Low Fructose Diet

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tex
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Post by tex »

Hi Faith,

A paradox lies in the fact that intraepithelial lymphacyte infiltration is normally a part of the histology of celiac sprue, but it is not considered to be an official part of normal celiac histopathological changes.

Here are the official current diagnostic criteria for pathological diagnosis of celiac disease, (IOW, this is what pathologists have to follow, when diagnosing celiac sprue):
Diagnosis: antitransglutaminase or antigliadin or antiendomysial antibodies plus clinical malabsorption plus typical histologic findings plus improvement in symptoms and histology after gluten withdrawal
http://www.pathologyoutlines.com/smallb ... eliacsprue

The presence of an increase in intraepithelial lymphocytes, is not a requirement, when determining a diagnosis, though it is often noted in pathology reports, based on biopsy sample analysis. IOW, they know that the lymphocytes are there, but they are not allowed to consider that information when rendering a "verdict".

This is from an ooooold article, (1972), but obviously mainstream medicine has totally ignored the findings:
Increased lymphocytic infiltration of the epithelium of the small intestine seems a surer sign of gluten sensitivity than the macroscopic appearance of the mucosa, and a diagnosis of gluten-sensitive enteropathy may no longer be excluded when the mucosa appears normal.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1785442/

IOW, "they", (pathologists) choose to ignore the better measure of gluten sensitivity, (increased lymphocyte presence), in order to use an inferior, (but somewhat easier to see and understand) marker, namely villus atrophy. Why? :headscratch: Beats me - probably they're just reluctant to change their old, obsolete methods. :shrug:

I find myself wondering who comprises the decision-making group, (or groups), that determines and sets the standards by which pathologists diagnose diseases. Are they doctors? Or could they be representatives of the same insurance companies and drug manufacturers that determine everything about the medical care that we receive these days? :lol: Just kidding, of course.

The bottom line is, the markers are there, (increases in intraepithelial lymphocytes), but they choose to ignore them, and focus on a different type of inflammation, instead - namely, villus attrophy. They ambiguously refer to the necessary findings as, "typical histologic findings", but the intraepithelial lymphocytic infiltration is ignored, in the absence of villus atrophy, which makes it irrelevant, in their eyes.

In your report, (that you mentioned above), the finding of no "inflammatory changes of sprue", would not rule out increased lymphocytic infiltration, because that is not officially considered to be a necessary condition for the diagnosis of CS. To them, the presence of increased lymphocytes is irrelevant, because they don't officially "know" what it means. Did you see the actual pathologist's report, or just the GI doc's interpretation of it? The original pathologist's endoscopy report probably mentions an elevated lymphocyte count.
Faith wrote:If the intraepithelial lymphocytes occur in celiac disease too,how do they differentiate it from LC in small bowel, aside from atropy of the villi?
I assume that my discussion above, covers that question. The bottom line is, they differentiate it by ignoring it, in the case of celiac sprue. Officially, LC of the small bowel, does not exist. (It cannot exist, because the name "colitis" applies only to the colon - colitis means inflammation of the colon. Period.). Scientists often get hung up on things such as taxonomy, nomenclature, and other syntax errors. It's kind of funny when most scientists do it, but when doctors play that game, people suffer, and sometimes they die, just because of a lack of flexibility in medical "rules".

Incidentally, note that most doctors ignore the "plus improvement in symptoms and histology after gluten withdrawal" part of the rules. They might as well remove that stipulation, because they don't bother to change a diagnosis, just because a patient does not respond to treatment. With celiac disease, the diagnosis is final, regardless of the outcome, and, of course, it should be final. IOW, that "requirement" in the diagnostic regimen, is totally redundant.

I hope I haven't just confused the issue.

Tex
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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 faithberry »

Tex,

That's very interesting and very insane!

I saw the pathologists report for the upper endoscopy. It does not indicate an elevated lymphocyte count. It only says, "...do not see atrophy or inflammatory changes of sprue. Do not see changes of whipple's disease." Since it's not listed, chances are there was no elevated lymphocyte count or at least not in the fragments that were taken from the duodenum. Everything looked perfectly normal and I have the photos to show how normal it looks!

I may have another endoscopy and colonoscopy next year, if all this is still going on. I don't know that it will necessarily help in some ways, but there's a part of me that likes to know what's going on. That is if they can do the proper staining for mast cells and look for lymphocytes and such.

I've read that GI symptoms can occur due to extra mast cells in the GI tract, but they can also simply be the results of the chemical mediators released by mast cells in other places in the body. So, presumably one could have a perfect looking GI tract both visually and microscopically and still have problems. Although in my case I had increase of lymphocytes in the colon.

Thanks for the info. It was edifying.
Faith

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TooManyHats
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Post by TooManyHats »

The link for the low FODMAP diet isn't working. Does anyone know of another link that is?
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Post by Gloria »

I found this link which might be helpful. http://fodmaps.yolasite.com/resources/L ... 20diet.doc

Mary Beth might have a better link.

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Post by MBombardier »

Tex, I read the whole story of Vilhjalmur Stefansson from http://www.biblelife.org in December. I found it fascinating, and it calmed my fears about not eating fruits and vegetables. Apparently the website has been taken down now.
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Post by tex »

Marliss,

Maybe the server was just offline when you tried it, (or they removed their link). This is the link I used, and it worked when I posted this response:

http://www.biblelife.org/stefansson2.htm

Tex
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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 MBombardier »

Aha. The server must have been offline. Or my computer knew I was playing hooky, and blocked me, lol! :wink:
Marliss Bombardier

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Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
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Post by Kari »

It's the middle of the night in Colorado, and as I'm pondering what's going on with my MC, I just discovered this thread - very, very timely for me. Thanks for starting it Gloria. I was doing very well after I dropped the MRT reactive foods from my diet, and even saw a handful of normans. Then things started deteriorating again - looser and looser BM's, culminating in watery D starting over two weeks ago.

Finally I figured out a HUGE offender - Coconut Milk, which I had consumed almost daily, along with coconut juice and coconut flakes (great for piling on the calories). I thought it was the Guar Gum in the Coconut Milk, but now I'm thinking it might be the coconut itself as well. This has been the biggest setback since I went gluten free last July. As I'm reading this thread, I know that APPLE is likely another big offender, and I will eliminate them immediately - have been consuming apples, applesauce and apple-cider vinegar pretty regularly, as apple was low reactive on my MRT results!!!

Thanks again for starting this topic Gloria, and good luck to you and the others here in figuring out your intolerances.

Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
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Post by ant »

Dear Kari,

First so sorry you have regressed back to a flare. I know the feeling.....thinking we are almost out of the woods and..... :hammerhead:...... we find ourselves, apparently, back in the thick of it......

Coconut milk?? I had pure coconut juice (it was pure - no guar gum - cos it came straight from the coconut) and in a few hours had bloating - a sure sign, I think, of fermentation. I have often suspected too much sugar and am getting more cautious as time goes by.

Best wishes, ant
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Post by mbeezie »

Hi Kari,

How frustrating :mad: Sorry to hear about your setback, especially since you were doing so well. It's a good idea to back to an earlier phase of MRT, when things were under control, so you can settle things down again. That way you can start to test every food again. Otherwise you might be guessing at what caused the problem. It's important to know for sure so you don't unnecessarily eliminate some foods.

:bigbighug:

Mary Beth
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Post by tex »

Kari,

Sorry for the relapse of symptoms, but I'm certainly glad that you were able to figure out the problem so quickly. Often, as you have found, the problem is something that we eat regularly, because we trust it, and those are the most difficult problems to track down, because we tend to automatically check them off as OK, without even devoting any thought to them.

Good work, and I hope that you'll have smooth sailing from here on. :thumbsup:

Love,
Tex
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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 Kari »

Thanks Ant, Mary Beth and Tex - waking up to your messages was very comforting.

It is interesting how my experience conforms exactly to what has been said here many times - as we drop a major offender, the next one in line pops up - like they are waiting for their turn. Last July after I dropped gluten, there was a big improvement FOR A WHILE, then when I dropped dairy, noticeably better FOR A WHILE, then came yeast, much better FOR A WHILE, then eggs, better FOR A WHILE, then MRT foods, the best yet FOR A WHILE. Each time was progressively better than the last.

After starting MRT and I actually had Norman visits, I was exhilarated, but again, it did not take long before a deterioration started (while still in the first stage of LEAP). It soon became evident that there was something in the mix I was eating that disagreed with me. When it became crystal clear that I was reacting to coconut milk (I had a strong instant reaction when I had it by itself one morning), I was very relieved, and dropped it along with the pure juice and flakes. I tried testing the flakes and juice again after a few days, but it is hard to tell what's going on when in a persistent flare, so I decided to leave them out of my diet for now.

Since I'm still flaring, I have to keep up the testing, so now it will be apple. As Tex said, it is often the items we least suspect and eat daily, that can be the real culprits. So, Mary Beth, regarding going back to an earlier stage of MRT, I never really got past the first stage, so unfortunately, there is no "solid ground" to retreat to.

I have been thinking a lot lately about why we get so incredibly upset when we regress, and have come to the conclusion that it is because the reward is not commensurate with the enormous effort we put forth :cry: . This is where this "family" is of utmost importance, as the emotional support helps us cope and live through such crushing disappointments.

As much as I'm suffering now, I know that remission is possible, because I have had small tastes of it along the way. Also, there are many here who are living proof that it is attainable, so the hope is still SOLID:). Thanks again for being here.

Love,
Kari

P.S. I now believe I've developed intolerance to Pepto, since when I tried it recently, my flare got worse instead of better.
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
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Post by TooManyHats »

Kari,

I'm sorry to hear that you're flaring and hope that it resolves soon.

Since I'm so new, can anyone tell me how long these flairs take to resolve? I'm sure it's probably pretty individual, but is there any sort of time frame? Don't expect to see any better results for a week, maybe two weeks? I figure it probably doesn't happen from one day to the next. I've seen a steady deterioration over the last week. Today is the second time this week I've taken Immodium. I don't feel the inflammation anymore like I did earlier in the week, but my bm's are not improving.

When I looked at the foods on the FODMAP that were to be avoided, I realize that I had been eating quite a few of them so I'm hoping that things may improve if I stay away from them.

Here's wishing you steady improvement, Kari!
Arlene

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Post by tex »

Arlene,

Provided that you are able to figure out the problem foods and eliminate them from your diet promptly, usually, the flares become shorter, as time goes on, due to the fact that some healing usually takes place between flares, and the worst offenders are no longer in your diet. Of course, if the problem foods cannot be pinpointed and/or eliminated in a reasonable amount of time, much of the healing progress may be lost to "new" inflammation from the current flare.

Tex
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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 tex »

Kari,

You've pointed out a very appropriate term for describing the recovery process for MC - it is indeed often a series of "crushing disappointments". That's one of the things that make it such a cruel disease to have to deal with - as soon as we see a glimmer of hope, it turns out to be the headlights of a runaway locomotive.

We can be only one day away from remission, but the disease seems to do everything it can, to prevent us from feeling confident about what we are doing, despite the fact that we are doing everything right. We have to have faith, and dauntless dedication.

Love,
Tex
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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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