Rare Disease Day - Question

[Camryn'sMommy]

Ok, so I just saw on TV that today is rare disease day. I looked on some websites and determined that Collagenous Colitis is considered a rare disease, but Lymphocytic Colitis wasn't mentioned. I just thought it was odd and wondered if anyone had any thoughts on it. On a side note, I take Camryn back to CHOP on Tuesday for her 9 month follow-up appointment. She is doing well, so it should be a good appointment.

Thanks,
Laura

[Stanz]

From my research CC and LC are just different ages of the same thing.

Glad to hear Camryn is doing well.

[JLH]

http://www.rarediseaseday.org/

[barbaranoela]

Laura--how nice to see U but the best is to read that Camryn is doing better--

I always thought that CC and MC were indeed considered *rare* or as we often used the reference *the orphan ailments* due to the fact that they werent investigated thoroughly--

Trusting that I am using the right *words* to describe them--
I know that my first GI had no clue of MC--and the story went on!!!

So if my description is not on course then I am sure someone will pop in and correct what I have described!!!

Take care--
Barbara

[Polly]

Happy to hear the good news about Camryn!

Polly

[tex]

Laura,

LC wasn't described until about 4 or 5 years after CC was originally described, (CC was initially described in 1976). Since they're considered to be rare, anyway, a lot of people have probably never bothered to upgrade their knowledge about them, after reading the first descriptions of CC. To them, it's all CC, (even though there are now at least 6 or 7 known variations of the disease). Of course, MC is actually somewhat common, (it's just incredibly under-diagnosed), but most of the medical community, and especially the GI specialists, haven't discovered that fact, yet.

Thanks for the update. Good for Camryn. I hope that you've been able to resolve your GI issues, as well.

Tex

[Gayle]

According to a Mayo Clinic Study titled "epidemiology of microscopic colitis, a population base study in Olmsted County, MN" by Dr. Darrell Pardi et.al and published 2006 ....

This study extracted information on all MC patients that were listed in their common database between 1/1/85 and 12/31/01. It showed that "the incidence of Microscopic Colitis has increased significantly over time".

(By way of explaining this defined patient population) -- Olmsted County in MN is rather unique in that everyone in the county receives all their medical care either at the Mayo Clinic, or at the Olmsted County Multi-disciplinary Clinic -- and the 2 clinics share a common database.

In another study (also Pardi et.al) which focused on the "Symptomatic Overlap between MC and IBS", they found that 10% of their patient population, which had received a diagnosis of IBS, have MC. A diagnosis of IBS in their system is made following the established Rome criteria. A diagnosis of MC is always made by biopsy and histological identification.

Of these MC patients, 64% have the LC type of MC while the remaining 36% have the CC type of MC.

So you see, MC is not a rare condition --- a big part of the problem seems to be that a high number of Physicians are not aware of this condition, and just consider it "a diarrheal condition which is not fatal".

As you see -- according to the numbers above, LC is more prevalent than CC. But that difference isn't significant as -- at least at the current time -- the management being attempted is the same. So it is basically an academic difference, which will likely merit further study -- you can bet on it!

Hope this gives a better (at least statistical) slant on our shared dilemma here.


CHAO,
Gayle

[ant]

I think a lot of "professionals" still consider the various diseases that are diagnoised MC to be IBS - which they are NOT. Also a lot of undiagnosed MC is dismissed as IBS. That is why it is still considered rare.

LAZY, LAZY, LAZY thinking by many (but not all) of the "professionals".

Love, Ant [/u]

[Gayle]

Hi Ant,

Well for sure, part of the problem IS a lack of general medical education about MC. However, another factor is that -- just as it has been demonstrated in that study that 10% of individuals who have been diagnosed as having IBS, do in fact have MC … it might also be argued that 100% of people with MC have IBS, and so may occasionally have issues that are basically in the IBS rhelm.

i.e.) sometimes, some GI symptoms may, some may not, be directly related to their MC.

Because they overlap, there is NO WAY to exactly determine the difference when experiencing some occasional daily changes. Hence, when something changes, we all tend to get a little (?) nervous. --- as in “what the is going on now”??

Many here on this chat board consider IBS to be something of a default diagnosis. Basically, that is because the term “IBS” (irritable bowel syndrome) is used to describe a group of functional complaints with no explainable organic cause. MC, on the other hand, is diagnosed because of defined organic findings.

There has been a recent post here on this board from an individual regarding a constant state of nausea. She also reports having been diagnosed with LC, so she does have a diagnosed IBD. I am really wondering where they are going to try to go with her. Will this be explained away as IBS, or are they going to try to go somewhere in the area of the “brain-gut” connection, or what??? I can’t think there is much of anything worse than constant and unremitting nausea --- would be much worse than pain, which is at least better understood.
Uf-dah!



Gayle

[ant]

Dear Gayle

I take your point that someone with MC could also have IBS (i.e some other bowel symptoms unrelated to the Lymhocytic and/or Collagenoues and/or Mastocytic Enterocolitis). But as an example, unless I am mistaken, a Dx of IBS suggest eat plenty of fiber, while a Dx of MC suggests the opposite. So if someone is categorized with IBS, because they have not had a colonoscopy but in fact does have MC, they may be heading for wrong treatments.

This all get very complicated and I just wish more was known,

All best, Ant

[Camryn'sMommy]

I took Camryn for her appointment at CHOP today. She hadn't seen her Dr. in 9 months. She said she is doing phenomenal in regards to her growth in height and weight. She is 81st percentile for weight and 86th percentile for height! Not bad for a girl that didn't grow for over 6 months when she was 2.

Camryn was the first child diagnosed at CHOP with LC, but her Dr. said there have been two more cases since then. I'm told that LC is very rare in children and I believe it. There have only been a handful of people on this site under the age of 18. They are considering making a support group at CHOP for kids with MC (even though it would only have 3 members)! Camryn has become a member of the local Celiac kids group (even though she isn't a celiac) and had fun playing with other kids that are gf.

She had to get blood work to check her vitamin B12 and D levels since her diet is so restricted. She was soooo good at the appointment, but she was really scared by the blood work. She doesn't have to go back for a year unless she has any problems. On a side note, I'm told the others who have MC and are children have not had any luck on the gf diet. I just wonder how long they tried it and if it was 100% effort.

~Laura

[JLH]

GREAT NEWS, Laura, So happy to hear it.

I hope that there will be a MC group so you help the other children's parents get on the right track.

Also, right in time to copy your post to take to my GI next week. Thanks.

[Gayle]

Hi Ant,

as an example, unless I am mistaken, a Dx of IBS suggest eat plenty of fiber, while a Dx of MC suggests the opposite.

I do not think you are entirely mistaken in this assumption. A Diet recommendation for IBS does typically suggest additional fiber.

I am not so sure however, that there is “a diet recommendation” for MC. (Here I am referring to any medically recommended diet.)

As you know however, from reading this board, there is a strong belief (although not generally medically supported) that some food intolerances, (most notably gluten) are involved with this condition. AND -- There are a number of people here that have experienced a great deal of help by eliminating gluten from their diets. And for certain -- while MC is in D mode, one wouldn’t use, and try to avoid, fiber.

AND Having said all of that, some of us (maybe very few) who have been Dx’d with MC – do get to a point (is it a remission??) when C returns and that becomes something of a problem. That is then dealt with by again – adding fiber. And round and round it goes? Personally, I have yet to have additional fiber push me back to D. But I can only speak from my experience. And, I am still taking Entocort, 3mg - every other day.

It is easy to appreciate that if one has not experienced this kind of “reversal of fortunes”, that can be hard to believe.

if someone is categorized with IBS, because they have not had a colonoscopy but in fact does have MC, they may be heading for wrong treatments.

Yes, that’s for sure, and is why pursuing these issues toward getting to accurate diagnosis is certainly desirable!!

This all get very complicated and I just wish more was known,

Don’t we all!! None of the IBD’s are well understood. There is a lot of research going on. It just may be that when they find a good lead on the origins of even one of these diseases, it may lead to answers to all of them. Let’s hope.


Best,
Gayle

[tex]

Laura,

Thank you for the update, and the great report on Camryn's progress. She seems to be making up for lost growing time.

I'm sorry to hear of the lack of success by the others who tried the diet. I, too, wonder how long they tried it, and how well they were able to implement the strict requirements of the diet. Doing the diet right, is not something that is quickly and easily learned. As you are well aware, it takes dedicated effort, and unrelenting attention to detail.

Thanks,
Tex