In the right place, I think?

512PFJ · Post by **512PFJ** » Thu Jul 06, 2017 4:47 pm

Hi,

I was diagnosed last week with “lymphocytosis of the colon” after a colonoscopy biopsy. I am not sure if this is the same thing as lymphocytotic colitis. (The internet has not been helpful on this one.) GI ruled out other types of colitis. Inflammation appears to be primarily in lowest point of GI tract. After endoscopy, she also said I had bile gastritis, though I don’t feel any reflux. And, I still have my gall bladder. Go figure.

My main symptom, which really got out of control about 2 months ago, is unpredictable, absolutely urgent need to find a bathroom (usually once every other day). So, I am not plagued all day long once things are out of my system, but I never know when that is going to happen. I can’t always tie what I’ve eaten to the issue. I am increasingly reluctant to leave the house.

GI has told me to stay on no meat, no-fat whatsoever diet for bile gastritis. I’ve been on it for 3 weeks without seeing any changes, other than my crabbier mood ☺ I’ve been taking Canasa for 10 days to reduce inflammation (no improvement yet. She said give it two weeks, so 4 more days). I’m meeting with nutritionist tomorrow to figure out what to eat, other than bananas and almond milk yogurt. No gluten problems showed up on test, though I’ve read here that it doesn’t always mean much. I believe I’ve become lactose intolerant over the last year or so.

Other than having secondary progressive MS (diagnosed 8 years ago after multiple MDs thought I was making it up until they saw my MRIs) and this, I am, or was, generally healthy 56 year old female. (Non smoker, gave up my weekly cocktail last year, at this point underweight).

Any advice, guidance, suggestions, stories of similar experiences, would be deeply appreciated.

Thanks,
Robin

Vanessa · Post by **Vanessa** » Thu Jul 06, 2017 5:24 pm

Hi Robin,

Welcome to the family. Sorry about this new diagnosis. Two important things when you find us is ordering the book in the upper right hand corner of this website and looking into the Enterolab testing for food sensitivities.

Also make sure you have good Vit D supp. and chelated Magnesium supplement.

The gluten blood testing is worthless. The tests are not sensitive enough. Most all MC patients are creating anti-bodies to gluten (those anti-bodies have a 6 month half life).

There is lots of reading on this forum to be done. Try not to get overwhelmed. Ask questions when things come up. Most of us got this disease "overnight" and are very confused at the beginning. Unfortunately most Dr.s and almost zero nutritionists will be of help. On the website there is a good place to start in the Guidelines to Recovery section with the stage 1 diet. Most of us live on meat in the beginning and 1 or 2 well cooked tolerated veges such as green beans and squash.

Again, welcome to the club. With the right diet and lifestyle modifications you can get your life back. It takes some time.

Post by **tex** » Thu Jul 06, 2017 5:32 pm

Hi Robin,

I think your doctor has just created a two-dollar name for an existing disease (lymphocytic colitis), because LC is "lymphocytosis of the colon". I'm not sure why you have the bile gastritis, but gastritis is somewhat common with LC. It might be due to a chronic magnesium deficiency. That would also increase the risk of developing MS.

But then LC usually is marked by lymphocytosis of the terminal ileum and the entire colon (in a pattern of random scattered patches), rather than inflammation at the distal end. Did she take numerous biopsy samples from the entire colon? It sounds as though she only took a biopsy sample at the distal end. If so, it's no wonder she couldn't find it anywhere else if she didn't take biopsies everywhere.

The gastritis will usually resolve when the LC resolves (it's often the same type of inflammation). The intestines heal slowly, but as Vanessa pointed out, healing requires a lot of protein. To resolve the LC you need to eat a high-protein diet (which means lots of meat) and avoid gluten and casein 100 % (because they're perpetuating the inflammation). Sort of the opposite of what your doctor is suggesting. I can't help but wonder how she intends for your digestive system to heal, without protein. Avoiding gluten will also help your MS.

Tex

512PFJ · Post by **512PFJ** » Fri Jul 07, 2017 5:19 am

Thanks Vanessa and Tex. I appreciate your responses, and have ordered the book. Will also pick up some chelated magnesium, especially since my MS seems to have gotten worse over the last few weeks between this happy news and the no-food diet. I will check out the guidance on the website.

I made an appointment for a second opinion with one of the GIs on the list here, and hopefully will be able to get some better answers.

Again, thanks. I feel slightly less alone, and just a tad less unhinged :)

Robin

Post by **tex** » Fri Jul 07, 2017 8:56 am

Robin,

By the way, please forgive my manners, I had a stroke a few months ago that affected my memory and cognizance. It never even dawned on me that I was responding to your first post. Welcome to our online family and please feel free to ask anything.

You are wise to get a second opinion, because your symptoms seem somewhat nontypical.

Magnesium deficiency and MS have similar symptoms that possibly link the two, including:

• Weakness
• Muscle spasms
• Muscle atrophy
• Twitching
• Rapid eye movements
• Hearing loss
• Osteoporosis

IOW, like all medications, magnesium probably won't cure MS for anyone, but it can certainly help to minimize the symptoms.

Tex

512PFJ · Post by **512PFJ** » Fri Jul 07, 2017 4:05 pm

Tex,
No apology needed - I used to run a program for stroke survivors :)

I am very interested in a second opinion since (fortunately) I don't have some of the symptoms that the test results would suggest. But i do have some spindle cells (??) that are apparently related to some of the colitis problems.

Best,
Robin

Erica P-G · Post by **Erica P-G** » Fri Jul 07, 2017 4:21 pm

Welcome Robin,

You've gotten some really great suggestions, I just wanted to welcome you

I've been at this LC game since May 2015 and I turn 50 this year....and I'm doing much better, will never be back to my old normal, but the new normal I can deal with

Cheers
Erica

512PFJ · Post by **512PFJ** » Sat Jul 08, 2017 5:07 am

Hi Erica,
Thanks for the welcome, and it's encouraging to hear that you are doing better. Ironically, I was a disability rights advocate before being diagnosed with MS and heard all sorts of stories about people with terrible problems. But MC is a real doozy...

brandy · Post by **brandy** » Sat Jul 08, 2017 5:02 pm

Hi,

Welcome to the forum! I am in remission now but I had to eat a lot of protein to get there--it was the bedrock of my diet for awhile. You hopefully will see some improvements with your MS by going GF or at least slowing of the disease progression.

You've probably heard of the lady Doc who had MS improvements by going GF. I can't remember her name now.

Vanessa · Post by **Vanessa** » Sat Jul 08, 2017 7:08 pm

Her name is Dr. Terry Wahls. She has a TED talk on YouTube and great books on what she did with her diet and lifestyle.....and she lives here in Iowa!

512PFJ · Post by **512PFJ** » Sun Jul 09, 2017 7:38 am

Thanks Brandy and Vanessa. There's a lot of interest in Dr. Wahl's work. Brandy, this may seem like a dumb question, but what did you do for protein initially? My dr said to avoid red meat, and I'm not a big fish fan. (Tuna fish and hard boiled eggs are not happening). Even in my better days I was not much of a cook. Advice, or posts you could point me to, would be appreciated, Thanks!
Robin

brandy · Post by **brandy** » Sun Jul 09, 2017 8:37 am

Hi Robin,

I try to cook protein in big lots to make it easier on my life. I'll roast 3 or 4 pork tenderloins and then slice it in servings and freeze (I don't cook one roast at a time). I'll roast a turkey and have the boyfriend pick the meat off of it and generally get 44 servings of turkey off of one bird and freeze. I'll then generally thaw out a day's portions of pork or turkey. I find poultry tastes a lot better cooked with the skin on even if I don't eat the skin. Sometimes I'll roast two chickens and freeze portions. I eat uncured bacon. I've recently been eating applegate farms GF chicken sausage. Some folks on here eat lamb, duck and game. I was in Montana last week and bought a pound of emu and tried that. It is raised in Montana. If you have connections to wild game that is an economical source and healthy.

Early on I took field trips through the frozen section and fresh protein section of grocery stores in my area to see what was available.

Now that I'm back in remission (it took 10 months) I can eat a little fruit. Vegetables are problematic early on due to the fiber and must be overcooked to be tolerated.

brandy · Post by **brandy** » Sun Jul 09, 2017 8:41 am

Robin the vegetable quantity that Dr Wahls recommends will not work for us early on. It is way too much fiber. I'm in remission and can add a bit more veggies in since I'm in remission.

Gabes-Apg · Post by **Gabes-Apg** » Sun Jul 09, 2017 4:09 pm

Robin
a belated welcome!

Dr Wahls protocol has some good foundations, agree with Brandy don't overdo the fibre at first
the other good resource is bulletproof diet by Dave Asprey, again go steady on the greens/fibre at first

both of them focus on low inflammation, body healing eating plan.
protein wise, red meat is ok for me so long as it is well cooked, ie ground meat in soups and stews etc.
I find that lamb works really well, I make big batches of stew, that is frozen into portions and reheats well

the main thing is to find what works for you, what is available, affordable, and suits your cooking style etc.

512PFJ · Post by **512PFJ** » Mon Jul 10, 2017 3:19 pm

Brandy and Gabes,
Thanks for your replies and suggestions. I'll start making/freezing extra food when I do cook, especially for lunch. Gates, I like the lamb stew idea. I did quickly look at the Bulletproof Diet, which looked like it called for a lot of butter, fat, etc. Have you tried it?
Thanks,
Robin