MC Can Affect Many Parts of The GI Tract

[tex]

Hi All,

I, (and many others here), have maintained all along, that, similar to Crohn's disease, MC can affect much more of the digestive system than just the colon. Here's a link that Luce sent me, that documents the case of a man who not only showed thickened collagen bands in the subepithelial layer of the walls of his colon, but also in his small intestine, and in his stomach. Additionally, biopsies showed villous blunting in his small intestine, similar to damage normally caused by celiac sprue.

http://www.gipath.com/archive5.html

The report also mentions a suggested link between MC, and celiac and refractory sprue, which adds suport to another issue that I have brought up before.

Tex

[annie oakley]

That was very interesting. It goes to show how little the doctors knew and are learning all the time. Scarey tho huh? Love Oma

[celia]

Tex,

That IS very interesting. I've heard of lymphocytic gastritis but don't know how it might related with lymphocytic colitis. This adds another layer so to speak!

Many thanks for sharing the link. Celia

[CAMary]

HMMM - I guess they'd have to rename it if it affects more than the colon?

Microscopic Gastro-Intestinal Tractitis - MGIT????

[celia]

Tex,

I'm curious if it's typical for people with MC to also get an upper endoscopy or upper GI barium study? Do you know? Have people in the forum commonly gotten these tests done?

Celia

[grannyh]

Interesting..might explain why the diet did not work for me and the entocort does. The discouraging part is that there is no REAL cure for some of us....sigh...
grannyh

[Mars]

Celia,

I have had both tests done. It was found that I have GERD and a hiatal hernia. The whole system acts up at the same time now and again athough meds have helped.

Mars

[artteacher]

I've had both. Go ahead ask about more tests . . I bet I can say yes to 99%.

Marsha

[tex]

Grannyh,

Entocort only starts to work when it gets to the ileum. Theoretically, at least, it should not affect the upper two-thirds of the small intestine, and the stomach. We all know, of course, that theory does not always match reality, and it may be possible that tranqilizing the colon, somehow resolves issues farther up the line, possibly due to changes in some critical aspect of body chemistry.

Wayne

[grannyh]

I really don't care why Entocort EC works, at this point. Just glad something works. Now have to cross fingers that gastro doc will not make me reduce the dosage to one or remove me from it... I like being out of diapers:)
grannyh

[celia]

Oh gosh Marsha, that sounds like a LOT of tests! Celia

[celia]

Mars, I guess that's the danger of another test...finding out more has gone awry, but probably better to know. Sounds like you have it under control though! More power to you. Celia

[Lucy]

grannyh,

The disease entity, refractory sprue, that doesn't respond to the gf diet that is referred to in this article is a form of celiac disease which is, by definition, a disease of the small bowel, so it doesn't apply to your diagnosis of M.C., at least as this article refers to it. It would be highly unlikely that you would've had classic celiac disease of any type appear all of a sudden as your M.C. appeared to do. People often suffer a long, long time with multiple symptoms before they're diagnosed with it. Unless I'm unfamiliar with your general medical history, I don't recall your having many medical problems other than the cholesterol type stuff. Did you have any of the types of things that were mentioned in the medical histories of the other boards?

I've been curious to ask you something about that time-line you did that enabled you to figure out it was the former cholesterol-lowering med (also used to control diarrhea because it's constipating).
Did you get off of the constipating one near the time of that first prep?

Also, you had the Promethius HLA genetic test, right? I've already forgotten if you were positive or negative for the DQ2 or 8?
Those only refer to the classic forms of celiac disease, as you know, but I'm trying to refresh my memory.

It's my thinking from some of the people I know who are developing M.C. after years of being (apparently) gluten free for years, that they are having other delayed food reactions which are related to the late appearance of M.C., but I've not seen one of the people that I talked to about testing for dairy, etc., to ask if she found out anything yet.

I think that with refractory sprue, it's already too late, as there's been so much damage, once it's diagnosed to be treatable, which would be different from the above paragraph's situation.

I've always wanted to ask someone who's in the know on this stuff whether someone with refractory sprue is still gluten sensitive even though their small bowel is too far gone to get better off the stuff.
I should think that the immune complexes would still be formed and cause damage to still other organs if continued, but a person would know they were really sick in that case, and hopefully, note that they felt better off of it in general.

Another thought I had was that wouldn't the M.C. go away in time if the prep was the cause of the irritation?

Grannyh, was it you who mentioned something about taking fish oil as an anti-inflammatory? Perhaps if it was just the irritation of the prep, it would help? It's so highly recommended these days for the omega 3's, and it's got natural vits, etc.
Might be that your new doc would be a good one to ask about this in relation to your cardiovascular concerns.

Wish we knew what triggers the cascade of autoimmune diseases in this family of genetic diseases. I'm so impatient for a major breakthrough!

Yours, Luce

[grannyh]

The Prometheus test showed I did not have Celiac disease.

When I was so sick last year I am pretty sure it was the codeine for the pain of broken rib that gave me the "remission". Everyone said I would be blocked up like concrete but it was not the case... Norman visited instead:)

I have not had a lot of other health problems. There isn't much of a family history to go by since most of my relatives are dead and no one really talked about their health! The old family doctor is long gone as well.
grannyh

[tex]

Luce,

Regarding your comment about patients with refractive sprue, "I should think that the immune complexes would still be formed and cause damage to still other organs if continued, but a person would know they were really sick in that case, and hopefully, note that they felt better off of it in general. ":

My understanding is that while the damage continues to acrue, no relief of symptoms is noted by the removal of gluten from the diet; therefore, they would not feel better on a GF diet.

Here is a refresher course on refractory sprue:

http://www.celiac.com/st_prod.html?p_prodid=877

You raised a very interesting question, about whether or not patients with refractory sprue were still gluten sensitive. On the surface, it seems intuitive that they would be, but the fact of the matter is that refractory sprue has a unique marker--abnormal intraepithelial lymphocytes. Consider this quote, (from the above-cited reference):

Abnormal Intraepithelial Lymphocytes (Immune Cells)
The intraepithelial lymphocytes found in celiac disease have a normal-looking appearance under the microscope and they behave like normal celiac immune cells (they respond to gluten when they shouldn’t). These lymphocytes have the ability to communicate with other cells using different types of messages on their cell surfaces. When diagnosing celiac disease, pathologists look for an increased number of IEL’s as an indication of celiac disease.

In refractory sprue, however, there is a different kind of IEL that is found in great numbers. This immune cell does not look normal, and it ignores the presence or absence of gluten. This type of cell does not have the ability to communicate normally with other cells as it would be expected to do. However, it does have the ability to communicate with cancer cells, contributing to their development. It is not clear what causes this type of IEL to develop or mutate, contributing to refractory sprue.

It is possible to have refractory sprue without having these abnormal lymphocytes; in this case, treatment with steroids often results in response to the gluten free diet and a reversal of the condition.

Note that it says that the abnormal IELs ignore the presence or absence of gluten. I find that very interesting. I would assume that in reality, damage from gluten continues to accumulate, if, (and only if), gluten remains in the diet, but seperate additional damage acrues, due to the presence of the abnormal IELs. Since the ulcerative jejunitis, and inflammation caused by the abnormal IELs probably overshadows the normal IEL reactions, a patient would not be likely to perceive any difference in their symptoms, due to the presence or absence of gluten in their diet.

Here is a description of a test to distinguish between celiac sprue, and refractory sprue:

http://tinyurl.com/c6ycf

Here is a report of a case where a desperately ill patient with refractory sprue, was successfully treated with cyclosporine. (Cyclosporine, as you probably recall, is an immune system suppressant, often used to prevent rejection of transplanted organs):

http://www.annals.org/cgi/content/full/119/10/1014

It's interesting that the patient quickly recovered completely, and remained symptom free, after the cyclosporine treatment was discontinued. She did, of course, have to remain on a GF diet, for life, in order to remain symptom free.

Wayne

P S Regarding MC triggered by a cleanout prep: if discontinuing the use of the prep would stop the MC, then people whose MC was triggered by NSAIDs would only have to avoid NSAIDs, in order to stay free of symptoms. We know that's not true, as Katy can certainly attest. Once the horses are all out of the corral, it's too late to shut the gate.