MCC questions, looking for new G.I. Doctor

[I_zwem]

Background information 2015 It began G.I. Doc full stool, blood tests then colonoscopy clear. Recommended VSL probiotic and then Align. In 2019, saw my PCP and they gave me FODMAP handout, didn't improve, then had full stool, blood test, a colonoscopy with biopsy and was diagnosed with Microscopic Collagenous Colitis, no follow up treatment, no recommendations. Decided to quit Gluten and Dairy. Three weeks later it cleared. In 2021 had a flare up most likely due to eating breaded fish and not adhering to a strict Gluten free diet. Four weeks later it cleared.

Fast Forward to April 12, 2023 had a major relapse, totally lost my mind, went out to eat three times in one week (family visiting from out of state), pizza, then pasta, then pizza. What was I thinking??? WD for over a month....

Luckily found this website and forum. Sent away for Entero testing. Started phase one, got my results Chicken and Eggs highest. Everything high, argh!
Quit eating my daily scrambled eggs, WD stopped. June started to heal, felt a bit better, eating lowest inflammatory foods. July, wham! WD! added daily loperamide. Taking 150mg Dr's Best.magnesium glycinate, 3K vitamin D3 daily, centrum for women 50+

Just saw a GI Doctor yesterday, same office as before. He was dismissive, showed him my Entero lab report barely glanced at it said "so basically, you can't eat anything". "I recommend a colonoscopy and we can also do stool and blood testing." To make sure something else isn't going on." I asked about Celiac Disease and he said to test that I'd have to eat four slices of wheat bread for four weeks and then could be tested. What the heck??? Don't know if he was being serious or sarcastic! Needless to say, I'm not phoning him back....

Questions:
So, can MCC lead to something more serious? Should I have yet another colonoscopy? I'm 65, female and have had four. Also have osteoporosis.
If so, I need to find a different one here in the San Francisco Bay Area.

Any recommendations?

i_zwemm

[tex]

Hi,

Unfortunately, your gastroenterologist was dead serious when he said that you'd have to eat four slices of wheat bread daily for at least a month before he would order a celiac screening test. And the problem with that is, that test is so primitive, and so insensitive, that there's a good chance it might not detect celiac disease, anyway, even if you had it, because those tests only manage to lead to a diagnosis in about 5% of celiac cases. The fact that gastroenterologists don't demand a better screening test for celiac disease is prima facie evidence that they really don't give a hoot about diagnosing celiac disease in the first place, because the treatment doesn't require any high-priced medications, and doctors get their kicks from writing prescriptions, not giving dietary advice, because they don't know anything about diet, to begin with.

When their prescribed treatment doesn't work to control MC, gastroenterologists always request another colonoscopy, and sometimes blood tests, and stool tests, etc. to look for some other cause. And over the years, many, many MC patients have agreed to waste their money and their time, doing those tests, but as far as I'm aware, the colonoscopies never, ever discover anything new — the problem is always unresolved MC.

So, can MCC lead to something more serious?

I would say, "Never", except that you know as well as I do, that there are exceptions to every rule. So let's just say that it would be extremely rare. The biggest risk for someone who has active MC is dying of complications due to dehydration, otherwise our risk of developing Crohn's, or ulcerative colitis are exactly the same as anyone else in the general population, no better, and no worse. If the symptoms of MC are not controlled, our risk of developing Hodgkin's disease increases to the level experienced by celiac patients who have untreated (or improperly treated) celiac disease. And untreated MC symptoms may result in the development of other autoimmune diseases. But as long as our MC is controlled, we shouldn't have any increased risk of any other issue.

Should I have yet another colonoscopy?

As suggested by the information I posted above, I wouldn't waste my money on another colonoscopy unless I had a family history of colon cancer, or a past history of developing polyps.

Any recommendations?

Maintain a clean diet (without cheating, for any reason), and live happily ever after. Untreated (or improperly treated) gluten sensitivity is the primary cause of osteoporosis so if you keep a clean diet, your osteoporosis will not increase due to gluten sensitivity. Make sure you keep your magnesium and vitamin D at adequate levels, because if your vitamin D runs low, you won't be able to properly absorb the calcium in your food. And if your magnesium level runs low, you won't be able to activate the vitamin D so that it works properly, nor will you be able to coactivate insulin, so that the calcium is properly transported from your bloodstream to your bones, where it's needed to form new bone tissue. Adequate vitamin D and magnesium supplementation should maintain your bone health, so that it doesn't deteriorate.

Those are my recommendations.

Tex

[I_zwem]

Thank you, thank you, thank you, for your prompt response. Almost feel like crying at this point. You are the best, and Gabe, and so many others have helped me so, so, much on this forum.

Grateful beyond, beyond,

I_Zwemm

[I_zwem]

Hello, Thought I'd write a brief update and then my question.

Started MC relapse in April, Entero Lab test in May, stopped eggs, improved, strictly GF, DF, SF, EF, then hit or miss days over the summer, G.I. Doctor appt. sought another Doctor, finally, finally had a better month in September, October hit or miss days, November video appointment with new G.I. Doctor, much better than the last one by the way. He was more caring and a bit more compassionate. He did mention that 1/3 of MC patients develop Chrons or Ulcerative Colitis. He ordered one blood test for Celiac and 14, yes, 14 stool tests, all came back negative/undetected. So upcoming colonoscopy with biopsy in two weeks. I'm guessing a confirmation of my 2019 diagnosis of MCC. And maybe my first prescription of Budesinide? This is such a frustrating disease!

Sooooo, my question is since I scored so high on chicken and eggs, will eating half a Cornish Game Hen today, Thanksgiving, do me in??? I'm already pretty much done in anyways so it maybe doesn't matter.

[tex]

Maybe, maybe not. Cornish hens may be different enough from conventional chickens that they might not be as much of a problem, and it's possible that they might not be a problem at all.

Regarding the rate at which microscopic colitis patients concurrently develop Crohn's disease or ulcerative colitis, obviously, mathematics is not your gastroenterologist's forte. If you do the math from the data in the research study described at the link below, you will find that out of 13,957 microscopic colitis patients, in a study that covered the years from 1990 to 2017, in Sweden, only 323 of them developed ulcerative colitis, and only 108 of them developed Crohn's disease. Carrying out the math, 431 divided by 13,957 is slightly over 3%, not 30%, as your GI doc claims. It's a good thing he decided to go to med school rather than pursuing a career in mathematics or engineering, because he wouldn't last long in either of those disciplines.

https://www.gastrojournal.org/article/S ... 1/fulltext

Tex

[I_zwem]

Thank-you Tex so much for answering my question, providing the information and the link to the study.
You're the best.
It was even Thanksgiving Day!

Luckily, I have excellent health care coverage and the colonoscopy will be free of cost.

I'll post results when I get them.

Kind Regards,

I_Zwemm

[HockeyMom]

If I may jump in here....y'all know what I'm going to say! Ya, ya...bear with me. If you have a decent relationship with that GI doc and the colonoscopy/biopsies don't show much other than what you already know...why not ask to try cholestyramine? Seriously, it's just some sort of flavored resin that absorbs things! I see no real downside to it if it doesn't help you.

Tex knows the percentages, but many of us with MC (my biopsies said CC) have bile acid malabsorption issues. It honestly took me a few years to realize I needed the stuff! I obviously wasn't taking enough of it though, quit taking it 2x and completely ran off the rails. But I was juggling a few variables at that point and couldn't figure it out. So, long story short....I need a bile acid binder. And LOTS OF IT DAILY!!! Like Andre The Giant amounts and I am a woman who is 5' 6" and 125# (bottomed out at 100# in late 2017...skeletal/awful). My PCP's office handles this for me. They are fine prescribing 8-9 packets a day. I believe many of the folks that don't get better with steroids/diet changes may benefit from a bile acid binder. And i think many of them that try it either don't give it enough time and/or don't take enough of it. People are willing to give diet/steroids YEARS to see if they help, but don't do the same with a bile acid binder. I don't get it....

I started with the standard 2 packets a day (per PCP office), and I thought maybe, maybe it helped some. So we cranked up to 4 packets/day and it seemed to help more! Didn't solve my problem, just helped. So, very long story very short-I take between 8-9 packets a day and eat/drink whatever I want to. The kicker here is that I also have to take Betaine HCl and a digestive enzyme capsule with each meal. And I take ALOT of that Betaine HCl. Learned about that here. Had no idea it was an issue for me. And, several times over the years when life got real good and I decided to cut way back or stop the stomach acid/digestive enzymes (add magnesium to this list also) ....my life and poop would slowly slowly slowly start going the wrong direction. I don't mess with it anymore!

My 2 cents for a Saturday morning!
Laine

[I_zwem]

Thank you Laine for your input! This has been quite a journey this go round and appreciate this forum so much!


Irma

[I_zwem]

So happy the forum is back up and running. Thank you Wayne!

Update 01/05/24:
Had my Colonoscopy 12/07/23. New results, Microscopic Lymphocytic Colitis. 2019 Microscopic Collagenous Colitis. Back then, no follow up, no prescription. Now after eight months of a major relapse, and on Budesonide 9mg for 8 weeks. Quick response to medication, no more WD. then Into my second week, constipation. Have dialed it down to 9 mg every 2 days and 6 mg every two days, hoping this helps. Still keeping to a no gluten diet, lots of turkey, venison, duck, zucchini, broccoli, sushi rice, jasmine rice, mochi rice, bananas, cassava chips, pistachios, decaf. coffee, a little half and half and decaf. tea. And occasional safe dark chocolate, and a glass or two of sauv. blanc wine.

Keeping my fingers crossed that the Budesonide, adherance to no gluten, mostly no dairy, soy, and eggs will get me back to remission. It's been a long road and I am really, really, tired but grateful for members posts and this forum. Especially ready to try some safe pancakes!!!

Feeling more like myself on the Budesonide, I must say. No more brain fog, and a lot less fatigue. Things are looking up!

Wishing all of my co-mc compadres health and a happy 2024!
Irma

[tex]

Thanks for the update. Hopefully, you're on the way to remission, but if that doesn't happen, try avoiding the half-and-half, because most of us are sensitive to all dairy products. And if that doesn't get results, you may need to consider the advice that Laine offered, and experiment with cholestyramine until you find the dose that works best for you.

It's interesting how MC can segue back and forth between lymphocytic colitis and collagenous colitis at various times, seemingly without rhyme or reason.

Wayne

[I_zwem]

Thank-you Wayne! Happy New Year to you. I really enjoyed your last news letter; very informative!

Kind Regards,

Irma

[tex]

Thanks. Happy new year to you, too. I'm hoping this will be a good year for all of us.

Wayne

[I_zwem]

02-12-24 Update

Had my follow up zoom appointment with my new G.I. Doctor. I have been on 9mg. Budesonide for two months. He said that it is fortunate that I have been diagnosed with LC rather than CC as the former has better results with medication. Based on my much improved symptoms, he wants me to take 3 mg, once a day for the next month and then be off of the medication. Is this advisable? He said Colitis is an infection of the intestine and if I start to have diarrhea again to contact him for stool testing. I asked if I could resume taking Budesonide if diarrhea returned and he said no. I also asked if after more stool testing would it require another colonoscopy and he said no, not for another ten years. Well that was good news. I asked if Align probiotic
would be helpful and he asked if I have bloating which I do not and he said it's quite expensive; don't waste the money. I also asked about Metamucil as I've been on a very low fiber diet and he said that would be okay.

He also gave me the usual lecture, do not take NSAIDS, (which I haven't for five years) and that Microgenious Colitis is a disease of older woman 65-70 as he rarely sees it in men.

Seems to be same old story, different day....

Luckily, I am feeling better and hopeful to reach remission...

Irma

[tex]

You may already be aware of the fact that published research shows that on the average, over 80% of MC patients who respond to budesonide relapse when the treatment is ended. We've found that relapse occurs because of mast cell rebound, and that problem can be avoided by extending the taper much further. Following the usual prescribed taper process with a week or two of taking one 3 mg capsule of budesonide every other day, followed by a week or two of taking one 3 mg capsule every third day, then every fourth day, etc. usually eliminates a relapse. Additional protection can be gained by taking an antihistamine each day for a week or so after the budesonide treatment is ended.

Some members have even gone to one capsule every five or six days, in severe cases. Of course, to do this, additional budesonide would be required, and unless you already have that on hand, it won't be available to you. If you do happen to have some old budesonide on hand then, you're all set. Don't worry about the expiration date, because most medications still have good efficacy several decades after that listed expiration date. If you don't have any extra budesonide for the extended taper, then by all means, take a daily antihistamine for a couple of weeks after the budesonide treatment is ended.

The reason an antihistamine works almost as effectively as budesonide, as the budesonide treatment Is ended, is because one of the ways that budesonide suppresses Inflammation is by suppressing mast cell activity, and that's exactly what antihistamines do.

I hope this helps.

Wayne

[I_zwem]

Yes, I do remember reading about a longer tapering off of Budesonide and will do so. I have plenty. :-) And I will also take an antihistamine
at the end on a daily basis.

Thank you for all your prompt responses and support as I make my way through this challenging disease; at least it's a benign one!

It seems I'm always writing with my questions to you around holidays! Happy Valentine's Day!

Irma