Newly Diagnosed Newbie

[Robin.booboo]

Hi All,

I've just recently been diagnosed with collagenous colitis via colonoscopy with biopsies. I am so glad to finally have a diagnosis and an actual physical reason for the D!!! It has been six months since this flare started. I lasted about four months before I gave in and went to the doctor. After a bunch of blood tests and poop sample tests, they finally referred me to a GI and he did the colonoscopy. While I was waiting for the date of my colonoscopy to arrive, he had me start on imodium and almost immediately the worst of my symptoms vanished. I had been going around 12-15 times a day, with horrible stomach rumbling that would start as soon as I had a couple of bites of anything, and urgency. The janitor on the tenth floor of my building at work knows all my darkest secrets, unfortunately. I was waking up nightly with D, and had one accident as I was leaving for work one day, where I had to stop and change my clothes. Once I started taking the imodium, I still had the D, but only 2-3 times a day, and it has been gradually getting better and better. Now I've been on it for about a month and have had a few normal bm's. I've noticed that things are much better if I also have very small servings of whatever I am eating.

So, now that I have a diagnosis, I was elated at first, but now I'm back to reality and I have some thoughts/concerns/questions....

1) I am 43. Everything I have seen about MC says it is usually diagnosed after 60. I am pretty sure I've had issues for a long time, as I had two other occasions in the past where I had a lengthy bout of D, but this is the first time it lasted so long. Also, this is the first time when pain has been in the picture. I didn't start feeling pain until after the first three months or so. The imodium is currently working great, and my GI wants to keep me on that unless it stops working. Right now, I'm only taking 1-2 a day with great results. BUT, I've noticed that some days are worse than others and I have to take more. My GI said it can wax and wane, but I am wondering if this is going to gradually get worse over time?

2) If this is truly an auto-immune problem, then that ties in a few other random "issues" I have had for a long time. In my early twenties, I slowly lost a patch of hair that grew to about the size of a silver dollar from the crown of my head. I went to zillions of dermatologists and tried every kind of treatment and nothing made it grow back. I eventually had a hair transplant (micro-grafts) which did not take (they fell out) followed by laser treatments which didn't do anything. Finally, I went to a dermatologist who specializes in scalp reductions and had a scalp reduction (basically cuts out the bad spot and sews the healthy parts on either side back together). That finally worked and now I don't have to wear my hair in a clip to cover up the area any more. Anyway, one of the dermatologists at some point mentioned Lupus, but I didn't have any other symptoms and they never tested me for that. Now that I know about the MC, I've been looking at other auto-immune related things, and I see that patchy alopecia is one of them. The other possible auto-immune issues I have are: An itchy rash on my lower shins which I have had forever. I manage it by shaving my lower legs every day and slathering them with Eucerin after the shower. I also get little bumps on my lips which aren't visible and you can't feel them with a fingertip, I can only feel them when I rub my lips together. It sometimes itches too. I also get flushing in a rosy red patch on my cheeks and across the bridge of my nose. That does not itch or become raised like a rash, but it is annoying. Very rarely, I get weird joint pains, like sharp shooting pains on the tops of my toes where they connect to the foot. All of these things often seem to get worse along with the severity of the D, so I think they are all tied in. I'm wondering if I should look into any of that further. They are just annoyances, but it makes me think there is a bigger picture. I mentioned it to my GI, and he didn't think it was worth pursuing and in fact, he didn't even say that the MC is an auto-immune problem! I have allergies and problems with post-nasal drip and sinus infections as well, but hadn't seen anything to indicate those are auto-immune related. What do you guys think?

3) While seeking diagnosis, I had plenty of time to experiment with food elimination. I tried eliminating gluten and didn't have any change whatsoever, plus my blood work came back negative for Celiacs, so I happily went back to eating wheat. Also, right after the colonoscopy while I was waking up, my GI gave me a pamphlet about eating fiber and told me to eat lots of fiber. It took a week before the biopsy results came back and showed that I have the collagenous colitis. He hasn't told me to stop eating fiber but from what I ham reading here, it's a no-no. So now I am confused....?

Thanks,
Robin

[jmayk8]

Hi Robin,
I am 29 years old and was diagnosed with MC early this year. I also have celiac and stay away from dairy, I am currently taking lialda and it has put me in remission (for now, fingers crossed)... Welcome to our family, everyone here is so very supportive and helpful, I am on my way out the door now but, my advice for now is stay away from the fiber!
Jenny

[tex]

Hi Robin,

Welcome aboard. MC can affect anyone, at any age. Our youngest member was 2 and a half years of age, when diagnosed. Her mother changed her diet, (against the recommendations of her team of doctors, and with in a month or two, she was in remission, and she has remained in remission ever since, by strictly avoiding her food-sensitivities, in her diet.

Your doctor doesn't understand MC. Imodium simply slows down motility in the digestive system, it does nothing to address the inflammation that causes MC, and if you do nothing to control the inflammation, the damage to your intestines continues to accrue. Virtually all of the symptoms that you described are almost certainly associated with gluten-sensitivity, and they will slowly resolve, (it can take a year or two), after you cut gluten out of your diet, 100%. You have had these issues for a very long time, and it will take a while for them to resolve, but if you do much reading on this board, you will discover that many of us have eliminated the same symptoms by changing our diet.

The blood tests are worthless for detecting the type of gluten-sensitivity that we have with MC. Those tests will only detect fully-developed celiac disease, and very few of us have fully-developed celiac disease. Those tests are one of the reasons why it takes an average of 11 years to get a diagnosis of celiac disease - the doctors don't know how to diagnose it, until the intestines have sustained major damage.

As Jenny mentioned, virtually none of us can tolerate significant amounts of fiber, until we are in remission, because fiber causes additional damage to an already inflamed gut. Your doctor obviously doesn't know the difference between MC and "IBS", (a disease which only exists in the minds of doctors).

Again, welcome aboard, and please feel free to ask anything. If you spend some serious time reading on this board, after a few weeks, you will know much more about treating this disease, and living with it, than most of the GI docs in the country. To know more than the doc you have now, would probably require only about half a day's worth of reading, because he obviously doesn't know how to treat it. You're very lucky that he figured out how to diagnose it.

Tex

[draperygoddess]

Hi, Robin!

Welcome to our little family! If you want answers to your MC questions, this is where to find them. I'm 40, and have had symptoms for years. Tex is right--most of our doctors know very little about this disease. (Mine doesn't even know how to diagnose it, apparently.) I wouldn't be so sure that gluten isn't your problem. It may just not be ALL of your problem. I am gluten intolerant, but I'm also lactose and casein intolerant, so just stopping gluten didn't make a difference in my symptoms. And yes, Immodium may stop the D for awhile, but if you don't get to what's causing it, it'll just come back.

This can be overwhelming and discouraging to deal with, but the folks here are GREAT listeners, and they also give great advice. As many others have said, you can--and will--get your life back. It will get better! Best of luck with your recovery!

[Robin.booboo]

Hi All,

Thank you for the replies! The news is discouraging, though. If it takes a year or two in order to see if the gluten free diet has results, and then even longer to see if you also need to remove casein, how do you stay motivated?

Sadly, I have been eating a lacto-ovo vegetarian diet for the past four years, up until I tried to go gluten free to see if it would help at which point my food choices were so limited I had to start eating meat again for the variety. From what you are telling me, and what I am reading, I have been eating a concentration of all of the things that are worst for me for those four years. I had been having lots of yogurt, legumes, soy products and wheat products. Now it sounds like I will have to go to the opposite extreme.

I'm also disappointed in my allergist. I reacted to a bunch of things when I was last tested, pretty much all of the common allergens of grasses and trees, and also foods including wheat, tomatoes, potatoes, strawberries, and more, however she said not to stop eating those things, just to eat in moderation unless I had a reaction to them, and I had allergy shots for about a year, but didn't notice any difference. Then my schedule changed at work and I stopped going. When I went in, it was for the sinus problems, so I assumed she meant that if I ate something and then started sneezing or having problems breathing or something, THEN I should remove from my diet. Nobody said anything about any of these foods possibly damaging my intestines or what to look out for in terms of "reaction". So all this time the signs were there, but none of the doctors I saw connected the dots or gave me information that let me connect them. Now it is all coming together and making sense, but even when I point out the connections, they say it is unrelated! And how am I supposed to know that reacting on an allergy test to wheat might mean that when I eat wheat it is damaging my intestines, even though I wasn't feeling ill or anything? I thought all allergic reactions are either respiratory or hives. I've never heard of all this stuff before.

I will try the gluten free diet again, but we are going to my folks' for the week of Thanksgiving so that should be interesting. My Dad is old-school and he doesn't believe anything is wrong with anybody unless he has the same problem himself, and the only thing he has is migraines. I was so happy to report that I had a physical reason for the D, because he kept emailing me, trying to "talk me out of being sick" (his own words). Now if I tell my folks I need to go on a highly restrictive diet that the doctors don't recommend because they don't believe it is related, I can guess what he is going to think of that. The only way he might accept it is if I can explain I might be able to avoid taking medicine for the rest of my life, but he's more likely to say I should do neither. Luckily, I have my partner's support - as long as my "issues" don't affect him. Which means I can't raise too much of a stink about what to eat if we go on a trip or something. He was pretty annoyed that I "still" had the D when we went to Hawaii (around month four of the flare), as if I can turn it off for special occasions.

I'm afraid I am feeling very frustrated and discouraged right now. Sorry for whining/venting... I'm glad to have found this forum, to have a place to express all this, to people who understand. It's almost like this is a disease you can't talk to anybody about! Either they don't believe anything is wrong, or they downplay it.

[tex]

Thank you for the replies! The news is discouraging, though. If it takes a year or two in order to see if the gluten free diet has results, and then even longer to see if you also need to remove casein, how do you stay motivated?

It doesn't take a year or two to see improvement - it takes a year or two for healing to complete. Most of us are in remission in anywhere from a month or so to a year, depending on how aggressively we cut out our problem foods. Remission comes much sooner, for those who take Entocort, to help suppress the symptoms while the diet changes are healing the gut. Instead of waiting a year or two to eliminate additional foods, the way to reach remission is to cut them all out, right now, and if you want to challenge yourself with them to see if you are truly sensitive to them, you can do that after you are in remission.

And how am I supposed to know that reacting on an allergy test to wheat might mean that when I eat wheat it is damaging my intestines, even though I wasn't feeling ill or anything? I thought all allergic reactions are either respiratory or hives.

First off, most of us do not have any food allergies, (that would be modulated by IgE reactions) - we have autoimmune reactions, which are IgA-based reactions. I repeat again, the blood tests are worthless for detecting the type of food-sensitivities that come with MC, and so are the allergists who administer those tests - they don't understand MC, so they cannot effectively treat you.

I've never heard of all this stuff before.

Your doctors have never heard of it either - that's the problem.

I'll bet a gluten-free cookie that your dad's migraines are due to gluten-sensitivity. Gluten-sensitivity is a major cause of migraines - I used to have some really bad, totally debilitating migraines. I haven't had a single one, since my recovery by diet changes. I'll also bet another GF cookie that you will never be able to convince your dad that his health issues are due to gluten-sensitivity. Virtually no one believes it, until they see the results with their own eyes, (IOW, until they experience it themselves). Wheat is addictive - it contains gliadomorphins, that's one of the reasons why no one wants to give it up. Casein also contains casinomorphins, so it's also addictive, and it's harder to give up than wheat, for some individuals.

I feel your pain - we've all been where you are, and it's no fun, but we have to decide what's more important to us - our long-term health and quality of life, or making our relatives and friends happy, at the expense of our own health. FWIW, most family members don't understand and respect this disease, either. In fact, virtually no one who doesn't have the disease actually understands it. That's why we're here - we all understand, and we all speak the same language.

Please don't give up on your health - it's the most important thing you have, and you can definitely get your life back, if you are willing to take the steps necessary to develop a treatment plan that works for you, and your lifestyle. It's never easy, for any of us, but it's doable, and trust me - you are worth it. Please don't ever forget that. We're family here, and we care about each other. We're always here, anytime you need support, encouragement, a place to vent, or whatever.

We learn to adapt, as we go, in order to treat our disease, while finding a way to minimize the "hassle" with family and friends, and we learn how to stay on good terms with them, while doing what has to be done. Remember, regardless of what anyone else says, or thinks, they don't have to live in your body - but you do. Our body is our temple, and it's the only one we'll ever have, so we have to take good care of it, if we want it to serve us well, for a long, happy life.

Tex

[Martha]

Dear Robin,

You will get lots of good information and support here. This is such a great group of people--really caring and thoughtful.

Cutting things out of your diet seems like a formidable task, especially if you are trying to justify it to people. But it is worth it!

I used Entocort for 3 months, and it was so great to have that break from diarrhea, and to know what it felt like to be normal again. That was before I found this board, and when I stopped the Entocort, the D came back, just as my doctor said it would. But that gave me the motivation to try diet; first, because Entocort is really expensive so I didn't want to go back on it indefinitely, and second, because it just makes sense that what we eat would affect our bodies. I had never had any digestive problems before MC, so it seemed really unlikely to me that I could suddenly not tolerate foods I had been eating with no trouble (that I knew of!) But the alternative wasn't good, so I decided to give the Potty People's suggestions a try.

I had "cut out gluten" before in an effort to see if it affected me, but I didn't know that gluten is in other things than obvious wheat products, so I hadn't really cut it out at all. Once I really got rid of all the gluten, things did improve, and when I cut out dairy and soy 2 months later, it got even better. I also eat some dried coconut every day, as I think that helps too.


Sorry about your dad giving you a hard time. Could you just tell him you are on this diet because it helps you, and not tell him that it is not something that the doctor told you to do? Maybe say something like, "I've done a lot of research, and talked to a lot of people who have the same disease I have, and this is what they advise doing. Since microscopic colitis is an incurable disease, and the current medicines available only mask the symptoms, I've decided to give controlling my disease by diet a chance. It's kind of like people who have diabetes have to be careful of what they eat; people with microscopic colitis do better when they control their diets."

It's great that your partner is somewhat supportive. Remind him that watching your diet is easier than running for the bathroom.

One of the things that was said on a previous thread (by Sara and Tex, I think) is "Anything that doesn't nourish my body isn't food." It helps me to remember that when other people get to eat yummy stuff and my choices are limited. It may smell and taste good, but if it makes me sick, it isn't good for me.

Happy recovery, and I hope your Thanksgiving goes well.

[Robin.booboo]

Thanks Guys,

I'm not giving up, in fact I am very happy to have finally found some answers. I just wish I had known more about this earlier, so I am feeling sorry for myself because I've spent the past few years pretty much eating everything exactly wrong and I'm guessing that is what triggered the flare. So, the allergies are a different type of response and most people here don't have allergies, interesting. I guess I am just the lucky one to have both allergies and MC.

It has already begun. My partner is supportive to a point, but I told him what I have learned and he is already giving me the "so you're gonna believe a bunch of strangers on the internet over your own doctor" line. Looks like I'm on my own for this. Does anybody here live in my area who could recommend a nutritionist who is familiar with the MC-gluten connection? I live in Goodyear, AZ.

Thanks,
Robin

[desertrat]

Robin, I live in Chandler, Arizona. Looks like we joined almost at the same time. I was diagnosed with LC just this past Friday. Happy Happy Joy Joy. Like you, I am looking for all the answers and am discouraged to find that there is just not that much information about MC, except for this board! As for a nutritionist that is familiar with the MC gluten connection, I am not sure that exists! There are a few who might, but how to know? Arizona is filled to the rafters with homeopathic, naturopathic, somethingopathic (lol) all willing to charge big bucks to help you find out! (Trust me, I learned the hard way!) Except for Cigna, which I hear does cover naturopathic in Arizona, all costs are on your buck, not the insurance companies. I guess the only way to know is to call around, but that can be daunting and time consuming and a lot of nutritionists will gladly say, "I'm sure I can help you!" without really doing so. I think I am going to go the route of Enterolab, cause I don't want to spend any more time guessing and reaping the consequences of my mistake!
Mandy

[Stanz]

Welcome Robin,

I can pretty well guarantee you that every one of us has been exactly where you are now. It seems overwhelming, there is so much to learn. Almost exactly 2 years ago I had been sick for nearly 3 years and lost almost 50 lbs before I was dx/w/MC and found this place. I worked with my Naturopath to find a course of treatment w/o drugs. On advice of my Naturopath, I had already been GF for almost 4 months when I was dx/w/MC, even though I was negative for the celiac blood test. A great many, if not most of us here, have been genetically tested now and you can see our results.

I took probiotics and L-Glutamine, Vit B-6 & B-12 and megadose of Vit. D. I also took Immodium and Pepto (though the Pepto made me nuts in less than a week so I stopped it). In less than 3 weeks the D had pretty well stopped. I am now hyper sensitive to getting glutened, but am well. This is considered "incurable", but there are several here who have since had follow-up colonoscopies and no longer had MC and I suspect I would be in that camp as well.

Yeah, we are "strangers" over the Internet, but we're not selling anything, give him some time to do his own research. He wants you well, doesn't he? In all reality most of your "ailments" in your lifetime are connected to gluten if you are gluten sensitive. Mine were. Good luck and good reading.

Connie

[sarkin]

Robin,

I think your partner will come around when he realizes that it's not you believing a bunch of strangers, but trying it and feeling better. (Some folks then later re-test gluten, often with pretty unpleasant results - I have only done that by accident, but it sure convinced me not to do it on purpose!)

And of course, he's right - we don't know - like KNOWKNOWKNOW what you can/should eat. We have a pretty good idea that this might be a darn good place to start, though ;)

One thing that recently tripped up someone I know - gluten free does not mean "barely any." To really know whether it's working, the diet has to be absolutely free of wheat, barley, rye, probably oats, and foods that contain those things (or extracts like barley malt). It's not as hard as it sounds, but it's no walk in the park either. I want to stress that because I believe that the people who love you really want you to feel better, and they will never believe in this gluten nonsense *unless it works* - and it only works when you really lock it down.

I dropped gluten, dairy and soy all at once. (And later eggs, which I am bargaining with the universe to give me back some day. We shall see.) So I was in remission pretty soon. And long before I was in remission, I was feeling like a normal person - my life wasn't ruled by the bathroom, I had energy, etc. There are a lot of factors, including genetics, how long you've been sick, how old we are - who knows the full list. But I wish you great good luck.

BTW, I agree with Tex about your dad's migraines. Wait till you tell him you have celiac disease, and you got it from him Of course I don't know that's the case - but this is genetic, no doubt; and non-celiac gluten issues, like those so many here share, are not less severe or debilitating, just because more celebrities write books about celiac disease (oops, rant narrowly averted). I agree with those who believe that MC and the 'known' digestive symptoms of celiac are the tip of the gluten iceberg. I have people telling me they can eat anything, and in the same sentence they're telling me how they feel gassy when they eat this, and bloated for something else, and achy, and skin/rash/headache...

I'd also like to say, in this good company - I would rather be dead wrong about gluten, and hang out here in this forum and feel like a million bucks, than be "right" and hanging out in my doctor's office, or napping on the floor of my bathroom because I'm too exhausted to haul myself back to bed. (However, I am not wrong about gluten for myself, and I know this via the scientific method I wish my doctor would get a little refresher about.)

You're on the right track, Robin - please keep us posted and keep asking whatever you need to, in order to accelerate your path to health and healing.

Sara

[sarkin]

(Connie reminds me that we are all very different. Imodium never did much for me; Pepto was a huge help to me. Many of us have had trouble with Pepto, but I was lucky to respond without much in the way of side effects. The delightful Aussie member Gabes has a saying - there is no right or wrong way with MC... only *your* way. I hope you'll find it soon, and I know you'll get help finding it here.)

[Robin.booboo]

Arizona is filled to the rafters with homeopathic, naturopathic, somethingopathic (lol) all willing to charge big bucks to help you find out!

LOL - Hi Mandy! Yeah, don't I know it! I was hoping since this board has been around since 2005, there might be someone living in the area who knows a *credible* nutritionist that is aware of the connection. Congrats on getting your diagnosis, it sounds like you and I will be learning how to control it together. :)

The funny thing is, I've had plenty of "issues" over the years, but nothing that made me actually feel "sick" enough to pursue which is why I think I am only just now linking them all together now. I don't have extreme exhaustion or constant joint pains (just occasional) or even really feel "bad" other than the constant D which I finally had to admit was really a problem, especially when the pain came with it. On the other hand, I could definitely use more energy. Maybe I am just used to things as they are, and therefore don't recognize something as a problem until it gets more extreme.

P.S. Tex - I have migraines too. That's why I mentioned it as something my Dad believes in. It's probably the only "issue" I have that he recognizes. Most of my family gets migraines, but my GI said the MC is not genetic (I specifically asked if my kids could get it and he said 'No'). Is he wrong about that, too?

[maestraz]

Hi Robin,
I assure you that when I first found this group, my husband and I were very skeptical about whether I should be paying attention to a lot of what was discussed. I looked around on the site quite a bit before I started checking it on a regular basis. Over almost a year, I have found much that is worthy of consideration, and very little to ignore. I have, indeed, found relief by trying some of the advice given. I have been GF/DF/mostly SF since last spring and have made good progress, in addition to using Entocort. While I have not found adjusting to the dietary restrictions much fun, the relief I feel matters much more to me.

FWIW, my GI doc recently asked me for info about the site so she could recommend it to her MC patients.

I love the "script" that Martha gave you for a conversation with your dad. If he
hasn't experienced what you have, he doesn't know what it's like.

I hope that you find relief, and support, in the weeks to come.

[Robin.booboo]

Maybe say something like, "I've done a lot of research, and talked to a lot of people who have the same disease I have, and this is what they advise doing. Since microscopic colitis is an incurable disease, and the current medicines available only mask the symptoms, I've decided to give controlling my disease by diet a chance. It's kind of like people who have diabetes have to be careful of what they eat; people with microscopic colitis do better when they control their diets."

Hi Martha - I like the very nice way you put this! I will give it a try. I am really hoping to get my partner on board first, but he is resisting at the moment. I think it all comes back to what they can see with their own eyes. My partner was getting very concerned because I was constantly in the bathroom, to the point where even he had to recognize it was highly abnormal. Now that I have been on the imodium for a while and things are much calmer, it is no longer "in his face" so in his mind, its basically over. Of course, I know that although it is much better, I still have the D, just less often. Some days are worse and I have to take more of the imodium. That seems to go along with days where I ingest a larger quantity of food. For him, it is like his high tryglicerides - he knows he has them, he knows it puts him at risk, and he knows dietary adjustments help lower them, but it isn't something he thinks about or adheres to every day. Just most of the time.