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Delta
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Post by Delta »

Georgia,
As you probably know allready, there is a wealth of information available within this wonderful website, I've spent many hours the past 1 1/2 weeks going back and reading old posts as well as the newer stuff. My I wish you well finding your way to feeling better, having faced a much tougher battle with cancer I expect this is little more than a speed bump for you.
God Bless-Dan
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Post by Lucy »

Hi Georgia,

I've been symptom free since being absolutely off gluten for five years this month. (Started in earnest the day after Thanksgiving, and didn't eat but one bite of bread for that dinner.) I had more symptoms than you could throw a stick at, not just the gut symptoms, including generalized body pain.

The discomfort and stiffness pretty much left in THREE DAYS. It was like a miracle. That's because it only takes the thin outermost layers of the gut that about that long to heal completely or almost completely. It took about 6 months for the overwhelming fatigue to end, however. I'd had migraines since my twenties, and maybe longer, and they were almost constant prior to the diet. They had changed in nature closer to the time when I became sick in so many other ways. I was in my late fifties when I finally got on the diet for the gluten, so I'm sure that there's still a little residual damage that doesn't produce any noticeable symptoms now, simply due to age. This may show up in the fact that I'm still not absorbing nutrients, vitamins, etc., from my food normally. In young celiacs (small bowel) their damage heals pretty completely, so I assume the same is true for the colon with M.C. in a younger person who gets off gluten faithfully.

It was so obvious that I was better off the obvious sources of gluten (even though I still had reduced amounts of diarrhea) that I continued to learn how to remove the trace amounts, seemly hidden in everything. This was a STEEP learning curve, I'll guarantee. Most of the initial information I learned directly or indirectly from this group, including websites that were helpful in terms of foods that contained gluten, and also direct help with things I could safe eat while learning. After a period of intense internet and kitchen work, I joined the local celiac support group, just to actually see what my gluten sensitive brothers and sisters looked like. That was helpful in itself. The first meeting was at a local Viet Namese restaurant where the group had already worked everything out with the restaurant. All I had to do that evening was relax and visit with the members who were long timers or old timers. They were more than willing to offer advise about the local celiac scene. They didn't even know that I'd not had the official testing for celiac disease but just the colonoscopy path report.

Anyway, I got progressively better as I found where more of the gluten was hidden in even the tiniest amounts, and each removal reduced the already much reduced diarrhea, and my stools began to firm up verrrry gradually.

In the next few months, I would have a slight increase each time I'd eat any dairy or the protein from it, casein, that was in any other foods I eat. Once dairy was eliminated, the only times I'd react were when I'd have an occasional egg or soy which I seldom had anyway. Turns out dietary yeast causes me to react, but I don't think I would've noticed had it not been for the testing I had on my stool and that also confirmed my other observable "allergens." In a few months, I'd removed all of them from my diet, and resumed something miraculous -- formed, normal stools!!!

Having said that, if I had it to do over, I think as soon as I observed I was feeling better off the gluten, I would've gone to the best GI I could find to scope and biopsy my small bowel. I would've made sure the doc's office was capable of sending the blood specimens to Promethius laboratory, and if not that one, then perhaps Mayo Clinic's as those are the two best ones for this blood testing. This reflects a change in my thinking, and the reason is that, although I personally believe that a very, very high percentage of people with M.C., although they really are gluten sensitive and will definitely get much better off of gluten, a small percentage will have biopsy proven celiac disease.
That's not the issue that causes me to now be FOR the small bowel exam.
What has pushed me in that direction is that it is possible that something serious might be missed in the small bowel. If one gets better off the gluten, then, in order to do the standard testing, one has to re-start the gluten-laden diet for months in order to bring the damage back. It just makes more sense to me now to get that out of the way, and then, one doesn't have to undo all the good the diet does just to get an "official" diagnosis.

OK, now that that's out of the way, since most people won't get a positive diagnosis for celiac disease the old fashioned way, there's still the option of doing Enterolab's tests which will turn up many, many more gluten sensitive people in the M.C. group than either blood testing or biopsy of the small bowel. I did the whole stool panel thing and cheek swab with Enterolab, and was found to have one of the main gene's for celiac disease and another that is common to people with M.C. that I got from my father. All the "allergens" are already mentioned, but I also had positives for fat in the stools as well as the enzymes in my stool that would only be there in one with a damaged small bowel, and thus the fat, and loss of fat soluble vitamins through the stool.

Some may have to figure out their other foods they are sensitive to through trial and error, but it's well if one can confirm with Enterolab. It just makes it a bit harder to stay off these foods further along when you feel "well."

I have not been one to stay on medication, and with diet, didn't have any reason to be on them. I was prescribed Colazol, but since headaches are a symptom and mine were already so bad, that made me not want to try them. Had to throw out most of the big bottle.

After the removal of each food, particularly gluten, I was more easily able to find out my "transit time" through the colon. Mine turned out to be 24 hours.
The advantage to finding this out is that once your system is "clean" of the protein fragments that you are reacting to, if you have a tiny return of diarrhea, you can go back and remember what it was you ate, say 24 hours before, and then, if you had anything new, check out the ingredients list again, or at least try the new food one more time, and see if it effects you the same way. I noticed that the first meal I had 24 hours after the ingestion of one of these "allergens" that I would react, and since one generally eats, say lunch, about 24 hours after the last lunch, it's more or less 24 hours later that I react. You'll find that transit times vary a whole lot. Age seems to be a factor here in terms of speed of transit, but also, how well your colon is has something to do with it. It's almost impossible to figure this out until you've removed the gluten, and any other one of your allergens you tend to eat every day. This is because as long as you're eating anything that causes you to react, you're constantly reacting. You have to be at least mostly normal to pick up on a new problem food, if that makes any sense. Anyway, this is another reason why the stool testing speeds things up.

In a way, I think it's probably better to remove just one allergen at a time if, in fact, you even have more than one. I did the gluten first, then the dairy, and then the eggs and yeast. Soy was the last and probably the easiest.
One never really totally gets all the dietary yeast out due to it being on fruits and vegetables naturally, but at least we can remove it if necessary by not eating gluten free baked goods with added yeast. There are other ways to fix baked things.

This is difficult at first, but after a while, it's second nature, so however you are going to approach this illness, be diligent and patient. It's so worth it.

Welp, I've written too much, so will let you off the hook for now.
Yours, Luce
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tex
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Post by tex »

Luce wrote:In a way, I think it's probably better to remove just one allergen at a time if, in fact, you even have more than one.
Just an observation: That will work, if removing individual allergens brings noticeable relief, and if you happen to remove them in the correct sequence. Many of us, though, will continue to have uncontrollable D, unless all of the allergens are removed from the diet. That makes it virtually impossible to determine whether or not removing another food type actually makes any difference. And, if, for example, removing gluten from the diet doesn't bring any improvement in a few days, or a few weeks, or a few months, and so you decide to add it back into the diet and then try removing casein, etc., you will never achieve remission. When I was trying to track down my intolerances, even keeping a food diary, and faithfully following the GF diet for a year and a half, I still had uncontrollable D, a lot of the time, until I got all of my intolerances out of my diet. Some people are luckier than others, but for most of us, it's never easy to determine our food intolerances, (unless we order the Enterolab tests, of course).

Tex
:cowboy:

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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Georgia
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Post by Georgia »

Okay, I certainly have my work cut out for me. I'm thinking of starting this after Thanksgiving . . .Kind of a glutton for gluten until after Turkey Day. Where can I find what to eat while I'm still learning what contains gluten? I'm lactose free right now. I believe I need to get rid of gluten first, before the lactose? How do I tell it's the lack of gluten that is making me better and not the Asacol? Sorry for all the questions. I just want to do it right the first time.
So thankful for all the encouragement and info on this thread! This is a great place to be.

Also I'm looking into a friend of a friend who has this marvelous cook book . . .will keep you updated.
SPRINKLES!
Georgia
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tex
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Post by tex »

Hi Georgia,

The fastest, and most efficient way to test for food intolerances is to get rid of all suspected intolerances right at the start, and then add them back in, one at a time, after you are in remission. That method is explained here:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=731

and here:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=732
Georgia wrote:How do I tell it's the lack of gluten that is making me better and not the Asacol?
The answer is "you can't tell", just as you can't tell which food is a problem if you remove or add back in, several foods at one time. There's no way to determine which one is responsible for your response, unless you do things in an organized way, that will allow you to easily isolate the responses to various foods. If you are taking a med while you are on the diet, then after you have achieved remission for a while, and you have allowed sufficient time for your gut to heal, you can begin to withdraw from the med, and if you have eliminated all your intolerances from your diet, you should remain in remission. If the symptoms begin again, then you still have another intolerance or more, which haven't yet been discovered.

Lactose is an irrelevant intolerance, with MC, because any form of enteritis, (even the flu), will make you lactose intolerant, because your small intestine will stop producing enough lactase enzyme to digest lactose, until the enteritis is past. IOW, everyone, even the general population, is lactose intolerant, anytime they have serious D. Lactose is a sugar. Sugar reactions are usually temporary. MC reactions are cause by protein intolerances, which are usually permanent. Due to the way that intolerance reactions are triggered, (because of amino acid chains of a certain configuration, for certain foods, it is virtually impossible to be intolerant of any other food, without being intolerant of gluten. That's why gluten must always be cut out of the diet, for anyone trying to control their MC by diet changes.

There's a lot of information on the diet in this forum, and there are extensive lists of food ingredients that contain gluten, dairy, soy, corn, etc., for all of the common intolerances:

http://www.perskyfarms.com/phpBB2/viewforum.php?f=6

A lot of the links in this forum also contain dietary information, especially those closer to the bottom of the page:

http://www.perskyfarms.com/phpBB2/viewforum.php?f=15

There are hundreds of good GF recipes here, (five pages of them, as of today's date), but I'm not sure if they are all dairy-free and soy-free, (though I think they may be), so be sure to read the ingredients carefully before trying any of them. Dee is a professional chef, (who has MC, of course):

http://www.perskyfarms.com/phpBB2/viewforum.php?f=7

You can do this, by removing one suspected intolerance at a time, if you prefer to do it that way, but once you remove a food, never add it back into your diet, until you are in remission. If you add them back into your diet before you achieve remission, you may be adding a "bad" one back in, and you will never be able to achieve remission, after that. After you are in remission, then you can try adding foods back into your diet, to see if they actually are a problem, or not. That may have been what Luce intended to say, but when I read her post, I got the impression that she was implying that if you don't see a positive response within a few days after removing a food from your diet, then it's OK to add it back in. That's not true, of course.

If I didn't explain myself clearly enough in this post, or I just confused you, please let me know, and I'll try to do a better job of explaining the situation. While controlling MC with diet is a simple, (and effective) concept, actually getting it done, and figuring out what we need to do, can sometimes get pretty complicated, especially when meds are involved, also.

Tex
:cowboy:

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 RUBYREDDOG »

"because of amino acid chains of a certain configuration, for certain foods, it is virtually impossible to be intolerant of any other food, without being intolerant of gluten. That's why gluten must always be cut out of the diet, for anyone trying to control their MC by diet changes".

Tex, this got my interest. Can you explain this further?

Hotrod
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Luce

Post by JLH »

I think soy is the hardest for me....it's in everything it seems. I could have been happy with just gluten and dairy.
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

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tex
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Post by tex »

Hotrod,

Okay, you caught me red-handed here - that's strictly my opinion, a WAEG, based on unproven theory, and empirical evidence. Here's my logic:

Only a tiny fraction of gluten, (known as gliadin), actually causes the reactions in individuals who are gluten-sensitive. The amino acid chain that represents gliadin, is not a single amino acid, it's a part of a much larger polymer chain, that represents the protein known as gluten. If you look at the basic structure of gluten, represented this way:

MKTFLILALLAIVATTATTAVRVPVPQLQPQNPSQQQPQ
EQVPLVQQQQFLGQQQPFPPQQPYPQPQPFPSQQPYLQLQ
PFLQPQLPYSQPQPFRPQQPYPQPQPQYSQPQQPISQQQQ
QQQQQQQQQQQQQQQIIQQILQQQLIPCMDVVLQQHNIV
HGKSQVLQQSTYQLLQELCCQHLWQIPEQSQCQAIHNVVH
AIILHQQQKQQQQPSSQVSFQQPLQQYPLGQGSFRPSQQ
NPQAQGSVQPQQLPQFEEIRNLARK

Within that composition, I've emphasized the gliadin component in red, IOW gliadin can be represented as:

RPQQPYPQPQPQ

All of the above is documented fact, by the way. Interestingly, in this gliadin sequence, the amino acid glutamine is represented by the letter Q, and as you can see, there are five repetitions of it, (almost half the total number of amino acid components that comprise gliadin. That may be why we don't do so well with monosodium glutamate, (MSG), but that's getting side-tracked, here.

By the way, this information basically comes from an excellent article that was written for an entierely different purpose, but which discusses the amino acids involved here quite elegantly, IMO:

http://www.celiac.com/articles/826/1/Gl ... Page1.html

Anyway, the point is, there are a lot of other food proteins with embedded amino acid sequences, that closely resemble the sequence for gliadin. In the representation above, by the way, "R" represents the amino acid Arginin, "P" represents Proline, and "Y" represents Tyrosine. These are all standard representations, of course. I don't have time to run through the amino acid chains for casein, soy, etc., searching for matches for the gliadin sequence, but I can assure you, they are there. If you want to try doing some searches yourself, I can post links that offer a representation of those amino acid chains, where you can look through the chains for sequences that closely resemble gliaden. That sort of thing tends to make me cross-eyed in a hurry, though - I would hate to have to do that on a regular basis.

Apparently, casein offers a pretty close match or two, since so many of us have problems with it, and soya, (the primary protein in soy beans), zein, (the primary protein in corn), etc., offer decreasingly less similar opportunities for a match, or more correctly, a mimicing sequence.

The bottom line is, all of these "secondary" proteins seem to contain an amino acid sequence within their amino acid chain, that closely mimics gliadin, suggesting that gliadin is the protein that is the primary trigger, and some of us have immune systems that apparently become confused, and also target these other amino sequences that "mimic" gliadin. After all, reacting to gluten is apparently an erroneous reaction in the first place, so it's no wonder that some immune systems make additional mistakes when they become "confused".

Anyway, that's the way I see it. I could be all wet, of course. :lol:

Tex
:cowboy:

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 Georgia »

Thanks, Tex! Reading all these links will keep me out of trouble for quite some time not too mention getting me up to speed. I really appreciate your thorough and detailed response and your willingness to share your wealth of knowledge. I'm off to do my homework.
SPRINKLES!
Georgia
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Post by RUBYREDDOG »

Wow!!! I'm getting a head ache and I have not even finished your post. It is fascinating how all these factors work and how close the food group proteins are to one another. I once read that the only thing that distinguishes us from chimpanzees is 3 chromosomes. I'm going to look at the link you provided to learn more. Thanks so much for your explanation.



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Post by tex »

Georgia and Hotrod,

You're both as welcome as a cool breeze during an August heat wave. I hope you're feeling better with each and every passing day.

Tex
:cowboy:

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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