A full recovery

[nick]

Hi...I have been symptom-free for the best part of a year now. I take no medication and follow no special diet. I eat gluten, dairy, lots of fruit and lots of vegetables...I eat anything I want!
My history? Late in 2011 I started a bout of watery diarrhea. When it didn't go away, I visited my doctor and fairly quickly was seen by a specialist who did a colonoscopy with biopsies. The biopsies revealed Microscopic Lymphocytic Colitis throughout the colon in multiple sites.

Drug therapy followed which didn't work. My specialist and I came to an agreement that, rather than go on to stronger drugs with side effects, I would try to live with the symptoms so long as they didn't trouble me too much. This was more or less ok to begin with but became boring after a while. I looked for alternatives and found out about gluten-free. Following a gluten-free diet was not difficult for me as I work from home and I was able to make my home a safe gluten-free zone.

After a fashion it seemed to help but I still suffered terrible flare-ups. I found this forum and was horrified and deeply depressed to find that gluten-free was only the beginning of a radical diet for most people. And for everyone it seemed as if there was no alternative to lifelong vigilance and avoidance of a bewildering array of foods.

For two-and-a-half years I followed a very strict gluten-free diet but I was never totally symptom-free. I tried selectively cutting out all sorts of foods, often eating a very limited diet for long periods to try to isolate the "problem food". All to no avail. Then, at the beginning of 2016 I had such an almighty flare-up that I went back to my doctor to ask to be put on strong drugs, whatever the side effects. But the flare-up was found to be nothing more than a Campylobacter infection, albeit a vicious one and it lasted a full 6 weeks. Shortly after this I had another flare-up and went back to my doctor to find out if it might be Campylobacter again. The test proved negative but my doctor suggested another celiac test. This meant eating gluten again for 6 weeks. Not wanting to have a "borderline" result I ate gluten morning, noon and night with absolutely no ill-effect. By this point my flare (they usually last about 6 weeks) was subsiding and it continued to subside as it usually would. The celiac test proved negative and I have continued to eat gluten ever since. I feel so much better now. Most of the troublesome minor symptoms have disappeared and I am able to enjoy my social life again I even went skiing this winter...imagine trying to get out of salopettes in a hurry!

I think it is important to make this point. The members of this group are, necessarily, those with ongoing symptoms and are therefore a self-selecting group. They may not accurately represent the majority of people's experience with the condition. Positive outcomes, such as mine, are therefore unlikely to be represented in these posts and the representation of the condition as lifelong and complicated to manage might not be entirely accurate.

If you are reading this as a newly diagnosed sufferer of Lymphocytic Colitis, I hope you will find a way to manage the condition. In my case, it took a long time but I am fine now. I don't believe diet had a part to play although my wife believes that gluten-free helped my gut to heal. I don't know...and I don't think anyone else does either.

[tex]

Hi Nick,

You lucky devil! Congratulations. Sometimes weird things happen to change the course of our life. It's difficult to say what has happened, but if I had to guess, I would suspect that the Campoylobacter infection, plus the antibiotic treatment to eliminate it somehow changed your gut bacteria balance to a fortunate arrangement that changed your genetics, and that resolved your digestive issues.

It's well known that gut bacteria can change our genes, but unfortunately we don't yet know how to use that trick to our advantage. So at this point, trying to manipulate them amounts to pot luck. But you may have won the jackpot in the gut bacteria shuffle.

Or there may be some other reason for your miraculous recovery. Who knows? Nothing surprises me any more.

At any rate, I hope your remission continues forever, and thank you for posting an update.

Tex

[Erica P-G]

Great post Nick!

I hope to one day get my bacteria in agreement....until then I keep healing and enjoying my bristol 4-5 right now I think stress is what does me in a lot of time so for now diet change isn't hurting me one bit

So happy for your wonderful turn of events for your life that is simply spectacular!
Cheers
Erica

[Marcia K]

Wow Nick, that's wonderful that you can eat normally again. At three years post-diagnosis my stools are almost completely normal but a little bit of hidden gluten makes me feel like I was hit by a bus. I think your story is not the norm for our group, but I'm happy for you.

[brandy]

Hi Nick,

Thank you for taking the time to post! I am really glad that you are doing well and shared your story!

Nick said,

I think it is important to make this point. The members of this group are, necessarily, those with ongoing symptoms and are therefore a self-selecting group. They may not accurately represent the majority of people's experience with the condition. Positive outcomes, such as mine, are therefore unlikely to be represented in these posts and the representation of the condition as lifelong and complicated to manage might not be entirely accurate.

This is very true of internet forums and I think it is a real valid point. The folks that are doing well drop off the forum and are not posting.

I hope you are enjoying the yummy European cheeses!

Brandy

[nick]

Hi...thanks for the messages...in reply to Tex, I didn't take antibiotic (or anything else) for the Campylobacter. But I also wonder if it may have been the catalyst for my recovery.

My colitis began with a gut infection, very probably Campylobacter. I have minimal understanding about how these things work but I believe that when you have a gut infection, your body recognises this and sends a "message" to your colon to produce lymphocytes in order to get rid of its contents without absorbing any pathogens. When the infection is over your body (here I enter the realm of speculation) sends another message to tell it to stop producing lymphocytes. Except in my case, for some reason the message didn't get through. After a while, the messages ceased to be sent and I was left producing these troublesome lymphocytes ad infinitum. Years later, I get another infection and, when it is over this time, my body once again sends the message to stop producing lymphocytes and this time it is successful. Whatever was blocking the message telling my body to stop producing lymphocytes is no longer active.

As I said...I am no expert!

Good luck to you all
Nick