The Latest Newbie - With Just a Few Questions

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TheNutmegger
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The Latest Newbie - With Just a Few Questions

Post by TheNutmegger »

Hi everyone. First off, I have to tell you how grateful I am to have come across this site. The community is amazing and you all are quite knowledgeable (and most importantly genuinely caring).

As someone who was just recently diagnosed with MC, I just had a few questions that I couldn't seem to find anywhere else on the web. Before I get to that, a bit about myself. I'm a 32 y/o male, am generally healthy (or at least I'd like to think I am), and eat "Paleo" almost always (a result of getting peer pressured into it by a recent Crossfitting roommate).

After a trip to the ER two months ago for severe cramping in my gut (and years of semi-frequent [1-2x/yr] bouts with what I thought was "food poisoning") I was referred to a GI who suggested that I have an endoscopy and colonoscopy done. The results of the colonoscopy showed that I had MC. He asked if I have frequent diarrhea, to which I answered no, and then told me to not worry about it and let him know if I ever did start having diarrhea.

That said, I wasn't quite content with his response, and did have a couple of questions which I wanted to reach out to the group with.
  • -I've never had the diarrhea symptoms that seem so common. However, does the disease get worse over time?
    -Are there cases of MC going away completely? (Where a biospy won't even show MC anymore)
    -Other than eating Paleo (which I'm "A-OK" with) are there any other things I should be doing to prevent any further symptoms?
Thanks so much!
Jonas
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Post by Jonas »

Welcome TheNutmegger,

I do not have any diarrhea, most of us do but far from all.

To answer your questions:
I have not heard that it gets worse over time, but you can get additional autoimmune diseases if you do not improve your lifestyle, diet and so on and treat the disease.
Yes it can go away, (but it can take years) and you will always have the disease, so it can start again later in life.
There is much you can do, where paleo diet is a good start, from there, you look up what food makes you feel good and which one makes you feel worse (personal paleo).
Stess management, good sleep, exercise, sunshine, supplements such as vitamin D, zinc, magnesium is recommended.

There is much information on the forum about all sorts of issues.

Once again welcome
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JFR
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Post by JFR »

The experience of people here is that, as Jonas says, most people have diarrhea, but not everyone. Pain, nausea and constipation can all be symptoms too. Clearly, if your symptoms were severe enough to send you to the ER than this is not a minor problem for you. My exerperience is that after literally decades of a variety of gastrointestinal symptoms which included diarrhea, constipation and nausea and which I would typify as mild to moderate, things got much much worse, to the point where I could not leave the house and I was living my life in the bathroom with severe diarrhea all day and night. I believe that the course of this disease can vary from person to person. The best thing you can do now is look for your food triggers as well as all the other things Jonas suggest.

Paleo is a very good place to start but even on a paleo diet you may be eating foods that you are sensitive to. The big 4 foods that people react to are gluten, dairy, soy and eggs but it is possible to be sensitive to other proteins as well. I, for one, cannot eat chicken or beef, along with having to avoid, 100%, the big 4. So look at your paleo diet and try to determine if any of the foods you are eating could be causing you problems. If you are eating a lot of eggs that might be a place to start. Plus make sure that you are 100% compliant with the no dairy, no gluten no soy aspect of things. I find being 100% grain free to be very helpful but many people here eat some grains, just not the ones that contain gluten. If you are eating strictly paleo you will not be eating any grains. Fiber can really irritate your system so you might want to minimize the amount of fiber you consume. I eat a low carb ketogenic paleo diet because that is what works best for me and I believe it is a very healthy way to eat. Certainly that is not the way others here eat. We each have to find our own way through this.

To figure out your food sensitivities you can either use an elimination diet, choosing 4 foods you believe are safe and sticking with that for a month or so and then slowly adding things back or you can have the Enterolab testing done which will help determine much what your system is reacting to. I found Enterolab testing to be very helpful and certainly worth the cost. Tex, our resident guru, has written not only the best book on MC, but the only book. There is a link to it in the upper right hand corner of this page. If you don't already own it, it is well worth buying.

I think you are wise in wanting to find out everything you can about MC and taking as much control as you can of things now, so you never find out how much worse it could possibly get.

Jean
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Post by seeljanerun »

Welcome :) Although, at the same time, sorry you needed to find this community in the first place! I am 25 and have had chronic D for 9 years. I spent a long time just living with the symptoms and not knowing what was really going on; when I finally did figure it out, I bought in to the western medicine paradigm of "just take a pill and move on with life". None of the prescribed medications ended up giving me relief.

I would say the main things you need to think about are stress and inflammation - how are you managing stress in your life? what could you do better? Are you sleeping well? how are your relationships? your job? do you binge eat? do you over-excercise? do you smoke? are you naturally very anxious? Are you too sedentary? Do you have time for the things you love?
Basic lifestyle factors are often overlooked when we are looking for a solution to our health problems, but they are often critical parts of the onset-progress of a disease. If you can begin to become aware of these things now and make changes to support your mental and physical health, I believe you will have a much better chance of not having increased issues with the colitis down the line.

And then of course, like Jean said, you have to consider what foods you could you be eating that could be irritating your body. Start with the basics - if you're not 100% paleo (i.e. you have a cheat day or eat processed foods still), I'd start there. Eliminate the most common allergens - like soy, dairy, eggs, gluten, etc. I was paleo for a year and a half or so and couldn't understand why my diarrhea was so horrible (this was before I found this community), but I was eating a ton of eggs, nuts, vegetables and fermented foods my body couldn't handle. So, be sensitive to that. The paleo diet is a wonderful thing, but we are all individuals and even if bacon and nuts and green leafy vegetables are the holy grail of paleo food, they aren't going to work for everyone (sadly, I'm speaking of myself, ha).

Start a food journal if you can. That can be helpful in figuring out when you have episodes and what might be triggering them. It doesn't seem like you need to do a full-on elimination diet at this point if you hardly ever have symptoms, but you can also consider that as an option. There is lots of information on this board about that.

There is a test by a company called Enterolab, which you can also read about on this board, but many of us have done that to determine major food sensitivities. I knew that gluten, eggs, dairy and soy were most likely problematic, but it took getting the results back from my enterolab test to really motivate me to try to change my diet: I needed to see it in black and white in front of me, as I've always been a food lover.

I wish you luck as you try to figure this whole thing out - it can be quite the rabbit hole.
Jane
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tex
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Post by tex »

Hi Nutmegger,

Welcome to our internet family. My symptoms began the same way as yours — I kept coming up with what I thought was food poisoning. I would be sick for a week or 2, and then I would be fine for a while. This went on for a couple of years, and eventually I was getting sick on an average of about once a month. That's when I began to suspect that it might be something besides food poisoning. :lol: Then one day the diarrhea started and wouldn't stop. A week or 2 of Pepto-Bismol just turned the D into black water, so that's when I finally caved in and went to see a doctor, expecting to receive a diagnosis of colon cancer. My doctor didn't disappoint me with the diagnosis, but fortunately he was wrong, and so was the GI specialist who agreed with the cancer diagnosis.

You've received some excellent responses, so I'll just address your last question:
TheNutmegger wrote:are there any other things I should be doing to prevent any further symptoms?
Most people in that situation, especially after being told by their doctor to "not worry about it", would probably never consider taking additional precautions unless the D actually became a problem. I admire your perceptiveness and your logical thinking. And you are quite correct — the absence of clinical symptoms does not guarantee that antibodies are not being produced, and inflammation is not being promoted. Uncontrolled inflammation sets the stage for the development of all types of chronic disease. Without inflammation, chronic disease cannot develop, so it appears that the best thing we can do to insure our long-term health is to minimize inflammation.

It can be extremely difficult to track down food sensitivities in the absence of clinical symptoms, but sometimes it can be done by avoiding a food for a while, and then reintroducing that food into the diet again. Sometimes this will prompt a clinical response. It doesn't always work, though, depending on the length of time the food is avoided, the residual level of antibodies, and the current status of certain parameters within our immune system . The surest way to track down food sensitivities to which we are asymptomatic is to order a stool test from EnteroLab.

By doing that, I found out that even though I was asymptomatic to casein (dairy), I was producing antibodies to it. Because of that test result, I didn't have to wonder whether I should cut it out of my diet, that decision became a no-brainer. After I did that, my osteoarthritis faded away, so clearly I wasn't totally asymptomatic (initially, I was only considering GI symptoms). The bottom line is that the proper diet changes can sometimes correct health problems that we may not even associate with food sensitivities, and in some cases, the changes may resolve health issues that we may not even be aware of, especially those that might loom in our future if we don't make changes long before that day arrives.

And everyone who mentioned stress is right on target, of course. Stress is not only a primary cause of MC, but an essential part of the development of any autoimmune disease, IMO. Anything we can do to minimize stress in our life will go a long way toward not only preventing relapses of MC, but also the prevention of the development of other AI diseases.

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

Tex
:cowboy:

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.
TheNutmegger
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Post by TheNutmegger »

Thank you all so much!! For the information, yes, but also for knowing that there are others out there with dealing with this. I'll be sure to keep you updated as I begin my journey - and will absolutely reach out with new questions. You guys are all so welcoming. :) Thank you.
Marcia K
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Post by Marcia K »

Welcome, Nutmegger. I really can't add much to the above responses except I would highly recommend the EnteroLab testing. The foods that I was eating a lot of and didn't think were causing me any issues are the foods to which I showed the most reactivity. I am glad that I didn't wait any longer than I did to do the testing. I just passed the one year mark of my symptoms beginning and I am doing much better but still figuring out what I can and can't eat. Good luck on your journey. You have come to the right place for help.

Marcia
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