Specific Carbohydrate Diet (SCD)

[gadgetgirl]

There is a vet who has written extensively about these issues, he raises the issue of soy and how it has been introduced, he suggests it will lead to problems. I can't recall his name right now, does this ring a bell lfor anyone?

Are you thinking of Dogtor J? Open Original Shared Link

[rinne]

That would be him. Thanks much.

[AliB]

My intolerances to the major proteins of dairy, eggs, soy and gluten were confirmed by 3 different labs using 3 different testing styles. I was told directly by two of the labs that they were likely permanent genetically-supported intolerances. I haven't been given the impression by them that any of these are reversible. I do, however, also have several ELISA foods that I may be able to reverse by rotation once the gut heals. But they aren't nearly as missed as these useful protein foods.

I cannot seem to add something back in at a later date as an experiment because my symptoms are delayed and so difficult to pinpoint. If I ever did actually get beyond my health issues, I'm afraid I would be highly reluctant to do ANYTHING to disrupt it, no matter how much I dearly miss those foods. I would never wish for instantaneous D, but there are times when it would sure come in handy for knowing exactly when you have been glutened.

I think the SCD or Paleo diets probably hold promise for me, but without being able to use many of their allowable foods, it will also be considerably more limiting.

Gluten is a given, but does anyone else successfully use these diet plans without the equally useful proteins of dairy and eggs in particular?

I like the use of the word 'likely', it's a bit like 'probably'. It's a kind of 'hedging the bets' thing.

This is only my opinion, but I think that sometimes the 'genetic' thing can be a bit of a red herring. After all, there are a lot of people who have the 'genetic' markers for Celiac yet who never develop the disease, and there are others who display all the normal symptoms yet don't apparently have the markers. Genetic 'markers' can be found for just about anything if we look hard enough - genetics often seems to be such a 'might be' science.

This is only a little article but very telling - it states that lifestyle is what is affecting the health of aborigines, not genetics and that a genetic study is not necessary. You can bet your bottom dollar though that if they did genetic studies they would find that some percentage of the population carried the same gene. But what if that gene actually represented something completely different but was just assumed to be associated with the diabetes simply because some diabetics carry the same marker? Perhaps that gene might actually represent the fact that they all share the same ancestor 10 generations back, or they all have a double-jointed left thumb.

Open Original Shared Link

I don't deny that there may be some truth in some of it somewhere, but I also think that it can generate an inadvertent cop-out situation - 'I can't do anything about it because it is in my genetic make-up', like it is your sealed fate over which you have no control. I don't buy that one! Why genetic markers for some diseases yet not for others? What about those who have recovered from serious life-threatening 'genetic' diseases and gone on to live active lives? There are just too many unanswered questions for me to be that confident about it all.

Not only that but after my own experience of the abilities of the so-called 'experts' to diagnose and treat my health issues, and the resulting damage they have caused, I find it difficult to put faith in anything they say. They aren't interested in making me better - just in patching me up with the latest drug they can 'sell'. The last one led to the collapse of my digestion!

Sorry - I got carried away there - the whole 'experts' thing just makes me so mad. These days I only trust in one expert - me.

Have you always been intolerant of eggs, dairy, soy and gluten? These intolerances generally only become intolerances when the gut damage reaches a point where the body can't cope with the digestion of those foods. Leaky gut can also allow the protein molecules into the bloodstream where they shouldn't be and that can set up different reactions.

Other than the yogurt many of us don't do dairy at all - even the legal cheeses. Some make the yogurt with coconut milk or almond milk instead. Interestingly though, quite a few who are very dairy intolerant can actually cope with the yogurt ok because the long fermentation of the 24-hour yogurt not only digests virtually all of the lactose but apparently also changes the structure of the casein too making it digestible.

Some have found that they don't cope with yogurt at all initially and just have probiotics instead but you have to make sure they are dairy-free in that case.

Can you cope with raw food? I am trying to introduce a lot more of that into my diet now as my body seems to really benefit from the enzymes and nutrients.

[pele]

I think the SCD or Paleo diets probably hold promise for me, but without being able to use many of their allowable foods, it will also be considerably more limiting.

Gluten is a given, but does anyone else successfully use these diet plans without the equally useful proteins of dairy and eggs in particular?

I say go for it. Soy isn't part of the SCD anyway, and you can do it without dairy, eggs or almonds. I only figured out I am dairy intolerant after about 6 weeks on the diet, and I have been happily dairy free ever since. I would miss eggs, but if I couldn't eat them, I'd have beef or chicken for breakfast. If you can eat peanuts, coconut, hazelnuts or pecans, you can still make yummy uncooked treats by mixing ground nuts and honey with a little flavoring. The diet is mostly vegetables, fruit and meat. The baked goods are optional.

[pele]

Pells, sorry to hear about your stressful situation. I hope things resolve ok for you.

-

I am being confined to barracks. Apparently I am posting too many comments about the SCD so, as I just can't keep it to myself I will have to limit my discussions about it to this thread for the moment.

I'm fine --the stress was self-induced, the kind you get when you try to change something in your life and it doesn't work out. So back to the status-quo for now.

Ali--you are naughty, but we are happy and lucky to have you here. Now I don't have to search all over the board for your posts.

[pele]

That may be true for 82% of celiacs but for the other 18% not true at all, according to the study above.

Now it may be that of the 18% who don't get well by avoiding gluten some may not get well on the SCD either, but I really think that information needs to be out there. I remember reading about refractory sprue and feeling so sad to think someone would never heal and now it makes total sense to me, of course they wouldn't heal because they were still being injured.

When I go to the local support group meetings, there are always people there who would tell you they are in that 82%, but are still sick. So I wonder. It is discouraging to read that some people who eat gluten until the fifth decade of life or longer never really heal. Even though I feel better and better, I'd guess that a lot of damage was done that won't heal--like tinnitis, joint degeneration, endocrine system malfunction, liver damage. However, I've been gluten-free for less than 2 years and SCD for only 9 1/2 months. It'll be interesting to see where I'm at 5 years from now. I was on a trip in 2007 and stopped in at the Mariposa Bakery in Oakland, CA, a woman came in and said it took her 4 years of gluten-free to really feel well.

[mftnchn]

My intolerances to the major proteins of dairy, eggs, soy and gluten were confirmed by 3 different labs ...

I cannot seem to add something back in at a later date as an experiment because my symptoms are delayed and so difficult to pinpoint.

I think the SCD or Paleo diets probably hold promise for me, but without being able to use many of their allowable foods, it will also be considerably more limiting.

Gluten is a given, but does anyone else successfully use these diet plans without the equally useful proteins of dairy and eggs in particular?

Welcome Gentleheart!

Here's my summary of the diet: Restrict all disaccharides and polysaccharides (gut damage reduces digestive enzyme production--we can't break them down; this wreaks havoc on the gut flora and results in continued damaging in spite of gluten-free diet). A legal/illegal list is available online at the BTVC website. Second, start with the most easily digested food and gradually add others in so that the gut can heal and you can absorb as much as you can. Third, replace the good bacteria in the gut with specific probiotics (SCD safe ones). Fourth, any food that you don't tolerate, stop eating for awhile, and then retry in the future.

Many of the autistic kids that are on SCD cannot have dairy or eggs (soy and gluten are not allowed on SCD), at least initially. So there is a lot of information on the www.pecanbread.com site about how to manage. Almonds are an "advanced" food as well, so many get along well on the intro level, though it might get a little boring! There are recipes using other nuts. I have a cashew bread recipe I saved, haven't tried it yet though.

Some on SCD who have other conditions like ulcerative colities, crohns, etc. may have to stay on a restricted form of the diet, according to what I have read on another SCD forum. But many do improve and are able to add foods back in. You could have a lifelong allergy to the foods you mention. But you could also have intolerances that are secondary to gut damage.

You might try to find duck eggs, they are more expensive but at least you'd have an alternative.

I have a hard time pinpointing symptoms as well. One thing I found though, after being on SCD awhile, it cleared out a lot of the confusion and my reactions are clearer.

[mftnchn]

Ali--you are naughty, but we are happy and lucky to have you here. Now I don't have to search all over the board for your posts.

LOL! Yes, we are happy and lucky...and the many people across the board that have learned about the SCD from your posts are very lucky too! I think it is too bad you aren't allowed to continue to mention SCD elsewhere.

[AliB]

Thanks 'guys' - nice to know I am wanted somewhere!

[rinne]

When I go to the local support group meetings, there are always people there who would tell you they are in that 82%, but are still sick. So I wonder. It is discouraging to read that some people who eat gluten until the fifth decade of life or longer never really heal. Even though I feel better and better, I'd guess that a lot of damage was done that won't heal--like tinnitis, joint degeneration, endocrine system malfunction, liver damage. However, I've been gluten-free for less than 2 years and SCD for only 9 1/2 months. It'll be interesting to see where I'm at 5 years from now. I was on a trip in 2007 and stopped in at the Mariposa Bakery in Oakland, CA, a woman came in and said it took her 4 years of gluten-free to really feel well.

I get that it takes time and I understand why people are reluctant to look at giving up even more. I was there, I spent 2 1/2 years eating gluten and dairy free and didn't see the improvements I hoped for.

I am very glad this thread is here, thanks Ali and to all, I think we should make an effort to have one thread on the SCD on the active topics page at all times.

[AliB]

Gadgetgirl and Rinne, thanks so much for posting the link to Dogtor J's site. What a fantastic resource. I had not come across that one. What sense he speaks! I am wending my way through 'The Answer' and what an answer it is.

It's all out there if we look for it hard enough...............

[rinne]

It is an interesting site, well worth research time. His thinking is consistent with the SCD and yet adds another layer into the mix.

I hadn't really thought about it much but re-reading what Docto J writes about MSG really hit home. I recall realizing it was MSG I was reacting to, I felt like my skin was crawling on the inside, horrible. The headaches were no fun either.

[rinne]

Actually I should have said consistent with the version of the SCD I am doing.

[GermanMia]

Ali, I agree with the others about you and your posts

Just one of these days I saw a most interesting report about recent studies concerning the influence of food and nutrition on dna damage. Actually they found out that you can put off functions of your dna by malnutrition so that you develop diseases, intolerances, allergies etc. This dna damage even can lead to genetic disorders - your children can inherit your allergies, intolerances and diseases. Or you can have inherited them from your parents. BUT - and that's the interesting part of it - if you feed yourself according to what is good for your body, i. e. avoid anything that's doing further damage and take in everything your body needs to construct healthy cells, those dna damages can be made undone.

I'm afraid that report is in German but if any one of you speaks German this is the link:

www.3sat.de/3sat.php?Open Original Shared Link

[AliB]

Yes, and as Dogtor J says - viruses can affect genes. Apparently that is what they do. So the fact that we have a genetic marker for something may indicate not that we have inherited it, but that it has been acquired at some point.

The key is to give the immune system the tools to be able to control and overpower these things. Weak immune systems allow them to take over and the trick is to reverse that situation. Strong immune systems make strong people.

I thought the section in his article about epidemics was very interesting too. He equates them with the travel of wheat and dairy across continents and undoubtedly that would have had an impact, but I wonder if it was as much due to the wheat and dairy undermining the immune system so that people then became much more susceptible to viruses (viri?) than they would have previously.

It is an interesting concept and one that makes more than a little sense.

That is an interesting article Mia about the genome switches - a bit annoying that it was not accompanied by links to the actual research that was quoted in the articles and the Google translation left a bit to be desired but it was very interesting anyway.

There seems to be some excitement about the discovery that it seems that genes can be switched on or off depending on factors within our diet. I reckon that makes sense too!

[chatycady]

If you're not getting better on the gluten free diet you may want to read the following information. Please don't get hung up on the word "cure". There is no cure for celiac disease, but you can get better and live a healthy happy life.

Open Original Shared Link

[Lisa]

There are currently several active threads regarding the SCD Diet. Please make you replies to this link:

https://www.celiac.com/gluten-free/index.php?showtopic=54285

[rinne]

There seems to be some excitement about the discovery that it seems that genes can be switched on or off depending on factors within our diet. I reckon that makes sense too!

Very interesting.

[IChaseFrisbees]

I have a question about the SCD regarding cheese, some cheeses are allowed on the diet, but I get bad symptoms from all of them. What does this mean for me? Is that a casein problem, lactose problem or what?

And I'm sorry if there's a big SCD thread for this to be on, I found some links but none of them seemed to work, so if anyone wants to point this in the right direction I'd appreciate it.

Thanks a lot

[psawyer]

Due to an error on my part, this topic has been invisible for almost two hours. It is now back. I apologize for the inconvenience.

[rinne]

I have a question about the SCD regarding cheese, some cheeses are allowed on the diet, but I get bad symptoms from all of them. What does this mean for me? Is that a casein problem, lactose problem or what?

And I'm sorry if there's a big SCD thread for this to be on, I found some links but none of them seemed to work, so if anyone wants to point this in the right direction I'd appreciate it.

Thanks a lot

I have the same problem, I am hoping that after some time and healing I may be able to eat cheese again. I think it is a casein problem which is common when the villi have been damaged. I read somewhere here that after four years someone was able to reintroduce dairy. That's a long time but it gave me hope.

I did have a little of the goat cheese yogurt yesterday without any ill effects. Have you tried making the goat cheese yogurt?

[rinne]

Here is a Open Original Shared Link to some information on Casein.

Also, I don't want to discourage you from getting any tests. I was desperate by the time I had the Igenex test and did treat the Lyme with nutraceticals but I think the main thing in my health improving has been dietary changes that is why I suggested seeing what happens first.

If you want more information on the Igenex test I will be happy to share what I know with you.

[AliB]

I agree with Rinne - Casein is one of the 'big 4' most common intolerances and it can contribute to, and keep going, a lot of damage.

The article by Dogtor J covers that too. He points out that like gluten (glue-ten), casein (& soy & corn) is also used to make glue. Whilst goats milk contains S1 Beta casein which is easier to digest, cows milk contains S1 Alpha which isn't.

Years ago casein or 'milk' paint was used extensively before the advent of the modern synthetic paints. I tried to strip a chair once that had been painted in the stuff - I tell you, it was a nightmare! It was so hard, and paint stripper just wouldn't touch it. I also have a couple old buttons made from it and they are very hard too.

Many can't digest lactose very well, but it may be that the casein is what contributes to the damage by, like gluten etc., 'gumming up the works'!

Although the villi start to repair immediately it is the deeper damage that is not apparent. The enterocytes are constantly moving up the villi and being sloughed off so that part of the damage will recover fairly quickly - it is what is going on underneath that cannot be seen. And as those tissues degenerate very rapidly when removed, it would be very difficult, if not impossible for deep damage to be identified.

I do wonder if something like an MRI could pick it up - but then even that, unless it could magnify many times, may not be able to either.

I have had a little cheese occasionally and do generally find that it bungs me up, but I react less to it now than I did originally so I have hope that I may be able to cope with it eventually. I think I would probably steer clear of cows milk though. I keep seeing all these sheep everywhere here in Wales but have never seen any milk for sale - I think I might have to go knock on a few farmers' doors!

Initially the only dairy that is permitted on the SCD is the yogurt and cottage (curd) cheese which is made the same way - but if you can't get the cheese then dripped yogurt is just as good and pretty much the same.

The few 'legal' cheeses that are allowed are mainly reserved until the gut is well, if not completely, healed. Some people's gut damage is so bad that initially there are even some legal foods that they can't cope with so they need to be avoided for a while.

I couldn't cope with eggs initially but after about 3 months I was ok with them. I still have issues with some legal foods but that is improving all the time.

[Gentleheart]

What's the word about chocolate, specifically cocoa powder on the SCD? I know it's an illegal. But is that just because it is nearly universally accompanied by sugar, soy lecithin and even milk? Is chocolate still illegal if you make your own ground up concoction with gluten free unsweetened cocoa, honey or dates and maybe a little extra virgin coconut oil and even some nuts? Or is there just something inherent in chocolate itself that makes it a no no? Thanks.

[chatycady]

Lactose causes trouble. There is no lactose in the yogurt or dry curd cottage cheese, but there is a small amount in the other legal cheeses. I can't do the other legal cheese either. The villi don't produce enzymes that is the final step in digestion. According to what I've read when we can digest milk again we are healed. It's the last step, the last piece of the puzzle!

As for chocolate - Elaine says NO. Sugar or not. It's addictive - like a drug. Don't go there if you want to heal. It has no food value.