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Specific Carbohydrate Diet (SCD)


AliB

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AliB Enthusiast

It is also known as Kryptopyrroluria, Pyrroluria or even Pyroluria.

There is not a lot of information about it and some seems to be contradictory but I found this thesis interesting.

Open Original Shared Link

The information that is out there seems good at telling us 'this is what happens' but not why. I would still suspect that bacterial or parasitic activity would be behind it. Just as there are some of the over 500 strains of bacteria in our bodies that like to rob us of our iron or Vitamin A, I am quite certain there are others that are quite capable of robbing us of Zinc and/or B6.

As Natasha Campbell-McBride point out, supplementing often only just serves to make the beasties stronger.

Interestingly I went through a phase where I took Zinc every day and for a while it was good and helped to protect me from getting the colds that were going around (it helps to boost the immune system). Eventually though it didn't work any more - maybe I had just been feeding the pathogens..............

What do you do? The words 'bang', 'head' and 'brick wall' come to mind.........

I have been good having my smoothies, but fell off the wagon a bit today - I don't feel very well and suspect I am probably sickening for something. Why do I always reach for the chocolate? I have been so good and not had any for weeks, then bang.


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GermanMia Newbie

Bang - head - brick wall - indeed.

Just at this moment I have cravings for apples, carrots, pumpkin, peanutbutter and lentils like mad (once a month I have cravings anyway but now that I have to avoid even fresh fruit I really could bang a brick wall... I do feel with you and the chocolate thing!)

This really is the question about the hen and the egg. It would be logical to assume that there is something that caused the invasion of pathogens. A normally working organism easily fights pathogens - they have no chance to settle and spread. There has to be a reason why they could settle and spread. So if you find the reason maybe you can fight it - this might very well be some congenital disorder which was not detected so that wrong diet let pathogens overgrow your body.

I'll discuss that with my naturopath friend tomorrow.

Mia

mftnchn Explorer

Mia I agree, I think it isn't all necessarily an upset from birth in terms of bacteria although it could be. I also think the body has a powerful ability to right itself if given a chance.

I've been reading this blog lately. Open Original Shared Link It is really interesting because the doctor posts stories about patients with severe symptoms who improve. And he is not at all into any alternative treatments, so it is mostly heavy doses of antibiotics. You'd think it would really mess people up, but read the results. I don't agree with everything on the site, and there was one post that gave me pause in terms of his understanding of celiac. But generally there is a lot of interesting information.

mftnchn Explorer

Constipation issues:

I've had an aha moment maybe. I was researching about constipation and read there are three types, atonic, spastic (or spasmodic) and obstructive.

In the past I have had atonic most of the time. Lack of tone or muscle activity in the intestine so things don't move through. I've recently added back in quite a bit of oral magnesium to try to get things moving again. Supposedly too much will cause diarrhea and then you can just back it off. That was true in the past for me.

But lately, I have been having the spastic kind. I figured it out because lately I have been having very thin stool and not much of it. That has happened on occasion in the past, but lately it was every day. I had added back the daily raw smoothie and was miserable and weight was up like 8-9 pounds in a week without any explanation re eating.

Then I read the magnesium can cause this??????? So I dropped the oral magnesium and things have gotten more normal again.

Apparently the spastic kind of C is common in IBS.

I am wondering if this part of the healing process. It seems like active muscle tone is better than inactive, even if not very effective.

I'm curious if anyone else has noticed this.

Sherry

mftnchn Explorer
Still feeling bettter - the oil is gone, but I haven't eaten any other than what's in the soup. I think I feel better and have more energy. I'm not craving chocolate every 10 seconds at least, and I've stopped eating so much honey because the cravings just aren't there. I've introduced asparagus, mushrooms and green beans, no problems. Fruits: I have eaten grapes and a few cherries, and cooked apples and pears. Today I might try some clementines. I can't believe I'm not falling over from lack of energy or craving potatoes and rice - I used to eat so much of those. The flushing red and fading white stuff seems to have subsided.

Kathryn, sorry about the yogurt maker, I've done that before with hair dryers. :(

So happy to hear how much better you are feeling!!!! Congratulations!

ArtGirl Enthusiast
The information that is out there seems good at telling us 'this is what happens' but not why.

I understood from reading the other site that it is a genetic condition that prevents the body from processing toxins so they build up over time.

There is a lot about the human body that researchers don't know the why. At least this one is not under the catagory of "it's all in your head" that they love to throw at us when they don't understand something. And there appears to be some sort of treatment developed for it.

I fully understand about the cravings. I cheated off the legal list a couple days ago. Had two frozen blueberry waffles (gluten-free, EF, DF) that my husband eats for breakfast. Went back on the wagon though the next. I've been expanding my foods to include raw vegetables which really makes me feel better (all that over-cooked food was getting to me).

Having to give up on the almond flour (D and fatigue) and I think I'm going to have to cut back on the honey, if not eliminate it all together. I'm still thinking cashews are okay, but probably should limit them, also. This is making the SCDiet very difficult for me - what do you do to replace honey in yogurt making??? Fruit juice?

I see a naturopathic/DO tomorrow and am going to ask for a bunch of tests. She is big on nutrition so I'm hoping we'll be a good match.

I found some coconut "cream" at the Asian store. No guar gum. Just 100% coconut. It was more the consistency of the canned coconut milk. I made yogurt with it today and will find out tomorrow if there's anything I react to in it. I'm using commercial coconut yogurt as a starter. Not perfect, but better for me than using cow's milk yogurt (has maltodextatrin - a corn product - which is less of a problem than milk, but only a little less).

Went to the Asian store to look for duck eggs. $7 for a dozen. NO WAY!

By the way, that store is a field trip into another culture. Foods I've never heard of before. And it seems no one speaks English except for a few words to get you checked out, so there's no asking anyone about anything. But it's fun to browse the aisles.

mftnchn Explorer

That seems high for duck eggs, sorry. One time I found them in a local co-op where farmers brought their produce especially organic. But I don't recall the price, it was a long time ago. They are more expensive than chicken eggs, true.

Asian goods may not list all the ingredients, just a warning.

Valda, I've forgotten if you said this before, but have you been checked for Lyme disease? If so how?

Before you eliminate a food like almonds, here's just an idea: Wait 4 days between trials. Try organic for the trial. If it doesn't work, maybe try a different source. I'm thinking about the almonds that Shay uses that she gets from Europe somewhere.

Maybe you have already done this---just worried that you are getting more and more restricted.

Sherry


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AliB Enthusiast

Mia, this may be too much information, but I am wondering, as the Anti-biotic wiped your digestive tract clean whether it might be prudent to see if your bowel can be 're-seeded' from the other end to get it down there quicker.

There is a lady over here who does Colonic Irrigation. At the end of the process she restores bowel flora with probiotics to give it a head start.

I just wonder if you know of anyone who might be able to do that for you - there are always going to be some survivors - even a few baddies can have a lot of babies in a very short time - baddies that then would be resistant to any further treatment - you just want to make sure that they don't get a foothold before you can get it repopulated with the good guys.

ShayFL Enthusiast

Im making my yummy acidophilus yogurt today!! I cant wait.

Feeding the "buttermilk" yogurt to the dogs. They love it. :)

ArtGirl Enthusiast
Asian goods may not list all the ingredients, just a warning.

Valda, I've forgotten if you said this before, but have you been checked for Lyme disease? If so how?

Before you eliminate a food like almonds, here's just an idea: Wait 4 days between trials. Try organic for the trial. If it doesn't work, maybe try a different source. I'm thinking about the almonds that Shay uses that she gets from Europe somewhere.

Maybe you have already done this---just worried that you are getting more and more restricted.

Yes, I am getting more restricted as far as SCD goes. It may be that I cannot do this diet. But I'll wait until I get some tests run before making a decision.

Almonds have shown up as an IgG allergen in past tests, so I'm not very much surprised about reacting to them. Other nuts, as well. But some of that could just be the high fat content and without a gall bladder I don't digest high fats well.

I really don't think I have Lyme's because I'm not at all that sick. But there may be other things and I'm hoping this new doctor will be able to do some serious diagnosing.

DMarie Apprentice

AliB - I think the coconuts were old. They really didn't smell coconutty - and were more toward being flavorless - very little flavor. I might try again, following your instructions on using warm water - but I guess I would need to look for a coconut from somewhere else.

Meanwhile, I keep making the dairy yogurt. I am thinking I might try goat yogurt. Does goat milk taste alot different from cow's milk? Is it sharper, or gamey? Is there a big difference between goat and cow's milk yogurt, taste wise?

I wish I could find a naturopathic doctor here. I did a search on google, but just don't really come up with anything.

I just struggled through the day. I didn't eat anything illegal - but did end up eating raw nuts, which are probably not the best idea. I was craving something - anything - different than the same things I have been eating. I wanted sweet actually (I sometimes do crave things about once a month, seems to be associated with my cycle). I just wanted to feel full for more than 1 hour, and would like to wake up feeling something other than ravenous.

I am 2 weeks into this now. Mainly I have noticed some weight loss, loss of bloating. But I find that the more variety I try to add in, I am noticing some bloating. Not a whole lot of change in the mucous situation. Sometimes I am comfortable for several hours at a time, but often there is still a constant flow. Eating pretty much always kicks it off. I am wondering if the dairy yogurt is contributing to keeping this going. I normally only eat it by mixing in a couple of spoonfuls in with fruit or soup.

I have got to figure out a plan for eating. I did realize that I would much rather roast my chicken, then debone and use the bones for broth. The chicken tastes much better that way. Could revive my chicken soup when I am not stuck with dry, stringy chicken (which is what happens when I boil the chicken meat). Sometimes I just want to be able to grab something easy to eat. I have a recipe book - but most foods would be more advanced - and if I am starting to bloat by adding more things in - then that would seem to indicate I am not ready to be eating more. And that I am struggling with right now. I don't think it's a bad way to eat - if one can eat all of the legal foods without problem. I think my husband is getting tired of me living in the kitchen, so I really need to get a plan going. I need to come up with some sauces, which would help change the meat/veggies - give more variety. I need to come up with some snacks. I need to try making some basic items like mayonnaise. And I would sure love to have a sandwich of some type, so I guess that means I will need to try making bread.

Sherry - I'll have to look up the different kinds of constipation. It seems I had read that before (about the types). I know that my digestion works very slowly. I had a stomach function test done some 5 or 6 years ago - and it showed that things move through my system veeerrryyy slowly. Often it is very thin when I go, or just little bits at a time. I have often wondered if there were some sort of obstruction or something. I think the metamucil used to help some. But I was reading on psyllium - and some things seem to indicate it can be hard on the system (and irritant). I am thinking if I didn't take any magnesium - I will never go. Little worried about dropping it. I have been taking it daily for awhile now.

Valda - interesting about the coconut cream in the Asian market. I really wanted to make a go of the coconut yogurt as I feel that it might be better to stay away from the dairy for awhile. I guess there is always the danger of other items being added during the manufacturing process. It is frustrating that one cannot trust that all ingredients as disclosed. That really ticks me off when I think about it. :angry:

It is encouraging to be able to share and learn from each other. Right now as I am struggling some it is of great help.

:rolleyes:

mftnchn Explorer

Dawn,

Sorry about the struggle. Have you tried the little bit of soda in water after eating to see if it helped with the mucus?

I would imagine the dairy could be the problem with the mucous, and the goat yogurt or coconut would surely be worth a try. About taste, I suppose there is a difference but the goat milk yogurt is very tasty to me. Its more the idea than anything.

Have you tried pureeing the cooked chicken for soup? It is so creamy that way and doesn't matter if the meat happens to be tough. That's what I do with the carrots and chicken.

Spices for flavor really help I think. On your baked chicken put a little olive oil (if you handle it) and some Italian seasoning, and a little salt. Simple but so good.

Forgot if you are eating eggs, what about making a very thin egg pancake, and then using like a wrap for a "sandwich"?

I eat lots of stir fry, with very little oil and water added instead to steam and help them cook through. Just enough oil to brown the meat and garlic or ginger. Try beef or chicken with veggie and onion, onion ginger, ginger and anise with onion. (Anise is like a star if you get it whole, chunks are fine you just might not want to eat that piece.)

One thing I like is beef and zucchini stir fried with garlic and some spices added to make it sort of like fajita taste. Then I add a little yogurt (like sour cream) and if you can handle it, some cheese and tomato.

Have you tried the jello made from 100% juice and gelatin? It is very tasty, a little sweet and easy on the digestion.

On the magnesium, I wouldn't drop it if it is helping, it was a huge help to me in the past. What I read about the thin narrow stool was either obstruction or spasmodic/IBS related. The slow motility and hard stool is more atonic. I'm thinking that I have had a combo of both and it is for sure gluten related but not sure what else factors in. Except SCD helped. Three days into stopping the magnesium and 4-5 days into adding the first raw back in (first thing in the morning raw veggie/apple smoothie) things are looking much better. My guess is that the magnesium rather than giving me diarrhea was causing chaotic and ineffective "tone" in the intestine, at least at this point in the healing process.

Would your husband pitch in with dishes and stuff while you focused on some food preparations once or twice a week? If you could visit and talk while working it could be a pleasant time of connecting and positive for both. Mine would if I asked him but wouldn't think of it if I didn't. If I sat down and explained the struggle and that I would love his companionship and help to encourage me, and then my request, he'd for sure consider it.

Hope things are better soon.

Sherry

AliB Enthusiast

I am getting fed up of throwing coconuts away because they are rancid. I bought a couple last Thursday, went to use one last night and it was definitely 'off'. They have a not very nice 'perfume-y' flavor, which I suspect is down to some kind of bacteria.

I bought 3 more reduced yesterday and opened one of those and the water in that was off too. Yesterday was the 'display until' date so there was no reason to be off - and from Tesco too.

I bought 4 in a local market a few weeks back which were 'off' so I went back and complained and he gave me 4 more to replace them. They were all 'off' too!

I wish we could get 'fresh' coconut, but we only get the brown ones and they often do not seem to have been stored very well and can be quite mouldy especially around the eyes. Yet another thing for me to complain to Tesco about!

I always thought that coconuts should keep for ages before going bad. It must depend on how old they are when they get to the market shelf. I picked one up in the supermarket the other day that had a very neat hole in one of the eyes. One of the pickers obviously got thirsty then chucked it in the pile to keep the weight up! Cheeky beggar.

For every one nice coconut I seem to end up with 3 or 4 bad ones.

AliB Enthusiast

Dawn, personally I find that goats milk when fresh tastes just like cows milk. It is only as it gets older that it develops the stronger 'goaty' flavor. The pasteurised stuff you get in the supermarket doesn't even seem to do that so whether it is homogenised I don't know.

I would always prefer raw goat milk if I could get it. Years ago I used to buy it from a friend in bulk packs and freeze it - it always defrosted fine, yet I would find that when I bought it from other sources it would separate and curdle. Go figure..........! Perhaps it depended on how old it was when it was frozen or what the goats were fed. I will probably never find out.

DMarie Apprentice

AliB and Sherry - thanks for your input on what goat milk tastes like. I think it is probably more the idea of it than anything, as you said Sherry. I might just give it a whirl.

Thank you also for the varied food ideas Sherry! :) I have been sort of afraid of trying stir frys because I am so used to adding different oils and bottled stuff, which is now a no-no. I tried fresh ginger once - but I think it wasn't very fresh. I haven't bought any more since - but I know that would add a lot of flavor. The beef and zuchinni seasoned up to taste like fajitas sounds yummy. I have been keeping around some yogurt cheese, which I like on stuff. A spoonful of that on top would be perfect! I didn't think of puree'ing the chicken as well. That would help I am sure. My roast chickens made the most wonderful broth, and the chicken meat was tasty as well. Even that would be an improvement over the stringy, dry chicken. At which point I can tolerate the chicken soup again.

I did try the soda (baking, right?) in water after eating. I didn't really notice a difference. <_< I have not tried it again. Maybe I should.

I have explained a little bit to my husband what I am doing. He listened. I don't think he minds one way or another as long as I am not trying to make him eat what I am eating. ;) Although sometimes what I am eating works fine for everyone. Perhaps I might ask him for some company some evenings. And - I think I need to get some sort of schedule going. I probably need to keep my meals more simple, due to some bloating I am seeing. I need to figure out something else more for snacking. I am missing crunchy stuff (right now I mostly eat cooked fruit). I got tired of the soup for snacks.

On the plus side, today I made mayonnaise. So easy, who knew? :rolleyes: Then I made some deviled eggs for tomorrow (my daughter's request). I am accustomed to adding onion and garlic powder. So I used a micro-grater to grate some fresh garlic and onion instead. I think it tastes good. Hopefully everyone else will think the same. Anytime anything tastes just a little different - they eye me suspiciously and ask me what I did. I will not cop to making the mayo and grating the garlic/onion - because then they will expect it to taste different even if it really doesn't.

I have been mostly avoiding eggs, except for the little bit that is in the almond muffins I am eating. I don't want it to be a problem, and I ate them almost daily for years. I seem to be okay with them in things; I have tried them alone recently and it didn't seem to be a problem - but still - I am conserving my usage of them because I would much rather be able to cook with them than eat them whole.

There is no way to have lunch meat is there? I used to enjoy ham and cheese sandwiches (and sometimes just ham and cheese wraps, with the lettuce and stuff rolled up in the meat). That and a salad - it was such an easy lunch.

1000 mg of magnesium is too much. 750 mg doesn't help that much. The metamucil seemed to add bulk. I didn't necessarily have big movements every day even with that - but every 2nd or 3rd day I would. I guess the only way to find out about whether there is an obstruction or not is a colonoscopy. Maybe it will gradually improve.

DMarie Apprentice
I am getting fed up of throwing coconuts away because they are rancid. I bought a couple last Thursday, went to use one last night and it was definitely 'off'. They have a not very nice 'perfume-y' flavor, which I suspect is down to some kind of bacteria.

For every one nice coconut I seem to end up with 3 or 4 bad ones.

I hear you AliB! I have a feeling they would mostly be bad here as well. All are the same brand (even at different stores) - Melissa's. They are called "easy-crack coconuts." They have kind of a line around the middle. They do break fairly easy. But so far 3 of 3 bad (and I took them back to the store). I have one more sitting on the counter, but I do not have much confidence it will be any good either - so I am going to take it back as well. No young coconuts anywhere either.

Guess that means I will either try a nut milk to make yogurt from - or goats milk.

mftnchn Explorer

Did anyone try Asian stores for coconuts? I forget.

ShayFL Enthusiast

Hope everyone has a wonderful SCD Thanksgiving!! I am roasting a small turkey breast, making an SCD pumpkin casserole and steamed asparagus. We are going to friends. I will be eating my own delicious food and enjoying good conversation. :)

And today is my birthday and we went to Cheescake Factory where the manager is Celiac. He made a delicious Kobe burger for me, fresh steamed asparagus and a nice salad. :) No cake...but it didnt bother me at all.

Cheers everyone!!

Guest Jsn7821

Shay - how are you planning to do the SCD pumpkin casserole? I need some ideas to bring with me to my family Thanksgiving.

I heard baked Kale is really good (has anyone done this? tips?). I know baked leeks & carrots (w/ olive oil, sea salt and cayenne) is on my list.

For the most part I will just eat vicariously through everyone else. At least we're not sensitive to smell ... *knocks on wood*

DMarie Apprentice

Happy Birthday Shay!! :D

JSN7821 - I am not Shay but I made a squash casserole today that ended up smelling just like how my sweet potatoe casserole used to smell. I peeled and cubed a butternut squash and simmered it in a little bit of apple cider with water with a chopped up apple. I then drained the liquid and mashed it in my blender with some butter (about 4 tbs), honey (guessing it was approx 1/3 to 1/2 a cup), 3 eggs, and approx 1 tbs vanilla. Oh yes, I added some cinnamon, nutmeg, ginger and cloves as well for seasoning. Then I baked it in the oven for about 45 minutes at 350. I would think you could do the same thing with puree'd pumpkin (if you are going for a little bit sweet).

I am planning on cooking a turkey tomorrow (got a fresh one) with traditional sides for the family (mashed potatoes, gluten-free stuffing, corn, green beans, fresh cranberry sauce). I will be enjoying my squash casserole along with "faux" potatoes (mashed cauliflower with some butter and cheese). I will also be making a fresh fruit salad. I made some deviled eggs today as well (made my own mayo, used grated garlic and onion to flavor with salt). I have an SCD crustless pumpkin pie for me (cooked my first pie-pumpkin!) as well as gluten-free Pecan Pie for the rest of the family.

Happy SCD Thanksgiving to all! :)

DMarie Apprentice
Did anyone try Asian stores for coconuts? I forget.

That's a good idea Sherry! I think Valda had written about finding coconut milk in an Asian store that didn't have any guar gum or additives such as that that most other coconut milks have.

ArtGirl Enthusiast
I think Valda had written about finding coconut milk in an Asian store that didn't have any guar gum or additives such as that that most other coconut milks have.

The yogut I made with the Asian coconut milk did not culture (after 24 hours it was completely separated - the white solids floating on top, nearly clear liquid on bottom). I don't know if it was an undisclosed ingredient in the Asian coconut milk or the temperature was a tad bit too high (112F in the water bath). Or maybe the commercial coconut yogurt used as a starter was a dud.

I have been using a couple brands of canned coconut milk (they do have guar gum) - Thai and Native Forest organic. Both work equally as well.

ShayFL Enthusiast

I am just subbing the pumpkin for sweet potato and modifying an existing recipe. The top will be honey, almond flour, chopped pecans, vanilla, salt and coconut oil. The innards will be pumpkin, eggs, honey, vanilla, coconut milk and coconut oil.

I hope it turns out. The ingredients are all good and taste good....so should be delicioius!

rinne Apprentice
And today is my birthday and we went to Cheescake Factory where the manager is Celiac. He made a delicious Kobe burger for me, fresh steamed asparagus and a nice salad. :) No cake...but it didnt bother me at all.

Cheers everyone!!

Happy Birthday and Happy Thanksgiving to you and all. :)

It is nice to find this thread, I started the SCD last week and already feel like I have found an answer that the gluten free diet couldn't provide for me.

I haven't read back, 57 pages! but I will.

ShayFL Enthusiast

Welcome Rinne and I am glad it is helping you!!

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      Sorry but I don't have specific recommendations for doctors, however, starting out with good multivitamins/minerals would make sense. You may want to get your doctor to screen you for where you different levels are now to help identify any that are low, but since you're newly diagnosed within the past year, supplementation is usually essential for most celiacs.
    • trents
      Yes, I can imagine. My celiac journey started with a rejection of a blood donation by the Red Cross when I was 37 because of elevated liver enzymes. I wasn't a drinker and my family doctor checked me for hepatitis and I was not overweight. No answers. I thought no more about it until six years later when I landed a job in a healthcare setting where I got annual CMP screenings as part of my benefits. The liver enzymes were continually elevated and creeping up every year, though they were never super high. My primary care doc had no clue. I got really worried as your liver is pretty important. I finally made an appointment with a GI doc myself and the first thing he did was test me for celiac disease. I was positive. That was in about 1996. After going on a gluten-free diet for three months the liver enzymes were back in normal range. Another lab that had gotten out of whack that has not returned to normal is albumin/total protein which are always a little on the low side. I don't know what that's about, if it's related to the liver or something else like leaky gut syndrome. But my doctors don't seem to be worried about it. One thing to realize is that celiac disease can onset at any stage of life. There is a genetic component but there is also an epigenetic component. That is, the genetic component is not deterministic. It only provides the potential. There needs also to be some health or environmental stressor to activate the latent gene potential. About 40% of the population have the genetic potential to develop celiac disease but only about 1% actually do.
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