Introducing myself and a question (or two) :)

[abbievon]

Hello, and please feel free to move this if I did not post in the proper place.

I am a 31 year old female who was diagnosed with LC last summer by my GI doc, confirmed by a specialist this past week. I suffer mostly from diarrhea and poor BM quality, which has been occurring since I was about 24 years old in 2003. I was completely normal and then one day, not so much. Some days are worse than others, and some BMs are worse than others, but I can generally maintain a relatively normal life. I work, take the train, travel frequently, don't have much pain, but I just always have to know where the restroom is, and will go just about anywhere.

I went gluten free last summer after a second endoscopy came back negative for celiac (one in 2003 and one in 2009), because I was convinced the gluten was bothering me both digestively and, more debilitatingly for me, with chronic sinus infections. Since that day I have felt a million times better systemically - no sinus pain, no sinus infections (a few head colds that came and went with nary an issue), I am not nearly as tired at work and after work, not nearly as cranky, not as many headaches, and hardly have to use my inhaler (I am an asthmatic).

But digestively I am still not so great, which leads me to think that I probably don't have celiac and that I am just gluten intolerant/gluten sensitive. I do my best to avoid but I do cheat here and there (very rarely) and I don't keep a GF house/kitchen, and I eat things that may have been made in the same facility as wheat, etc. I have noticed that when I eat at restaurants I am much better off than I used to be, where I'd have to use the restroom before leaving. That rarely happens now that I am GF for all intents and purposes.

I was on Entocort from July-November of last year which improved my frequency (down to 3ish times a day) and reduced urgency, and also helped with BM quality (though it did not get back to "normal"). I went off it in November and got pregnant right away (on purpose), but had a miscarriage in late January at about 10 weeks. My miscarriage put me into the worst flare I had ever had, a combination I think of terrible stress, a surgical procedure, NSAIDS (which I will no longer take since I think I underestimated how bad they made me feel), changing my prenatal vitamins (I've since gone back to my old ones), and more stress.

Through acupuncture and three weeks of chewable Pepto, I got back down to 3ish times a day, and the quality is improving. I feel a lot better, truthfully, and I am going back to see my GI on June 1. In the meantime he wants me on nothing since he says that bulky or semi-firm stool 3ish times a day is a step in the right direction as opposed to the watery explosions with visible undigested food 6 hours later that I was having 5-7 times a day after every meal (and in between). He advised me to take Imodium as needed but I am trying my best to take nothing. Presently I only take my prenatal vitamins as I am hoping to get pregnant again after May.

My question is this: when any of you are not in a flare, are your BMs ever "normal" looking again? I feel as though I will never see another normal BM, as it has been about 8 years without having one. They definitely get firmer at times, but I range between small and firm, semi firm and normally shaped, and what I describe as "bulky" (almost like a pile, but no fluid in the toilet bowl) when I am not in bad shape or reacting to something that didn't sit well with me food-wise (that's when it gets bad, watery, explosive). I am just wondering what a good goal point is -- especially if I am not on any meds at the time.

Thank you all so much for your help and for reading this. I've been lurking a long time, pretty much since the initial diagnosis last summer, and you all seem very kind and knowledgeable.

Thanks again.

[harma]

Hello abbievon, I am impressed by your first message here, you do already know a lot about MC (more that I did when I was diagnosed, I got all my information from here). Of course sorry to hear you have MC too and also very sorry to hear about your miscarriage, that is always a very sad thing. Almost everybody in this group is gluten free. Most of us here believe there is direct relation between gluten and MC (even though most GI doc's don't think so). I read you are "more or less" gluten free. It is with MC the same as with celiac, to achieve remission with diet it is very important to be 100% gluten free, avoid every trace of gluten. Than also the most of us here react to diary products (the casein in milk), so a lot here are also dairy free and about half of us is soy free. And even a smaller group have more food intolerances (like me). If you want to know more about your intolerances you can get your stool tested at www.enterolab.com. Enterolab is a research lab of Dr Kenneth Fine, he is the only researcher in the world (as far as I know) that did research in the relationship between gluten and mc. He also developed a gluten sensitivity test that is much more sensitive than the normal blood tests (this is the stool test). Most people who are gluten sensitive but don't have celiac show a negative blood test and now intestinal damage. However the test of dr fine is able of showing a gluten sensitivity in cases you are sensitive to gluten but don't have celiac (yet).

Than it was very wise of you to quit the NAISD, since this medication can be a MC trigger (along with some other medication).

Your questions about your bowel movements (bm) and how your stools look like. I am only diagnosed last year and have not between into relapses (yet), I am still using entocort and follow my diet. What I can tell you about my BM, they are solid but not normal. From the moment I took enterocot I don't have D anymore. Since than my stools are solid small pieces. But I am still in recovery. With the diet it can take half year to a year to achieve remission (and I am not that far yet)

Well I hope you will be able to find answers to all your questions here and also will achieve full remission with your MC.

harma

[abbievon]

Thank you so much, Harma, for your response -- I do a lot of reading, some good, some bad, but I know that I have to be in control of so much of this myself, so I try to be as well-versed as possible. I should say that my non-GF lapses have been minimal in the past year -- 2 times at the suggestion of my doc to see how I did with gluten while on Entocort, the night I found out I miscarried (I owed myself a steak and cheese sub!), and just this past Monday while at a banquet with no other options. I find I do much worse with D if I eat on an empty stomach, and so it was the lesser of two evils for me. But I understand what you are saying completely and I do my best to stay as GF as possible, though I am sure there have been some unknown ingesting too. I don't eat only foods that are labeled GF but I think I have done a good job of knowing what is safe and what isn't (having an iPhone at the grocery store REALLY helps!).

I have been toying with having a stool test done with Enterolabs and I think I am just going to bite the bullet. Have many people here done it?

I've gone DF a few times with no real improvement though I have done my best to limit myself (I think I react poorly to very fatty, heavy foods and meals anyway). I stick with dairy in general because I am on the small side, just shy of being underweight, and I am always seeking to maintain my calorie count, even though it is hard. I know the miscarriage could have been any number of things but I am hoping that the colitis didn't have anything to do with it. I was in a post-Entocort flare when I got pg which I know is not ideal and so I am trying to get myself down to some kind of normalcy before we try again.

Thank you again.

[teagirl]

Hi Abbievon, welcome to the world of looking into the toilet bowl!

I'm one of the luckier ones who is relatively stable with the occasional flare (hidden gluten; stress are the culprits). I have LC.

BMs can return to whatever is normal for you. To paraphrase Forrest Gump, MC BMs are like a box of chocolates, you never know what you're going to get. I seem to alternate between:
- the pile
- long thin stool, sometimes soft, sometimes firmer
- small solid pieces
- a good sized quite firm stool I regard as normal
and all sorts of colours, from dark brown to light brown.

From dx last summer, it was about 4-5 months before I had a normal BM. Since then it has been pretty good. Once I went DF and SF to my gf life, I went to one BM a day.

Keep the faith - you can get back your life.

[JLH]

Abbievon.

[Gabes-Apg]

G'Day and warm greetings from Australia

i am trying to remember what a normal BM should be......
after 15 years of digestion issues (IBS) and then MC diagnosis in Dec '09 i dont think there is a normal!

A good day for me is 1 - 2 motions (the first one before i go to work)
as i am still sorting out what foods are good and what ones cause me grief the consistency changes a bit.

I am finding with the foods that there are items that i react to straight away (Gluten, Yeast, Lactose)
and then there are foods that i can tolerate small amounts of and if I have too much then i tend to react within about 6 hours.

as you may notice from the posts everyone is different! there is no right way or wrong way, what works for one person is not the same as what works for someone else.....

my belief is that the pregnancy will happen when your body is settled keep up the vitamins and find what foods and cooking methods suit you best. at the moment all my food has to be overcooked stew like consistency.

[Rome]

Hello friend,

Wow, you are the first one that has described their suffering almost exactly like mine. I too can function, but like you, have to know where the bathroom is. I was diagnosed about 5 yrs ago, but had D for a year before I finally went to a doc to get checked out. I have what I consider good days, but I also have my share of bad ones. I was on some medications for a few days at the beginning, but they all made me feel worse. I finally went back to a new GI this week, and she is going to do another colonoscopy and an endoscopy looking for UC, crohns, and celiac sprue. I told her of my plans to go GF, but she told me to hold off until after the exams. I too long for the days of a "normal" BM. My husband laughs at me when I tell him I am jealous that even the dog can have a normal BM but I can't! I did order the Enterolab test kit and sent it back. I am waiting for my results. I should probably get them in a couple of weeks, around the same time as my lab results from my GI. Can't wait to compare them. I didn't tell her I ordered the tests!

Good luck, and Welcome!

Til next time!

Romanita

[tex]

Hi Abbie,

Welcome to our internet family. I'm sorry to hear that you have LC, but it's good to see you posting, and I'm glad to see that you're making good progress. You've already received some very good responses.

Many of us have had the tests at Enterolab. Here is a partial list of the results for some of us:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10089

Quite a few members have found that the diet helps many other autoimmune issues, for example some of us have found that asthma is much less of a problem, after the diet allows the gut to heal. And yes, if you eliminate all your food intolerances, (and all drug intolerances), you are likely to be able to return to a fully normal BM pattern, again, (whatever was normal for you, before the disease was triggered).

Be aware that hormones affect MC. Some women find that even if they are in a flare initially, pregnancy will put them in remission, which often lasts until about the time that lactation ceases. However, some women find that pregnancy triggers an MC flare, or makes an existing one worse. Apparently the body is very sensitive to hormonal balances, and those balances vary by the individual - we are all different in our symptoms, and in our response to treatments. We do have several members who have been through pregnancies after their MC diagnoses, and as mentioned above, their MC responses varied.

I have no idea what prenatal vitamins you will be taking, but be aware that if you have D issues at the time, malabsorption is a major problem with MC, much like celiac disease, so many vitamins, especially the B vitamins, will be poorly absorbed. Be sure to use sublingual B-12, (these are lozenges designed to dissolve under the tongue, so that they go directly into the bloodstream), in order to avoid anemia, and be very, very sure to take plenty of vitamin D-3. Not only will sufficient amounts of vitamin D3 insure that you will have a healthy baby, (it can prevent autism, for example), but it will prevent you from having colds, and other viruses, and it will help your intestines to heal faster, and help to keep your bones stronger, etc. Many/most of us take 4,000 or 5,000 IU or so of D3, during the fall, winter, and spring, and those who live at more northern latitudes take more, and take it on a year round basis. After taking it a while, it's a good idea to ask your doctor to test your 25(OH)D level, in your blood, to make sure that you are taking enough to keep your level in the upper half of the recommended range, (the new recommended range, not the old, obsolete one).

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

Tex (Wayne)

[ant]

Dear Abbie,

from Hong Kong and wishing you all the best on your journey to remission. Ant

[abbievon]

thank you all so, so much for your warm welcome. it feels good to be among people who understand, though unfortunately i am discovering that among many, if not most, of my female friends, we are all suffering with some kind of digestive woes or another.

i know that my initial change to D was triggered in a period of high stress (entered the working world 2 weeks pre-9/11, moved out of house, broke up with boyfriend, got back together with boyfriend, changed jobs, began commuting, moved in with boyfriend, etc.). an IBS-type reaction is fairly common with me (i.e. the phone rings and i know it is bad, and i get that rumbling), but I also have LC as well.

Romanita, I have to say that though I've just "met" you I feel a bit of a kinship thanks to your dog comment. I can't believe how many times I look wistfully at my two dogs and their normal BMs! It's sad! Sometimes my husband will say, "Oh the dog's poop is a bit soft today," and I'll say, "YOU THINK THAT'S SOFT!" Jokingly of course. But he's about as regular as they come, god bless him.

I know I will have more questions, and thank you again for welcoming me!

[Gabes-Apg]

Abbie

i found that my digestion troubles were worse when hormone levels would change. (ovulation & menstration) i think that is why women notice digestion issues more so than men as we have triggers that occur more frequently