Lymphocytic Colitis back after 2 1/2 years!

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srocc20655
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Lymphocytic Colitis back after 2 1/2 years!

Post by srocc20655 »

Hi everyone,
I am new here to this board and am so very grateful it exists. Back in the summer of 2012 I was diagnosed with Lymphocytic Colitis after a colonoscopy and biopsy. I was able to get it into full remission after 2 months of high dose Pepto Bismol. I hoped that was the end of it. Not! Had a kidney stone last November and I guess my relapse could be from the Motrin and Aspirin I was taking. Foolish me. Got the big D back in early December. Went to ER because of stomach pain and D. CAT Scan looked perfect. Saw my gastro and he is recommending the usual Pepto, etc. Big D is almost gone but I have massive gas and bloating. Even mild nausea especially when I am hungry. Trying to figure out what to eat! Living on chicken, peas, Rice Chex and bananas. Thinking I will do Enterolab testing. Any advice on what test is best? Thank you all for being here. :lol:
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tex
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Post by tex »

Hi,

I'm sorry that you're having a relapse, but welcome to our Internet family. Hopefully you'll be able to find what you need here to get your life back, so that you can soon begin enjoying life again.

NSAIDs are indeed a very common cause of the inflammation that causes LC/CC/MC. You may have been the victim of a double whammy, though. It appears that the inflammation generated by kidney stones can also trigger an MC relapse. This opinion isn't based on published research — it's based on personal experience. Back in October and early November, I had a couple of kidney stones that showed up exactly 3 weeks apart. They didn't cause very severe symptoms, because they weren't very large, but immediately after the second one, I had an MC flare. And I haven't taken an NSAID in over 10 years. Fortunately, I've been in remission for over 10 years now, so the reaction only lasted for a few days, but there was no doubt that it was a bona fide MC reaction, because it even included the characteristic loud gurgling gut noises so unique to MC reactions. So together, you and I comprise a statistical study of 2 cases of kidney stones that resulted in a relapse of MC symptoms.

Regarding EnteroLab testing, most members order the combination of the A1 and C1 panels, because that gives them the most bang for their buck in terms of useful test results for the money. Those tests are usually the most reliable way to track down diet problems.

But you might be able to figure out a safe diet without the tests if you're willing to do a lot of trial and error testing. The trick is to first figure out a safe diet that will bring remission, because it's impossible to test new foods when we're already reacting. Whether you order the tests or not, let's see if we can figure out a diet that you may be able to safely eat until the test results are available, or until you are ready to test new foods by trial and error.

Some of us are sensitive to chicken, but interestingly, virtually no one here seems to be sensitive to turkey and lamb. So those are 2 possible meats that can usually be used as the basis of a safe exclusion diet. If you happen to be sensitive to soy, then you will almost surely be sensitive to peas and most other legumes, so I would cut the peas, and exchange them for possibly peeled, well-cooked squash, or carrots, or cauliflower, for example. Sweet potatoes are usually safe, and many of us can tolerate regular potatoes (red and yellow potatoes are easier to digest than russets), but some of us have problems with them. Rice is safe for most of us, and many of us (but not as many of us) can tolerate corn. Bananas are usually safe, but you may have to limit the quantity, because fiber can definitely be a problem for anyone who has MC. The less fiber in our diet while we are recovering, the faster we tend to recover. And too much fiber can be so irritating to our already hypersensitive gut that it can prevent remission even if we avoid all the foods that cause us to produce antibodies.

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.
srocc20655
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Location: Michigan

Post by srocc20655 »

Tex. Thank you for your reply and nice to meet you! I purchased your book and thought it was great. So much good information. I appreciate you commenting on the kidney stone/MC connection. It was so weird. After 4 weeks of dealing with a super small (but still painful) 1 mm kidney stone the MC reared its ugly head. Overnight literally. The ER people on 2 Sunday mornings one month apart were super nice too. LOL. But I am a Lyme Disease survivor so I do understand inflammation and diet choices. I will try the turkey and sweet potatos. Not sure how the chicken and peas are working out. Tried a salad today. Not a good choice. I am pretty good at dealing with holistic medicine choices too from my Lyme days. This board is great. :cool:
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Gabes-Apg
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Post by Gabes-Apg »

sorry you have had a relapse.

being a lyme disease survivor, you might be interested in looking at 'methylation cycle' issues.
there are a quite a few discussions/links to articles etc on the forum in the past 6 months

it may also explain kidney issues -

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=20555

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=20701

http://www.perskyfarms.com/phpBB2/viewt ... 0&start=30

There is affordable testing and reporting that can provide information ...
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
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tex
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Post by tex »

Thank you for the kind remarks. We appreciate them.

Because of the inflammation it promotes, Lyme disease may well be another unlisted cause for MC. And the antibiotics used to treat Lyme disease are sometimes mentioned by a number of members here as the suspected trigger for their MC.

I've often wondered if some of us might have it, but our symptoms never became severe and/or our doctors overlooked a diagnosis because they failed to test for it.

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.
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Gabes-Apg
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Post by Gabes-Apg »

In Australia - according to our health system, Lyme disease does not exist!!

chronically ill patients have had to pay quite a bit of money to get testing done from overseas...
and struggle to get any level of support from the health system.
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
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tex
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Post by tex »

:shock:

That's a heck of a note, to say the least.

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.
Lilja
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Post by Lilja »

Gabes-Apg wrote:In Australia - according to our health system, Lyme disease does not exist!!

chronically ill patients have had to pay quite a bit of money to get testing done from overseas...
and struggle to get any level of support from the health system.
Hi Gabes,

A Norwegian doctor of medicine tried to heal one of Norway's famous explorers, with antibiotics. Heavy antibiotic cures that lasted for approx one year. The health authorities withdrew his doctor's license, because it is forbidden to put people on long-time antibiotic cures... Now this explorer has to travel to Germany to get treated for his Lime disease, and his doctor is no longer allowed to practise as a doctor.

Lars Monsen on tour: https://www.youtube.com/watch?v=dq-notF-sOk

No doctor could cure this man, the only one who wanted to help Lars was this unorthodox doctor. Lars said he got great relief from his pains, but the health system put an end to his treatment.

Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
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Post by Hopeful »

Best of luck to you!
I am in the 3rd month of the strict diet and VERY slowly trying new foods. My bowel functions are much improved. I found that chicken was bad for me. I started out eating lots of turkey and lamb and have been able to add beef and pork and salmon.
Both potatoes and rice work fine for me, but I eat them only 2 - 3 days/week. My veggies are well cooked sweet potatoes, squash, green beans, turnip, broccoli, carrots. Trying beets this week.
Applesauce is not good for me and I think I have figured out that each fall my MC gets worse - probably because of the large number of homegrown apples, applesauce, and cider that I start consuming in Sept.
Olive oil and coconut oil are both fine.
I can now eat about 2 eggs a week but I don't try for more.
I slowly introduced almond butter and that seems fine.
I drink tea, coffee, water, bone broth, ginger tea with a little honey or maple syrup.

I guess what I would emphasize is to start out with only a few foods (turkey, carrots) and slowly introduce more after several weeks. This gives you a chance to "feel" what foods are bothering you.

Lyme disease is scary and pervasive. 2 years ago, I found an engorged one on my back and took a prophylactic antibiotic but who knows if it worked. So many of our MC and autoimmune symptoms mimic Lyme disease that it's hard to differentiate them.

This certainly is a long journey and frustrating at times. But I have to say that I am doing so much better that it has been worth it. I hope that your journey goes well for you...
MLM0711
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Lyme disease and MC

Post by MLM0711 »

Hi all. Just joined the forum, as this post caught my eye. My wife received the MC diagnosis three weeks ago, and we have found the book and this forum to be extremely valuable. Her stool sample will be on it's way to Enterolab tomorrow. We have really worked on the diet and have determined many triggers already, but hope the lab results will provide additional help. First followup with the GI office this Friday, so will be interesting to see what comes of that. In addition, and also why this post caught my eye is that our daughter "appears" to have a Lyme diagnosis. She has tested positive on some of the Lyme specific markers, but her symptoms are quite specific…namely ongoing swelling of the ankles. A big issue with her is that she's had cdiff and really can't take antibiotics. We are wondering if there could be overlapping issues/symptoms here? Also, was wondering what course of "treatment" the original poster used to get control of the Lyme disease?

Thanks, Mike
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