15 Yrs MC without relief - should I consider Meds?

[tex]

Hi Bob,

Thanks for posting that information. You have two of the primary celiac genes, one from each of your parents. Did you ever have a small intestine,. (duodenum), biopsy, before you started the GF diet, to check for villous atrophy? You may be a celiac, (in addition to having MC).

The test value of 10, on the milk test means that you definitely are casein intolerant. Borderline doesn't mean anything in this case. Ten or above is a positive test result, indicating intolerance.

Tex

[bobh]

a small intestine,. (duodenum), biopsy, before you started the GF diet, to check for villous atrophy?

No - hadn't heard of that procedure. Learning a lot here... But I am remaining strict GF, making most of the food I eat.

The test value of 10, on the milk test means that you definitely are casein intolerant.

OK. I had actually forgotten about that part of the test, and I'm glad Mike brought it up, and Tex helped with the result. Mathematically, I was thinking "15 of 10 on the Gluten = very bad, 10 of 10 on the Casein = not as big of an issue". Glad to have that clarified.

We all want instant relief (find a bug, take a drug). So I thought the milk thing was further off the radar screen. My yogurt maker should arrive tomorrow... So basically this test result means that despite the 24 hour fermentation (per SCD to get rid of the lactose) that I am gonna get hammered by the casein? Damn...

As mentioned earlier, I tried some of these "elimination diets" and DID go completely off dairy for a couple weeks while living on the rice protein, brown rice, and veggies. But the "D" was raging as bad as ever. Looking back, the raw salad was a likely culprit through the process. And if the SCD theory is correct, the brown rice was not being digested (and just feeding the bad bacteria).

This site has helped me to "shuffle the deck" and take a new look at the solutions, thank you!

[mle_ii]

This thread might be of interest to you as well.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=255

I've consolidated all the foods into the first post so you don't have to go through all the posts.

[bobh]

Awesome! Interesting to "extrovert" from one's own scene, and look at the broader horizon of what others with MC have issues with. Lot of common points on the "usual suspect" triggers. Thanks for your hard work (everyone) in putting that together.

[Jean]

Bob,

First, Welcome! Sorry to be so late, but think I had a bug all week. You've been given some very good advice, so I'll just add a few notes of my own:

-I cringed when I saw that you just ordered a yogurt maker. Dairy is such a common intolerances among us. Guess we might be seeing it on Ebay soon?

-I'm intolerant of rice, so if you are too, you're elimination diet may have had a major flaw, LOL. The good news is that after eliminating it from my diet for a year, I am now able to eat it occasionally.

-You must be one courageous man! To travel to New Orleans and not know where you'll find a bathroom. McDonalds were always my favorite stops when I was on the road. I'll never forget being in the middle of rural Michigan and having to stop in a corn field. It's pretty hard to get panty hose down in the short amount of time I had. How do you stay gluten free? Do you bring your own food?

-I agree that your test from Dr. Fine means that you are dairy intolerant. If I were you, I would eliminate that right away. I bet you feel better quickly. Statistically (from us MI's) corn and soy are the next things you may need to eliminate. I know it's not good news, but it's worth it to feel better.

-You said that you have other autoimmune problems "but it's not AIDS". I'm not sure why you said that. Autoimmune diseases are pretty much the opposite of AIDS. Autoimmune diseases are caused by an over active immune system, AIDS is a suppressed immune system. I've often wished there was a way to mix the two and come up with a 'normal' immune system.

Love, Jean

[bobh]

Jean said: corn and soy are the next things you may need to eliminate.

I had discovered the SCD a couple weeks before finding this great site, so I have been off corn, soy (and all grains) for about 3 weeks now - still having "D" without improvement. Haven't had a formed stool for about 6 months, and been fairly chronic for 15 years. But this site is opening some new doors...

Jean said: your test from Dr. Fine means that you are dairy intolerant. If I were you, I would eliminate that right away... you just ordered a yogurt maker. Dairy is such a common intolerances among us. Guess we might be seeing it on Ebay soon?

Yeah, that is the main question I have right now. Before your collective help, I had the opinion that dairy wasn't a problem for me (eliminated it and no improvement). But now I see that during the times I had eliminated it I was eating grains (and raw salad, which does add explosive problems for me).

Prior to kicking the yogurt machine out the door, I am going to give it a try (it's making it's first 24 hr fermented yogurt as we speak). I know the FAQ's for Newbies on this site has a comment that the Specific Carb Diet can be helpful to MC/LC/CC, yet many of you don't seem to favor it, or have tweaked it due to individual tolerances (which I totally understand).

I was miserable for the initial 2 weeks on the SCD because I really wasn't ready to start, didn't have the nut flour, etc. Eventually I called Lucy's Kitchen, spoke with Lucy Rossset (wrote the SCD cookbook) and she helped me to do the diet per the book. Right after ordering the yogurt maker, Mike reminded me about getting the old 2004 test results sent from Dr. Fine - and I was concerned about the dairy intolerance.

I looked up "casein" in the index of BTVC and read on page 57 (2004 version)

"bacterial toxins from the intestine can result in sensitivities to certain dietary proteins, and ....lead to sensitivities to proteins such as casein and gluten" "... immune response, an ancient form of defense coded in genes as an inherited trait... response to bacterial toxin could stimulate the production of antibodies ... an inflammatory response... part of an adaptive immune response."

So... here I am with a lab report saying I am casein intolerant, but wondering if that "happened" because of living off brown rice and other grains, which I wasn't digesting, feeding the bad bacteria, creating toxins.

I E-mailed Lucy, and here is her reply:

Hi Bob,

I would suggest trying to give the diet a chance to work without creating
extra restrictions.
I can tell you Elaine wasn't a fan of food allergy tests. They usually just have people unnecessarily restricting the diet. The best thing you can do to "fine tune" the SCD is to work at eating a sensible amount of certain foods (usually nuts, desserts, fruit, and fruit juices). Sometimes what people do is eat way too much of something and then decide that that food doesn't agree with them, when all they really needed to do was eat less of that particular food.

I realize that her comment on allergy tests may be "blasphemy" for those who have successfully eliminated problem foods with this method. I am still a "newbie" on SCD, but understand that people can take non-dairy acidophilus if they have an issue. Pg 69 of the book says to permanently eliminate any food that is known to cause a severe allergic reaction. But "if in the past, an allowable food did not agree with you, eliminate it for a short time (about one week) and try it again in small amounts. If, after a week of eliminating it, a food continues to cause problems, do not include it in the diet."

Again, my previous efforts to "eliminate" dairy may have backfired due to the "MULTIPLE - Intolerant" issue, and simply not having the complete picture.

So... Prior to going to the highest bidder... I am gonna try the yogurt thing, give the SCD a fighting chance, then let you know the result (good or bad). If I don't get better, I promise I will eliminate all dairy (along with the others that are gone, gluten, grains, sugars, etc)

[tex]

Bob,

Interesting post, (to say the least). LOL. I've never studied the BTVC philosoply, but based on what you wrote, apparently a part of that concept is that food sensitivities are a matter of degree, and/or a matter of time.

I have to admit that seems to be true for some of us, at least. Except for gluten, (which I've never experimented with), I was almost always able to eat small amounts of most of my intolerances without serious consequences. The issue is, though, if significant amounts of a food item can cause a serious reaction, is it not logical to conclude that smaller amounts will case some degree of intestinal distress -- just not enough to trigger a full blown reaction? The question is, is this acceptable performance, when we're trying to heal our gut?

There are many here, (Jean included), who are super sensitive to the tiniest amounts of her primary intolerances. For them, Lucy Rosset's claim is entirely false. In my own case, I would have to say that her statement is valid for me.

The BTVC position suggests that food intolerances are temporary, presumably based on dysbiosis, (regarding Lucy's statement about people unnecessarily restricting their diet). I will agree that for some of us, for some foods, that may be true, since many of us can now eat foods that we couldn't tolerate at the height of our sensitivities. However, (and this is a big however), it took me over 3 years on the diet, (almost 4, actually), before I could resume eating those foods.

What if I had never stopped eating them? Would my gut have recovered? I doubt it. But even if it somehow still managed to heal, I certainly wouldn't have wanted to be sick, and experience regular food reactions for 3 or 4 more years. Call me a wimp, but the 2 or 3 years that I was severely ill before starting the diet, plus the sporadic reactions over the first year of the diet, were more than enough to satisfy my craving for uncontrollable diarrhea, nausea, body aches, migraines, rheumatoid arthritis, and all the other fringe benefits of the reactions that I experienced.

That said, we learn by experimenting, (after all, that's how most of us find a program that works for us), so I am anxious to learn whether or not you have any success with your plan. I truly hope that you can find relief with the plan, and if it fails, I hope that you experience a minimum amount of misery in the process. With MC, we need all the treatment options that we can find, and the only way to verify the value of any treatment, is to give it a fair try.

So, , and please keep us informed.

Tex

[grannyh]

Welcome, Bob!

I tried Asacol and it made me sick as a dog. Entocort worked for me but I had to take three pills a day.. never was able to reduce the dosage and have have a "normal poop". I was on Entocort for 7 months and doing very well....

In May I hurt my back and the doc put me on the wrong steroid meds.. had a massive overdose, heart and blood pressure problems and a couple of trips to the hospital because of the steroids.. the upside is.. my colitis went into remission... LOL The downside is my blood pressure has to be controlled with drugs now.. the blood pressure drugs are way cheaper than Entocort tho:)
grannyh

[bobh]

Tex wrote: I've never studied the BTVC philosophy, but based on what you wrote, apparently a part of that concept is that food sensitivities are a matter of degree, and/or a matter of time.

Well, I am no expert at this. The quote I posted from the BTVC book did have MD references (theoretical) essentially saying that in some cases the "sensitivities" are the result of bacterial toxins. I think she is referring to people that eat grains that they cannot fully digest, and the overgrowth of the bad bacteria, toxins, etc.

For me, I just know that "once upon a time" I wasn't sensitive to restaurant food, could eat just about anything, and had normal BM. Things got worse, and worse, and ultimately found a local GI who diagnosed the MC in 2004. Dunno if it's a matter of shades of gray on the intolerances - I am looking at it more from the standpoint of "the chicken or the egg". If some of the sensitivities can be "de-fused" by stopping the bacterial toxins, then perhaps the sensitivities are not "permanent".

Of course I am sort of preaching to the choir here, as most of you are much further along in research, and have already eliminated most grains, some of you are on more restrictive Paleo diets, and so on. I am rather new to this, having come from a school of "there is no medical cure for this, and the band-aids aren't working anymore".

Tex says: Except for gluten, (which I've never experimented with), I was almost always able to eat small amounts of most of my intolerances without serious consequences.

Yeah, I don't fool around with gluten ever since the 2004 Dr. Fine lab result - and of course with my current "fad" (Specific Carbo Diet - Breaking the Vicious Cycle by Elaine G.) there is no gluten (or any grains).

In closing, I think all of what I am saying aligns with Dr. Fine's work. The quote from BTVC does mention inherited traits (genetic) as part of the reason for immune response to these foods that we become sensitive to. I think that is a vital part of the puzzle, and an exciting part of the solution. Some people can eat McDonald's, Chinese food full of MSG, and have normal BM, not even a headache. They could eat carbo's for decades and never develop the issues I am talking about, so I realize I have genetic issues - and just glad to be alive... You have to dance with the one that brought you. We are stuck with the body we currently have.

[Lucy]

Yep, Bob, and they could, and are, ending up with diabetes, heart attacks, and cancer. In a way, I think we're fortunate in that we learn so much about diets and what's in our foods once we have to study them so much.

Yours, Luce

[Jean]

Bob,

Wayne said everything I would have, only more elegantly. Keep us posted. We all learn from one another here.

Love, Jean

[bobh]

Thanks for your support folks. I ate 16 oz. of my first "homemade yogurt" a couple hours ago and haven't had a negative reaction so far... To help you understand why I would do this, despite a lab test saying I am milk (casein) intolerant, here's the story:

I am 50 years old. I had a bad viral infection when I was 13 (mono, a member of the herpes family). Another bad viral infection at age 30, the lab said it was Epstein Barr virus. In bed for 2 weeks, and never "fully" recovered. A classic case of Chronic Fatigue Syndrome.

At that time, popular books such as "yeast syndrome" advocated killing off the Candida, and supplementing acidophilus to replace the "good bacteria". The recommended diets had a lot of BROWN RICE, and my digestive grief BEGAN after a few years on that diet.

The more I tried to stop the "D", the worse it got, for 15 years. The science behind the "Vicious Cycle" makes sense to me - it seems to explain what happened. The body was not able to digest complex carbos. Somehow a "dysbiosis" occurred, and the "vicious cycle began" and I couldn't get out of it. I think many of you have broken the cycle already, but I only stopped eating all grains about 3 1/2 weeks ago.

A big part of her diet is avoiding complex carbs, but the other 1/2 of it is establishing good flora with yogurt that has been fermented 24 hours (so that the bacteria "eat up" the lactose - which is a double molecule sugar and theoretically not able to be digested by those who are experiencing the "vicious cycle"). I had been taking acidophilus for years, never noticed any improvement at all (while also eating brown rice, and for many of those years having corn and wheat). So now, I am looking at the yogurt thing as a "new" program.

People with severe allergic issues are to take dairy-free supplements for acidophilus. But I am "wagering" that my sensitivity is "the result of" dysbiosis, and can be "reversed". If it works, I will get a follow up lab test at Dr. Fine's a year from now, and see if there are antibodies to Casein showing up. If anyone wants to know more about the science behind the diet, you could follow this link: http://www.breakingtheviciouscycle.info ... _diet2.htm

[tex]

Bob,

FWIW, I can't see a thing wrong with your logic as to how your problems developed over the years. The only possible hitch that I can see, is the possibility that the inflammation may never subside, if you are indeed sensitive to casein. IOW, you will be trading one problem, (inflammation due to bacterial overgrowth), for another, (inflammation due to casein intolerance).

Still, I suppose it's not impossible for the body to overcome a bacterial overgrowth problem, while dealing with another source of inflammation. This complicating factor may make it impossible to tell/if when you are making any progress with the original issue. I suppose you can try the program for an appropriate amount of time, and then stop it long enough to see if your system can functon normally. It shouldn't take more than a few days for the worst part of inflammation due to casein to subside.

It's a little late to bring this up, but some sources maintain that yogurt is not a good choice for repopulating the colon with the proper beneficial bacteria. Here's what they say:

Both kefir and yogurt are cultured milk products...

...but they contain different types of beneficial bacteria. Yogurt contains transient beneficial bacteria that keep the digestive system clean and provide food for the friendly bacteria that reside there. But kefir can actually colonize the intestinal tract, a feat that yogurt cannot match.

This is from a kefir promotional site, (naturally):

http://www.kefir.net/kefiryogurt.htm

Anyway, you might want to consider this, if you're going to try to cure a presumed bacterial overgrowth problem with a fermented milk product. It does have certain advantages over yogurt, not the least of which is being easier to digest. There's more information about it on the home page link, if you want to read more about it.

Tex

[bobh]

Interesting site. They also say this:

What if I'm lactose intolerant, don't do dairy or don't digest milk products well - is kefir right for me? The beneficial yeast and friendly bacteria in the kefir culture consume most of the lactose (or milk sugar). Eat kefir on an empty stomach first thing in the morning before (or for) breakfast and you'll be delighted to find it can be easily digested -- as numerous people who have been lactose intolerant for years have discovered.

Of course, most people don't have to keep McBathroom's on their radar screen as they drive down the road, and these issues aren't as critical for them.

The kefir.net site says: "But kefir can actually colonize the intestinal tract, a feat that yogurt cannot match."

That is the first time I have heard that - and it seems to violate so many other sources of info. I am a mere mortal, without a lot of credentials. The author of BTVC, Elaine Gottschall, is a biochemist who had an 8 year old daughter with Crohn's - about to get her colon removed - when they discovered the research of Dr. Haas in the 1960's. The daughter fully recovered without surgery, Elaine devoted her life to researching and publicizing her findings. Here's what she says about yogurt on her web site:

The SCD™ corrects the balance of bacteria types in the gut by eliminating the food supply of the undesirable types and so starves them out. Introducing SCD™ yoghurt aids this process as it repopulates the gut with beneficial bacteria which further displaces the harmful bacterial. http://www.breakingtheviciouscycle.info ... rtance.htm

She does talk about kefir here: http://www.breakingtheviciouscycle.info ... /kefir.htm
Of course, I may be retracting all this if it doesn't work for me... but so far it has been 6 hours after trying the yogurt and I'm not having an adverse reaction. Her site does recommend beginning slowly on the yogurt:

Many find huge improvement to their condition when they start taking the yoghurt, others can have problems at first. After the starter diet has been completed the yoghurt can be tried by introducing it very slowly. Try a teaspoon the first day and watch for any reaction, if all is well, try two the second day, gradually increase it each day. If you have a reaction to it then there may not have been enough healing yet and it may be best to leave it for now and try again later. http://www.breakingtheviciouscycle.info ... r_diet.htm

[tex]

Bob,

What the kefir site says about lactose intolerance is true. The bacteria in either yogurt or kefir should digest all the lactose, in the product, so lactose intolerant people shouldn't have a problem with it, (unless they also happen to be casein intolerant).

If it is true that yogurt, (along with the SCD), will starve out the undesirable species of bacteria in the GI tract, then I don't have a problem with the SCD claim that yogurt will be beneficial. I'm not sure that yogurt will actually repopulate the gut with desirable bacteria, however. My understanding is that what it does is to provide an environment where beneficial bacteria thrive, and undesirable bacteria do not.

IOW, there has to be a source of "good" bacteria already in residence, or they will have to be reintroduced, in order for them to repopulate and thrive. The queston is what the yogurt actually carries. Presumably it carries feedstock for beneficial bacteria that normally populate the colon, but not the actual bacteria themselves. It does carry live bacteria, of course, but these are not the ones that you need to populate your gut. -- they simply provide nourishment for the ones that you need. My understanding is that some of the desirable "good" bacteria can be included, if it is properly cultured to include strains such as L. acidophilus, Lactobacillus casei, and Bifidobacterium, during the fermentation process. This will effectively convert the yogurt to a probiotic.

This may all be a moot point, of course, as there is a good chance that the "good" bacteria may be present all around us, and we may accidentally ingest them every day, without even being aware of them, for all I know. In that case, there would be no reason why the SCD diet wouldn't do what they say it will. Obviously it must work for some people, or it wouldn't still be around. It just isn't vary popular among MCers, due to some of the diet recomendations that don't work for many of us.

Tex