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amberlink09
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Help! Newbie here.

Post by amberlink09 »

Hi Everyone,

I've been reading through a lot of posts and this seems like a super supportive community, so I thought I would post here. My doctor thinks I might have microscopic colitis, last Thursday he put me on apriso and said that if it doesn't work in two weeks I will need to have a colonoscopy so he can take biopsies from my colon. I am slightly confused though, because I tend to have alternating diarrhea and constipation, and everything I've read seems to focus on only diarrhea. I'm currently in a 5 month stretch of chronic diarrhea, but it may wind up going back to constipation.

I was diagnosed with Celiac three years ago but never got any relief from being gluten free. I went Paleo about 9 months ago and felt fantastic for a few months, but then everything started going downhill. I still stick to the Paleo diet though. In addition to the D and C, I also have a ton of stomach pain and cramping, and I get extremely bloated. I am also constantly ill with different infections and colds, and I am low in many vitamins because I seem to be malabsorbing my food. I have tried eliminating many foods with no result, adding fiber, using Xifaxan to treat SIBO, using low-dose anti-depressants for the pain, and probably a billion other things I can't even remember anymore.

I am very frustrated with all of these symptoms, and an explanation would be welcome, but the thought of being diagnosed with microscopic colitis is very scary. Does anyone have any advice or any experience with constipation and microscopic colitis?

Thanks so much for reading this, I'm sorry it was so long!
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Post by tex »

Hi Amber,

Welcome to the board. Most GI specialists probably think that MC can only involve D, but they're sadly misinformed. Many (such as myself) have alternating D and C, and we have quite a few members who have primarily C, and one or two members who only have C.

MC is probably the reason why you are refractive to the GF diet, because many of us have many food sensitivities. If the paleo diet doesn't work for you, you are not the only member in that situation, but that will simplify tracking down the other food sensitivities. Since you are on the paleo diet, I will assume that you avoid gluten, all dairy products, and soy ingredients, and all grains and legumes and their derivatives, 100%. Right? Have you tried eliminating eggs, yeast, virtually all fiber, and all but minimal amounts of sugar? Some of us are sensitive to certain meats. The most likely culprits are beef and/or chicken.

Mesalamine (the active ingredient in Apriso) can actually trigger MC for many patients (those who are sensitive to NSAIDs), so many of us cannot use it. SSRIs and SNRIs, PPIs, statins, bisphosphonates and a few other drugs are also know to trigger MC. Are you taking any other drugs besides Apriso?

Are you aware that many/most vitamins contain soy and dairy derivatives, and we have to avoid them? A few even contain gluten.

Is there any wheat flour in your kitchen? Cross-contamination is almost impossible to avoid if you have wheat flour in your kitchen, or if you eat anywhere where wheat flour is used in the kitchen. Many grain products that should be pure are cross-contaminated (such as corn flour contaminated with wheat or soy), but I will assume that shouldn't be a problem for you if you are on the paleo diet. Please be aware that many of us are much more sensitive to trace amounts of gluten and other allergenic food proteins than a typical celiac, so we have to be much more careful with our diet.

Malabsorption is a common problem, but it suggests that you might be getting traces of gluten in your diet. Because of the malabsorption problem, be sure that you're getting enough vitamin D and B-12, especially. Virtually anyone with an IBD (and that includes celiac disease) is low on vitamin D, because the disease depletes vitamin D, and vitamin D insufficiency tends to promote IBDs, so it's a vicious cycle.

A sublingual form of B-12 (designed to dissolve under the tongue) is much more easily absorbed when we have a malabsorption problem in our intestines. Most of us need around 5,000 IU of vitamin D daily just to maintain our level in a decent range. If you are low, you will need more for a few months, to get your level up to where it should be. Be sure that you are getting enough folic acid, because B-12 cannot be utilized without sufficient amounts of folic acid in the diet. Wheat flour is fortified with folic acid (among other things), so when we cut out gluten, we cut out a primary source of folic acid.

Again, welcome aboard, and please feel free to ask anything. We have quite a few members who have both celiac disease and MC.

Tex
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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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Post by amberlink09 »

Thanks so much for your reply. I am extremely careful about gluten, so I'm constantly looking at ingredient labels, including on vitamins. Now that I'm paleo and don't eat much processed food, the only thing I really need to watch out for most of the time is nuts and vitamins. I have tried eliminating eggs and yeast, and I try to do low fiber because I know fiber causes my stomach to bloat. For the most part though, I just can't seem to pinpoint what is making my stomach upset, even with keeping food diaries and everything. I recently tried eliminating FODMAPs because that is supposed to be a trigger for IBS, but it actually made me worse.

I am deficient in Vitamin D and B12. I am now on B12 shots because I was having a lot of neuro symptoms from the B12 deficiency and it seems that shots are the only way I can absorb it now.

Thanks again for your help and for clarifying the whole constipation/diarrhea issue. Even when I was diagnosed with Celiac 3 years ago constipation wasn't a symptom yet (it is now), so I'm sure doctors don't know everything about microscopic colitis, or anything for that matter haha!
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Post by carolm »

HI Amber,
I have Lymphocytic colitis and deal with C all the time. In fact I think you'll find there are several of us on this site that deal with C. I rarely have D, but I'm careful with my diet. I was diagnosed 10 months ago so I now have some experience with the diet. Two weeks ago my GI put me on a regimen of 2 stool softeners plus 1 teaspoon Citrucel. I am to increase the Citrucel by only one teaspoon next week until I start having consistent results, then I am to keep on that same regimen daily.

You are already ahead of the game if you've been gluten free and looking at other sensitivities. Many here do well on the Paleo diet. I'm curious as to whether your Doctor considered prescribing Entocort. For MC it seems to be the med of choice and seems to get consistently good results in reducing the inflammation. For me, it got me back on me feet and allowed me the time I needed to get my diet in order before I titrated down. I'm not familiar with Apriso.

Fiber is usually something we avoid when we are in a flare, and it sounds like you could be. Initially I had to eat low acid, low fat, low fiber, low sugar, caffeine free, gluten free, and dairy free. Shortly after that I found I needed to eliminate soy and that made a noticeable difference. After I was off Entocort I found I reacted to eggs if I eat them directly (I can still have them baked in something, like a muffin). I went several weeks just eating chicken broth, baked chicken, white rice, and well cooked carrots and green beans, dry Rice Chex and occasionally potatoes, in an effort to rest my gut.

If you've been reading on this site you've probably seen that there are meds that can bring on an MC flare, such as NSAIDS, antibiotics, statins, PPIs, and antidepressants. Is it possible that you were on a medication that triggered this flare? If so then discontinuing that med should be helpful too.

I"m sorry that you are going through this but glad you found this site. You'll find a wealth of information here regarding MC. Feel free to ask anything.

Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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Post by Lesley »

Hi Amber,
Welcome!

Sorry you have been feeling so awful. I understand full well how scary this dx is, but every person on this forum really will help and support you.

I have mostly C. I say mostly, because every now and then, like now, I get something akin to D, where my BMs are mucousy, thin, floaty, and altogether yukky!
However, I mostly contend with working on having a BM, any BM. I take about every natural and chemical stool softener, and laxative available and can go up to 3 weeks without one. Believe me, 3 weeks of C is no joke.
And I have MC, just like everyone else here.

Never mind about the length of your posts. The more details you can give the more people here will be able to help you.
So vent away, and let us support and help you.
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tex
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Post by tex »

Amber,

It's possible for mast cells (in the intestines) that degranulate inappropriately to cause MC, or perpetuate the symptoms. Histamines are commonly a problem when that happens. Some people in that situation find that by avoiding foods high in histamines, or foods that promote the degranulation of mast cells, their GI symptoms diminish. You can find lists of such foods here.

Another possibility is Oxalates. Foods that are high in oxalate content can cause symptoms for some individuals with GI issues.

Tex
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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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Post by JFR »

Amber,

I think that the best possible advise is to keep it simple. I have been mostly paleo for the better part of a decade. The mostly, I believe, was part of the problem. I allowed myself to have homemade yogurt and some cheese. Now I eat no dairy at all. My take on paleo now is that it is very good at telling you what not to eat, what probably causes problems for most people, but it doesn't go far enough for people like us with MC or probable MC (I don't actually have a diagnosis, just all the symptoms, so decided to skip the colonoscopy part and go straight to dietary change). So when things got really bad for me (I was in the bathroom about every 10-15 minutes) I pared my diet down to at first just one food, grassfed ground beef and slowly added a few more, cooked greens with coconut oil and almond butter. Things got infinitely better. I had the Enterolab testing, learned what I needed to avoid permanently and adjusted accordingly (no more beef, lamb and pork instead). I made the mistake last week of making some entirely paleo legal seed crackers and I felt like I was back where I started, although things are getting better more quickly this time. So I am back to keeping it really simple, allowable meats and bone broth for a few days and then maybe my homemade kale chips and perhaps a nut butter or 2. I plan this time to approach it like an elimination diet and keep to the severely restricted diet for at least 2 weeks, maybe a month and then test foods out one at a time and very slowly. Patience, discipline and support from the people here go a long way in making this entirely doable. Getting better is worth it, even if it means severe dietary restriction for the rest of my life.

Jean
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Post by draperygoddess »

Hi Amber!

I know we've already thrown a lot of information at you, and it takes time to take it all in! I will just say that I'm one of those alternating D and C people (or was before my symptoms improved). My theory is that the C is actually a reaction, and so food stays in the gut and ferments, so in a few days that causes D. Then the cycle starts over again. It took me awhile to realize that my C was just as much a problem as the D, because the D was much harder to live with.

Digestive disease is always a challenge, but you can get better! Hope you find some answers here.
Cynthia

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Post by amberlink09 »

Thanks for your advice again everyone!

I used to be very strict paleo, but as it stopped working I started allowing myself to have one cheat day a week because I feel just as bad as I do every other day. This last week though I was 100% paleo and trying to get back to that. Can anyone give me advice on MRT testing and how much it costs? I've had the blood and skin tests for food and airborne allergies and everything has come back negative. I have student insurance though so I don't know if I can afford the testing. I am starting to wonder though if I do have MC, maybe the key is just getting the inflammation under control before the diet can do its work. I am probably the only person (especially as a celiac) who has received absolutely no relief from going gluten free.

I tried the SCD diet once and started with just a week of chicken soup and slowly introduced different foods, it helped for a while but then failed after a while like everything else. Here's a link: http://pecanbread.com/f/how/stages.html. I will definitely look into low oxalate and low histamine foods, thanks!

I am worried that my use of ibuprofen could definitely be contributing to this. I have Endometriosis as well and ibuprofen helps my pain better than anything else. For the time being I have stopped taking it because I'm on the apriso (melasmine) and it's also an NSAID. So, I'm worried about that too.

I was also wondering if anyone else is just sick all of the time? I get colds and infections almost every two weeks and it's really taken a toll on me. I've been to the doctor for testing but everything is fine other than low vitamin D, B12, and a slightly elevated ANA that no one can explain. My only guess is that I'm barely absorbing any nutrients from my food which is weakening my immune system, and since I'm in college I'm just more exposed to sick people.
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Post by Zizzle »

Welcome Amber,
I'm so sorry you're not getting better :sad: . NSAIDs like ibuprofen are totally contraindicated in MC, so they could be perpetuating your GI inflammation and preventing you from healing from the accumulated celiac damage. It seems you are avoiding most of the major MC food triggers, but I thought I would mention I got much improvement after learning I reacted to sesame seeds. Apparently they are highly allergenic and prone to contamination, so I'm just curious if you eat them much in the paleo diet. My doctor ordered celiac cross-reactivity testing from Cyrex Labs. It also identified coffee for me, something else I already knew I couldn't tolerate.

I've had a very high ANA level for 7 years, and I only have mild autoimmune skin rashes so far (plus the MC), so a low ANA is generally not something to worry about.

Looking back, do you think you had celiac since you were a child, or was there a trigger in your life (an infection, stressful event, vaccine, etc) that you can identify, after which your symptoms began?
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Post by amberlink09 »

I will definitely get the food testing done once I have the money to do so. I can't think of any time I really eat sesame seeds, so I don't think that's the culprit. I kind of just feel like food in general is the cause right now! I'm going on day 2 feeling like my stomach is completely on fire now, and I can't figure out what to do with it.

My doctor told me the high ANA was nothing to worry about, so I'm happy about that, though I do wonder if it has something to do with MC?

As for Celiac, I think I developed it around 12 or so. I started having constant D and lost a lot of weight, but the doctors just said I was too 'stressed' or it was all in my head because they couldn't find anything wrong with a stool or blood test :roll: I was officially diagnosed with a blood test and endoscopy at 18 because I randomly found a GP who had Celiac too and was able to identify it right away.
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Post by carolm »

Amber, although we try to avoid PPIs or antacids, sometimes they are helpful. Are you taking anything for excess acid?

Carol
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amberlink09
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Post by amberlink09 »

My immunologist put me on Omeprazole for a while, but it actually made my issues worse. Acid reflux never went away, I was still having indigestion, and my D stopped but was replaced with really awful C, so I decided to go off of it. I might try a different kind but I'm still leery from my bad experience. Also, right now I'm not allowed to have any acid reducers while I'm on the mesalamine, not sure why, that's just what the box says.
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Post by tex »

amberlink09 wrote:Also, right now I'm not allowed to have any acid reducers while I'm on the mesalamine, not sure why, that's just what the box says.
The mesalamine-based drugs have an enteric coating that prevents them from being activated until they reach the lower third of the small intestine and the colon. Most enteric coatings disintegrate at a pH of approximately 6.5. If you take anything to buffer the acid, those meds can activate too soon, and they will be absorbed before they get to where they need to treat the inflammation.

The enteric coating on Entocort EC also breaks down at a pH of about 6.5

Tex
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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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Post by amberlink09 »

Thanks Tex, I just wanted to know the reasoning behind it so I would know how important it is to not take the antacids.

So far, the apriso seems to helping, I'm seeing a little bit of progress every day, and my GI said I wouldn't see the full effects for two weeks, so this is very exciting for me. I still have lots of pain/cramps and bloating, but improvement in any area is is more than welcome right now.
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