15 Yrs MC without relief - should I consider Meds?

bobh · Post by **bobh** » Sun Aug 13, 2006 5:32 pm

Thanks for taking the time - I am learning here. Just for info, these are the strains recommended in making yogurt for the SCD:

The bacteria that we should have in our yoghurt starters are:

Lactobacillus bulgaricus
Streptococcus thermophilus.
Lactobacillus acidophilus (optional)

In fact, without the first two strains above we can't really call it yoghurt. http://www.breakingtheviciouscycle.info ... arters.htm

Tex, help me understand this point:

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 recommendations that don't work for many of us.

Which aspects haven't worked for people with MC? I know I have missed out on a lot of "water under the bridge" because I am new to this site. This is the opportunity everyone has been waiting for - let's air out the negatives you may have had with this SCD concept, and if you have tried it or not.

I am new to it, and will be the first to tell you I had grief until I rolled up my sleeves and "got the almond flour" that she talks about so much in the recipes. I was amazed at how well it replaces wheat in making muffins - because previously I didn't do well with some of the gluten free flours. I got my almond flour here: http://www.lucyskitchenshop.com/flour.html and she says to cook at a lower temp (like about 310 F) for 20-25 minutes. (she also has yogurt "freeze dried" starters, with the above-mentioned strains).

Post by **tex** » Sun Aug 13, 2006 9:18 pm

bobh wrote:Which aspects haven't worked for people with MC? I know I have missed out on a lot of "water under the bridge" because I am new to this site. This is the opportunity everyone has been waiting for - let's air out the negatives you may have had with this SCD concept, and if you have tried it or not.

Basically, the problem is that the SCD is not a gluten free diet, (nor is it a casein free diet). It can be transformed into a GF, CF diet, but then, so can virtually any other diet. Looking back through the experiences of the membership of this group, I can recall one member who achieved success with the SCD, and two or three others who tried it, without success.

This is not the opportunity everyone has been waiting for, nor are we here to "air out" negatives about any particular treatment program. We're here to try to find solutions that work, with a minimum of misery. We share our experiences, and we all learn from that sharing.

Everyone works out a treatment program that suits their individual lifestyle, usually by trial and error. Whether or not remission is achieved, or how much time is spent in the process, depends on the treatment choices made.

We all hope that your program works as well as you believe it will.

Tex

bobh · Post by **bobh** » Sun Aug 13, 2006 11:24 pm

This is a great group! Really like it. I had been on a soapbox praising the SCD for a while, so I was kind of joking, inviting the other opinions. I suppose you could say I am "still in the honeymoon phase" on the Specific Carbohydrate diet.

I quit gluten after Dr. Fine's lab test diagnosed me in 2004 - and I became aware of how HARD it is to completely eliminate gluten. The food industry sticks gluten EVERYWHERE, ketchup, etc., and it takes constant vigilance to avoid gluten in this world.

With that said, the words "gluten free" is quite a statement - but I truly think the SCD is a gluten free program. The author states it on pg 43 of the book:

It is truly a gluten-free diet, eliminating all grains which contain gluten or gluten-like proteins while also recognizing the limitations of the injured intestinal surface. For those people who are not satisfied with their progress on the gluten-free diet, the specific carbohydrate diet offers them the opportunity to become healthy.

That quote is toward the end of a chapter called "the celiac story", which is reproduced almost in its entirety at this link: http://www.breakingtheviciouscycle.info ... isease.htm It is really an interesting read, if one is fighting that battle.

To get an idea of how focused the author was on the celiac issue, this is another link on how it relates to children & autism: http://www.breakingtheviciouscycle.info ... exerpt.htm

Post by **tex** » Mon Aug 14, 2006 12:03 am

Well, shoot, Bob,

I have to apologize. I checked your links, and checked out the lists of allowed and disallowed foods for the SCD on this site:

http://www.healingcrow.com/dietsmain/scd/scd.html

and it's obvious that the SCD is indeed GF. Somehow, a couple of years ago, when we were discussing the SCD, and it's relationship to MC, I apparently got sidetracked by the casein problem with the diet, and somehow confused that with a gluten issue.

Please forgive me for causing you to waste all that time posting information to try to make me see the light. LOL. I had obviously jumped the track before I even got out of the station, and I appreciate your getting me back on track.

All I can say is, it's a good thing that crow is gluten free.

Tex

Matthew · Post by **Matthew** » Mon Aug 14, 2006 12:10 am

Wayne
I have to disagree with you on the Specific Carbohydrate not being gluten free. Since you have said this in the past I just assumed it was a slip of the tongue . Maybe you have a different edition but my book says on page 54

NOT PERMITTED- Grains such as wheat, barley, corn, rye, oats, rice, buckwheat, millet, triticale, bulgur, spelt (No cereals, bread or flour made from these)
Potatoes(white or sweet) yams, parsnips, okra, chickpeas, bean sprouts, soybeans, mungbeans, fava beans, garbanzo beans, turnips.

Amaranth flour , quinoa flour, or any newly -introduced grain substitutes such as cottonseed.

Wheat Germ. Seaweeds

Caution : Many recipes from other countries , such as cous-cous, contain grain -like ingredients which must be avoided .

Unless I have missed something, that is a gluten free diet and a good start on the paleo diet. Besides a lot of other things that many of us have found to be true. Feel free to clue me in if I have missed something.

The specific Carbohydrate Diet was my first clue that I could turn things around by what I was eating . If Bob can build on it the way I have then more power to him. Yes I had to eliminate the dairy in that I need to be casien free and found that all the nuts were not the best thing for me but many, many of the vegetable recommendations are right on. Polly’s root vegetables are right in line with the SCD recommendations. I built my diet on the concepts even if the specifics were not perfect. Just as we all have.

Perhaps you have a different edition of the book that states it differently or I have misread it or read more into it than is meant.

Love

Matthew

harvest_table · Post by **harvest_table** » Mon Aug 14, 2006 12:16 am

Historically diagnosis and treatment of Celiac-Sprue related to 'gliadin' (also known as gluten) sensitivity. Gliadin is found in wheat, rye, barley, oats, and foods containing these grains (including beer, grain based alcohols, mayonnaise, grain vinegar, etc). Some Celiacs did not respond to elimination of gluten/gliadin. In 1951 Drs. Sidney V. and Merrill P. Haas published Management of Celiac Disease documenting treatment and cure of celiac and cystic fibrosis of the pancreas with a carbohydrate limiting diet introduced as the 'Specific Carbohydrate Diet'. More information about this diet can be gotten from Breaking the Vicious Cycle E Gottschall, BA, MSc. Kirkton Press Ltd. Baltimore, Ontario, Canada 1998.

In many cases cited in the book, elimination of certain carbohydrates 'cured' diagnosed Celiacs after one year and they were able to return to eating gluten containing foods. In hindsight many of the foods eliminated in this plan are high lectin foods known to be associated with gut and systemic inflammatory reactions. Celiac-Sprue is a genetic disorder treated by elimination of offending foods. The response of some to the specific carbohydrate elimination diet would mean that the patients who responded did not have classical gluten intolerance, Celiac-Sprue, which requires life long elimination of gluten/gliadin. It suggests that other lectins may cause similar symptoms and overlapping diagnostic and treatment difficulties.

Thought this was interesting.

Love,
Joanna

Post by **tex** » Mon Aug 14, 2006 12:34 am

Matthew,

You wrote:

Feel free to clue me in if I have missed something.

LOL. You missed my post that I snuck in just ahead of yours. Hahahahaha.

Otherwise, you're quite correct, of course.

Love,
Tex

Joanna, that is interesting. I didn't realize that lectins could cause villous atrophy.

Jean · Post by **Jean** » Mon Aug 14, 2006 3:46 am

OK Bob,

You asked, so here's my two cents. The SCD is more restrictive than I have to be. I can eat root veggies and legumes without any problem. I strive to only eliminate the things I absolutely have to because my diet is so limited already.

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.

This quote from Lucy made me see red. It is so off base for me, and there's a good chance it's sending you in the wrong direction. Too much of a food for me is a molecule. A true intolerance has to be completely avoided. I once found a quarter inch piece of noodle in my soup at a restaurant. I took it out and finished the soup and was in bed for two days. To me it sounds like she's saying if a patient doesn't respond to her diet it's their fault because they are eating too much of a food.

How can she dismiss a test (with good science to back it up) that says you are casein intolerant? Dr. Fine's tests have been right on for everyone here. I don't think you will get better until you eliminate dairy.

As to the good versus bad bacteria, I was unable to take any probiotic. But I found as my gut healed, the problem went away. Was it because my gut naturally repopulated itself with good bacteria? Or was it because the bacteria wasn't the problem? No real way to know.

What worked for me was completely eliminating gluten, dairy, corn, soy and rice. Some other foods may irritate my gut, like citrus and nuts, but they are not true intolerances.

Now, let me climb down off of my soap box and say that I hope I haven't offended you. I will definitely keep an open mind and will follow your progress with great interest. We all have to work out what's best for each of us and there's always something new to learn.

Love, Jean

bobh · Post by **bobh** » Mon Aug 14, 2006 10:01 am

Wow, you folks are alive! We definitely have a pulse here! Great group.

Tex, I was confused myself the other day on various aspects of dairy (casein vs lactose), so no apology needed. In fact, I forgot that I even was tested for casein till you folks reminded me that it might have been part of Dr. Fine's lab test - and to ask them to send it to me again...

Joanna, that quote is an interesting part of the celiac story. Years of research appear to have been abandoned after a single report that focused on 'gliadin' (also known as gluten) sensitivity. Some Celiacs did not respond to elimination of gluten/gliadin, the SCD believes in the original work of 1951 Drs. Sidney V. and Merrill P. Haas saying that relief will come if they eliminate ALL grains.

Jean, you make an excellent point here:

Jean says: A true intolerance has to be completely avoided. I once found a quarter inch piece of noodle in my soup at a restaurant. I took it out and finished the soup and was in bed for two days.

I suppose I screwed up by only posting Lucy's response, rather than including my question to her (I tend to be overly-long, and try to resist...) So here's what I had sent to Lucy Rosset:

> The lab test I had done a couple years ago showed some antibodies to
> dairy,
> and mentioned casein. I think I am going to do the yogurt anyway. Screw
> it. If I do OK, and the bad bacteria overgrowth gets under control, then
> maybe the "intolerance" will disappear. I will be alert for "reactions"
> to
> the yogurt, but I have eaten it from stores (before discovering SCD) and
> it
> didn't kill me, or even stand out as different from my usual bad
> digestion.
>
> Suppose I was just curious if you have heard of this before, people
> allegedly intolerant of dairy, doing it anyway...
>
> Thanks, Bob H (3 weeks into SCD)

So you see, I had explained to her that I was getting a lab result showing an intolerance, yet I hadn't noticed a "severe" reaction to that food.

Pg 69 of the SCD book would basically tell me NOT TO EAT a food that was known to cause a severe reaction:

If a food specified in the diet is known to cause an anaphylactic reaction (severe allergic reaction) eliminate it permanently from the diet. If, in the past, an allowable food did not agree with you, eliminate it for a short tine (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.

Previously in this thread, I mentioned that perhaps I DO HAVE PROBLEMS with casein, but due to the Multiple Intolerances, and chaos from other irritants that had not yet been eliminated (rice, for me), I was unable to see an improvement when casein had been eliminated.

Believe me, if I don't see an improvement in a couple weeks I will eliminate casein. Perhaps things will clear up, as many of the other MI offenders have also been removed.

So in closing, I think the "spirit" of Lucy's comment was along the lines of: people who have bowel trouble, who have been victim of the "vicious cycle" (eating sugar and complex carbos -> dysbiosis -> rapid transit time -> further difficulty digesting complex carbos) will start to manifest all kinds of intolerances. I am referring to something that could be reversible, as opposed to a "life-threatening" type of allergic reaction.

mle_ii · Post by **mle_ii** » Mon Aug 14, 2006 3:09 pm

Jean wrote:-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.

Hi Jean, This isn't AIDs but here's a recent article on an Immune suppressor helping out with IBD:
http://www.ncbi.nlm.nih.gov/entrez/quer ... s=16901384

Thanks,
Mike

bobh · Post by **bobh** » Mon Aug 14, 2006 3:13 pm

Jean wrote: The SCD is more restrictive than I have to be. I can eat root veggies and legumes without any problem.

Hi Jean, just wanted to clarify here - some of those are OK on the SCD, but you are right, there are restrictions within those categories.

I suppose one of the most common root vegetables would be the potato, and yeah, that is one of the "complex carbos" that the SCD says people with digestive issues (commonly) cannot fully digest. But cooked carrots are OK

Wikipedia defines The carrot (Daucus carota) is a root vegetable, usually orange or white in color with a woody texture.

The basic "intro diet" on SCD has cooked carrots in a chicken soup.

SCD says this about legumes: Double sugar molecules (disaccharides: lactose, sucrose, maltose and isomaltose) and starches (polysaccharides) are primarily avoided on the diet. Some starches have been shown to be tolerated, particularly those in the legume family (dried beans, lentils and split peas only). However, they must be soaked for 10-12 hours prior to cooking, and the water discarded since it will contain other sugars which are indigestible, but which are removed in the soaking process. Small amounts of legumes may only be added to the diet after about three months. The starches in all grains, corn, and potatoes must be strictly avoided. Corn syrup is also excluded since it contains a mixture of 'short-chain' starches.

That quote can be found toward the end of this link: http://www.breakingtheviciouscycle.info ... _diet2.htm and that is also a nice, concise review of the theory of the SCD.

Personally, I get "gas city" with legumes if they aren't soaked. Ultimately, the author expected people to modify their diet based on individual tolerances. The key for someone attempting her theory, is to restrict those things we cannot digest (broad brush description for those with inflammatory bowel issues would be: all grains, sugars other than single molecule sugars) and support the good guys in the digestive system (yogurt, or alternatives if the individual doesn't tolerate dairy.)

Jean · Post by **Jean** » Mon Aug 14, 2006 4:39 pm

Bob,

I see what you're talking about. It seems to me that our problem is proteins, not sugars. At least that's the premise I've been working on. Personally, I don't have any trouble with sugars now that my gut is healed. I hardly eat any simple sugar, because it tastes so sweet to me now that I've avoided it for so long.

Gotta run, will write more later.

Love, Jean

mle_ii · Post by **mle_ii** » Mon Aug 14, 2006 5:03 pm

Jean wrote:Bob,

I see what you're talking about. It seems to me that our problem is proteins, not sugars. At least that's the premise I've been working on. Personally, I don't have any trouble with sugars now that my gut is healed. I hardly eat any simple sugar, because it tastes so sweet to me now that I've avoided it for so long.

Gotta run, will write more later.

Love, Jean

I agree that the main problem is proteins, but later it can be sugars. If damage is done because of the proteins (or even some other mechanisms) then the sugars can cause problems.

This is the reason that once some folks that have issues with proteins who stop eating the proteins and heal can eat those secondary problem foods.

bobh · Post by **bobh** » Mon Aug 14, 2006 5:09 pm

Jean says: now that my gut is healed.

Wow, wish I could say that. Your research has paid off! Well done.

I am still "searching" because I haven't had a formed BM in over 1/2 a year.

Jean said: It seems to me that our problem is proteins, not sugars. At least that's the premise I've been working on.

Well, the proof is in your healing! I'm not there yet. For the record, my current SCD focus does not restrict proteins (unless an individual has a known severe allergic issue - like the casein thing we touched on earlier). I am new to the SCD, and if it fails to work, I will be the first to admit it, and I will do it here.

Post by **tex** » Mon Aug 14, 2006 11:21 pm

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).

Mike,

All the corticosteroids used to treat IBDs, (budesonide, prednisolone, etc.), are immune system suppressors.

Tex