Newbie, just diagnosed with LC yesterday

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Wndrwmn
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Newbie, just diagnosed with LC yesterday

Post by Wndrwmn »

Finally, I am not a hypochondriac. There is something wrong with me, or at least there is a reason for what I've been going through. I have had the typical symptoms for over 10 years and I am only 34. Are there other younger people on this board? I don't mean to sound negative, but from what I've read LC is generally an older person disease. Is there anything that this can lead to by having it younger than the normal person?

Also, besides playing with my diet and the Entrolab tests are there other ways to get tested for food sensitivities? I honestly was surprised that I didn't have celiac and am wondering if I am sensitive to wheat, which might be causing this all.

Thanks!

PS. I am glad I found this forum. Makes me feel like I am not alone in this "rare" condition. :grin:
harma
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Post by harma »

hello Welcome, no you are not greasy, you are not a hypochondriac, you only have MC. I think a lot of members will recognize your story, for yeas having the feeling something is really wrong, but never getting a diagnoses (or even worse it sometimes take years to get the proper medical attention). I have been suffering for almost 10 years before my MC really got active in a way that doctors could not ignore it anymore and label it as IBS. My list of odd things became longer and longer with the years. Sleeping problems, bowel problems, food I couldn't stand anymore etc etc etc.

You are not the only young person on the board, there are a view under 30 (recently somebody asked that question too here, it is one of the topic's on the main message board). I was 41 when the disease was diagnosed. To me MC looks like a disease of all ages. Our youngest member is 3 years old. As far as I know, it doesn't make any difference at what age you get the disease and there aren't any special conditions to get it at a certain age.

What I have learned from this board is that the Enterolab is the only reliable food intolerance test when it comes to MC. Or, let's put in in another way, where this board has the most experience with. Enterolab is the lab of Dr Fine, one of the few researchers who actually did research into the MC field (because he has MC himself). He is the one who made the connection gluten - MC and developed a gluten stool test, that is far more sensitive than the celiac blood test.

Besides gluten a lot here are intolerant to milk and about half reacts on soy too.

Just take a look at all the other posts and take your time to get familiar with all this MC information. Feel free to ask any question you want and again welcome here.

harma
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tex
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Post by tex »

Hi Wndrwmn,

Doctors confuse themselves, and they don't understand statistics. The reason why older people have traditionally been diagnosed with MC much more frequently than younger people, is because the only way the disease can be diagnosed, is by having a pathologist examine biopsy sample slides under a microscope, to look for markers of the disease - the markers are not visible to the unaided eye. A colonoscopy is required, for collecting those biopsy samples, and historically, relatively few younger people have been subjected to a colonoscopy exam, and when they were, very rarely, were biopsy samples collected. Therefore, very few younger people were diagnosed with the disease, because you can't find this disease, unless you specifically look for it. It's not that younger people do not have the disease, the problem is that GI doctors have traditionally considered MC to be a rare disease, so they didn't look for it in younger people. They are finally learning to look for the disease in younger people, and so naturally, they are finding it there. You have to ignore almost all of the "propaganda" published by the major medical sites, about MC. That information is, (for the most part), incomplete, incorrect, and very misleading. IOW, the medical profession does not understand this disease very well, and it knows precious little about properly treating it.

As Harma pointed out, the only accurate and reliable tests for detecting food intolerances, are those offered by Enterolab, unless you have fully-developed celiac disease. If you have fully-developed celiac disease, then the classic celiac blood tests can usually be used. For all other cases, the Enterolab tests are the only practical option. The Enterolab tests will detect gluten sensitivity several years before celiac disease becomes fully developed, which means that they will detect gluten sensitivity several years sooner than the blood tests are capable of doing.

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

Tex (Wayne)
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Stanz »

Hi Wndrwmn and welcome to this Forum.

As overwhelming as it may seem to you right now, you are at least fortunate to have been diagnosed this early in life and can avoid many of the types of damage that are irreversible.

I laughed at your first sentence. I felt exactly the same way when I was dx at 60. I reality I'd had all the symptoms since childhood. My oldest daughter self dx gluten intolerance over a year ago, 10 months before I was dx.

You have much to learn and investigate and there is so much valuable information here. I did a great deal of research here and other places before I decided to try L-Glutamine and Pro-Biotics and it stopped my symptoms in less than 3 wks and about the same time that I got my results back from Enterolab. This after over 2 1/2 years of diarrhea and 40 lbs. of weight loss. I had already been gluten free for a little over 4 mos. Gluten seems to be my only food sensitivity so I feel very lucky.

Connie
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
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Post by rbks321 »

Hi Wndrwmn-

I'm 37 yrs old and was diagnosed last year. You're not alone. I know it's frustrating and overwhelming, but this group has been great!

Keep reading and keep asking questions.

Good luck to you-
Rebecca
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Post by Gloria »

:welcome: to the board!

You've already been given good advice...keep reading the threads on this board and you will learn a lot. You'll find that we've been through similar frustrations.

I would also suggest that you begin keeping a food/elimination diary. You will begin to see a pattern between what you are eating (or not eating) and your symptoms. That will help you determine which foods are causing problems. You can also draw on the experience of the members of the board. Feel free to ask any questions - no matter how embarrassing. We are all "bowl watchers." Every morning brings a test we hope to pass. :wink:

Gloria
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ant
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Post by ant »

:welcome2: Wndrwmn

I know what you mean when people who do not know say "hypochondriac", especially if a doctor says "it is not serious; just live with it".

Well, we all do live with it and, thanks to the advice and support on this board, work out ways to get our life back.

Best wishes for your journey to remission, Ant
Kristtene
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Newly diagnosed also with LC

Post by Kristtene »

Sudden onset watery diarrhea began April 27. Two weeks later I was insisting to my general doctor to order me a colonoscopy. Symptoms up to that point were unexplained diarrhea, and when the stools were formed, they didn't look right, had lots of food in them, were greasy looking, and were layered, as though made up of different kinds of material. They were an unfamiliar light brown that I'd never seen before; sometimes with greenish tinge. Really spooked me out. Had subtle cramps that were related to the formation of the diarrhea. Had a few nocturnal episodes.

I just discovered this site and will have a field day going through all the forum categories. What really gets me with this is that my 12 servings a day of fruit have now become the equivalent of what -- maybe four or five? A lot gets passed. Forgot to mention: I'm 47.
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Post by Gloria »

:welcome: Kristtene!

Your stool description sounds very familiar I'm sure to many of us on the board. You have come to the right place. Keep reading - there is a lot of information to absorb.

Most of us are managing this disease through a) diet, b) medication or c) a combination of both. I recommend that you begin to maintain a food/elimination diary so that you can see a cause/effect relationship between what you are eating and your symptoms. Many here have seen an immediate improvement just by eliminating gluten. The great thing about dietary management is that it poses little risk and only costs the amount you spend on groceries.

Feel free to ask any questions. We are here to help you on your road to remission.

Gloria
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Kristtene
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Post by Kristtene »

Gloria, thanks.

I tested negative for celiac, and believe it or not, I had not been eating any gluten whatsoever, with the exception of an occasional (and I mean occasional) sandwhich made with wheat bread. But since diagnosis have eliminated the bread (not because of the diagnosis, but since it for other reasons). I have not eaten soy for at least five years and will never touch the stuff anyways.

Before the diagnosis I eliminated the fruit and replaced with kefir and wild/brown rice to see what would happen, and over days the symptoms dissipated quite a bit. Then I returned to my "fruitarian" diet (the bottom of my food pyramid is fruit). A 90 percent remission continued. Then two days ago, bam, the diarrhea was back, and yesterday and today, complete with undigested food (lots of orange pulp in today's diarrhea; there was so much passed orange that I could even smell the orange from the toilet bowl).

My theory is that the kefir-rice diet had some lag time in resolving the symptoms, and then, when I returned to my mostly whole-food/70 percent raw vegan diet, there was lag time in bringing back the symptoms.

My other theory is that three days ago I began eating grapes for the first time since I saw the primary doctor. It's possible the grapes triggered it. I didn't have any today, however. Then again, I've also noticed that often, if not usually, any diarrhea reflects yesterday's eating (as evidenced by what I'm seeing in the toilet bowl and in stools).

All I know is that a mostly raw vegan diet is very important to me. I've been doing this for quite a while, so I know it can't be the cause of the LC.
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Post by ant »

Dear Kristtene

:welcome: :wavey:

So sorry you are not well and hope people here can help you get on the way to remission. We have all been through so many nasty things MC throws at us, but as you are doing keep reading and asking for advice.

All best, Ant
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tex
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Post by tex »

Kristtene,

If you had mostly eliminated gluten from your diet for at least a few weeks before you had the blood tests for celiac disease, then it would have been impossible for you to get a positive response on that test. The classic celiac blood tests are not very sensitive, and they will not detect low levels of antibodies. FWIW, your description of the appearance of your stool, (especially the colors), matches a celiac profile, exactly, (though it's not impossible for that to occur with LC, also). Whatever the case, that description matches the result of gluten-sensitivity.

As far as your relapse on a fruit diet is concerned, LC is an inflammatory bowel disease, and when our intestines are inflamed, they are extremely sensitive to irritation. Because of that, until our gut heals, we have to avoid not only all our food intolerances, (such as gluten, casein, soy, etc.), but we also have to minimize fiber, because fiber is very abrasive to the gut, (that's why it stimulates "good" bowel movements, in "normal" people), and that "scrubbing" action will tend to maintain and prolong inflammation. While we're healing, the less fiber we eat, the faster we tend to recover, on the average. We seem to tolerate certain well-cooked vegetables better than we can tolerate fruit, in general, (with the exception of bananas).

Most of us simply avoid most fruit until our gut heals, but if you can't live without it, be sure that you at least remove the peel, since most of the fiber in fruit is in the peel. And, you may be able to tolerate some types of fruit, if you cook it well, (overcook it). Most of us cannot tolerate any raw fruit or vegetables, until our gut heals, (except for bananas - most of us are able to tolerate bananas, and we can usually tolerate them raw, as well.

Grapes are bad news for many of us. I've been in remission for over 6 years now, but grapes still completely clean me out, within a few hours after eating them. Also, fruits high in sorbitol are a problem for many of us, if we have accumulated enough small intestinal damage that our enzyme production has been reduced.

The good news is, once the gut heals, we are able to eat most of those fruits and vegetables again, without any problems.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Kristtene
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Post by Kristtene »

Tex,

Thanks for the info.

My diet has been very low in gluten for a very long time. The only source of grains on a consistent basis has been wheat bread, and even then, only 4 slices per week (two sandwiches per weak). I have totally avoided classic grain foods for a long time: cereal, pretzels, crackers. Though I will admit, several months back, I was eating French toast 1-2x per week while I was staying with a sick relative. In fact, my entire diet went to pot while I was living there for three months; donuts, pie, cake, milk, frozen dinners. However, no symptoms of MC back then.

After I moved back home, returned to my healthy diet, and three months later the diarrhea hit. The healthy diet was void of gluten, save for the 4 slices/week of wheat bread. One serving a day of chocolate (cake, pie, brownie, mousse) with glass of milk (this is not unusual at all; it's a lifelong indulgence).

But I realize that MC can just hit someone out of the blue for no apparent reason. My MC symptoms have existed in the presence of a completely gluten-free diet, and of course, the biopsy was positive for MC (LC).

It's past noon now and no diarrhea yet, despite five glasses of fresh squeezed orange juice, so I'm beginning to really think that the grapes triggered a relapse.
collagastritis84
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Under 30

Post by collagastritis84 »

I'm only 26 heres a post from the under 30 question

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=11760
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Post by JoAnn »

:welcome: Kristene and Wndrwmn,
You've received some great advice and are in the best place in the world to deal with mc. In my own experience, I had to completely change my ideas about "healthy" foods for me. What is considered healthy for the general population, can wreak havoc on my system. My main fruits now consist of bananas, strawberries, and blueberries. I rarely eat salad, but eat well cooked broccoli, carrots, and spinach. Everyone has to find their food intolerances through trial and error, but Enterolab testing is great to verify the big ones like gluten, dairy, soy, eggs, and yeast. Good luck to you both, JoAnn
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