New and Treatment ?

[wekee]

Hi. I am new to this group. I was diagnosed with microscopic colitis this past month, but have been having issues potentially with it for this past year.

I began having issues last September that I found out within a very long 5 months was related to gluten issues. I had what was called a panic attack a short time after eating a breakfast English muffin sandwich. Within several minutes I began feeling super tired (10:30 am not normal) and also started getting congested. Within the next hour or so I started feeling like I was going to black out, was having a hard time catching my breath and my fingers were getting tingly (all signs I know now of gluten intolerance), but the walk in clinic I went to gave me an anxiety medication as I was told it certainly was not an allergy situation. I have had allergies all my life...I can tell when I have an allergy issue. Leaving the clinic I went home and went to sleep for most of the evening. I now know that many people have reactions to gluten like this.

In October I began having right flank pain, bloating and constipation and was tested for liver, kidney and gallbladder functioning with no issues. All my bloodwork came back fine so my primary gave me a clean bill of health. We did discuss it maybe being a fiber issues, as I was eating healthier .... some vegetarian meals and had increased my "whole wheat" consumption, because it's good for you!

After about a month of continued bathroom issues and stress due to this I was diagnosed with anxiety issues and given another safer anxiety meds. I was having heart palpitations, dizziness, feeling like I might black out while driving and was getting depressed.. This was the first time I had ever had any issues with depression and I am very anti-meds but broke down by December and sent home....all would be fine. I had also cut out a great deal from my diet...a lot of fiber, which interestingly enough consisted of bread, cereal and pasta for the most part. I kept a food and feeling journal and documented when I was feeling worse/dizzy and tired and at times since documenting I know now that I was still eating lots of gluten.

And just to note: When I did initially cut out the fiber and sugar in October .... my stomach deflated within 3 days. That was weird and with it I felt like my lower gut had been kicked significantly. I was sore everywhere, maybe from being so bloated for awhile. But my bathroom issues eventually got much better and I lost 20 lbs. from Oct - Dec. My primary thought this was great! I should be happy!

I was seeing an ENT (to make sure my dizziness was not inner ear related), my ob/gyn and my primary on a fairly regular basis. I was also having supposed bacterial infections, which I now know is intersistial cystitis (bladder disorder). I was up all night going to the bathroom. The only way I got any sleep was to take benadryl.

I was also having a lot of lower back pain here and there.

My ob/gyn wanted to check my Vitamin D level in January to see if it was the reason I was not healing. Even though he was misdiagnosing me too....he at least got us to touch on the real problem. I was low with Vitamin D and he put me on a high dose of it and said, "Everything will be great ... Unless you are having an absorption issue". This was the key to me figuring it all out. He also wanted me to eat "Normal" again since I was not having any stomach issues anymore. I went home and it took me a few days to decide to start eating normally. I started with cereal and for 4 days was fine. Then I added bread and within 2 more days I was significantly bloated again (weighing 125 and looking quite pregnant), my face broke out in this tiny acne that funny enough I had had for the past few years but had gone away by end of November, my knees started hurting again (another thing that had just recently gone away) and my dizziness finally made it over the antidepressant mask.

I found myself googling again all my symptoms and low and behold there they all were: bloating, dizziness, joint pain, depression, acne and yes, bladder issues all due to gluten. I called my primary told them I wanted the blood work for celiac done immediately. They did do it with me eating gluten for a little over a week and I got a negative. I had read that was a possibility but just wanted it done as quickly as possible and I was getting off the gluten 100%. That was almost a year ago.

I have gotten very good with my diet, but I was eating out a lot and thinking the gluten free meals from the menus were good. I started getting a lot of my symptoms back slowly by this September and my Vitamin D level was dropping quickly. I also began having loose stools that was just not clearing up.

I went back to my primary for my yearly and told him I thought I needed to see a gastroenterologist. I finally did and he was ok with me already being gluten free. I told him about my past year and that I was having continued problems and notably the next morning from having a glass of wine (was the only food source I could tell was making a difference). He scheduled me for an endo/colonoscopy. There was mild inflammation of the esophagus due to acid reflux. I have no symptoms of this and also some inflammation in my colon, which with biopsy was diagnosed with mild microscopic colitis.

He put me on the budesonide treatment 9 mg a day. I took one days worth and had significant stomach cramping and some dizziness. I had to cancel half a days worth of work as I was so miserable. Even though I read this was a side effect, when I called my gastro he said no this was not....must be something else. I just love doctors!

Since it is the holidays and I have family visiting I decided not to take it until they are gone.

I am no longer taking chances with eating out, I take 5000 iu of Vitamin D now and no longer am having lower back pain, bladder issues that were creeping back, acne and joint pain and the creeping moodiness that was also coming back. I am almost dairy free and now since reading about wine and microscopic colitis I have just cut that out as well.

Is it possible that I will heal my colon without the steroid treatment by just cutting out the diary and wine as well as the continued eating at home to remain gluten free? I just hate side effects and will do it if I have to I just hate not feeling normal.

My bathroom issues are not an all day thing and are just that I go easily in the am. I am not running to the bathroom ever during the day.

What other things should I look at that might be a trigger?

Would it be worthwhile to try the Pepto Bismal treatment that I have read on here first?

I have read on here about Motrin as well. Is anyone able to take Motrin with MC? I don't take pain meds often at all, but when I need to that is my go to.

I recently had blood drawn for the celiac gene and waiting on the results. I do believe already I have celiac regardless of what any tests have shown.

Thank you for any help. Am very thankful for the communities out here on the web....they have been more of a doctor than my doctors have been.

Funny enough or not, my great gastro I found ... he has been pretty good, but he was educating me on the gluten continuum and that I might just be intolerant and could have a beer every once in a while. I have to laugh now .... but it is sad to think how many people are being misinformed due to relying on the intelligence of their doctors, who really don't have the whole picture.

[tex]

Hi Wendy,

Welcome to our internet family. Like many of us, you had a tough time getting a diagnosis, but you definitely seem to be on the right track, now. Good for you, for being so proactive about your health. As you have found, if we don't look out for our own health, no one does, because there are too many problems with the way the GI specialists try to treat this disease. To answer your questions:

Is it possible that I will heal my colon without the steroid treatment by just cutting out the diary and wine as well as the continued eating at home to remain gluten free? I just hate side effects and will do it if I have to I just hate not feeling normal.

Yes, many of us here have reached remission and maintained it by diet alone, (including myself). The drugs can help to suppress the inflammation, but the only way to prevent the inflammation from reforming, is to remove the offending foods from the diet, and when we do that, our intestines will slowly heal, as the inflammation fades away. Believe it or not, corticosteroids, actually slow down healing, so they tend to delay complete recovery, though they can help to bring remission from diarrhea much faster than the diet alone.

What other things should I look at that might be a trigger?

The most common food-sensitivities are gluten, casein, (the primary protein in all dairy products), and soy, (including all legumes). Many of us can reach remission simply by avoiding those foods, and some are successful by only eliminated gluten and casein, (about half of us are sensitive to soy). Of course, some of us have other food sensitivities, such as eggs, yeast, corn, etc., and those cases are more difficult to treat, obviously. The stool tests offered by Enterolab, in Dallas, TX, cannot be beat for determining food-sensitivities. The blood tests are pretty much worthless for detecting the type of food-sensitivities that we have. Unless we have fully-developed celiac disease, for example, we will always get a negative result on the celiac blood tests, even though we are at least as sensitive to gluten as a typical celiac.

Would it be worthwhile to try the Pepto Bismal treatment that I have read on here first?

For those having severe, debilitating diarrhea, the Pepto treatment can help to gain control much faster than by diet alone, but many of us seem to be sensitive to one or more ingredients in Pepto-Bismol, so we don't generally use it unless there's an urgent need. If your D is not a major disruption in your life, diet changes alone are usually an optimal treatment. If the D is a serious problem, though, then a medication can help to stop it sooner than the diet alone can bring relief.

I have read on here about Motrin as well. Is anyone able to take Motrin with MC? I don't take pain meds often at all, but when I need to that is my go to.

All NSAIDs have the potential to stimulate the production of leukotrienes in IBD patients who are sensitive to salicylic acid, which will tend to generate inflammation and diarrhea. Not necessarily every one of us falls into this category, but most of us have to avoid NSAIDs, because they are the primary cause of drug-induced MC. Acetaminophen, (Tylenol), is basically the only non-narcotic analgesic that we can safely use. There are a few natural pain-killers that some people find effective, (such as Boswellia seratta extract), but like all meds, they don't work for everyone.

Funny enough or not, my great gastro I found ... he has been pretty good, but he was educating me on the gluten continuum and that I might just be intolerant and could have a beer every once in a while. I have to laugh now .... but it is sad to think how many people are being misinformed due to relying on the intelligence of their doctors, who really don't have the whole picture.

It's sad, but many of us have found that much of what our GI doc has told us is just plain incorrect. They're slowly learning though, so hopefully, that situation will improve, in the future. At least your doc is open-minded enough to recognize that what we eat has something to do with digestive problems - many of them deny that diet has anything to do with MC.

Incidentally, there are numerous brands of GF beer available, these days. Actually, they're very low gluten, rather than gluten-free, but most people who are not extremely sensitive to gluten, can tolerate them.

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

Tex (Wayne)

[draperygoddess]

Hi, Wendy!

Welcome to the forum! If you've been here any time at all, you will know that Tex is our resident expert, and he gives great advice. I second everything he said!

What antidepressant did your doctor give you? Many SSRI's have also been related to MC. If you're still taking one, it could be negating the effects of your dietary changes. Definitely, it sounds like you're still reacting to something. Also, there are lists on the forum of "hidden" sources of gluten--it's possible you're getting it somewhere and don't know it. Also, sometimes after you get the gluten thing under control, other food intolerances will show up later (when your body is whacked out by gluten, it's hard to know WHAT you're reacting to!)

Wishing you a lot of answers and quick recovery!

[wekee]

Thank you for your responses so quickly.

I had a glass of wine the other night and noticed the burning in my colon around 3 am. I had no burning last night. I eat a banana, rice chex with almond milk and some unsweetened green tea for breakfast and have to go to the bathroom shortly after this, but generally that is it for the day.

Have any of you that have taken the entocort had side effects? I am irritated that I paid $200 for this and had such an awful reaction. I wonder though if I take for more than one day I will have fewer reactions. I would though love to get my money back on it.

I am working on the dairy. While we have gluten free dinners, we don't have completely dairy free due to butter or butter products. We do use Almond milk and Coconut Milk and Earth Balance Soy free, but like last night my husband cooked red potatoes and squash in a bit of butter.

My husband and kids (15 and 10) do eat gluten free dinners now. It took some work, but we have found substitutes for all. The only thing that they will eat with gluten is when we do burgers/buns, but we all love brown rice pasta and have changed all spices and sauces now.

I was writing a book and was trying to keep it short. Luckily due to the internet and some of the Celiac boards I had read that many were able to get off of their antidepressants shortly after gfree. I went off gluten last Feb (minus some cross contamination eating out now) and got off the antidepressants in July. I did it without the help of my primary. I am sure he was not happy when I went back in October telling him I had gotten off of them. I did bring him tons of hand outs on all my symptoms including the depression. I really was mad that he did not put two and two together. I had been asking him if all these symptoms were related and I always got a no. But I knew they must as I had been relatively healthy before last fall minus some seasonal allergy issues.

Presently I take:

5000 iu of Vitiman D3
800 mg of Magnesium ( I realize this could be causing some of my symptoms, but I get muscle twitches when I have gone lower at times, although that might be due to being cced as well)
Calcium/Zinc
3000mg of Fish Oil
Little Critters kids vitamins I don't tolerate adult vits well
A probiotic
Digestive enzymes before lunch and dinner
10 mg of Zyrtec daily
Flosnase as needed
and an occasional benadryl

Going gluten free also improved my sleep...for the past few years I was constantly waking in the middle of the night and subsequently was tried during the day on top of probably having the gluten sleepies.

I also had irregular periods for the past several years. Heavy bleeding and this completely changed when I cut it out 100%. My ob/gyn was surprised but of course did not have much to say about that.

He and my gastro thankfully do agree that gluten is an issue. I could care less if I ever have a celiac diagnosis. I just know I have a severe sensitivity and oodles of the symptoms.

Funny you should mention the gfree beer. Last time I had one I had some stomach issues and a very bad headache, so I gave that up too!

Thank you for all your help. I am not in a support group but have found so many very helpful people on the internet. I also started a blog page this past year just to vent and share some.

It is: palmtreesandglutenfree.blogspot.com/

The only thing I find challenging anymore and frustrating is eating out. I will only go to certain places now, rarely eat at fast food and will have an occasional pity party due to not being able to enjoy that experience anymore. I have started telling my family to go without me at times. I am frustrated with restaurants that say they have gluten free menus/meals and yet no nothing about cross contamination issues. I have learned that the hard way.

Thank you again!

Wendy

[tex]

and have to go to the bathroom shortly after this, but generally that is it for the day.

This is common for someone with an IBD, but if it only happens once a day, you're doing way better than average.

Have any of you that have taken the entocort had side effects?

Unfortunately, Entocort causes neurological side effects for a significant percentage of us, and since that's not adequately addressed on the label, many GI docs are not even aware of it, and will argue with their patients that the reaction couldn't be from the drug. Trust me, it can, and almost surely was, in your case. Not only do most GI docs not understand how to properly treat MC, but they don't really understand the treatments that they do prescribe, either.

I really was mad that he did not put two and two together.

Unfortunately, most doctors don't pay nearly enough attention to the things that they could easily learn from their patients, and if there is not a random, double-blind study to back up what a patient tells her doctor, they typically assume that the patient is just confused, or the symptoms they describe are all "in their head". When a doctor doesn't understand what is going on in a case, and the treatment they prescribed doesn't bring the expected results, they typically try to blame the failure on the patient's failure to properly follow their instructions. IOW, when all else fails, blame the patient. Also, many doctors still believe that the only significant symptom of MC is watery diarrhea, (based on the original description of the disease), and so most other symptoms, (especially the neurological issues due to gluten-sensitivity), are off their radar.

Your vitamin D supplement is excellent. That's twice as much magnesium as you need, so if you have muscle spasms at a lower dose, you probably are not absorbing it very well. I take 400 mg daily, but many members here can't do that, because magnesium acts as a laxative in doses in that range and higher, for many of us. Some members here use topical magnesium, (either a spray, an oil, or a soak), in order to increase their intake without causing GI issues.

Also that's enough fish oil to cause D for many/most of us, but if you can tolerate that much without triggering D, then it's probably healthy.

Some of us, (including myself), cannot tolerate digestive enzymes, but if they don't cause nausea, vomiting, or D, they they may not be a problem for you.

When traveling/eating out, many of us carry a "To The Chef" card, that not only describes what we cannot eat, but also what we can eat. Most chef's appreciate the extra information on foods that we can safely eat, and if we carry plenty of spares, all we have to do is to hand it to the wait person, to give to the chef, and it cuts out all of the miscommunication that often prevents us from eating out safely. Here's an example of such a card:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=15146

You're most welcome,
Tex

P. S. I forgot the wine - theoretically, wine should be safe for most of us, however, some of us are sensitive to sulfites, and all wines contain some naturally-occuring sulfites, (which may or may not be a problem at that level), but some wines contain a lot of added sulfites, (as a preservative), they definitely cause issues for anyone sensitive to sulfites.

[DebE13]

Tex,

What neurological side effect does Entocort cause?

I asked my GI earlier this week if he thought I should try Entorcort again (tried it 3+ years ago when I was first diagonsed and it didn't help) in addition to the prednisone I'm waiting to taper off. I didn't get answer about that one but he extended my current dose of 20mg til the new year then to drop it to 15mg for a week and to call back. Guess I'll have to ask again at that time but now I'm curious about those side effects and if I should hope diet alone will eventually work.

I'm also taking a small dose of cholestyramine once daily but not sure if it's helping or not. I've been GG/DF for almost a month now and have had minimal improvements in my long list of complaints- not sure if it's the diet, the meds, or a combination of both.

[tex]

DebE,

Entocort can cause problems such as dizziness, balance issues, vision problems, etc. Such side effects are not particularly common, but they're not rare either - quite a few members here have experienced them. Sometimes they can be minimized by reducing the dosage, and sometimes they're too severe to tolerate. A few members who have severe side effects to a normal dose, find that they are just extra-sensitive to the drug, and they can control their symptoms well with only a third of the normal dosage per day, and at that low dosage, the side effects are minimal.

I've been GG/DF for almost a month now and have had minimal improvements in my long list of complaints- not sure if it's the diet, the meds, or a combination of both.

Maybe you just need more time. If you're not already minimizing fiber and sugar, and avoiding artificial sweeteners in your diet, you may need to try that, also.

Tex

[DebE13]

OK- good to know.

I've already eliminated all artificial sweeteners & processed foods from my diet for quite some time now which pretty much takes care of my beloved sugar. (Would "sugar" include the natural kind too in fruits, etc?) I read on a differernt post about taking the skins off fruits and cooking them? I wondered about that because I turn to fruits to satisfy my sweet tooth.

It's hard to tell if fruits are causing any problems because the prednisone is pretty much managing everything right now. But as my dosage tapers the BM's are getting softer (big surprise ) I'll have to be patient and wait for the results from Entero Lab to see what to focus on first in the food department.

For years I've been telling the doctors that it's diet related because EVERYTHING I ate made me feel sick which was incredibly frustrating because I expected to feel at least a tiny bit better once I eliminated all the "crap" from my diet. I yo-yo'd with that for a while because I figured if eating "heathy" wasn't making an improvement I might as well enjoy all the naughty foods I was accustomed to. I was also gauging things on D- there was no improvement and I didn't make the connection, at that time, that all the other problems I was/am having were related.

There sure is a lot of money to be made out there on us- maybe it's not intentional but what would happen if the doctor would simply advise a dietary change first? I have a long list of woes that I keep bringing up and I feel like they roll their eyes when I leave the office. I truely do not enjoy spending the time or money visiting them but when I tell them my eyes burn & hurt, have a puffy feeling in my face, have low back pain, over-all body aches, extreme fatigue, nausea, stomach pain, bloating, chills, hot flashes, facial rashes, night sweats, the shakes before eating or sometimes after eating......and it goes on, I'd like more than another pill. The opthamologist gave me a bagfull of OTC eye drops for dry eye and recommended plugs & possibly restasis, the rheumatologist sent me home with a mountain of brochures for my sleep issues (due to the prednisone) and told me I have chronic pain something/fibermyalgia and should read through them to decide what I'd like to try. I almost laughed or cried right there in the office (that was a $500 office call but "they" won't cover other beneficial testing that we need). I read through the medical brochures and recycled the drug info. Oops, didn't mean to go on a rant but really, do I need to take another pill? And they look at me like I'm nuts when I tell them I ready to do my part, whatever it takes, just with as little RX meds as possible.

My family doctor told me this summer that I needed to determine quality of life and referenced people in Africa who had medical conditions and no access to drugs that would give anything to be able to take prednisone to have a better life. Those comments did make me think and at that time I felt like I had one foot in the grave and the other on a banana peel, but at the same time I kind of felt like the little kid at the dinner table being told to clean my plate because of all the starving children. I've always had that nagging feeling from within that drugs aren't the right long-term answer and as I learn more everyday, I have hope. It's finally set in that this will most likely take years. I though the 4 month elimination diet was a lot to ask. Silly me.

[tex]

(Would "sugar" include the natural kind too in fruits, etc?) I read on a differernt post about taking the skins off fruits and cooking them? I wondered about that because I turn to fruits to satisfy my sweet tooth.

Yes - the primary sugar in most fruits is fructiose, which is more difficult to digest for everyone in the general population, and even more difficult to digest for someone with MC. Too much of it usually causes problems for many of us. Many fruits also contain sorbitol, (a sugar alcohol), and many of us, (including myself), cannot tolerate very much sorbitol before we run into trouble.

We recommend peeling fruit and overcooking it, because most of the fiber is in the peel, (also most of the pesticides and preservatives, if any are present), and well-cooked fruit is much easier to digest by a compromised digestive system. Moderation is the key, for many of us. IOW, too much can cause problems. Fruit is naturally going to cause softer, less-formed BMs, because of the fiber and the sugars. That's true for anyone who doesn't have MC, as well.

My family doctor told me this summer that I needed to determine quality of life and referenced people in Africa who had medical conditions and no access to drugs that would give anything to be able to take prednisone to have a better life.

I have a hunch that your doctor is slightly embellishing the facts. My guess is that those people that he referenced in Africa might be willing to give anything to be able to resolve their health issues, but I seriously doubt that they would be anxious to start taking a drug such as prednisone, if they were aware that it would slowly destroy the ability of many of their vital organs to function normally, if they tried to take it on a long-term basis, and if they knew that their symptoms would return, as soon as the drug was discontinued, (after going through hell to wean off the drug).

Most doctors have a bad habit of viewing the drugs that they prescribe, through rose-colored glasses, and they almost always downplay, (or even deny), most of the side effects that their patients have to deal with, because of them. No, what those people in Africa actually want, is to get their health back - they don't want to be able to take prednisone, and the odds are high that either something in their diet, or something missing from their diet, is the primary cause of their health issues, in the first place, (not some inherent need to take prednisone - no one needs to take prednisone - it's not like it's one of the essential amino acids.

I never cease to be amazed that such well-educated people, can't comprehend something as simple as the fact that our health is ultimately determined by what we eat. It's not rocket science - why on earth can't they comprehend it? I'll bet that it would be virtually impossible to find a farmer, anywhere in the world, regardless of any lack of education, who's good enough at his occupation to make a living from raising livestock, who would wonder why his pigs, or his ducks, or whatever, were not thriving, if they were not healthy, and were not gaining weight. Any farmer worth his salt, would immediately suspect the feed rations that the animals were eating, (unless, of course, there were obvious signs of some communicable disease), and the farmer would do whatever he could, to correct the problems with the rations. Why? Because that's a no-brainer. Health is directly related to diet.

Tex

[Lesley]

There sure is a lot of money to be made out there on us

By George I think she's got it!!

Well said! I have also learned to be skeptical of doctors, ESPECIALLY GIs about this problem, because they don't know much, but won't admit it.

[sarkin]

Welcome, Wendy!

I'm on the "healing through diet" program, and so far have been very lucky. I did use Pepto in the beginning, but not for the full 8 weeks at the full dose. Your thinking and approach sound smart, and it seems you're already seeing results. Good for you!

It's weird that we have to be our own doctors - or maybe it's not so weird... realistically, who has our best interests at heart more than we ourselves do?

DebE, sorry about that little 'lecture' from your doc. It sounds like frustration about you not being the "perfect patient" by responding magically to his idea of what should work. Of course, self-control in the frustration is a virtue... perhaps your doc might want to give GF a try for a few weeks? Might help with that temperament issue, and it sure does help develop some ability to self-regulate!

Sara