Microscopic Colitis is so named because your colon may look normal until tissue is examined under a microscope. This can make it hard to diagnose. And while you’re trying to get a diagnosis, symptoms may be disrupting your life.
MC is an inflammatory bowel disease that causes frequent, watery diarrhea and abdominal pain. Many patients lose weight. Others gain. It’s easy to end up dehydrated. And forget eating meals out, or even leaving your home for an extended period of time until you get it under control.
Once diagnosed, your doctor may recommend changing some medications and adding others, adding supplements, and identifying food intolerances. There’s no standard list of trigger foods although the most common are alcohol, caffeine, gluten, dairy, and sugar.
It’s easy to identify alcohol, caffeine, dairy, and sugar, but eliminating gluten is sometimes confusing. To do so, you’ll need to avoid wheat, rye, barley, and malt and their derivatives. That means look for these problematic items on a label:
Barley Grass
Barley Malt
Beer (there are GF varieties)
Bleached Flour
Bran
Bread Flour
Brewer’s Yeast
Brown Flour
Bulgur Wheat
Cookie Crumbs
Cookie Dough
Couscous
Durum wheat
Edible Coatings
Edible Films
Edible Starch
Enriched Bleached Flour
Enriched Bleached Wheat Flour
Enriched Flour
Farina
Farina Graham
Farro
Filler
Flour
Fu
Germ
Graham Flour
Groats
Hard Wheat
Hydrolyzed Wheat Gluten
Hydrolyzed Wheat Protein
Hydrolyzed Wheat Starch
Kamut
Maida
Malt
Malted Barley Flour
Malted Milk
Malt Extract
Malt Flavoring
Malt Vinegar
Matza
Matzo
Matzo Semolina
Orzo Pasta
Pasta
Pearl Barley
Triticum
Roux
Rusk
Rye
Semolina
Semolina Triticum
Spelt
Sprouted Wheat or Barley
Tabbouleh
Unbleached Flour
Vital Wheat Gluten
Wheat
Wheat Bran Extract
Wheat Germ Extract
Wheat Nuts
Wheat Protein
Whole-Meal Flour
The following items sometimes contain gluten:
Artificial Color
Baking Powder
Boxed Cereals
Broth
Caramel Color
Caramel Flavoring
Clarifying Agents
Coloring
Dextrins
Dextrimaltose
Dry Roasted Nuts
Emulsifiers
Enzymes
Fat Replacer
Flavoring
Food Starch
Food Starch Modified
Glucose Syrup
HPP
HVP
Hydrolyzed Plant Protein
Hydrolyzed Protein
Hydrogenated Starch Hydrolysate
Hydroxypropylated Starch
Maltose
Miso
Modified Food Starch
Modified Starch
Natural Flavoring
Salad Dressing
Natural Flavors
Non-dairy Creamer
Oats
Seasonings
Soba noodles
Soy Sauce
Soup
Stabilizers
Starch
Tomato Paste
Vegetable Gum
Vegetable Starch
Vitamins
Wheat Starch
Beyond these common triggers, you may need to keep a food journal over a period of time in order to isolate other foods you cannot tolerate.
With the use of medication and dietary changes, it may be possible to resume most of your usual activities with confidence. For help dealing with lingering problems, MC support groups are available.
When a friend recently assumed I’d give my kids a pill rather than restrict them to a gluten-free diet, I was surprised.
When there’s a way to address symptoms caused by a disease or condition through dietary changes without it resulting in life-threatening results, that is the choice I’ll make. Could that change? Perhaps. I’m always open to advancing science. If there were a vaccine for Celiac Disease that had been thoroughly tested, I would still be extra cautious when it comes to developing children because they can live a healthy life without medication.
For me, the distinction is in automatically choosing convenience vs committing to a less convenient, but well-established healthy option. If we follow the line of reasoning that convenience rules, there should be no question that fast-food is the best choice for our children. Hopefully, we know better. And hopefully, we are more thoughtfully informed when choosing other options for our kids.
With that in mind, let’s review the status of previously explored treatments:
Egg Yolk Therapy aka dietary supplement AGY-010 completed a study of 149 individuals. That’s too small a number of individuals to draw any conclusion other than further research is needed
Nexvax2 trials were discontinued when the vaccine proved to be no more effective than placebo.
What we can see from a comparison of the previous list and this one is that it takes a very long time to bring new treatments to market even when early trials are promising. There are many complicating factors like funding, participant recruitment, and world events like pandemics.
This can be frustrating for anyone who has a disease that must be treated with medication! While you may not feel lucky to have celiac disease, at least there’s a dietary alternative.
Researchers continue to explore. For a quick view of the clinical development pipeline for treatment of celiac disease, visit:
Eventually, there may be a safe, effective, convenient choice. Until that time, we’re here to help you manage the diet.
Disclosure of Material Connection: I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”
This post originally appeared here in 2015. Since that time, I’ve served as a hospital advisor and member of a Quality Experience and Safety Team Committee at the same hospital. I am not a healthcare professional. I was there to represent patients and families.
At the time, this type of representation was seen as valuable. I say that, there was definitely a period of skepticism within QUEST team as to whether my contributions should be considered. Nonetheless, for a period of time, I felt my contributions to policy made an impact.
Due to family obligations, I stepped back from that committee after a few years. Then came the pandemic and a shift away from patient centered care. There was still lip service, but the division that was happening in general began to happen in the hospital advisory council.
Pointing out an area of weakness was vocally called out as complaining. Vulnerable members were left hanging without resources. There was no leadership to facilitate prickliness.
What had been a room in which I felt all opinions were valued and explored became a place I felt misaligned, uncomfortable, and helpless to make any positive advances. When I resigned, we were no closer to an easy to navigate health system than we had been when I started.
Could I have stayed and fought? Of course. But from the time I was small, I’ve been put in situations where I had to fight for agency, dignity, safety, and a voice. It’s exhausting to always be fighting. It takes away time and energy that can be spent in productive and enjoyable endeavors. And that is where I prefer to invest.
This morning, I read a post on Bluesky from a LongCovid patient who is exhausted from trying to find a doctor that acknowledges and understands how to treat her condition. She may or may not have had the life experiences I have, but she and almost 9% of adults in the US who have ever had COVID now must fight a lengthy, exhausting fight to find treatment that will restore some quality of life.
My heart breaks for all of these patients. I’m so sorry for the misinformation and horrible policies that have contributed to their plight. While it won’t take away their struggle, perhaps something from this old post will help:
Navigating medical care can be an exhausting process as any celiac, IBS, Crohn’s, diabetic, or cardiac patient knows. As this year draws to a close, I’m looking forward to the renewal a new year promises.
I spent the past few days with my mom in a rehab facility. She is a dialysis patient and last week had 3 small strokes. On the phone from the ambulance as she was transported to the hospital, she sounded ok, but said her right arm and hand wouldn’t work right. Five days later, she arrived at a facility where she could receive physical therapy multiple times per day. It was Christmas eve.
Of course holiday staffing varies from the norm. On Christmas day, our nurse was in charge of 60 patients. There are 480 minutes in an 8 hour shift. That means, she could spend 8 minutes per patient even if she didn’t take a single break. We used more than 8 minutes of her time when my mom passed out in the wheelchair from low blood pressure. Needless to say, there is no time for the staff to make sure Mom eats or gets enough fluids.
My mom is lucky because at least one of us has been able to be there for a portion of every day. In spite of that, it has been difficult to get enough information together to assess whether a bad day is just a bad day, or the beginning of a downward trend. It’s hard to know whether we need to quit worrying about the food on the cafeteria tray and just get some Power Yogurt down her. We know she’s not getting enough protein to fend off infection for long. Unfortunately, our experience is not unusual.
I learned long ago when I had a rare parasite that caused recurring pneumonia that when you’re weak and in pain, you must have an advocate with you every step of the way or you can quickly be dismissed and become lost in the system. My lawyer boyfriend was with me when I was trying to get a referral to a large diagnostic clinic. He could barely contain his laughter watching me bite my lip when my pulmonologist said, “If you didn’t have an intelligent boyfriend here with you, I’d say this is all in your head.” And he wasn’t the first physician to say that during my two year ordeal.
I was young, healthy, went to the doctor promptly and still almost died with the first pneumonia after having been diagnosed with a bladder infection. I actually had psittacosis from Chlamydia psittaci which had become encapsulated in a recently capped tooth. This experience made me acutely aware that navigating medical care is best played as a team sport.
During that two years, I read all of my medical charts. This was also an eye opening exercise. The history recorded in the charts often wasn’t even remotely related to the history I gave. I realize my symptom group was unusual. Well, actually it wasn’t for someone with psittacosis, but it was unusual enough for one nurse to determine that I was just a bad historian.
At some point, most of us will need the expertise of the medical system. Without it, we do not have the depth of knowledge, necessary labs, sophisticated testing equipment, or access to medication that may be necessary to get us through a crisis and put us on a path to improving health. Is there anything we can do as patients to make sure we have the best chance of getting optimum results from medical care?
While nothing will guarantee a certain health outcome, here are 5 things you can do to facilitate a more positive journey in the healthcare system:
1. Choose a friend or family member you trust to act as your advocate in any major medical event. The best advocates care about your well-being, can remain calm in a crisis, are good listeners, can process and prioritize information, are unafraid to ask questions, and will tell you the truth in a kind manner.
2. Keep a daily journal of your condition. Try to record facts without interpretation. For example, if you feel your energy level has significantly dropped, record how much sleep you get, when you get it, how many fluids you consume and what kind, what you are eating, how much and when, how much exercise you get, what kind, and when you get it, then note how tired you feel on a scale from 1 – 10.
Doing this every day will help you have a realistic picture of what is happening over time. It will also help identify areas in which a change in routine may help improve your symptoms. If you are too weak to do this, your advocate or caregivers can make notations for you and record their observations as well.
3. Be informed. Ask questions. Make decisions. You are ultimately in charge of your healthcare. If you do not ask questions, you may be passively agreeing to treatment you would never actively choose. It can be helpful to think of yourself as pilot in command.
In an airplane, the pilot in command (PIC) is the person who makes the final decision about what will happen in an airplane. He can accept or refuse instructions from air traffic control and he is in responsible for all operations of the plane until he actively turns over command to another pilot by saying something like, “your plane or your aircraft”, and hearing “my plane” as a response. He then repeats, “your plane”. This is called a Positive Exchange of Controls.
If air traffic control says, “23 Charlie Tango cleared to land 22 left” it does not mean that the PIC must land the plane. He can request a different runway. If he is not cleared for the requested runway, he can initiate a go-around.
You are the pilot in command of your healthcare. You will receive lots of information from instruments and personnel. The more informed you are, the better the quality of questions you can ask and the better resulting decisions you can make. Your doctor is air traffic control. From his vantage point, he can see traffic and the runway better than you can, but he won’t know that you had a fuel leak and do not have enough glide distance to make the runway without input from you. You have the best odds of a safe landing when you work with your doctor as a team to identify alternative landing areas. Once determined, you decide the destination with which you feel most comfortable. You inform the doctor where you prefer to go from here, then you focus on the procedures that will result in your best chance to safely reach the landing area.
Just as it is common to think that air traffic control actually means the tower is in control, many patients do not recognize that they have the choice to request a plan that fits them. More typically, they defer to whatever initial plan the doctor proposes while they’re in her office and then fail to follow that plan once they get home and it doesn’t fit their lifestyle. This can be detrimental to any long-term progress.
4. Treat everyone kindly beginning with yourself. When you have a chronic condition rather than a medical emergency, it can slowly eat away at your energy and attitude. A desire for relief may lead to impatience with medical staff. While you may feel justified in taking your frustration out on nurses, techs, or aides, doing so will not encourage them to treat you kindly.
The simplest way to prevent reaching the point at which you lash out is to recruit consistent, adequate social, emotional, psychological, and spiritual support. These needs are very individual, so a high level of self-awareness will be helpful in determining what and how much you need.
Incorporating a regular exercise, meditation, or yoga practice can strengthen your connection to internal resources. You may also find restoration in activities like gardening, cooking, writing, reading, fishing, walking, painting, woodworking, swimming, dancing, volunteering, or playing with your children or grandchildren.
5. Decrease the need for medical intervention. You don’t have to worry about navigating the medical system when you’re healthy enough to only require routine check-ups or regular monitoring. In some cases, significant lifestyle changes can minimize the need for medical intervention. The effects of regularly eating a balanced diet of fresh foods, drinking plenty of water, getting adequate sleep and exercise, and filling our lives with passion and laughter should never be underestimated.
The new year is always a great time to wipe the slate clean and do things differently. I hope you’ll find these tips helpful the next time medical care is required.
When your child is diagnosed with a food intolerance, start where you can today.* I recently met someone at a boxed dinner event chowing down on everything in her box. She offered me part of her cookie. When I said, I’d love to eat it, but I’m gluten-free. She said, “I’m supposed to be too.” I can’t count the number of times I’ve heard this. And when it comes to children who are picky eaters already, it can be easy to ignore the risk of long-term effects and ignore the doctor’s advice.
The problem with that approach is our children could feel so much better, avoid potential chronic disease, and excel in ways we can’t imagine. I say this as someone looking back remembering how I’d puke when running track after a certain kind of breakfast. It was embarrassing to hurl in front of my classmates.
Cutting my track career short wasn’t particularly problematic, I wasn’t that good. But I was a good swimmer who felt increasingly less motivated because I didn’t want to expose my problematic skin. This has even affected me in adult life – robbing me of the joy of being in the water as often. Yes, rash guards help, but having to do something to hide something still weighs on self-esteem and makes everything feel less care-free.
I don’t think any of us want to deliberately rob our children of the option to feel carefree. We just may not be up for the struggle we imagine it will take to get our children to change how they eat. And it can be a real struggle. I’ve seen even very young children who will refuse to eat for so long that they make themselves sick. We don’t want to make food a battlefield.
The age and personality of your child will lead you to the best approach. Observation and listening are a good first step. From that point, start where you can today and build up to the optimum diet.
So often when we get a diagnosis that requires dietary change, we feel like we’ve just been told we have to halt everything immediately and do a 180. While this is true in the case of life-threatening allergies, other conditions allow us time to get our footing and make a plan.
A simple plan can begin with serving familiar foods that naturally fit the regimen your child has been instructed to follow. This means you don’t have to alter anything immediately or announce you’re taking something away. In fact, you can eat this way for awhile before even discussing upcoming changes (depending on the age of your child).
Once you are ready to ease further into the new plan, mention to your child that they can keep eating the things like X, Y, and Z that you’ve been serving. From that point, introduce something new that’s an adaptation of a favorite or incorporates ingredients the child likes.
For example, if your child loves chocolate and needs to be gluten-free, begin the switch-over with chocolate cake, brownies, muffins, chocolate-chip cookies or pancakes. The goal is to ease into the restrictions by providing foods that feel good but are adherent to prescribed restrictions.
A diabetic child who enjoys chocolate might like strawberries dipped in lightly sweetened dark chocolate, hot chocolate lightly sweetened with honey, a brownie made with almond flour, or chocolate hummus on celery sticks.
You can incorporate your child’s best motivators – stickers, a treat, money, time alone with mom or dad, a movie, a trip to the park, a bug or dinosaur hunt – as incentives for trying new things. I just don’t like to begin with, or wholly rely on, incentives because it feels too much like bribery and as though I’m not confident the new foods I’m offering taste good.
That’s not the impression I want to create, and I’d like the changes to feel like an organic extension of what the kids already enjoy. But I’ll be the first to say, if it works, it works. You know your child better than I do.
Another consideration when making dietary changes is the altering of routine. Routines can be comforting. That includes meal times, locations, and menus. When there’s a way, I like to keep as much as possible the same until everyone is comfortable with the changes.
At my house, lunch and dinner are both variable, so I start by slowly introducing new foods into one of those meals before moving on to the other two. This lessens the shock of change.
Once everyone is feeling comfortable, it can be fun to have a contest among siblings to see who is the bravest and will try the most new things. If you’re worried no one will participate, imagine what would happen if you put a new kind of packaged sugary snack in front of them. You’d probably get at least one taker, right?
Even if they don’t end up liking the new snack, they’re willing to try it because they’ve had a good experience with something similar before. Building slowly to this point with new foods will build the same kind of foundation for comfort in trying new things at home.
It can be hard to stick to a plan, so committing in advance to a certain length of time for implementation may be helpful. Once you embark, you may discover that the timetable can be accelerated or may need to slow down. But don’t overwhelm yourself with the big picture at first.
Getting started is the key. Instead of worrying too much about what you’ll do tomorrow, start where you can today.
2. Keep a daily journal of your condition.
5. Decrease the need for medical intervention.
