Newbie here...this is kind of long, sorry!

[piemom]

Finally, I have found my people!

I just found your site today and I'm thrilled to have found it. I am recently dx'd with lc, and I feel very much abandoned by my GI...actually, my former GI (though they don't know it yet). After I explain, you'll see why.

I've been having explosive D for a long time (several years, maybe? Hard to keep track with a husband in the Navy, 3 kids and a year old puppy) along with a host of other symptoms. Anyway, I finally got sick of it all and started doing some research, went to the family dr., sort of got tested for celiac--they did an allergy panel instead of a celiac panel. All was negative. They sent me to a GI, who did a half of a celiac panel. It came back negative. I was immediately labled with IBS even though my symptoms didn't match. Because of my family history, I was sent for a colonoscopy, which came back with lc (50 lymphocytes/100--anyone know what that means?).

Then they did an endoscopy, which was negative. However, when I got a copy of the path report, it said that they only took one biopsy, so of course it was negative! When I asked for a copy of the report, they gave me 1/2 of my information and someone else's report--complete with her name, birthdate, ss# and diagnosis. I eventually got the rest of my report, though it said nothing of the horrendous hemmoroids that I have, nor anthing about the horrendous reaction I had afterwards (passed out, vomited, heart rate plummeted, bp plummeted, etc)...so...here I am, trying to figure out what to do.

In December I did a 4 week trial df and a 2 week trial of gf/df. I felt like a new person. I have done a lot of research and have found that lc is often related to gluten intolerance/celiac. I have a lot of symptoms of CD, but so far everything has come up negative for it. I am awaiting the results of my Enterolab tests (full panel, including the gene testing and the casein intolerance) and fully expect that to show what is not showing elsewhere. I fully believe that I have some level of gluten intolerance, but so far I have no tests to support that.

Here are my questions for those of you who are in the know:

1) Will diet alone help the lc, or do I have to take medication for it? (he put me on 8 Asacol/day. Haven't yet started it--I'd really like to manage it without taking medication if possible).

2) If I am able to manage this with diet, what should I eliminate? Dairy? Gluten? Both? I know for sure dairy bothers me, but is there anything else that aggrivates lc that people have found?

3) I have an appt. with another GI, but can't get in for several weeks. I don't have any idea if he'll want to redo the endoscopy--correctly-- or not, so I don't know if I should start a gluten free diet now or wait until after I have seen the new guy.

3) From reading your posts, it seems like many of you follow a gf diet--how careful are you--do you just not eat the obvious things, or do you have separate toasters, cooking utensils and live your life in fear of being cross contaminated?

Any help here would be greatly appreciated. Like I said, I'm feeling very much on my own here, and would love some guidance--I know you're not medical experts, but you certainly are experts on your own bodies and how this disease affects you. I'm sure many of you have had the frustrations I have experienced with the medical community and such...

Cheers,

Wendy

[kate_ce1995]

Hi Wendy,

Glad you found us, not happy you are dealing with this. You are not alone. Your story about docs not knowing what its all about is right on target, unfortunately. Many of us are gluten free, many are also intolerant of other things (dairy, soy, yeast, etc.). A lot of posters put their intolerances in a list that shows up to the left of their posts. Some are on medicine. Asacol is a common one. I haven't done the medication thing, so I can't comment. I am gluten sensitive, but I have found that by trial and error...didn't bother with the tests (although my blood test for celiac was negative as most of ours here are). Others have taken medicines for several months concurrently with implementing the diet, which allows them to get the symptoms under control while the healing starts. Diet can take a while and if the inflamation is too great, it can be a very slow frustrating road.

The others will be along with their specific situations and more advice. I'll tell you, what seemed to trigger my MC was using ibuprofen as a pain reliever of choice. NSAIDs are a big no-no for MCers. I also had menstrual problems so lived with a bottle of advil by my side. I now stick to Tylenol which isnt' nearly as effective, but it helps with headaches, and I had to have a hysterectomy (totally unrelated to MC) a little over ayear ago, so that problem is gone. Other medications, particularly proton-pump inhibitors (for GERD) can cause or trigger MC. So you might want to evaluate what medications you take, even if its not every day (I took advil every day for 3-4 days during my period and then maybe weekly for a headache or something.

Oh yeah, how did I figure out I was gluten sensitive. I get very bad joint and muscle pains when I eat gluten. I took me a long time to believe that I was feeling better because I was giving up my beloved bread and that it wasn't related to renovating an old house, marching in a long parade on a hot day, etc., etc. But after finally being "gluten free" since September, my feet don't hurt, my legs feel much better, my back feels better most of the time. I do still slip from time to time. Sometimes accidentally, last weekend in a situation where I knew better and tried to eat around some pie crust. But the aches, bloating, looser poop...it all confirms the gluten senstivity for me. I don't even really miss bread now. And in fact, feel better when I don't eat even gluten free bread.

You've found an incredible group of people here. They are very knowlegable and very caring. Hang out a while and you'll start to feel better and find a path to get your health back. It's a different road for all of us, and many of us have had to go through a lot of trial and error, but there are common threads for all of us.

Katy

[barbaranoela]

nice to meet U Wendy---and as everyone says---happy U found us---not happy issues but THIS BE THE PLACE for info--

I had a real schmuck of a GI---didnt know from nothing---and ME not going and looking for info on my own stuck with him for YEARS---finally in 91 I got me a new GI-- had to be treated aggressivlely---prednizone and Asacol(which did nothing) then switched to Colazal---and the combination of both worked---BTW---I am MCC-

And as my new GI said---Barbara, I cannot cure U but I can give U a better life!!! and that I have been enjoying ----

Certain things trigger me--STRESS--being #1--and I have to cook all my veggies baby soft-- --
Fortunately --I do not have a gluten issue--and I WAS Lactose intolerant but that seems to have mended???? which surprises everyone!!! I have learned megga stuff here----and anything U ask---there will be a reply--

Grab a and get ready for some real EXPERT advice---questions---replies----and other things to look for----

This home is rated A-1----

THERE IS HOPE~~~
love Barbara


Wendy----if U go back to the forums----U can catch up on histories---med. usage and lottsa stuff---

even a great receipe room!!!!

[Mars]

Hi Wendy! and

The road to finding a good GI doc seems to be a long and endless one for most of us. I actually can't remember reading that any of us have been completely happy with our GI doc!

Each of us has their own way of dealing with MC - we find out by reading, sharing and trial and error.

I would suggest that you lurk and read, read, read this site. You will find a wealth of knowledge here because we have all experienced the same thing as someone else! You are NOT alone!

There are answers to many of your questions in the "History and Mission" and the "Welcome Message and Information for Newbies" and Discussions on Diet and/or Medication" section accessible on the main screen of this site. Don't ever feel intimidated at asking ANY type of question. We have heard it all, I think!

Another thing - don't ever appologize for a post being long! Wow, some of them are novels! Teehee.

Again, Welcome to our family Wendy - I hope we are able to answer your questions and take part in your road to wellness!


Mars

[tex]

Hi Wendy,

And welcome to our online family. You've already received some excellent advice, so I'll just add to it. To answer your first question, I believe that "50 lymphocytes/100" would be interpreted to mean that, on the average, every 100 cell boundaries in the epithelium of your colonic mucosa, contain 50 lymphocytes. IOW, when the biopsy samples, which were taken from the surface of the lining of your colon, are examined under a microscope, the pathologist can count 50 lymphocytes, which have infiltrated the spaces between 100 typical cells, on the average. Lynphocytes are small white blood cells, (a type of leukocyte), that help to defend the body against disease. IOW, lymphocytes are responsible for immune responses. Basically, that count means that you have lymphocytic colitis. (If I remember correctly, the diagnostic threshold for LC is 20 lymphocytes/100).

Yes, based on your trial, it is very likely that you would be able to completely control your symptoms by diet alone, as many of us do. However, to completely eliminate all symptoms, it's almost always necessary to completely avoid all traces of gluten. Just because we are not celiacs, does not mean that we are not just as gluten sensitive as a typical celiac. Most of us who are gluten sensitive, are also intolerant of casein. After that, other intolerances are not as likely, though some of us have a rather long list of food items that we have to avoid.

Whether or not you want to wait to start the diet, depends on whether you want your new GI to be able to "officially" diagnose MC, while your symptoms are still very pronounced. It also depends on how sick you are, (and how well you tolerate being sick). IOW, the sooner you start on a treatment plan, the sooner you will get rid of your symptoms.

Most of us who choose diet as a treatment, don't necessarily use separate utensils, but we definitely make sure that everything is cleaned properly. If we eat something like peanut butter, for example, we keep our own jar, where no one else can get to it, because a knife that spreads peanut butter on a slice of bread, will carry gluten right into that jar, if it's jabbed back into the jar for another gob of peanut butter. One crumb is all it takes, usually, to set off a reaction. It's also a good idea to use a separate area of a counter top for preparing your own GF meals, to help reduce the chances of accidental contamination. With kids in the house, you're practically living in a minefield, especially if they do any food preparation where your meals are prepared. Unless we are overly careful, we learn by trial and error, if you know what I mean

Asacol is a pretty safe med, as meds go. It's your call, whether you want to use diet alone, meds, or a combination. There are various arrangements that we have found to be effective.

Again, welcome to the family. You are well on your way to fine tuning a treatment program that will meet your goals, if you have already sent in a sample to Enterolab. That usually saves a lot of trial and error, and wondering.

Wayne, aka Tex

[JJ]

Hi Wendy! Welcome!

JJ

[MaggieRedwings]

Hi Wendy and a Great Big to the Family!

You experience with the GI medical profession is one a lot of us have endured. Luckily I hit upon a good GI from the beginning and he was right-on honest with me and said in 17 years of practice I was his 5th patient with CC and he really knew little to nothing about it and we would learn together. He was open to me doing diet alone but for the first 2+ years I did a number of meds and they did me no good. The same with the Pepto regime.

Once diagnosed, I immediately went GF and have never looked back. I was a vegan for over 30 years so it seems that it has taken me much longer to heal than most. Probably over intake of grains for so long. I have made great progress in the last 5+ years from doing the bathroom boogie with a high of 40 times in a day to now about 10 to 12. I am not lucky enough to be in remission but I am sure it will be some day.

My best suggestion is read, read, read and research. The information on our board is extensive and please spend the time reading it. I am sure you will find solutions in it.

Some say that the more you "clean up " your diet the more you might find you are intolerant of and some of us have found this to be true. Dairy, soy and caesin seem to be high on the list after gluten.

Again welcome to the family and look forward to getting to know you better.

Maggie

[Alice]

Hi Wendy,

Welcome to your new family! You are right about that!! I've been a member of this family for 6 or 7 years. One of the first. You'll find my story in the members medical or personal profiles topic, I believe.

Love,
Alice

[piemom]

Well, all I can say is WOW!! Thank you, thank you, thank you for all of the wonderful responses! What a great group of people you all appear to be. Thanks for answering my questions. It seems pretty clear what I have to do. I am certainly going to mourn the loss of my beloved gluten. I have done a bit of investigating and it seems as though the learning curve is quite steep, but once you get the hang of it, it's not so bad. I'm a little wary of eating out--seems like it's quite a challenge, although being in the Denver area, we have a lot of the restaurants that you mention as having gluten free menus.

Do you have any tips for me to get started? I guess my own counter space and my own toaster and cutting board will get me started. I do all (90%?) of the cooking for my family, and I think it will take a little getting used to, but at least I can control a great deal of it. However, my kids, who are 13 (today!), 10 and 7, all have some issues of their own, so I think we'll do a family-wide gluten elimination trial for a month or so and see if things clear up for them. It will be very interesting!

On a side note...I LOVE the emoticons and other graphics you all use--by far the best that I've seen on any board. I've been lurking around the celiac.com site for several months (BTW, it was I found you from a link there yesterday). I also laughed out loud at the "Potty People" symbol and the quote about the dry farts. I guess I'm just so happy to have found a group of people who truly understand!!

I'm sure I'll have lots of questions in the coming weeks. I'll try not to bombard you, but here are a couple more...how common is MC? It sounds like it's fairly rare...Is it genetic? Could my kids' issues be related? Is it hurting me NOT to be on a medication right now? Should I even bother going to a new GI if I have already been diagnosed with LC? I guess I was thinking that since the first guy screwed up the endoscopy that I might need to have that repeated. But, if the treatment plan would be the same, perhaps it's not even necessary to repeat it...

Ok, enough for now! You are fabulous and I can't thank you enough for such a warm welcome!

Have a wonderful day--here in Denver it's supposed to be 60 glorious degrees! That sun will be working hard to melt even more of the huge piles of snow we still have!

Cheers,

Wendy

[Peggy]

a'board Wendy,

I have to step in here and be the one to give you the opposite opinion.

I take Asacol and, for the most part, have had great success with it. Diet...not for me, although I did give it a good try. I've had to take Entocort (a steriod) short-term when the going gets tough (hmmmm, maybe not the best expression to use here ) but am loathe to take it for any long periods.

We're all so different with this dang disease, and what works for one may not work for another. Rest assured, you'll have lots of support here whatever path you choose.

Peggy
44-year-old - dx'd with collagenous colitis January 2003

[JJ]

Hi again Wendy! I am one of the members who have not tried the GF diet. My GI had me try the Pepto Bismol treatment and that didn't work...Then tried Asacol and broke out in hives, and am now on Entocort which keeps me almost normal. I have had a lot of job related stress and that hasn't helped! I was doing very well and was down to one pill every 3 days, then had a major flare and had to go back to 3 pills/day...sigh. I'am on 2/day now.

I love Colorado and in fact, am applying for a teaching job in Vail. I am a private school art teacher and my job of 23 years is being cut back. I had family in Denver and still have family in Greeley. We have had family re-unions ttere and in Pagosa Springs....have been to Aspen a few times too. What a beautiful state!

I'm so glad you found us...it's a great family! Take care...JJ

[tex]

Morning Wendy,

We appreciate the kind words. We're very glad that you joined us. It's obvious that you're a self-starter, and a quick study, and I have no doubt that before long, you'll be teaching us new things about this disease.

The plan to do a family-wide GF trial is an excellent idea. Not only will it provide an opportunity to see if the rest of the family might benefit from the diet, but it will certainly make your cooking experience much, much easier, especially while you are learning new ways to plan menus. I think you will find that with a little thought, and research, your meals can be just as tasty as before, and much healthier, as a fringe benefit.

Yep, we love our emoticons, and we do try to have fun, whenever we can. When you have a disgusting disease like MC, sometimes you have to laugh, to keep from crying.

Officially, MC is claimed to affect less than ten people per hundred thousand, in the general population. However, if you were to do biopsies on the colons of a random sampling of the general population, I have a hunch that you would find a much, much higher prevalence, especially indications of past occurrences. In fact, some studies have shown that it is actually fairly common. For some reason, some people who have it show no symptoms, or have only short-term symptoms, and then go into spontaneous remission. Those of us who develop MC and can't seem to shake it, without a change of diet, or the use of meds, make up that group of less than ten per hundred thousand. Those are fairly old statistics. One of these days, when someone gets around to reevaluating the evidence, those numbers will no doubt be raised. GI docs are beginning to do a much better job of diagnosing MC, now that they are more prone to taking biopsy samples during colonoscopy exams.

The genes for gluten sensitivity, HLA-DQB1*201, (or HLA-DQ2, as it used to be called), and HLA-DB1*302, (or HLA-DQ8), are inherited, of course, which means that your kids might have the genes, but that doesn't guarantee that they will develop the disease. The disease will only develop if the genes are "triggered" by some external event in their environment.

Going without treatment for a while is not likely to cause any long-term problems, but of course it's not advisable to postpone treatment for years, since the longer you are reacting, the more damage your gut will sustain, and the longer it will take to heal. Also, long-term lack of treatment can increase the chances of developing other autoimmune issues.

Don't worry about asking too many questions - that's what we're here for, and that's how we all learn - from each other's experiences.

I hope the sunshine sticks around for a while. Here in Texas, we're getting too much of it - we could use some rain, (or snow, or something wet).

Tex

[kate_ce1995]

Hi Wendy,

You sound ready to take this bull by the horns. And if your family is willing to give it a go, that's great too. It will definately make your life easier (cooking). I struggle sometimes with the fact that some meals I have to make twice because they can eat regular bread and I have to use my gf bread. For example french toast nights, or soup and sandwiches (I even have to make my own soup). However, many of our meals are gf anyway. For example tonight is a pork roast in the crock pot with potatos and carrots drizzled in maple syrup (real). I also can't complain because my fiance does most of the cooking and has been very good about trying to learn what he needs to to help me stay gf.

Ask all the questions you have. Its good reminders to the rest of us as to what the issues are, and what we can be doing for our own health as well.

Katy

[harvest_table]

Hi Wendy,

Glad you found us! This is such a great group of folks with lot's of collective experience so read, read and ask away.

I was DX with CC about 3 years ago and was so thankful I found this board at that time. It's been an invaluable resource in my recovery. I elected to try a combination medication & diet route initially after my DX and for the most part have been living symptom free by diet alone for the last couple years.

As was previously mentioned, what works for some may not for others so keep that in mind......we seem to learn something new about MC almost daily, at least I do by reading this board and other research on the net.

Knowledge is power, and perserverance is not a long race:it is many short races one after another. I don't remember where I read that quote but it seems fitting for my personal MC recovery experience and others here.

Hang in there and welcome aboard!

Love,
Joanna

[Matthew]

Wendy

From one “Mile High” resident to another, I offer my welcome along with all the others. I have been doing great by diet alone. Stick around long enough and you are bound to get well.

Where in Denver do you live?

My home and shop is in what is commonly known as Platte Park. Very roughly, I25 to Evans for the North South boundaries and Downing to Broadway for the East West boundaries. Just West and a bit North of DU.

Never met anyone with MC in person. Perhaps we could arrange to meet sometime if you are interested.

My best,

Matthew