Hallelujah! I Finally Found The Proof :bouncing:

[tex]

Hi All,

As many of you know, for years, I have claimed that MC can present not only as chronic diarrhea, (which is the only possibility recognized by the official medical description of the disease), and as alternating diarrhea and constipation, (which several of us on this board have experienced, including myself), but I have also speculated that it can present with constipation as the only remarkable feature. Of course, I had never been able to verify that theory with any medical studies - until today, that is. I finally found proof that this third possibility does indeed exist. Break out the champagne.

Not only does this study verify that it is possible to have MC and never have a single episode of diarrhea, but it also includes some interesting observations relating to a possible cause of the disease, and speculation on why some of the most popular medical treatments support those claims.

If I'm reading this report correctly, it supports food intolerances, (allergies), as a primary cause of collagenous colitis.

But that's not all, folks, (he says excitedly), if I'm reading this correctly, it also implies mast cell involvement, (it specifically mentions histamine involvement), and the authors point out that the effective use of corticosteroids to control the disease, could be construed as evidence that the disease is indeed food allergy based, (because as we all know, the primary purpose of corticosteroid treatment is to quell the inflammation caused by mast cell reactions).

As has often been pointed out, no one knows why the corticosteroids suppress the symptoms of IBDs. That is to say, the mechanism by which corticosteroids control the symptoms of IBD has never been discovered. All we know, is that they work. Well, maybe one of the reasons why they work, for starters, is because they suppress the degranulation of cell cells.

This is a short article, but it contains a lot of eye-opening information, IMO:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1773752/

Though this article is about CC, I see no reason why it would not also apply just as well to LC, (and probably any other form of MC), and it may well have implications for the other IBDs as well. After all, corticosteroids have long been one of the most popular medical treatments for them.

That article was published in 2003 - so why haven't researchers rallied to pursue these "new" revelations?

I think we all know the answer to that question - most researchers are afraid to touch it, because most of this is contrary to the popular prevailing medical consensus, and you don't rock the boat, if you want your articles published, and you're hoping for professional advancement, (rather than setting yourself up for professional ridicule).

Tex

[Joefnh]

Tex yeah the news here is certainly the issue of food allergies and IgE reactions and their relation to MC. The alternating constipation and D issue are interesting as well, yet I cannot even speculate as to the cause.

Good find Tex

--Joe

[tex]

I forgot to include the following reference in my post above, and since Joe has already responded to it, rather than edit my post, I'll just add it here. This patient never had an episode of D, and yet she had collagenous colitis:

http://www.ncbi.nlm.nih.gov/pubmed/8447512

Her doctors never discovered the disease, until they removed her colon, and then biopsied it later.

Tex

[mbeezie]

I can feel your excitement!

Mast cells and histamine are defintiely at work - I have no doubt. I don't believe true IgE allergy though. I believe we bypass IgE and go straight to mast cell release triggered by lectins (known mast cell degranulators). That's where the waters get murky - nobody understands this very well. I clearly get anaphylactic symptoms but my IgE level is actually low (gets taken up by the mast cell) and I never test postive for things I react to.

Mary Beth

[tex]

I believe we bypass IgE and go straight to mast cell release triggered by lectins (known mast cell degranulators). That's where the waters get murky - nobody understands this very well.

That was the part that bothered me too. And you're obviously right about no one understanding this very well - I think the researchers were confused, also. Note that they referred to the sensitivities as "food allergies", rather than "food intolerances". Of course, that could be a translational discrepancy, but it probably was not - I'm guessing that they probably were indeed thinking food allergies. They even noted the inconsistencies with their approach:

Many of these symptoms reflect the concept of “delayed” reactions. This notion presumes that certain clinical symptoms reflect allergies to food which develop over a period of hours or days (or longer) and are caused by immunological mechanisms other than immediate type hypersensitivity.

That describes food intolerances, obviously, but since they didn't really know what they were doing, I'll bet they didn't even investigate IgA or IgG antibodies. That probably never even occurred to them. If they had, surely they would have mentioned it.

All of Dr. Fines tests look for IgA antibodies, of course. I have no idea how the details of the tests actually work, but I do know that they are very, very specific. I doubt that they recognize any actions of mast cells, but I don't know that for a fact, obviously.

It's even possible that the mast cell "leakage" might occur by some undiscovered process, since so little is known about their role in these reactions.

Tex

[grannyh]

How awful to have colon removed and then find out what disease you have.. can't reverse that operation easily and the doctor probably made a bundle on it! Wonder why they didn't do biopsies before removing the colon.... probably not as profitable...
grannyh

[Gloria]

It's so annoying that the article was published seven years ago, but the medical professionals haven't picked up on it. I think it's just as you've written before, Tex. MDs are taught to treat with a prescription.

I still think that it could be a nightmare trying to help a patient navigate through the maze of food intolerances, especially someone like me. A patient would become extremely frustrated with the doctor if they didn't get better after following a GF diet. For that reason, I don't think we'll ever see the majority of GIs recommend diet as a solution for MC. I've never directed my frustration at my doctor because I figure he's clueless. Celiacs are relatively easy because they only have one food type to eliminate. They, too are on their own, however, if they have more intolerances.

In another vein, I wonder if Barbara's constipation is due to MC and not her back surgery?

Gloria

[mbeezie]

I don't think IgA is a direct reflection of mast cell activity either, but there's a simultaneous process at work. From what I have read IgA activates the alternative complement system. I have also read that when when C3a and C5a in the alternative complement pathway are activated, mast cells are triggered to degranulate. This stuff is way over my head, but I am trying to piece together the link of how Dr. Fine's test helped me figure out my mast cell triggers.

Mary Beth

[tex]

Gloria,

I suspect that you're quite right about the impracticality of doctors trying to administrate a dietary treatment plan for their MC patients. There's no way that they would be able to do a decent job of it in the time they have available. IOW, I don't believe that they could micromanage anyone's program. About the best they could do, would be to refer the patient to written material, or a web site, where it was all spelled out in detail, with the warning that everyone is different, so every treatment plan has to be custom tailored. Many patients probably wouldn't have the desire, patience, nor discipline to be able to do that on their own.

Also as an extension of your theory, it would probably be very difficult to prove this treatment approach in a random, double-blind trial, due to the complexity of the permutations of food intolerances that any cohort of test subjects would present. It would be a mind-boggling logistics problem, and I seriously doubt that many researchers would be up to the task.

In another vein, I wonder if Barbara's constipation is due to MC and not her back surgery?

I have to admit that thought has crossed my mind a time or two, but I never could figure out a good way to bring it up. Since you brought it up, though, I have to agree that it is certainly a strong possibility, IMO. I have never been convinced that the cementing process used in back surgery was the cause of that problem.

Tex

[Rosie]

Tex, that really was an interesting find. The article was just a "Letter to the Editor", not a real paper, so I decided to see if the main author, Z Barta, had published any more on this topic. I found a 2005 publication was obviously an extension of that letter. It has a lot of very interesting information in it. The entire paper is available, not just the abstract!! I have copied just a couple of bits from it, but there is a lot more that can be gleaned. I just quickly read it and want to spend more time going over it more carefully, but wanted to post this right away so others could read it. Click on the "pdf" version at the top of the page.......it's much easier to read, especially the figures.

http://www.wjgnet.com/1007-9327/11/1351.asp

We propose that MC is a Janus-faced disease as 23 of them had chronic constipation and 30 had the well-known diarrhea.

The increased number of mast cells besides the myofibroblasts is remarkable in the “fibrotic” layer, which is characteristic in CC. The presence of a different distribution of mast cells and macrophages in CC and inflammatory bowel disease suggests that mucosal mast cells play a role in the development of Th2 response CC rather than Th1.

Our data support the hypothesis that patients with MC may have laboratory and/or clinical evidence of allergic diseases and/or food allergy and these mean a possible connection between MC and food allergy. IgE type antibodies against hazelnut, tomato, soy protein, milk protein, egg protein, and gliadin were found.

It's really powerful to be able to cite a scientific paper supporting what we already know from our experiences. Unfortunately, there don't appear to be any further papers on this topic, although I'll take another look. Obviously this paper has made no impact on the traditional view of MC. Perhaps it's because the authors are from a little-regarded Hungarian university.

Rosie

[tex]

Rosie,

Thanks. I haven't had a chance to look any further, so I appreciate the information.

Yep, those guys in Hungary probably rate right up there with Dr. Fine, on the medical "Good Old Boys Club" list of favorite authors.

Tex

[grannyh]

Seems to me that I read some place early on that CC was more common in people of European ancestry so would more study of the disease be done there? Great find!
grannyh

[Gabes-Apg]

Tex
the article and subsequent discussion is very valuable. When i became unwell last week but D wasnt the main symptom i was confused as to if it could be a MC flare or not.

Further to this, when i had my acupuncture done on Monday, we were laughing as the points that we were using for the treatment were like my 'old favourites' that we had been using for 5 years or more before the mix mash of MC type symptoms appeared 3 years ago
I think in the past i used to get bad symptoms when i had too many treats of Gluten/Yeast/Dairy as 80% of the time majority of the time i was GF/YF/LF
since the couple of flares and now that i am pretty well GF/YF/DF/SF following well cooked plain meals type diet
Like stress can cause D (and smelly D at that) i think stress or being run down is my major trigger for the pain, and tiredness.

Similar to how i made the diet/food adjustments, i need to make some adjustments to work and workhours.

[Stanz]

How awful to have colon removed and then find out what disease you have.. can't reverse that operation easily and the doctor probably made a bundle on it! Wonder why they didn't do biopsies before removing the colon.... probably not as profitable...
grannyh

Well, I just couldn't resist quoting grannyh here, Tex.

Wow, this is just so...just frustrating to see that our docs quit learning so long ago. I'm looking back at my last visit with my PCP, where I brought in printed out copies of my medical records and asked that it be added to my MR's along with the info that I was now GF and was treating my MC w/o drugs. These records showed all the problems I'd exhibited in the last 16 years, all the tests I was given that came to NO dx with anything, all the drugs I was prescribed and refused to take to suppress my immune system, up until my dx/w/MC last year. My favorite page is the one from my Rheumatologist which said: Patient refuses to take either sulfasalyzine or methotrexate, has been advised that w/o intervention, patient will be incapacitated within 5 years. This was 10 years ago.

I gave her copies to send to this Rheumatologist and the Dermatologist - both of whom are the HEAD of their depts. at OHSU. Don't imagine either of them got it. Don't imagine anyone cares to learn and that is sad. My PCP's DH is GS - she said he "tries to avoid gluten". Go figure.

[tex]

My PCP's DH is GS - she said he "tries to avoid gluten". Go figure.

That reminds me of the old saying about mechanics always driving cars that will barely run, and the doctor's kids always being the sickest in the neighborhood. LOL.

Tex