Progress report and supplement that's helping

[JoAnn]

Hi everyone, I haven't posted in a very long time. Life's been busy and I've been on my journey of tapering off entocort. I didn't want to report until some time passed and could give some accurate information. I'm gf, df, soyf, and eggf. Last August I started tapering down from 3 to 2 entocort pills. I had a bumpy start and Gloria (Thank you again!) held my hand and encouraged me through it. I have found that everytime I decrease, I have problems and then I seem to adjust to it. I was adding 1 immodium pill before I went to bed to help me through the process. Last month when I checked in with my pcp, she said she had been doing some research and wanted me to try a supplement called D-Mannose.She said it is usually used for urinary tract infections, but thought it would help with mc. She said she thought it would help with the villi in some way. She had the details, I just can't remember how she said it. I thought it was worth a try and that I would probably have a bad reaction or it wouldn't do anything. I bought the NOW brand (which is free of all my problem ingredients) and paid about $30. The pills are 500mg and I take one am, noon, and pm.
Lo and behold, I had a huge improvement and almost immediately. I don't take any immodium anymore, I'm on 1 entocort every other day, I generally have one norman bm each day in the am, and I feel better. I've been doing this for 1 month, so I don't know if it will continue to work in the long run. I don't know if this will help everyone, but it has been amazing for me. My next step is to try to be completely off the entocort and stay on the D-mannose. I hope this might help someone else. I wish I knew what it would have done in the beginning because I've been using the diet and entocort since last Feb. Even on the entocort, I was never that normal. Like I said, I don't know if I'm having great results because I've been on the diet for awhile. Thanks again to everyone on this board. You've given me my life back and it's a comfort to know you are always there through all the ups and downs that come with this disease. JoAnn

[JLH]

Thanks for the info. So happy that it's working so well for you.

[tex]

Jo Ann,

You are definitely on to something here, (kudos to your PCP). I'm not sure how this applies to MC, but after researching it, D-mannose most definitely appears to me to be the best choice by far, for treating UTIs. It should be unquestionably safe to use, (whether it's needed or not), due to the fact that 90% of ingested mannose is excreted, unchanged, into the urine, within 30 - 60 minutes, and 99% of the remainder is excreted within the following 8 hours. Mannose, glucose, and fructose are closely related, and have long been known to be interconvertible, (can be mutually converted from from one to the other), yet there is no significant increase in blood-glucose levels during the 8 hours following ingestion of mannose.

Consider these quotes, from the article at the link that follows:

Mechanism of Action: D-mannose is a naturally occurring sugar similar in structure to but metabolized differently from, glucose (a component of table sugar). Because the body metabolizes only small amounts of D-mannose and excretes the rest in the urine, it doesn’t interfere with blood-sugar regulation even in diabetics.

The cell wall of the UTI-causing E. coli bacteria has tiny finger-like projections that contain complex molecules called lectins on their surfaces. These lectins are cellular glue that binds the bacteria to the bladder wall so they cannot be readily rinsed out by urination. However, because D-mannose molecules will glom on to these lectins and fill up all of the bacterial anchoring sites, the bacteria can no longer attach to the bladder wall and are, therefore, flushed away. In other words, unlike antibiotics, D-mannose does not kill any bacteria, whether they are good or bad, but simply helps to displace them.

D-mannose: Studies suggest that D-mannose is 10 times more effective than cranberries in dislodging E. coli bacteria from the bladder wall, and, as such, can ameliorate more than 90% of UTIs in 24-48 hours.

http://www.healingtherapies.info/Urinar ... Health.htm

For a more detailed explanation of how D-mannose works, read this article:

http://www.tahoma-clinic.com/mannose.shtml

Since such a high percentage of mannose is diverted so quickly into the bladder, I really don't understand how it could help to control the symptoms of MC, unless there are pathogens, (or other toxic agents), present in the lumen of the intestines, solely responsible for the symptoms of MC, and these pathogens, or other toxic agents, contain lectins on their surfaces, which makes them vulnerable to being flushed away by the fecal stream, similar to the process described in the quote above, referring to how this "purging action" occurs in the bladder.

Some of you may recall that for several years, Polly and I have suspected the existence of an unknown pathogen or toxic agent in the lumen, which facilitates the symptoms of MC. I believe that Dr. Fine first suspected this possibility, and pretty strong evidence that it may be true, is found in the fact that if the fecal stream is diverted away from the colon, (by means of an ileostomy, for example), the histology of the colon will return to normal.

http://www.ncbi.nlm.nih.gov/pubmed/7615 ... t=Abstract

Many thanks for posting that information.

Tex

[JoAnn]

Hi Tex, thank you for the added information. I do remember my dr. talking about lectins. The links you posted are very interesting reading and makes me wonder just why the D-mannose is working so well for me. I can't help but think the theory you and Polly have has got to be valid. I'm crossing my fingers that this supplement will continue working and will be a strong weapon in fighting mc. Thanks again for the added information and understanding. I just hope it will help others. JoAnn

[Gloria]

JoAnn, this is fascinating! It sounds like you have a great PCP who is willing to think out of the box. I'll be interested in knowing if you continue to do as well once you're off Entocort completely and also if/when you go off the D-mannose completely. Wouldn't it be great if taking the D-mannose for a short time resolved MC? There seem to be studies about its effectiveness with UTIs, but not with MC.

As one who gets UTIs about once a year, you can bet I'm going to try D-mannose before taking an antibiotic. I might even try taking it as a preventive. It sounds completely safe.

It's great to read that you are doing so well. Thank you so much for sharing your success. Keep us posted.

Gloria

[JoAnn]

Hi Gloria, I haven't had time to catch up on all the posts, but I saw that your mother-in-law passed away. It sounds like it was a blessing, my condolences.
As far as the D-Mannose, it took me a week to even tell my husband about the good effects-I think I'm superstitious about saying things out loud for fear that they will vanish. Now I'm just holding my breath and hoping that this is for real and not a temporary fix. I will certainly let you know how things progress. Thanks again for your continual support.

Joan, thanks for your support. I haven't had time to read all the posts, but it sounds like you're on a trip to help a loved one. Good luck to you in all you're doing. JoAnn

[Dee]

JoAnn,
I have the D-Mannose powder form.
I just mix it in a little bit of water.
It doesn't really have any taste.
I picked up to bottled of it at a health food store to see if it will help with my UTI's.....
Interesting about your results with the D-Mannose.
Happy to hear you seem to be doing great!!!

Love
Dee~

[JoAnn]

Hi Dee, I was wondering what dose of the D-Mannose you are getting when you mix the powder. Have you taken it over any length of time and have you noticed any effects on your mc? I'm getting 1500mg daily and things are still good. Thanks JoAnn

[Dee]

I take 1 teaspoon which is equal to 2,000 mgs. You can actually take it 2 x's a day.
I can't tell you anything pertaining to MC as I take it to prevent UTI's. Sorry.


Dee

[ant]

Hi all,

I find the potential of D-Mannose very interesting. The following questions are running through my mind:

Since it unbinds E. coli (and possibly other bacteria) from the bladder wall, can it do the same (at a a lower rate?) in the colon?

If it does, will this remove both good and bad bacteria in equal or unequal proportions from the gut? In other words, could it either upset or correct an imbalance of flora in the gut? Also, could it negate or enhance the possible beneficial effect of probiotics?

Either way, could it anyway reduce inflammation? (I have noted in my own past reactions that certain antibiotics have sometimes reduced D and inflammation, albeit for a short time --- since it can remove bacteria (and possibly other unknown pathogens/toxins) could D-Mannose have the same effect?)

Sorry......questions, questions.... I have located some D-Mannose and am thinking of testing it too...

All the best, Ant

[tex]

Ant,

Those are excellent questions - I with I knew the answers.

Consider this: Perhaps in the gut, the problem is not necessarily the bacteria, so much as the lectins themselves, and the interactions that they have with bacteria.

This study on lectins was done 15 years ago, but very little exploration of this obviously serious effect, has been done since then:

Oral exposure to lectins or the presence or absence of bacteria in the rat small intestine were shown by histological methods using anti-lectin antibodies or digoxigenin-labelled lectins to have major effects on the state of glycosylation of lumenal membranes and cytoplasmic glycoconjugates of epithelial cells. Taken together with the dramatic effects of exposure to lectins on gut function, metabolism and bacterial ecology, this can be used as a basis for new perspectives of biomedical manipulations to improve health.

Glycosylation is a chemical reaction in which glycosyl groups are added to a protein to produce a glycoprotein. Lectins are glycoproteins that act like specific antibodies but are not actually antibodies. The conclusion in the above quote is a very important observation, since it suggests that various lectins can attach themselves to a specific receptor that is expressed on the gut wall, and pass through the intestinal barrier by that means, rather than through the tight junctions, through which legitimate nutrients pass.

http://www.springerlink.com/content/k76344576x4g7m11/

As background information, lectins are any of a group of proteins that bind to specific carbohydrates, (oligosaccharides), on cells, and act as an agglutinin, (which happens to be a characteristic of gluten). Lectins are a group of proteins that are found in most types of plants and they discourage predation, by generating a toxic effect to various types of insects and animals that eat plants. Most lectins are not harmful to humans, however, a few are problematic, and these are the ones that attach themselves to tissue in the gut. Specific ones that do this are found in wheat, various legumes such as peanuts and soy, and tomatoes. Further research will probably identify more of these potentially harmful lectins. And in case you're wondering, yes, it's the gluten in wheat that contains the lectins.

So, just washing out any wayfaring lectins that are attached to the gut walls, should have a beneficial effect, to say nothing of those attached to gut bacteria. Frankly, I doubt that enough research has been done to determine the percentage of beneficial gut bacteria, (if any), that are prone to lectin attachment, (though I admit that I haven't checked this out), but I would suspect that it would probably be beneficial to flush them out, also, without risking seriously disrupting the normal balance, (certainly much less risky than using an antibiotic). I have no idea whether or not the bacteria in probiotics are prone to bind to lectins.

Either way, could it anyway reduce inflammation?

Since Cipro, and certain other broad-spectrum antibiotics obviously do that, (inflammation must be reduced, if symptoms are diminished), then D-Mannose should certainly have a similar effect, assuming that it can get that far, before it is absorbed, and taken out of circulation by the liver.

I wish more data on it were available because it's not impossible that this might hold the key that unlocks the mystery of not only MC, but possibly all other autoimmune diseases. I've been planning to write a post describing a theory that I have, concerning some of these issues, but I need to organize my thoughts on it, a bit, before posting, and I've got to get to work pretty soon, so I'll have to do that at a later time.

Thanks for raising some very thought-provoking questions.

Tex

[ant]

Dear Tex

You beat all the Professors I ever attended at University!

Tex wrote

And in case you're wondering, yes, it's the gluten in wheat that contains the lectins.

Sooooo, as a for instance.....if I had an intolerance to brown rice but was able tolerate white rice, it could be the brown part of the rice that had "potentially harmful lectins". Does that make sense?

And would another possible for instance be...... that it is the skins of potatoes that contain those pesky lectins, but not the inside of the potatoes?

I am going to start taking D-Mannose as a test, but of course with so many variables (my continuing use of Entocort, diet restriction, probiotics and tapering off Pepto Bismol) I doubt I will be able to isolate any effect one way or the other....... unless I go into sudden, full and lasting remission.....now that would be great......but I will not put all my store of hope on such an outcome...

All best, Ant

[tex]

You beat all the Professors I ever attended at University!

Thanks, but I'm afraid that now I'll have to start buying larger hats.

Yes, in rice, the harmful lectins are in the hull that's polished off, when white rice is made from brown rice.

In potatoes, the tuber itself has lectins, and the pericarp, (the skin), has a different type of lectin.

I believe that you will probably find the article at the following link, to be very enlightening. Consider these quotes from that article:

Remember all those old-fashioned things our grandparents used to do to grains and beans before eating them, like soaking beans overnight, sourdough-fermenting bread dough and nixtamalizing corn? All those things we've abandoned in favor of modern convenience foods? You guessed it, those reduce lectins dramatically, along with a long list of other toxins like phytic acid and protease inhibitors. Modern yeast-leavened breads, pastries, crackers, corn and soy products are no longer prepared according to these methods, and their lectin levels are typically much higher. One thing to keep in mind is that these processes reduce but generally do not eliminate lectins and other toxins.

The Kuna eat mostly plantains, yucca and kidney beans. These are three exceptionally healthy populations with a very low intake of grains. What happens when you feed these same people wheat? The Kuna have a well-documented rise in blood pressure, diabetes and cardiovascular disease mortality when they move to an urban, westernized setting. Okinawans became obese and unhealthy when American food was introduced. Wherever white flour and sugar go, the diseases of civilization follow. Weston Price documented this in the dental and skeletal health of 14 different cultures throughout the world.

Soy has one of the highest lectin activities of any food, unless it's traditionally fermented into miso, tempeh, tamari or natto.

http://wholehealthsource.blogspot.com/2 ... rt-ii.html

I hope your test brings some relief.

Tex

[Rosie]

Tex, I went to the link you provided, and then got distracted/interested by something I read there, talking about the benefits of bulbs/tubers in the paleo diet versus grains.

Dig up a few camas bulbs however, and you've got yourself a meal in 5 minutes.

I live in Oregon, and have lots of Camas bulbs growing wild on my property and along the roadside, so I decided to do a bit of research, especially since I remembered reading about the Louis & Clark Expedition's encounter with Camas bulbs. The above quote "you've got yourself a meal in 5 minutes" isn't exactly true, and also speaks to the common theme of the importance of proper preparation in getting rid of the "bad" stuff that is often present in plants. Here is what I found on a USDA web site on Camas:

Traditionally, camas bulbs were almost always pit-cooked for 24-36 hours. It is probable that lengthy cooking is necessary for maximum conversion of the inulin in Camassia to fructose. The consumption of large quantities of inulin (particularly by sensitive or unaccustomed individuals) can lead to gas and bloating. The sweetness of cooked camas gave it utility as a sweetener and enhancer of other foods. Sweetening agents were in short supply among native peoples, and camas was highly valued.

I remember reading a biography of the Lewis and Clark Expedition, and a story about their encounter with the West Coast Indians during the winter. They had been living on a diet of meat almost exclusively for a number of months, but game had gotten scarce. The Indians traded them some Camas bulbs, and Merriwether Lewis’s journal documented their intense GI distress after eating them (gas, bloating stomach pains, diarrhea). I suspect that they didn’t know that they should cook the bulbs for a day to convert the inulin to fructose. And then going from an entirely meat to an entirely carbohydrate diet must have been brutal on their digestive system too. They gave up on the Camas bulbs in disgust and decided that they would just have to hunt harder. They were able to get dried salmon too, but it cost them a lot more in trade.

Here is some other interesting information about the Indian's raising Camas:

Tribal wars and family feuds erupted over disputes about ownership of camas fields, which were so extensive they were described as looking like large, deep-blue “lakes.” Native people had a set of sophisticated management techniques to tend the wild fields. These included inherited ownership and responsibility for particular camas beds; clearing rocks and brush and burning weeds; cultivating the soil to keep it loose; transplanting the best bulbs; practicing sustainable harvesting methods, including selective gathering; and removing death-camas bulbs (Zigadenus venenosus) so they wouldn’t be mistaken for the edible variety. (As an aside here, death camas have white flowers and the regular camas have blue flowers. They are different species, so don't hybridize. But the bulbs look the same so the fields have to be purged while in bloom. All parts of this plant contain the poisonous alkaloid zygadenine, which some claim to be more potent than strychnine. One bulb, raw or cooked, can be fatal.)

Camas bulbs were important food staples as well as central elements of celebratory feasts. Most early explorers credited camas with saving them from extreme hunger or worse. Later, settlers declared them worthy replacements for other, more familiar comestibles. Native people layered camas bulbs with moistened grasses in pits and roasted them for “two nights and a day.” Settlers learned to stew camas for nearly as long, until it became soft and sweet. Then they used it to make the western equivalent of the pumpkin and squash pies they remembered from home.

This is a bit off topic, but I had fun with it!

Rosie

[tex]

Rosie,

That's very interesting information. You're obviously a good reseacher, (and a good historian). As you point out, those who forget history, (or are ignorant of it), are doomed to repeat mistakes that were resolved long, long ago. I'll bet that our ancestors knew a lot of things about ancient foods that we've lost over the millennia. I wonder if Mr. Guyenet has ever even eaten any camas bulbs.

Thanks for the insight. I wouldn't recognize a camas bulb if it bit me on the nose.

Tex