15 Yrs MC without relief - should I consider Meds?

[TendrTummy]

Hi Tex,

Jumping in late here, as usual..

I consider myself healed, having had mostly formed BMs and no regular gut pain since my liver detoxification diet followed by tolerance testing of a few foods; however, I still have issues with all complex sugars. I can ONLY tolerate a little pure cane sugar, brown sugar, or corn syrup, and I mean a LITTLE... IOW, I can manage a small squirt of BBQ sauce about once every couple of days. If I go more, I start getting the gut pain again. I can nibble a few candies every few days, otherwise I start getting the gut pain again.

I have successfully been rotating dairy back into my diet in the form of a yogurt or piece of cheese every few days, and that causes a little discomfort but I'd like to see if I can build up the enzymes again and have it back in my diet permanently. Same with soy. But I just cannot tolerate complex sugars without pain, acid diarrhea, and plenty o gas.. I know this is offtopic here but it seemed to follow what you had posted so I wondered if you have any thoughts. Feel free to PM me or post here..

Thanks

Christine

[Arosebud]

I wish you luck with your diet. I am also trying to figure out what works and what does not. All very confusing as what works for one does not for the other. I am once again GF and CF and wondering if I should also give up lectins.??

[mle_ii]

The inability to properly digest complex sugars is primarily due to damage to the upper third of the small intestine, (as is the case with celiac sprue). That's where the enzymes used to break down the complex sugars are produced, when the duodenum is operating correctly. If sufficient damage acrues, the first enzyme to be lost is lactase, (which means that lactose intolerance will result), and lactase is the last enzyme to return, after healing occurs. That's why lactose intolerance is so common. As more damage occurs, more enzymes will become deficient. Damage to the colon has no effect on enzyme production, nor does it affect the digestion of complex sugars, except that if lactase is not available in the small intestine, then the colon will break down the lactose by fermentation. That's where all the gas and bloating comes from during periods of lactase deficiency. IOW, those of us with enzyme deficiencies may be latent celiacs. (And that includes me -- I had a lot of problems with sugars before I healed).

Exactly, I hope I didn't imply otherwise.

[mle_ii]

Hi Tex,

Jumping in late here, as usual..

I consider myself healed, having had mostly formed BMs and no regular gut pain since my liver detoxification diet followed by tolerance testing of a few foods; however, I still have issues with all complex sugars. I can ONLY tolerate a little pure cane sugar, brown sugar, or corn syrup, and I mean a LITTLE... IOW, I can manage a small squirt of BBQ sauce about once every couple of days. If I go more, I start getting the gut pain again. I can nibble a few candies every few days, otherwise I start getting the gut pain again.

I have successfully been rotating dairy back into my diet in the form of a yogurt or piece of cheese every few days, and that causes a little discomfort but I'd like to see if I can build up the enzymes again and have it back in my diet permanently. Same with soy. But I just cannot tolerate complex sugars without pain, acid diarrhea, and plenty o gas.. I know this is offtopic here but it seemed to follow what you had posted so I wondered if you have any thoughts. Feel free to PM me or post here..

Thanks

Christine

I'm having the same issues here. For the most part I'm doing great and eating a lot of different foods. But sugars seem to set me off with unformed BMs. Everything else seems fine, though every once in a while I'm ingesting something that inflames the colitis.

By the way I think my food panel testing comes back next week. It'll be interesting for sure to see what it says.

[tex]

Christine,

I may be a celiac, because I evidentally had a lot of damage to the villi of my small intestine, and a lot of persistant enzyme deficiencies. It took me over 3 years on the GF diet, before I was able to eat significant amounts of the common forms of sugar again, without problems.

You may be in the same sort of situation -- you may just need more time to allow your enzyme producton to get back up to speed, for the various types of sugars. A year or two ago, I had to handle sugars the same way you are doing now -- very, very cautiously, and in very small amounts.


Mike,

No, I didn't think you were implying otherwise. The complex sugar issues part of my response was just a follow up on the SCD quote about sugars, that Bob mentioned, and to confirm what Jean had said.


Sylvia,

If you're still actively reacting to something in your diet, I would certainly recommend that you try cutting out lectins, (especially soy and it's derivatives), for a week or two, to see if you can notice any improvement.

Tex

[Arosebud]

Thanks, Tex for the suggestion about giving up soy for a while. Many years ago I had tested for reactions to various foods (blood test) don't know what the test was called...it came back with high numbers against bananas, eggs, clams and tea. I have been using soy milk for calcium and also to put on my Mesa Sunrise cereal. Things were actually looking pretty good for me potty-wise, until I got glutened at a wedding dinner. Bad trouble since (4 days). When things flare up I react by trying to give up almost everything. What I know for sure is gluten and dairy and chocolate work against me. Also, orange juice, eggs and bananas. Giving up soy and all other grains may not be necessary....altho I remember trying soy burgers and getting really bloated and feeling bad. I ordered some GF bread, light brown rice. Terrible stuff! Has a shelf life of a year; requires no special care. Also, the loaves only weigh 8 oz! I bought a case of 6. Not good. Live and learn. I will suspend the soy for a while in addition to other stuff and see how good I feel.

[tex]

If you don't mind baking, the best GF bread by far, is made from mixes sold by Manna From Anna. To me, this bread tastes as good as wheat-based bread. It's moist and soft, with a great texture. Most GF bread is dry and hard, and better suited as a doorstop. The mixes are available online, but the finished. (baked) product is only vailable in a very few major cities. The second best choice is probably GF bread by Kinnikinnick, which is available ready-made in the frozen section in most health food stores.

Here's Anna Sobaski's website:

http://www.glutenevolution.com/

Most of us eventually stop using bread altogether. I use corn tortillas when I need a bread substitute. While I was healing, though, I couldn't do that, because corn bothered me.

Before I healed, I couldn't eat anything with citric acid in it either, without getting sick, and bananas also cased problems.

Good luck with your test, if you decide to cut out soy for a while. Also, be aware that most of us seem to have problems with a lot of things while we are actively reacting, that we might not have problems with, when our digestive systems are working more normally.

Tex

[grannyh]

I can vouch for the bread Tex mentioned. He sent me some and it is easy to make and quite tasty! I had tried all of the ones from the store and they were just awful!
grannyh

[TendrTummy]

This bread has egg tho so I personally can't even try it
WAAAAAHHHHHHHHHH!!!!!!!

so I wanted to mention that one I've found that is good is Ener-G Tapioca "Hamburger buns". They ROCK and you can use 'em for whatever you want.

[tex]

Christine,

How about using an egg subititute? There are some good suggestions at this site:

http://www.dummies.com/WileyCDA/Dummies ... -1081.html

Tex

[bobh]

Well folks, back onto the topic of what to do with this 50 year old guy, I decided to see the Doc and ask for some meds. I have learned from you folks how important diet is in your healing - and I will continue to be alert for what helps, and what foods cause symptoms.

I have been on the SCD a few weeks, and if I have something to say about that in the future I will do a different thread (this thread turned into a SCD'a-thon). I will talk about meds on this thread, and from the success that (some of) you have had, I am leaning toward Colazal and / or Entocort. One of the terms I was not familiar with prior to discovering this site was "Proctitis" though I sure have experienced the symptom for years. The last part of the colon just gets so uncomfortable that the "urgency" to dump battery acid is rather instantaneous. That symptom has been there before starting the SCD, but since introducing the yogurt a few days ago it has intensified.

I introduced the yogurt more aggressively than I should have, weaned back a bit, but still have added gas and urgency. Some of that may be due to a "battle of the good & bad". But it has been steady for a few days now.

Since cutting out all grains (not just wheat) I have become more aware of what the "other" foods are doing to me - previously I wasn't able to tell. I simply had the runs all the time, and couldn't distinguish the culprits.

So I am going to cut back even more on the yogurt - but not completely, and see how it goes up to the point of my Dr. appointment in a couple weeks. If I continue to have added gas & urgency - then I will acknowledge the dairy intolerance. It's odd that the cheese I have been living on for years didn't have the same effect (Monterey Jack, and Cheddar). If I have to stop the yogurt, I will stop ALL DAIRY and see what happens.

BTW, I do eat eggs - and am somewhat ignorant on the casein aspect of that. I have to do some more research.

[tex]

For those who are intolerant of it, dairy products tend to produce what we call "battery acid" D, which is sorta unique to dairy products. It's strange that the cheese didn't noticeably bother you, but the yogurt does. Cheese is high in casein, but it has very little lactose, (at least the aged types, such as you named, are normally very low in lactose content).

Yogurt should also be very low in lactose, and I doubt that it has more casein than cheese, (of course this varies), so it's puzzling that you would seem to be reacting more to the yogurt. I suppose that it is possible that you might be reacting to the cultures in it, but that seems kind of out of place, also.

A lot of us have experienced proctitis symptoms, and hemorrhoid issues during lengthy reactions, since the inflammation evidentaly spreads to the vascular walls, also, and weakens them, while causing them to swell. I once had a doctor tell me that I might as well set up a surgical appointment to correct my hemorrhoid issues, since they could only get worse, and would eventually become such a problem that I wouldn't be able to stand it any longer. After I adopted the GF diet, and my gut healed, the problem completely disappeared, and never returned. I'm certainly glad that I didn't follow his advice.

Very few of us are intolerant of eggs. Enterolab has a test for the most common form of sensitivity, in the albumin, I believe.

Tex

[bobh]

Thanks for the added info. I had never associated the "battery acid" with a specific food type - interesting that you folks have discovered a connection to dairy. I just did a search on this site for "battery acid" and discovered Jean's excellent write up on the Elimination Diet http://www.perskyfarms.com/phpBB2/viewtopic.php?p=4360 Her dairy reaction sounds a lot like what I have experienced. My previous attempts at elimination diets were missing some of her pointers, that is a great contribution.

Tex wrote: It's strange that the cheese didn't noticeably bother you, but the yogurt does.

Well, let's say the volume of yogurt (16 oz in morning, 16 oz before dinner, 2 days in a row) may have added some gasoline to the fire, on top of some moderate cheese consumption which has been fairly constant for years. I know the SCD web site said to introduce it gradually if there is an intolerance. Guess I felt like becoming a lab rat.

[harvest_table]

Well folks, back onto the topic of what to do with this 50 year old guy, I decided to see the Doc and ask for some meds. I have learned from you folks how important diet is in your healing

Well Bob, this 51 year old woman is glad you have decided to try medication to seek the much needed relief you need. Entocort worked for me in conjunction with diet so by the time I weaned off the med my gut had healed and I had a better handle on what foods gave me problems. It's a learning process though, that's for sure. I took Entocort for 6 months but there are others that have taken it much longer.

Wish you the best of luck, this could be a good plan so please keep us posted and thanks so much for your input, you inspired a great discussion.

Love,
Joanna

[TendrTummy]

Wayne,

I've actually bought an egg replacement, but I'm so lazy I never get the chance to use it LOL

Actually I"ve been oncall a lot which means I work 24/7 for 2 weeks straight. UGH! Anyway, back to the topic!

Christine