Newbi/ Trying to put the peices together

Frederick Taylor · Post by **Frederick Taylor** » Mon Aug 24, 2015 8:43 am

Hello folks, My name is Frederick Taylor I am 57 from Dallas Tx, I had been diagnosed with MC four years ago and put on Budesonide ( steroid ) for about 3 years. Now with new Doctor from the VA hospital , he put me on Loperamide which works for diarrhea ok. I am confused with what's going on in my life. Let me start here, my job was very stressful , I was refinishing high end automobiles ( on commission ) which had to be perfect all the time and on time (stressful)and last year I couldn't take it no more and had quit (mistake ?). I knew something was going on with the way I was thinking and that it had something to do with MC, I couldn't do my job as well anymore and managers where getting on me all the time, I had told them about my meds I was on and I will be seeing doctor soon again he maybe will give me something else to get me back on track. That didn't matter to managers and they wanted me gone anyway , the damage had been done and now there were squeezing me ( making it hard for me) to even want to be there. Instead of going (postal) I quit and nothing has been going to good. My energy level is almost gone, I worry about everything, cant concentrate that good, I have a short fuse, body aches, muscle aches , get tired out easily , etc.. All this was going on at work also and all started when the diarrhea appeared 4 years ago. I think that they are linked together and my old Doctor should have connected the dots. Now out of the best job I ever had after ( 15 years at same dealership)its all gone. I want to get my energy back and start thinking clearly , I want to quit worrying and find a decent job again, I don't know if I can do that type of work again, Lost my health insurance , going to VA center now ( VETRAN) I did pay my home off and started my own little business refinishing and restoring antique radios. My interest in hobby's has suffered and all these negative things that have made my life miserably I think have something to do with this MC. I wish my old Doctor could have seen better( listened) the things I was going thru and connected the dots and maybe just maybe I would have not lost my job . Please any thoughts on this matter is welcomed . I need to get feeling better ASAP

humbird753 · Post by **humbird753** » Mon Aug 24, 2015 1:21 pm

Hi Frederick - Welcome to this forum. You have come to the right place to get answers to get your life back. I am wondering (since you didn't say anything about it), have you eliminated any foods from your diet in addition to being on Budesonide? Most if not all of us have developed an intolerance to gluten. The second food trigger would be casein (protein in dairy), then possibly soy, and then eggs. I was just like you in that I had literally no energy, had difficulty thinking, and was running to the bathroom 20 to 30 times a day. I found out through Enterolab testing that I was sensitive to gluten and dairy. Since I have eliminated those from my diet, I have improved tremendously. I have regained my energy. I am so grateful for this forum. There's a book entitled "Microscopic Colitis" shown on the upper right-hand corner of this page. That book has helped me get a better understanding of what MC is about. Others will chime in with additional helpful information.

Paula

Post by **tex** » Mon Aug 24, 2015 7:20 pm

Hi Frederick,

Welcome to the group. Most of us have had the same symptoms that you described when our MC was active, and we have felt the same way that you are feeling. As Paula suggested, we control our symptoms by eliminating certain foods from our diet, because those foods cause the inflammation that causes the symptoms that you are having.

Those foods cause our immune system to produce antibodies that trigger the reactions, so since this is an autoimmune reaction, we have to avoid even tiny traces of all of the foods that cause us to react. It takes a long time for the damage in the intestines to heal, but if we stick to our diet, and read food labels carefully, to make sure that they are safe before we eat them, we can get our health back.

MC is a tough disease to control, so we have to be very careful about what we eat, 100 % of the time. But if we do that, we can control the disease without any medications.

Again, welcome aboard, and please feel free to ask anything.

Tex

Frederick Taylor · Post by **Frederick Taylor** » Mon Aug 24, 2015 8:21 pm

humbird753 wrote:Hi Frederick - Welcome to this forum. You have come to the right place to get answers to get your life back. I am wondering (since you didn't say anything about it), have you eliminated any foods from your diet in addition to being on Budesonide? Most if not all of us have developed an intolerance to gluten. The second food trigger would be casein (protein in dairy), then possibly soy, and then eggs. I was just like you in that I had literally no energy, had difficulty thinking, and was running to the bathroom 20 to 30 times a day. I found out through Enterolab testing that I was sensitive to gluten and dairy. Since I have eliminated those from my diet, I have improved tremendously. I have regained my energy. I am so grateful for this forum. There's a book entitled "Microscopic Colitis" shown on the upper right-hand corner of this page. That book has helped me get a better understanding of what MC is about. Others will chime in with additional helpful information.

Paula

Hello Paula, I see your from Wisconsin, I grew up in Milwaukee near Billy Mitchell airport . I don't recall the doctor telling about going to change the way it eat other than staying away from fried foods. My new doctor said basically the same thing, I'm wondering why they didn't check me out better or listen to some of the symptoms as I described. It seemed like they just wanted to know if the diarrhea stopped. I told the doctor how I was feeling even after taking the steroids. He said the medication doesn't cause those symptoms and blew it off and said something else was causing it. By doing more research on MC I'm seeing myself in other people that have MC . I'm trying to connect the dots like the doctor should have. I thought I was going nuts, I worry all the time, can sit still, tired a lot, body aches, muscle aches, right arm hurts when I sleep and some times it hurts so bad it wakes me up, I'm snappy at my wife and others, losing my patience easy etc.. I am going to get that book and start doing what I need to. This sucks having this MC, I'm am going to the VA next month for follow up on the MC, should I try to get some test,s done to see what I should stay away from in the foods I eat?( If )the first doctor got me going on a food regiment I may have been able to tolerate the job I had and not quit? That part of my life is history and I need to go forward and get better because I have a ways to go yet before I can draw my SS if its still there in 5 years. I am sick and tired of being sick and tired and I think this MC is causing it. Is there any thing you can think of what I should say or ask the Doctor when I'm there for follow up? Thanks, Frederick

Frederick Taylor · Post by **Frederick Taylor** » Mon Aug 24, 2015 8:44 pm

tex wrote:Hi Frederick,

Welcome to the group. Most of us have had the same symptoms that you described when our MC was active, and we have felt the same way that you are feeling. As Paula suggested, we control our symptoms by eliminating certain foods from our diet, because those foods cause the inflammation that causes the symptoms that you are having.

Those foods cause our immune system to produce antibodies that trigger the reactions, so since this is an autoimmune reaction, we have to avoid even tiny traces of all of the foods that cause us to react. It takes a long time for the damage in the intestines to heal, but if we stick to our diet, and read food labels carefully, to make sure that they are safe before we eat them, we can get our health back.

MC is a tough disease to control, so we have to be very careful about what we eat, 100 % of the time. But if we do that, we can control the disease without any medications.

Again, welcome aboard, and please feel free to ask anything.

Tex

Hi Tex, I am going for a follow up on my MC next month, the doctor is a young guy, he may not know all of what this MC does or the symptoms that I have are causing my depression and weakness etc.. What can I do while in there to get him to understand that this MC is causing my problems other than some diarrhea. I am going to stay on this forum so I can learn more about ,and treating myself so I can function properly again. Thanks for your input . Frederick

Post by **tex** » Mon Aug 24, 2015 9:26 pm

Fredrick,

The sad truth is that only a few GI specialists are just now beginning to realize that our diet has anything to do with our MC symptoms. For decades they denied that diet had anything to do with MC, and that information isn't covered in their medical training. This discussion board has been here for over 10 years now, and some of the long-time members here were pioneers in learning how to treat MC by diet changes, along with Dr. Ken Fine at EnteroLab, who has MC himself. He developed the EnteroLab stool tests for determining food sensitivities, and he is the doctor who developed the Pepto-Bismol treatment for MC.

To be honest, I would be very surprised if you will be able to find a doctor at the VA who understands how to properly treat MC. But if your new doctor is young, and has an open mind, there is a much better chance that he may know more about treating this disease. Let's hope that you will be lucky.

We created this discussion board many years ago, because we were unable to get any help from our doctors, and like you, we were sick and tired of being sick and tired. So we got together here and discussed our experiences and compared notes, so that we could see what works for others, and what doesn't work. Some of us here have been in remission for over 10 years now by diet changes alone. Others here use a combination of diet changes and medications. We are all different, so we each have to work out a treatment program and diet that works best for us.

You're very welcome,
Tex

JLH · Post by **JLH** » Tue Aug 25, 2015 6:37 am

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humbird753 · Post by **humbird753** » Tue Aug 25, 2015 7:30 am

Hi Frederick - I agree with Tex in that most doctors do not know how to treat MC. Most doctors also do not agree that foods we are eating are the cause of our problems. The most reliable tests for food sensitivities is through stool testing which is done at Enterolab in TX. The blood tests the doctors do are not sensitive enough to show gluten sensitivity until way too much damage has occurred. If you can afford it, I would recommend at least the A1 panel testing (gluten, dairy, soy and eggs) from Enterolab. It would give you a start. If you can't afford the testing, I would recommend eliminating gluten and dairy for sure, and soy. I was fortunate and didn't test sensitive to eggs. I found it easiest to avoid all processed packaged and most canned items, and ate whole foods (i.e., meats, potatoes, rice, well-cooked veggies at least for now, applesauce, bananas, plain rice cakes, nut butters, sweet potatoes are great and have a lot of nutrients). Many here stick with a very simplified diet often of chicken, rice/potatoes, well-cooked veggies, and introduce additional foods (one at a time) after maybe a month. When adding additional foods, it's best to try a small amount of the new food for at least 3 days to see if you are reacting to it. When I started my diet changes, it took several weeks to notice changes. Another thing most of us do is make our own bone broth because it has a lot of healing properties we need.

Sorry I can't write further at this time, but heading out to work. You will definitely benefit from reading the book I recommended.

I hope you're having a good day.

Paula