammatory response that will not let up until you stop eating the foods that are triggering it.
Almost all of us can not have gluten. Most of us can not eat dairy ( and anyone with gut issues can not break down dairy). The next most common is soy, and then eggs. If you want to be tested for sure, google ENTEROLAB. It is accurate.
Then there are the other foods that are not intolerances, but for now, can cause major intestinal distress. Some of those would be RAW fruits and veggies, acid foods like citrus and tomato products, beans and legumes, caffeine maybe, sugar and sugar substitutes.
I can eat white rice and corn products. Some of us can't.
I know what you mean about being an active person. I was dx over two years ago. I'm a certified personal trainer/nutrition specialist and at first struggled with the "lack of nutrition" my new diet had. But what is best for you right now is to figure out what your offenders are and stop eating them. Your immune system lies in your gut. So what is the most healthy thing for you right now? Eat clean fresh food that you prepare yourself and let your gut heal! This takes time. Getting all the gluten antibodies clear of your body can take 4 months! I took a drug called Entocort ( budesonide) for 6 months while I also changed my diet. It's the most common one prescribed for us. Since I weaned off the drug, i have been progressing nicely and have been able to add many of the "irritants " back into my diet. There is hope! my healing diet consisted mostly of meats, eggs, cooked veggies like carrots, squash, and green beans, white rice, GF Chex cereals with almond milk, almond butter on rice cakes, a little apple sauce, avocados, and olives… and corn tortillas. I also only used olive and coconut oils. We are all different in the fine tuning, but it's important to stick to a simple diet for a while.
You might want to buy Tex's book on MC. it's a great source of info. Just click on the picture of it in the upper right hand corner and you will be in Amazon. You probably will be hearing from Tex soon. he's the best.
Well, I think I've given you a place to start. When your gut heals, may of your other intestinal problems will ease up also.
Good luck and let us know how you are doing.
Leah
Hi Gary,
Welcome to our internet family. We consider ourselves a family because no one understands this disease unless they actually have it. It is much more complex and can be much more debilitating than most doctors realize. Your doctors continue to make guesses, because they understand very little about the disease, and even less about properly treating it.
For example, sulfasalazine is probably the poorest choice of medications that are currently available for treating MC. It's primary advantage is that it is cheap, because it's a very old drug. You are fortunate that you do not react adversely to it, because many people cannot tolerate it. That said, as long as it works for you, it's probably safe for you to take, because after your body converts it (from sulfasalazine to mesalazine), it provides the same active ingredient as Asacol, Colazal, Pentasa, Lialda, Apriso, etc., all of which are based on mesalazine (aka mesalamine), and all of which are much more expensive.
But remember that contrary to most doctors' understanding of the disease, medications can only mask the symptoms temporarily (as long as you take them). Soon after you stop taking them, your symptoms will relapse. The only way to stop the symptoms for good, is to stop the inflammation from being regenerated, and the only way to do that is as the other members recommended, by cutting those foods out of your diet, And we have to avoid even trace amounts of the foods that cause us to produce antibodies, otherwise we tend to continue to react.
You've already received a lot of helpful information, so I don't have much to add at the moment, but as Marliss mentioned — if you have any questions, never hesitate to ask, because we've all been through the process, and we realize that it requires hard work and dedication, and support from others in the same situation is the key to a smoother, faster recovery.
Again, welcome aboard.
Tex
Welcome to our internet family. We consider ourselves a family because no one understands this disease unless they actually have it. It is much more complex and can be much more debilitating than most doctors realize. Your doctors continue to make guesses, because they understand very little about the disease, and even less about properly treating it.
For example, sulfasalazine is probably the poorest choice of medications that are currently available for treating MC. It's primary advantage is that it is cheap, because it's a very old drug. You are fortunate that you do not react adversely to it, because many people cannot tolerate it. That said, as long as it works for you, it's probably safe for you to take, because after your body converts it (from sulfasalazine to mesalazine), it provides the same active ingredient as Asacol, Colazal, Pentasa, Lialda, Apriso, etc., all of which are based on mesalazine (aka mesalamine), and all of which are much more expensive.
But remember that contrary to most doctors' understanding of the disease, medications can only mask the symptoms temporarily (as long as you take them). Soon after you stop taking them, your symptoms will relapse. The only way to stop the symptoms for good, is to stop the inflammation from being regenerated, and the only way to do that is as the other members recommended, by cutting those foods out of your diet, And we have to avoid even trace amounts of the foods that cause us to produce antibodies, otherwise we tend to continue to react.
You've already received a lot of helpful information, so I don't have much to add at the moment, but as Marliss mentioned — if you have any questions, never hesitate to ask, because we've all been through the process, and we realize that it requires hard work and dedication, and support from others in the same situation is the key to a smoother, faster recovery.
Again, welcome aboard.
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 Gary, I'm sorry you are going through this. Leah gave you a good blueprint to get started and if you read other sections for newbies you'll find advice there too.
I have to say something about sulfasalazine. I took it and felt twice as sick on it, and improved when I stopped it. As far as I'm concerned, it's poison. When my GI doc found out my primary care physician had prescribed it she said "we don't even use that stuff. There are much more effective meds out there" and she prescribed Entocort (budesonide). This is a corticosteroid with a coating that doesn't dissolve until it's in your intestine. This way it applies the medicine at the location it's needed. Only about 10-15% of the steroid is absorbed by the body so side effects are minimized. I recommend you talk to your doctor about getting on Entocort (budesonide). It really is the med of choice. It will reduce the inflammation, but only the diet changes will help you heal.
What Entocort will did for me, besides reduce inflammation, is buy me time to get my diet in order (in addition to getting me back on my feet so I could get back to life). I eliminated gluten, dairy, then soy and after 4 months I was titrating off of Entocort. I did not have a relapse because I had made the necessary diet changes. Even with all this it took 2 years to heal and reach remission.
You'll find everyone here is willing to help- so feel free to ask anything. If it wasn't for the advice here I'd probably still be sick.
Wishing you well,
Carol
I have to say something about sulfasalazine. I took it and felt twice as sick on it, and improved when I stopped it. As far as I'm concerned, it's poison. When my GI doc found out my primary care physician had prescribed it she said "we don't even use that stuff. There are much more effective meds out there" and she prescribed Entocort (budesonide). This is a corticosteroid with a coating that doesn't dissolve until it's in your intestine. This way it applies the medicine at the location it's needed. Only about 10-15% of the steroid is absorbed by the body so side effects are minimized. I recommend you talk to your doctor about getting on Entocort (budesonide). It really is the med of choice. It will reduce the inflammation, but only the diet changes will help you heal.
What Entocort will did for me, besides reduce inflammation, is buy me time to get my diet in order (in addition to getting me back on my feet so I could get back to life). I eliminated gluten, dairy, then soy and after 4 months I was titrating off of Entocort. I did not have a relapse because I had made the necessary diet changes. Even with all this it took 2 years to heal and reach remission.
You'll find everyone here is willing to help- so feel free to ask anything. If it wasn't for the advice here I'd probably still be sick.
Wishing you well,
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
Welcome, sorry you are experiencing such grief. You have come to the right place. There are many bright minds here that can help you get back to living. I got sick Oct.2013, found this sight Apr.2014, cut the typical offenders out of my diet and have now been D free 3wks. "I can't stress enough how important diet is". I tried to test dairy in minute amount with poor result! I stick to my safe diet because I'm enjoying the D free life! I follow a very strict diabetic diet and now a very strict MC healing diet.
There is much hope for the future ! Hang in there. Take one day at a time.
Best wishes in your MC journey!
There is much hope for the future ! Hang in there. Take one day at a time.
Best wishes in your MC journey!
Diabetic DX June 2012
Diverticulosis/ MC DX Feb.2014
I am thankful for my struggle because without it I wouldn't have stumbled across my strength.
What are you willing to let go of so you can live the life you know you deserve?
Diverticulosis/ MC DX Feb.2014
I am thankful for my struggle because without it I wouldn't have stumbled across my strength.
What are you willing to let go of so you can live the life you know you deserve?
Thank you all for your words of support. Trying to deal with the Drs. is extremely frustrating and it certainly does appear that I will have to earnestly work on this situation myself. Gee, why don't they just make a pill to take this away? Since I already have started on the Sulfasalazine I will give that a try with eating nothing but GF and DF foods and see if there is any improvement. I will keep reading for additional info. I feel bad that my dear wife has to now deal with trying to figure out what to make me to eat. Is there a source for a menu of meals she can prepare? Thanks again!
Gary
Gary
Sorry to hear of your trouble, Gary. Unfortunately, because we all have different intolerances, there is "no one size fits all" kind of menu of meals, though there is a source of recipes on this site called, "Dee's Kitchen". Tex or someone who has been on this forum longer than I, can tell you the history behind it. However, you and your wife will have to figure out what triggers you by trial and error.
Enterolabs is another very helpful tool. The testing is expensive and most insurances don't pay for it, but many of us have found it very helpful.
I have often thought that those who do not like to cook are really at a disadvantage when confronted with this disease. It means A LOT of extra time in the kitchen. Once you get a good idea of what you can eat, it becomes easier, but the first year or so is pretty difficult.
Good luck to you and try not to get discouraged. It will not always be this difficult and you now have friends in this forum who support you!
Enterolabs is another very helpful tool. The testing is expensive and most insurances don't pay for it, but many of us have found it very helpful.
I have often thought that those who do not like to cook are really at a disadvantage when confronted with this disease. It means A LOT of extra time in the kitchen. Once you get a good idea of what you can eat, it becomes easier, but the first year or so is pretty difficult.
Good luck to you and try not to get discouraged. It will not always be this difficult and you now have friends in this forum who support you!
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
As Jane wrote, Dee's Kitchen contains hundreds of tasty and safe recipes. Dee is a professional chef who has MC, and she has personally perfected each of the recipes that she has entered there. Most of them are gourmet level recipes, and they taste just as good (and in some cases better) than the equivalent recipes made with conventional ingredients. Every recipe that she has posted is free of gluten, dairy, and soy. And she has also listed substitutes that can be made for eggs and other foods, on that forum. Note that other members have also listed recipes there, and while most of those recipes are also GF, DF, and SF, a few of them are not, so be sure to read the ingredients carefully when using those recipes not posted by Dee.Gary wrote:Is there a source for a menu of meals she can prepare?
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
When ordering EnteroLab tests, most members choose the Panel A1 + C1 combination, since it provides the most beneficial tests for the money, for most of us. This combination test will look for sensitivity to gluten, dairy, soy, and eggs (Panel A1), and almond, beef, cashew, chicken, corn, oat, pork, rice, tuna, walnut, and white potato (Panel C1). But various other tests and panels are available, in case you have other goals.
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.
Gary,
My story started like yours....my Mom and I ate out. We both had chicken wraps. We both got diarrhea, and while hers was not as severe as mine, I went to my PCP about 5 days later because I had never experienced anything like the symptoms I was having. After tons of tests, and everything showing that there was nothing wrong with me...I was sent to a GI Doc, had a colonoscopy, and was diagnosed with MC. That was a three month period from symptoms to diagnosis, and I weighed 92 lbs.
I didn't find this site for many more months, but I have to tell you that the combined knowledge of this group is life saving. Enterolab was pivotal in my recovery. Do you know anyone who lives in any states that surround NY, that you could get your samples to for mailing? I am in PA, but not close to the NY border.
Glad you found us!
My story started like yours....my Mom and I ate out. We both had chicken wraps. We both got diarrhea, and while hers was not as severe as mine, I went to my PCP about 5 days later because I had never experienced anything like the symptoms I was having. After tons of tests, and everything showing that there was nothing wrong with me...I was sent to a GI Doc, had a colonoscopy, and was diagnosed with MC. That was a three month period from symptoms to diagnosis, and I weighed 92 lbs.
I didn't find this site for many more months, but I have to tell you that the combined knowledge of this group is life saving. Enterolab was pivotal in my recovery. Do you know anyone who lives in any states that surround NY, that you could get your samples to for mailing? I am in PA, but not close to the NY border.
Glad you found us!
Linda :)
LC Oct. 2012
MTHFR gene mutation and many more....
LC Oct. 2012
MTHFR gene mutation and many more....
Gary,
Yes, unfortunately the medical lobbyists in New York state and Maryland have managed to secure a monopoly on the ordering of laboratory tests, and because of that, their respective state legislatures prohibit the citizens of those states from ordering any medical tests. Gotta protect innocent people from themselves, doncha know, by restricting their personal freedoms.
Most of the members of this site who reside in those states use the remedy mentioned by Linda. It's possible that your doctor might be willing to order the tests for you, but most doctors in those states probably tend to despise any labs that choose to offer tests direct to patients, so they refuse to patronize such labs.
Tex
Yes, unfortunately the medical lobbyists in New York state and Maryland have managed to secure a monopoly on the ordering of laboratory tests, and because of that, their respective state legislatures prohibit the citizens of those states from ordering any medical tests. Gotta protect innocent people from themselves, doncha know, by restricting their personal freedoms.
Most of the members of this site who reside in those states use the remedy mentioned by Linda. It's possible that your doctor might be willing to order the tests for you, but most doctors in those states probably tend to despise any labs that choose to offer tests direct to patients, so they refuse to patronize such labs.
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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Gary,
I live in southern Vermont and I helped one member of this site from Buffalo order the Enterolab tests. I believe that I ordered the tests in her name but sent to my address. I the mailed the test kit to her. She then mailed it back to me and I sent it back to Enterolab. I paid for the test on my credit card. She paid me through paypal. I would be happy to do the same for you.
Jean
I live in southern Vermont and I helped one member of this site from Buffalo order the Enterolab tests. I believe that I ordered the tests in her name but sent to my address. I the mailed the test kit to her. She then mailed it back to me and I sent it back to Enterolab. I paid for the test on my credit card. She paid me through paypal. I would be happy to do the same for you.
Jean