Question About Intestinal Damage

[Gloria]

Tex,

Your comment intrigues me:

gluten, (and related prolamins), definitely damages the intestines, but to my knowledge, most of the other food intolerances do not. My logic behind that opinion is the fact that no research has documented intestinal damage from any food intolerances, other than the damage caused by gluten, (wheat), hordein, (barley), secalin, (rye), and possibly avenin, (oats).

I have been GF and oat-free for about 18 months now, with the exception of getting small amounts in RiceDream milk and maybe a few crumbs from cross-contamination that we all encounter occasionally.

According to your comment, that means that my intestines should be nearly healed. Yet, I don't feel that I can safely eat many of the foods that are considered irritants, such as lettuce, orange juice, popcorn, high-fiber foods, etc. I'm beginning to wonder if I'll ever be able to eat them.

Is there a difference between intestinal damage and intestinal inflammation? If so, must one continue to avoid irritants while the intestines are inflamed? Technically, my intestines shouldn't be inflamed because I'm on a maintenance dosage of Entocort, right?

Perhaps some others who are maintaining on Entocort can help answer this question.

Gloria

[tex]

Gloria,

For me to say that you've asked a very good question, would probably be the understatement of the decade. I wish I knew the answer.

Seriously, anything that I say here will have to be considered as sheer speculation, since my original statement, (that you quoted), was based on the lack of evidence to the contrary, (rather than on facts).

Is there a difference between intestinal damage and intestinal inflammation? If so, must one continue to avoid irritants while the intestines are inflamed? Technically, my intestines shouldn't be inflamed because I'm on a maintenance dosage of Entocort, right?

Yes, there is definitely a difference. Damage refers to physical changes inflicted upon the otherwise normal architecture of the epithelia of the intestines, such as flattening of the villi in the small intestine, and any other visible, (under a microscope), changes to the surface, (or subsurface), features of the of the epithelia, (such as the thickening of collagen bands). Inflammation, (in the case of MC), refers to the infiltration of lymphocytes between the cells of the epithelia , (by definition).

Remember that the rest of this is just my opinion, but IMO, the inflammation is clearly the reason why the gut is sensitized, and the cause of most of the symptoms. The damage obviously causes malabsorption problems, and indirectly, it also causes poor digestion, (in the sense that it contributes to the loss of enzyme production in the brush border regions), but I doubt that it causes D, per se. There are a lot of asymptomatic celiacs out there who verify that point, I believe. Their small intestines show serious damage, but without any inflammation, they do not present with D.

On the other hand, most of us show minimal intestinal damage, (possibly none, in some cases), and yet D is prevalent, because of the inflammation that is a prerequisite for a diagnosis of MC, (lymphocytic infiltration). In the case of CC, lymphocytic infiltration is not necessarily a prerequisite, but it is always present, to some degree, (significantly more than normal levels, at any rate).

Therefore, since inflammation is the primary cause of D, (in the case of MC), all irritating foods, (whether they are allergens or not), must be avoided as long as the intestines are inflamed. I have no idea which comes first, the reconstruction of damage, or the cessation of inflammation, but I have a hunch they are probably linked for most of us, (though probably not for all of us), since as long as inflammation persists, the potential for additional damage clearly exists. Remember that only a percentage of the intestinal surfaces are actually inflamed, (in patches), in most cases, but normal BMs can only resume after all of those areas of inflammation are resolved.

Regardless of the Entocort, and the amount of time following the diet, you wouldn't have D, unless you still have some inflammation, unless something other than MC is causing the D, of course, (such as parasites or a bacterial, or even a viral, infection). Also, since Entocort EC is designed to activate in the ilium and the proximal colon, it's theoretically possible, I suppose, that it might not be adequately controlling all the inflammation in the distal colon, for a severe case, such as yours. Evidence of that might be demonstrated by the fact that a higher dose might completely control the inflammation. IOW, I suspect that budesonide is not necessarily "systemic" within the colon itself, which would imply that minimal doses would be absorbed before reaching the distal end of the colon, thus leaving the distal end untreated.

Anyway, that's my interpretation, FWIW.

Tex

[Courtney]

So, Tex, it sounds like we know that inflammation can be stopped or controlled or reversed or whatever term fits best. But what about damage? In most celiacs, the villi repair as long as you follow a GF diet (or they're supposed to). Is there an equivalent "fix" in MC, or is the damage permanent? And if it is permanent, what does that mean for our intestinal and overall health?

Love,

Courtney

[tex]

Hi Courtney,

Again, this is mostly uncharted waters, and what I say here is primarily just my opinion, so take it for what it's worth, based on what it's costing you. I believe that the rate of, and/or extent of healing of the damage caused by gluten-sensitive enteropathy is one thing that has not been carefully researched. Everyone understands that faithful adherence to a GF diet will bring "complete" recovery, (symptomatically speaking), but no one talks about whether the damage at a microscopic level is repaired 100%. It can be difficult to access, since most of us probably do not have "picture-perfect" intestinal features to begin with. Our individual intestinal epithelial structure may in fact, be as unique as our fingerprints, for that matter. Most of us suspect, I believe, that the longer we are symptomatic without treatment, the more likely we are to accrue some degree of permanent damage, and I see no reason to disagree with that opinion, though I don't recall seeing any research reports to verify that. Also, it's generally understood that the older we are, the less likely we are to heal completely, but again, the verification of that, and the extent to which it occurs, (if it actually exists), is an unknown, though it's almost certainly generally true.

Of course, it may be a moot question, since the body is usually so amazingly resilient. We can get by with only one kidney, one lung, half our colon, or even none of it, (of course if we have to do without most or all of it, we will certainly not be likely to have normal BMs). We can also get by with only a fraction of our stomach, small intestine, etc., as demonstrated by all the gastric bypass surgery being done these days.

That said, according to Dr. Fine, the pathology of microscopic colitis is virtually identical to celiac sprue. When the pathology occurs in the small intestine, it's called celiac disease, and when it occurs in the colon, it's called microscopic colitis. That sheds some light on why symptoms are so similar, and why the distinction between the two diseases can easily become blurred. In fact, IMO, they both should be classified as subtypes of the same disease, because they are both a result of gluten-sensitive enteropathy, (therefore the preferred treatment is the same), the symptoms are the same, and the pathology is the same, (the only distinction lies in the location where the pathological markers are present). Some would probably object to this classification, and point out the fact that MC can be caused by other influences, (such as meds, cessation of a smoking habit, bacterial infections, etc.), but those are merely triggers to activate the genes that are already in place, waiting to be triggered. Likewise, celiac disease is usually triggered by some "event", otherwise it couldn't show up later in life, as it so often does.

So yes, the damage from MC should heal at least as well as the damage from celiac disease heals, since it's so similar, on a pathological level. It usually takes longer for remission of symptoms to occur, with MC, because both the small intestine and the large intestine are often involved, (IOW, MC is incorrectly named), thus the extent of damage can be much greater. As least, that's the way I see it.

Love,
Tex

[RUBYREDDOG]

Tex,

Gloria brought up a point I have been wondering about. She asked.

"my intestines shouldn't be inflamed because I'm on a maintenance dosage of Entocort, right?"

Does Entocort or any other medication actually aid in the reduction or elimination of the inflammation, or is the main benefit the elimination of the symptoms of MC ( gas, bloating, "D" etc)? I'm under the assumption that the intestines heal themselves, given time, when our intolerances are eliminated. What are your thoughts?

Hotrod

[tex]

Hi Hotrod,

Entocort actually fights inflammation, which of course, leads to the eventual elimination of symptoms, (hopefully). It does not address the cause of the inflammation, but it does reduce inflammation. Sometimes it is sufficient to bring remission of symptoms by itself, and sometimes it's just not up to the job, without additional measures to address the source of the inflammation, (such as diet). Presumably, that's because some of us have more active immune systems, that generate inflammation much more aggressively than others, and inflammation is generated faster than the budesonide can handle it, (though this last comment is just a WAEG on my part.

In cases where Entocort is capable of bringing remission without diet changes, inflammation is surely still being generated, but the budesonide is able to control it at least as fast as it is being generated. If it were not true that inflammation is still being generated, then a maintenance dose of Entocort would not be necessary, and it could be safely discontinued.

Tex

[JoAnn]

Thanks Gloria for the great question and Thanks Tex for the great answers. I am still new enough that I don't even know the right questions to ask about mc, so this has been very enlightening and has helped me understand this disease better. JoAnn

[tex]

You're most welcome, JoAnn,

The more we learn about this disease, the more we realize we don't know, but as long as we keep comparing notes with each other, we learn a little more about it every day. If the GI docs would join a discussion board, and compare notes regularly, just imagine how much their patients would benefit.

Tex

[Gloria]

Thanks, Tex for your very thorough answers.

The reason I brought this up was because an early member of the board (I can't remember who she was), recently posted that she'd been able to reduce her maintenance Entocort dosage from two pills to one pill per day. I don't believe that she made any additional dietary changes.

That tells me that her intestines healed some without any other intervention on her part other than taking Entocort and remaining GF. They're not completely healed because she's still taking one pill, but she did make some improvement using medication alone.

Do you or does anyone else recall the posting?

Gloria

[tex]

Gloria,

As always, you're most welcome. I'm sorry, but I don't remember who wrote the post you mentioned. We do have several members, though, who have done that, and we have several who have maintained on as little as 3 mg every other day. We also have some members who have done the same with Asacol. We have members who have tapered down and completely stopped taking Entocort, and who now maintain on diet alone, and we even have at least a couple of members who take no meds, follow no diet, and remain in remission. Every case is a little different, which can make figuring out the best path to take, a real challenge.

Tex

[RUBYREDDOG]

Thanks Tex,

I have been trying to achieve remission through diet alone since June, 08 and had good results for the first few months. The last few months I have seen little improvement in my symptoms. I am currently taking Boswellia but that is looking like a dead end, at least in my case.

I really hate taking medications but I am running short on options. Entocort may be the best solution for me. Thanks again for your help and support.

Hotrod

[Courtney]

Thanks again, Tex, for your very thorough answers. Your idea that MC is basically celiac in the colon makes a lot of sense to me.

Love,

Courtney