MICROSCOPIC COLITIS SUPPORT

I am new to this forum. I am a 47 year old female that was diagnosed with Lymphocytic Colitis about 3 weeks ago. Since then I have been Gluten free. I am working on the dairy...but I still drink kefir. Not eating certain foods has been difficult for me. I find I only have diarrhea in the morning. Usually as soon as I wake. I go about 3 or four times (in about an hour or two) and then I am normally done for the day. Not always...but most of the time. No matter what I eat in my day, I don't get D again until the next morning. This has been the case since before I went gluten free...before I had a diagnosis. What I'm wondering is, how long does a food trigger usually take for most people to have a reaction or symptoms? Is my morning D a reaction to my evening meal? Also I find that when I take Imodium, the next day I am bloated and very gassy...with intense stomach pains. Any help would be appreciated. Thank you so much.

Hi,

Welcome to the group. Your pattern of bowel movements is typical for many of us. That frequency is what I would classify as a minimal-symptom case. Many of us have higher frequency, but it's often concentrated in the mornings. MC compromises digestion, so when you slow down motility with Imodium, the partially-digested food tends to ferment, resulting in gas, bloating, cramps, etc. IOW, it may be more comfortable to just go with the flow and get it out of the system.

You may not be able to recognize food reactions until your anti-gliadin (anti-gluten) antibodies decline to a more reasonable level. Anti-gliadin antibodies have a half-life of 120 days. This tends to dominate our immune systems, so it may take a month or two before you will be able to assess food reactions normally. After your anti-gliadin antibody level declines to a more normal level, you will be able to judge food reactions much more accurately. Normally, most of us react to gluten about 3–6 hours after exposure (after eating), but the timing can vary for some of us. Histamine-associated reactions can be almost immediate (a matter of minutes). At the other exdtreme, some of us react a day or more after exposure to some foods. Personally, my anti-gliadin antibodies were so high that I couldn't accurately identify gluten (or any other food) reactions until about 3 or 4 months after cutting gluten out of my diet. Early on, I seemed to react to anything and everything, pretty much at random.

Gzus wrote:Is my morning D a reaction to my evening meal?

Basically, yes. But until the inflammation subsides and our digestive system does some healing, we usually continue to react for a month or two (or longer) because of the residual gluten damage to the lining of our intestines. Gluten damage to the intestines heals very slowly, and only after the inflammation is reduced.

I hope this is helpful. Again, welcome aboard, and please feel free to ask anything.

Tex

Thank you for the quick and very helpful response! I truly appreciate it and this forum. I will try to be more strict with my diet and keep pushing on.

I was diagnosed with LC in Jan of this year. I have been struggling. I am very thankful for all of you generous people who reach out to try to help those suffering. Of course I have a million questions and am not sure where to begin but here goes.
I have not had normal stools in over 9 months. I have eliminated gluten, dairy, any fiber food, egg and many more. I am on budesonide for almost 4 weeks with no result. Is it safe to assume I will not be helped with this med?
How long will the elimination diet take to show any help? What kind of help can be expected?
Sometimes I practically exist in the bathroom - 20 - 30 trips per 24 hours.
I have started keeping a log of my meals and their effects. Sometimes I eat the same thing and am in bathroom anyway. Very disheartening.
Thank you in advance for any words of wisdom.
Co11

If you are toileting 30 times in 24 hours I'd probably give the budesonide another 2-4 weeks before giving up.
You seem to have extreme inflammation. Are you taking the 3 pills all at once in the morning?

Have you tried cholestyramine? Consider it when you stop budesonide.

Are you on any other prescription drugs? A lot of prescription drugs either cause MC or prevent us from going
into remission. I'd check with Tex or your doc if you are on any prescription drugs.

If you don't have Tex's book yet it is recommended. Link is in the upper right hand corner. It is the only
book on MC in the world.

Welcome to the forum!

Hi,

Welcome to the group. Brandy's questions and suggestions are right on target. As Brandy says, there are certain drugs that will prevent remission if you continue to take them. A few of us have had to use budesonide for as long as a couple of months before seeing any relief of symptoms.

Again, welcome aboard, and please feel free to ask anything.

Tex

Thank you for your replies. I am so grateful for the help. I have felt very isolated with this problem for some time.
I was diagnosed with the colonoscopy after 3 months of D. The GI recommend only a FODMAP diet which was not really any help. My D got terribly worse after the colonoscopy. Here are some questions I have:
1. Is it a common belief that LC is caused when the body has mistaken the good gut bacteria for bad and is attacking it?
2. When you are on the elimination diet, you still have D, so exactly what am I to expect with new foods? WD? Dramatic
Changes? Consistency? Frequency?
3. Is the common progression of this disease to get more sensitive/allergic to foods?
I am on No meds now other than the budesonide. I was on cholestyramine for 4 weeks. It seemed like it was helping and then I started to get worse so I stopped and started the Budesonide. Thanks again for your help. I will be ordering the book! Colleen

Colleen wrote:1. Is it a common belief that LC is caused when the body has mistaken the good gut bacteria for bad and is attacking it?

Well, yes, that's a common belief, especially among medical professionals, but in fact it can be caused by any source of chronic inflammation. The most common causes seem to be medications, including NSAIDs, PPIs, antibiotics, SSRIs, SNRIs, bisphosphonates, etc. But it can also be triggered by virtually any source of chronic stress, including food sensitivities, infections, intestinal parasites, even things such as stopping a long-term smoking habit. Chronic stress/inflammation causes leaky gut, and that leads to food sensitivities, which perpetuate the inflammation with every meal. The immune system is actually attacking the inflammation caused by the food sensitivities and the gut bacteria just happen to get caught in the crossfire. You can see a detailed explanation of the process in the book.

Colleen wrote:2. When you are on the elimination diet, you still have D, so exactly what am I to expect with new foods? WD? Dramatic
Changes? Consistency? Frequency?

It takes a while (on the diet) for the inflammation to diminish enough so that the healing process can begin, so yes, the D will continue for a while until the inflammation declines to a tolerable level. If you want to reach remission as quickly as possible, don't experiment with any new foods while on the elimination diet. You can do that after you've reached remission. If you continue to experiment before reaching remission, you may never reach remission. Without budesonide, you can tell when you're in remission. With budesonide, you can't tell, because the budesonide will mask some of the food sensitivities. The D should stop within a week or two with budesonide, but stick with the elimination diet for at least two or three months (or until you get EnteroLab results, so that you can fine tune the diet). If you discontinue the diet too soon, you'll relapse after ending the budesonide treatment. The relapse rate is about 85 % without the proper diet changes.

Colleen wrote:3. Is the common progression of this disease to get more sensitive/allergic to foods?

Yes. The immune system will become more sensitive for a while, even after treatment is begun, and the antibody levels begin to decline. But after antibody levels approach normal levels again, the immune system will relax it's sensitivity and slowly return to normal levels.

Tex

I have seen the product called Glutenease. Does that really work?? Seems counterintuitive.
Some foods are supposed to fight inflammation- green tea, blueberries etc. Are they helpful?Turmeric helpful?
I'm currently consuming only rice chex, 1 greenish banana, Turkey, weak tea and rice. It is helping with frequency - not consistency. Should I expect more? I'd like to put rice milk in my diet. Generally safe? 2 days ago I had around 20 trip to the bathroom. I had changed nothing in my diet. Cross contamination is my only conclusion? Only lasted that day. Could I take antihistamines now? Would it help? Lord knows it couldn't hurt. I ordered the book but have not recieved it yet. Maybe after I get it I won't be such a pain with all my questions!

Hi Colleen,

Yes, Glutenease generally helps. This product is best used as an insurance policy when one has to eat a restaurant meal. A high percentage of restaurant foods are not actually gluten-free as claimed. They're cross-contaminated with traces of gluten — enough to make most of us react. Glutenease will not digest 100 % of gluten, but it will usually cover enough of trace amounts to render a cross-contaminated GF restaurant meal safe for us. IOW, you can't take Glutenease and expect to eat a meal filled with gluten without any problems. But it will usually handle small contamination issues.

Those foods that are claimed to fight inflammation probably help a little, but in the real world, they don't seem to provide enough benefits to help significantly when we are reacting. For example, we would have to consume so much turmeric to make a difference that the sheer volume would make us sick.

If your diet is helping frequency already, you're probably on the right track. It usually takes two or three months for the diet to provide enough healing for us to be able to see significant improvement. A lot of us require six or eight months, or more. The gut heals slowly.

With budesonide, you should have already been in remission, but it's not always effective for everyone. Still, I would give it a little more time (as long as you're not having any adverse side effects), as it might be helping a little.

Rice milk contains traces of gluten (because it's processing includes a fermentation process that uses a barley malt starter), but the finished product is within the 20 ppm legal limit of gluten, so most of us can tolerate it. Almond milk, cashew milk, hemp milk, etc, are other options that don't contain any gluten, but most of them do contain some type of gum, which is a problem for some of us.

We all have an occasional bad day while we're recovering, and we usually don't know why. Don't let it discourage you.

Yes, it's generally safe to take an antihistamine. Sometimes they can make a dramatic difference.

I hope this helps.

Tex

Tex- I know you said not to be discouraged but my couple day improvement just collapsed back to square one or worse. I feel six seconds from tears all the time. The budesonide is not working. It seemed my last hope. I've been gluten free egg free and dairy free since January. Now I only eat 5 things and it still does not help.
Question- my GI told me I could take as much pepto as I wanted. I read somewhere on this site some people are helped by taking 8 pepto/ day for not more than 8 weeks. Why? What happens in 8 weeks? What are the risks here?
Since pepto is the only thing that helps me function, seems like the thing to do. But I'd like to know the risks first. Do you spread the pepto out over the day? Take em all at once? Liquid or chewable? Pepto ultra or regular? Ok to keep taking the budesonide with the pepto?
So much I don't know.
Bless you and your crew for helping people like me. I'd be hopelessly adrift without you.
Thank you,
Colleen

Hi Colleen,

Sorry to hear about the setback. I assume you're avoiding soy and oats.

The reason for the caveats about the Pepto is that bismuth is a heavy metal and it's possible to experience a buildup above tolerance levels if the body doesn't eliminate it fast enough. If this happens, it can cause neurological symptoms and/or tinnitus. Some individuals have used it for longer periods without any apparent adverse consequences, however. If you've been using it and you haven't noticed any such symptoms, you may be one who is more tolerant of it. Here's a link to an abstract of the original study. You can assess the treatment parameters yourself.

Efficacy of open-label bismuth subsalicylate for the treatment of microscopic colitis.

Pepto is simply bismuth subsalicylate. It may have been administered in a single dose each day, but I believe that if it were me, I would divide up the dose during the day Any form of Pepto can be used, as long as the dosage of bismuth subsalicylate is roughly equivalent. This study was done in 1998. I'm not sure that Ultra was even available, then. Using Pepto concurrently with budesonide is not commonly done, but as far as I'm aware, the only significant risk incurred by using them together would be the risk of constipation. If that happened, you would need to reduce the dose of one or the other, but preferably the budesonide first. I hope this helps.

Tex

Thank you for your quick reply.
No soy, no oats. Quite honestly, I'm starving. I eat only rice chex, 1 banana per day (greenish), Turkey, rice and weak tea. I was doing ok on this until a few days ago. I thought I was getting somewhere.
How long does a flare generally last? I don't know how long I can go on like this. Dehydration got me this morning. Had to chug a 16oz bottle of water just to be able to stand up without falling over. Back to extreme WD.
I'm not a big baby but this is really kicking my a**
Thanks,
Colleen

Don't starve yourself. Eat more turkey. Be sure that it's not injected with a "tenderizer solution" It can be prepared in many different ways for variety (if you need variety), baked, fried, grilled, sausage, there's even turkey bacon and turkey jerky. Try lamb. We don't require variety in our diet, but we do have to have a minimum level of protein and fat. And we need to take in at least a minimum level of calories each day, on the average.

Are you sure that you react to potatoes, or sweet potatoes? They would provide a carb alternative for energy. Be sure that you're replacing your electrolytes regularly, because an MC flare causes the colon to waste electrolytes, and losing electrolytes (and water) is usually the main reason why MC patients wind up in the ER. Been there, done that, so I can certainly understand your situation.

Without any help from budesonide, it can take several months or more for the diet to enable us to reach remission. Perseverance is one of our best assets when we.re trying to recover from an especially tough flare.

A few of us react to Rice Chex.

Tex

Hi Tex- hope you can stomach more questions.
If the budesonide is not working and I'm getting worse, which I am, is it ok to just stop taking it cold turkey?
I took allegra which seemed to help for 2 days. Same diet- 5 things- now getting way worse than I ever was.
Today I'm not eating anything. Hope my blood sugar can stay out of the basement. But I have to to something to stop this constant D. Drinking water like mad to stay out of dehydration. I'd cry but there's no fluid for tears.
Trip to the bathroom every hour or less since 2am this morning. Complete almost clear water stools.
GF,SF,DF,CF. No vegetables, no fruit, no grains except rice. I even stopped eating that and it didn't matter.

Has anyone tried TPN to help this - cuz I'm considering it....
Thanks for your patience,
Colleen