Second opinion Now what very confused

[Doug]

Well I went to have a second opinion from a GI doctor, a neighborhood of my brothers. He did reveal one thing interesting to me. The biopsy stated that "Colonic Mucosa with mild increased intraepithelial lymphocytes SUSPICIOUS for lymphocytic." He stated that I most likely have MC, but the biopsy did not state 100%

Not sure what to do, I started a gluten free diet last Sunday 11 days now, dairy free also 11 days, and soy free 8 days. I still have had stomach churning and minor cramps, no major episodes. I also eat smaller meals.

This is me
Symptoms I don’t not have Diarrhea or constipation (No one of the site is like this, which makes me wonder).
Symptoms I do have Stomach cramps anywhere from my rib cage down below my belly button, it varies. Mostly in the late afternoon an evening. When things get real bad I would call an episode, I get cold, sometimes chills, on and off cramps, stomach churning for hours, not as loud as Tax’s book states though, and sometimes I get nausea, also have freqent urination.

When we talked during the appointment
He want no part of diet, and it seem to turn him off so i stoped. He suggested that I should try Nexium (gave me a months supply) for the next month. Also stated I should have a lower bowl series, Ultrasound for gallbladder, and a blood test listed as "TSH".

Please help me i am very confused now.
Doug

[Gabes-Apg]

Doug
whether you call it IBS, MC or some other IBD/digestion issue, you are having digestion issues.
my honest opinion is that nexium will not help this -if anything in the long term it will make it worse.

For all digestion issues (IBS, IBD's, GERD, etc etc) Diet/Lifestyle Management, the right supplements that work for you is the key to success.

I have had digestion issues my whole life (3 x surgery for bowel contusions); for me the MC diagnosis was a gift (and relief) that lead me to the wealth of information and support on this forum, finally the symptoms i had been having made sense and had a reason,
the strict (some call it bland) eating plan and lifestyle changes i have implemented, the past 2 years is the first time in 40 years i have had minimal pain /stomach cramps/discomfort in my digestion.

Symptoms = inflammation.
long term ongoing inflammation = damage (and leads to a multitude of other whole of body health issues)
as we age the ability to repair and heal that damage gets harder.

some people get success from diet changes quickly, others it can take 6 - 12 months. depending on how much damage there is and what other health issues they have going on.

my guestimate is that only about 1 in 25 people on this forum get a good doctor and/or GI
the rest of us 'self manage' using the information available and make informed decisions about health management plan that suit us. and most of us get pretty good results.

I hope this helps

[Leah]

Hi Doug. Like Gabes said, the right diet is the key to all digestion problems. While you are trying to get the inflammation down by not eating gluten, dairy and soy ( that's great), you also might want to consider looking at taking some irritating foods out of your diet for now.
ie: raw fruits and veggies, salad, tomato and it's products, citrus and citric acid, too much sugar, artificial sweeteners.... etc. We are all different with different sensitivities, but only through trial and error can you find out what is bothering you. Down the road, when you feel better you can try to add these things back in. This all takes time and patience.

Good luck
Leah

[jgivens]

Doug, the pain and cramping you describe could be my description. Late afternoon and evening with chills so severe at times I think I will never be warm again! Our bed is lopsided because I have so many blankets piled on my side of the bed.

I feel very lucky to have a gastroenterologist who knows about MC and also is the first to admit that he needs to learn more. I have been on Prilosec or one PPI after another for years and I have to say that from what Tex said in his book and all kinds of other references I have seen--including my gastroenterologist--MC is triggered by drugs like Nexium. I am desperately trying to get off of Prilosec and it is not easy once you start on them. They really do more harm than good.

[tex]

Symptoms I don’t not have Diarrhea or constipation (No one of the site is like this, which makes me wonder).

Actually, we do have at least 2 or 3 other members whose symptoms match yours very closely, but none of them are currently posting. The disease tends to be very frustrating when it presents in this form, because most doctors are not even aware that this form of the disease exists.

The diagnostic marker that you described (slightly increased lymphocytic infiltration) matches paucicellular lymphocytic colitis. The odds are at least 10 to 1 that your doctor has never heard of that particular form of MC.

The research report at the link below describes your situation, IMO. You should be able to gain some insight into your situation by reading it. Note especially the discussions about the asymptomatic patients.

Paucicellular and Asymptomatic Lymphocytic Colitis
Expanding the Clinicopathologic Spectrum of Lymphocytic Colitis

From the discussion at the end of that article:

We found the clinicopathologic associations in patients with paucicellular LC were similar to those of patients with classic LC. This suggests that paucicellular LC should be included in the morphologic spectrum of LC.

Note that while the clinicopathologic features are similar, the clinical symptoms can diverge from the norm, as in your case.

Your doctor's suggestion to take a proton pump inhibitor, and undergo additional tests, including gallbladder, thyroid, etc., indicate that he totally misses the point, and he is lost. IOW, paucicellular LC is not even on his radar.

Tex

[carolm]

Hi Doug,
I can relate to your cramping and chills too. Diarrhea is not a feature of my LC. I tend to be C prominent. In my case the cramping appears to be due to a sluggish and irregular motility. When it was aggressive I would get chilled and nauseated. After a year GF/SF/DF/EF and 6 months on a low histamine diet, my LC symptoms (nausea, dizziness, aching) were mostly gone. What I was left with was cramping which still left me fatigued and made it tough for me to get through a day at work. After manipulating every factor I could think of my GI put me on Amitriptyline 10mg at bedtime, along with a regimen of stool softeners and a low dose of Citrucel (1 tsp). That was last October.

Fast forward to now. I no longer need the stool softeners but I still take 1 teaspoon of Citrucel and 1 Amitriptyline at night. I am gradually getting energy back and am no longer worried whether I'll be able to hang in there at work or if I'll be okay tomorrow.

One thing I did that was helpful was that I kept a log of what I ate, how well I slept, my BMs and how my gut was (quiet, cranky or crampy). What showed up was a clear correlation between how I slept and how my gut was the next day. if I slept poorly or hadn't had enough sleep the next day I could have cramping for hours often accompanied by several too soft BMs. It would be a miserable day. The cramps would not stop when the BMs did. They seemed to show up independently.

So all this to tell you that your cramping could definitely be part of your LC. You might try keeping a log and see if you see any patterns. My GI REALLY looked at my log. I highlighted my worst days and we could see patterns. It helped. It was after that that she prescribed the Amitriptyline and the fiber regimen. After that I really did turn the corner and am doing well now.

Carol