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Looking For SCD'ers Here, Need Support


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#1 precious831

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Posted 12 November 2010 - 01:31 PM

Hi, I posted before I'm grain-free and now I'm trying to do SCD, I would like to connect with those that are also on the same path. I know there was at least one person here. Let me know, thanks!
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Grain-free,dairy-free, soy-free (celiac, possible colitis now as well).
Extremely allergic to shellfish, Aspirin & Ibuprofen

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#2 Lisa

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Posted 12 November 2010 - 02:06 PM

Hi, I posted before I'm grain-free and now I'm trying to do SCD, I would like to connect with those that are also on the same path. I know there was at least one person here. Let me know, thanks!


This thread is a couple of years old, but may still be relevant:

http://www.celiac.co.../page__hl__AliB
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Lisa

Gluten Free - August 15, 2004

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#3 Takala

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Posted 12 November 2010 - 07:00 PM

Former SCD now recovered to where I can do some grain carbohydrates.

Eating more (good) fat to act as a slow burning fuel so you don't crash and burn as often, as well as the protein and vegetables, is the trick to this.
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#4 yolo

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Posted 13 November 2010 - 02:51 AM

Hi there--you are not alone. I know there are many others here like us. I'm 99% on a grain free diet. I participated with AliBi's thread for 10 months or so. I only eat some rice when nothing else is available. I do eat summer squash and now and then a little winter squash. I can't handle sweets of any kind except stevia--so my diet is actually more restricted than a strict scd that doesn't use stevia but does eat fruit and honey. I am allergic to all nuts too--so for pancakes I use ground up sunflower seeds and pumpkin seeds mixed with shredded zucchini. I eat a lot of vegetables and some meat. No eggs either since I am allergic to them too unfortunately... At least my boyfriend says I look great and overall I feel good too except for this darn condition of flaky ears and part of my nethers. It gets worse if I eat any fruit it seems, even lemons--not to speak of grains and anything really starchy. Aach! Fortunately the 24 hour yogurt works quite well for me and I enjoy making soups and stir frys and such and greatly enjoy using fresh spices so there are things I can eat...
  • 0
Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#5 precious831

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Posted 13 November 2010 - 09:49 AM

Former SCD now recovered to where I can do some grain carbohydrates.

Eating more (good) fat to act as a slow burning fuel so you don't crash and burn as often, as well as the protein and vegetables, is the trick to this.



How long were you on the SCD before you started to improve?
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Grain-free,dairy-free, soy-free (celiac, possible colitis now as well).
Extremely allergic to shellfish, Aspirin & Ibuprofen

#6 precious831

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Posted 13 November 2010 - 09:50 AM

This thread is a couple of years old, but may still be relevant:

http://www.celiac.co.../page__hl__AliB


Thanks I'll check it out!
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Grain-free,dairy-free, soy-free (celiac, possible colitis now as well).
Extremely allergic to shellfish, Aspirin & Ibuprofen

#7 precious831

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Posted 13 November 2010 - 09:56 AM

Hi there--you are not alone. I know there are many others here like us. I'm 99% on a grain free diet. I participated with AliBi's thread for 10 months or so. I only eat some rice when nothing else is available. I do eat summer squash and now and then a little winter squash. I can't handle sweets of any kind except stevia--so my diet is actually more restricted than a strict scd that doesn't use stevia but does eat fruit and honey. I am allergic to all nuts too--so for pancakes I use ground up sunflower seeds and pumpkin seeds mixed with shredded zucchini. I eat a lot of vegetables and some meat. No eggs either since I am allergic to them too unfortunately... At least my boyfriend says I look great and overall I feel good too except for this darn condition of flaky ears and part of my nethers. It gets worse if I eat any fruit it seems, even lemons--not to speak of grains and anything really starchy. Aach! Fortunately the 24 hour yogurt works quite well for me and I enjoy making soups and stir frys and such and greatly enjoy using fresh spices so there are things I can eat...


I'm just starting and I'm a little confused about the legal foods. I can eat pretty much anything on the legal list. I've only used honey, though I have stevia, I haven't used that on baking.

What stage are you? You must be advanced if you're able to use sunflower and pumpkin seeds...is that SCD legal?

I miss starchy foods and I've cheated, lol.

Now I want to try SCD on my 3 yr old and her pediatric GI is very optimistic about this diet but I'm just not sure what she will eat. She's allergic to a lot of meats and other things, plus she's still on Alimentum RTF liquid which has tapioca starch and carageenan and those are not SCD legal. She can't do dairy, and I thought the yogurt is for later stages, especially because she's intolerant to dairy too. Confused about the yogurt part, when to introduce it. My DD needs the formula because her diet is so limited. Anyway she's getting (Company Name Removed - They Spammed This Forum and are Banned) and a comprehensive stool test from Great Lakes Labs and then the GI and I will decide our next action from there.
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Grain-free,dairy-free, soy-free (celiac, possible colitis now as well).
Extremely allergic to shellfish, Aspirin & Ibuprofen

#8 sahm-i-am

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Posted 13 November 2010 - 12:28 PM

I looked but I'm not sure - what does SCD stand for?
Thanks.
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Diagnosed with Lymphoma March 2010. After surgery doctors said "Oops!"
Diagnosed with Celiac Disease April 2010. After endoscopy doc said "Aren't you glad?"
Uhhh.....yeah!
DD #1 ('99) tested negative on bloodwork but positive on 2 genetic markers. Went gluten free in July 2010 and has been symptom-free ever since!
DD #2 ('98) tested negative and has no symptoms. Didn't fork out money for genetic testing. Will watch and test regularly.
Husband tested positive in July 2010 and has refused to go gluten free. Uh huh, that's gonna bite him in the a** one day! (Pun intended!)

#9 yolo

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Posted 13 November 2010 - 12:38 PM

There were/are a lot of things I did and do that aren't completely in line with scd mainly due to the fact I have so many food intolerances.

Stevia is not really part of their diet. It is a member of the sunflower family actually. Why that should be a problem I never really figured out. There was a big scare about stevia years ago that was completely unfounded--mainly put out there by the artifcial sweetner companies (whose products really are not safe). Due to my ongoing difficulty with sugars its the only sweet I can tolerate and I refuse to give it up. The diet is supposed to help a person, not be something one slavishly follows to one's detriment.

If you and your daughter can tolerate the honey, however, so much the better!

The low carb muffins and pancakes etc. the scd'ers use which are made using almond meal did not work for me since I am severely allergic to almonds as well as other nuts--and eggs. I now can tolerate thoroughly rinsed walnuts say once every week but that is all. Thus I use the sunflower seeds and yogurt rather than eat meat for every meal...I think however its possible the almond meal is nicer. Especially if you can add an egg or two. If not, then you need to add ground up flax seed and think of using other non scd stuff like xanthum gum to hold your concoction together.

And yes, CC can be a problem for many here. So I suggest you make your own almond meal or whatever--rinse the almonds well and dry them out before grinding them. Its actually cost effective and in many ways more convenient than trying to chase down truly gluten-free almond meal (or sunflower and pumpkin seed meal in my case...) that hasn't been CC'd.

The yogurt as said works out well for me since I am not casein intolerant.. I am otherwise intolerant of all dairy (except butter) --but fortunately its just the lactose that really is the problem -- though I don't tolerate cheeses or kefir either.

I make the yogurt by using an improvised double boiler ( a large double handled cooking pot set on top of another yet larger double handled cooking pot with a small metal base underneath to separate the pots. I used canning lids as an improvised base for a long time. I now have a round shallow stainless steel grater I use since the canning lids were starting to rust. I scald (to 185 degrees F.) the milk and then cool it down (to 90 t o 100 degrees F) and then mix in 2 or 3 tablespoons of fresh yogurt in it. I then set the pot on a warm heating pad with a towel on top for 24 hours. By fermenting it that long or a little longer it gets rid of all the lactose. I only use organic milk to avoid the chemicals and antibiotics they put into the cows which thus also gets into the cows milk. I suggest you also consider this when it comes to meats too.

There is also an acidophilous fermented cabbage drink people make --especially used by those who are casein intolerant that is also listed on AliBi's scd thread. I never did try it yet though I am still interested. You can probably just google it on the site for directions. There is a wealth of information on it--including many recipes using zucchini.

Good luck Hope some of this helps.

Bea
  • 0
Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#10 precious831

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Posted 13 November 2010 - 12:58 PM

There were/are a lot of things I did and do that aren't completely in line with scd mainly due to the fact I have so many food intolerances.

Stevia is not really part of their diet. It is a member of the sunflower family actually. Why that should be a problem I never really figured out. There was a big scare about stevia years ago that was completely unfounded--mainly put out there by the artifcial sweetner companies (whose products really are not safe). Due to my ongoing difficulty with sugars its the only sweet I can tolerate and I refuse to give it up. The diet is supposed to help a person, not be something one slavishly follows to one's detriment.

If you and your daughter can tolerate the honey, however, so much the better!

The low carb muffins and pancakes etc. the scd'ers use which are made using almond meal did not work for me since I am severely allergic to almonds as well as other nuts--and eggs. I now can tolerate thoroughly rinsed walnuts say once every week but that is all. Thus I use the sunflower seeds and yogurt rather than eat meat for every meal...I think however its possible the almond meal is nicer. Especially if you can add an egg or two. If not, then you need to add ground up flax seed and think of using other non scd stuff like xanthum gum to hold your concoction together.

And yes, CC can be a problem for many here. So I suggest you make your own almond meal or whatever--rinse the almonds well and dry them out before grinding them. Its actually cost effective and in many ways more convenient than trying to chase down truly gluten-free almond meal (or sunflower and pumpkin seed meal in my case...) that hasn't been CC'd.

The yogurt as said works out well for me since I am not casein intolerant.. I am otherwise intolerant of all dairy (except butter) --but fortunately its just the lactose that really is the problem -- though I don't tolerate cheeses or kefir either.

I make the yogurt by using an improvised double boiler ( a large double handled cooking pot set on top of another yet larger double handled cooking pot with a small metal base underneath to separate the pots. I used canning lids as an improvised base for a long time. I now have a round shallow stainless steel grater I use since the canning lids were starting to rust. I scald (to 185 degrees F.) the milk and then cool it down (to 90 t o 100 degrees F) and then mix in 2 or 3 tablespoons of fresh yogurt in it. I then set the pot on a warm heating pad with a towel on top for 24 hours. By fermenting it that long or a little longer it gets rid of all the lactose. I only use organic milk to avoid the chemicals and antibiotics they put into the cows which thus also gets into the cows milk. I suggest you also consider this when it comes to meats too.

There is also an acidophilous fermented cabbage drink people make --especially used by those who are casein intolerant that is also listed on AliBi's scd thread. I never did try it yet though I am still interested. You can probably just google it on the site for directions. There is a wealth of information on it--including many recipes using zucchini.

Good luck Hope some of this helps.

Bea


Thanks, I buy the almond flour from an SCD website and no problems with them, it's great! I know about that acidophilus drink, you mean kombucha? I don't like that at all, I don't like kimchi either. I've not tried to do anything with kefir grains yet but I'm thinking about it. I grew up w/ my dad making those fermented vegetable and he always tried to get me to eat them, never liked them.

Eventually I'll start grinding my own almonds into meal and/or flour.

Well it's funny you said that because I've looked a the other support groups and even in the book it's so strict. That's why I was like holy cow I don't know how I'm gonna do this with my daughter, she's 3 and her diet is already so limited. You know what though, sticking with the diet makes a whole world of difference for me! First of all I no longer crave sugar like I used to, that itself is amazing! LOL, I used to be a sugar addict, I ate tons of candy, drank soda, I mean name it. I did go through a really bad withdrawal with the sugar but now I'm fine w/out it. And like I said I'm no longer pre-diabetic and also my blood pressure is now normal, not high like it was before. The dramatic improvements were my GI symptoms.

I used to make coconut yogurt, I bought a dairy-free yogurt starter, expensive but it was great yogurt. I have a yogurt maker. However I kind of want to do the goat milk too as suggested and before I only cured the yogurt for 12 hrs, this time it has to be 24 hrs. I react to the casein, this is a huge problem for me, a real bummer.

I am a real health nut so I make most of the foods we eat from scratch, I only buy organic meats, veggies, everything so don't have to worry about that. I take a bunch of supplements they seem to be ok with the SCD, they don't contain any of the forbidden stuff.

Where do you get your almonds? I need one that is certified gluten-free. My sis bought me one fr Trader Joes and it says it's processed in shared equipment, I don't even want to take a risk with that. The ones at Whole Foods are the same, processed equipment.

Thanks!
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Grain-free,dairy-free, soy-free (celiac, possible colitis now as well).
Extremely allergic to shellfish, Aspirin & Ibuprofen

#11 precious831

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Posted 13 November 2010 - 01:00 PM

I looked but I'm not sure - what does SCD stand for?
Thanks.


Hi, SCD stands for the Specific Carbohydrate Diet. There is a wonderful book called "Breaking the Vicious Cycle" that details it but you can also find a lot of info online.

HTH
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Grain-free,dairy-free, soy-free (celiac, possible colitis now as well).
Extremely allergic to shellfish, Aspirin & Ibuprofen

#12 yolo

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Posted 13 November 2010 - 02:50 PM

Thanks, I buy the almond flour from an SCD website and no problems with them, it's great! I know about that acidophilus drink, you mean kombucha? I don't like that at all, I don't like kimchi either. I've not tried to do anything with kefir grains yet but I'm thinking about it. I grew up w/ my dad making those fermented vegetable and he always tried to get me to eat them, never liked them.

Eventually I'll start grinding my own almonds into meal and/or flour.

Well it's funny you said that because I've looked a the other support groups and even in the book it's so strict. That's why I was like holy cow I don't know how I'm gonna do this with my daughter, she's 3 and her diet is already so limited. You know what though, sticking with the diet makes a whole world of difference for me! First of all I no longer crave sugar like I used to, that itself is amazing! LOL, I used to be a sugar addict, I ate tons of candy, drank soda, I mean name it. I did go through a really bad withdrawal with the sugar but now I'm fine w/out it. And like I said I'm no longer pre-diabetic and also my blood pressure is now normal, not high like it was before. The dramatic improvements were my GI symptoms.

I used to make coconut yogurt, I bought a dairy-free yogurt starter, expensive but it was great yogurt. I have a yogurt maker. However I kind of want to do the goat milk too as suggested and before I only cured the yogurt for 12 hrs, this time it has to be 24 hrs. I react to the casein, this is a huge problem for me, a real bummer.

I am a real health nut so I make most of the foods we eat from scratch, I only buy organic meats, veggies, everything so don't have to worry about that. I take a bunch of supplements they seem to be ok with the SCD, they don't contain any of the forbidden stuff.

Where do you get your almonds? I need one that is certified gluten-free. My sis bought me one fr Trader Joes and it says it's processed in shared equipment, I don't even want to take a risk with that. The ones at Whole Foods are the same, processed equipment.

Thanks!


I am so glad to hear the scd diet is helping you so much. Bravo for you! Given your family history with your dad's concoctions, you probably aren't the only ones in your genetic lineup to have this and similar conditions. though honestly the standard american diet is not very good for anyone...and does create cravings for carbs and sugars.

As far as being strict with the scd diet, well I think it all depends on how well the diet works for you. If it does, fine. If there are glitches you need to adjust. The book was written for this woman's daughter in mind who had a specific intestinal condition which is not the same as celiac.

The TJ bags of raw almonds my bf has says its made on same equipment as other tree nuts, not wheat etc. I'd still wash them though. I don't know more than that since I am allergic to all nuts as said...and haven't really looked into it. The raw sunflower seeds and raw pumpkin seeds from TJs seem fine. Nevertheless I would check out sources on the internet if you have any problems with TJ's or WF. I am betting you could order a bag from a grower if needs be. You could also check out the source of the scd almond meal perhaps.

I would be interested in your coconut yogurt recipe for a friend of mine who also has celiac and is going off milk.

If you are truly casein intolerant then any milk is probably not so great. Though I do recall goats milk casein being a little different so you never know. For me actually I am More allergic to goats milk so go figure. I also seem to be allergic to goat and sheep meat...as well as tuna.

With us folks who have celiac or severe gluten intolerance the problem is usually having too many "holes" in the intestines causing leaky gut syndrome, not that there aren't enough. We actually in my opinion sometimes need these so called "gucky substances" to help our intestines heal if we have just been "glutened" (such as marshmallow root and/or slippery elm--both strictly non scd by the way!!). For celiacs our auto immune reacts to gluten; it attacks the villi and basically either flatten or destroys them which then causes inflammation which makes the whole thing worse. Marshmallow root and slippery elm take down the inflammation and soothe the intestines. Once healed enough one can go off them. The gluten attack and resultant flattened villi and inflammation creates some scar tissue yes but overall creates too much permeability in the intestinal membrane. This then allows undigested proteins into the blood stream which our bodies then treat as foreign invaders, creating inflammation. This then creates toxicity and blockages in the liver and the lymphatic system. When this happens I get out my trusty herbs like dandelion root and cleavers to the rescue as well as marshmallow root, acidophilous and a variety of other things.

Oh I am rambling. Sorry.

Meanwhile i am very glad you are finding things that are working for you and your daughter.
For myself I am an inveterate inquisitive and doubter of all things truly fixed. I like structure, but am inclined to play with it to see what is real or not and what does or does not work for me.
I thus combine things I learned from scd with the paleo diet and my own experience and those of others I have observed, which can improve and change over time...

Bea

It also creates and environment where it is very difficult to absorb basic oil soluble nutrients like vitamins b, d, a and e and the like as well as most minerals. B vitamin absorption also becomes difficult I think in part due to the liver being so overwhelmed--which is why I take co-enzyme B vitamins since they absorb into the blood stream right away (on an empty stomach), thus by passing the need to go through the liver.
  • 0
Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#13 precious831

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Posted 13 November 2010 - 04:49 PM

I am so glad to hear the scd diet is helping you so much. Bravo for you! Given your family history with your dad's concoctions, you probably aren't the only ones in your genetic lineup to have this and similar conditions. though honestly the standard american diet is not very good for anyone...and does create cravings for carbs and sugars.

As far as being strict with the scd diet, well I think it all depends on how well the diet works for you. If it does, fine. If there are glitches you need to adjust. The book was written for this woman's daughter in mind who had a specific intestinal condition which is not the same as celiac.

The TJ bags of raw almonds my bf has says its made on same equipment as other tree nuts, not wheat etc. I'd still wash them though. I don't know more than that since I am allergic to all nuts as said...and haven't really looked into it. The raw sunflower seeds and raw pumpkin seeds from TJs seem fine. Nevertheless I would check out sources on the internet if you have any problems with TJ's or WF. I am betting you could order a bag from a grower if needs be. You could also check out the source of the scd almond meal perhaps.

I would be interested in your coconut yogurt recipe for a friend of mine who also has celiac and is going off milk.

If you are truly casein intolerant then any milk is probably not so great. Though I do recall goats milk casein being a little different so you never know. For me actually I am More allergic to goats milk so go figure. I also seem to be allergic to goat and sheep meat...as well as tuna.

With us folks who have celiac or severe gluten intolerance the problem is usually having too many "holes" in the intestines causing leaky gut syndrome, not that there aren't enough. We actually in my opinion sometimes need these so called "gucky substances" to help our intestines heal if we have just been "glutened" (such as marshmallow root and/or slippery elm--both strictly non scd by the way!!). For celiacs our auto immune reacts to gluten; it attacks the villi and basically either flatten or destroys them which then causes inflammation which makes the whole thing worse. Marshmallow root and slippery elm take down the inflammation and soothe the intestines. Once healed enough one can go off them. The gluten attack and resultant flattened villi and inflammation creates some scar tissue yes but overall creates too much permeability in the intestinal membrane. This then allows undigested proteins into the blood stream which our bodies then treat as foreign invaders, creating inflammation. This then creates toxicity and blockages in the liver and the lymphatic system. When this happens I get out my trusty herbs like dandelion root and cleavers to the rescue as well as marshmallow root, acidophilous and a variety of other things.

Oh I am rambling. Sorry.

Meanwhile i am very glad you are finding things that are working for you and your daughter.
For myself I am an inveterate inquisitive and doubter of all things truly fixed. I like structure, but am inclined to play with it to see what is real or not and what does or does not work for me.
I thus combine things I learned from scd with the paleo diet and my own experience and those of others I have observed, which can improve and change over time...

Bea

It also creates and environment where it is very difficult to absorb basic oil soluble nutrients like vitamins b, d, a and e and the like as well as most minerals. B vitamin absorption also becomes difficult I think in part due to the liver being so overwhelmed--which is why I take co-enzyme B vitamins since they absorb into the blood stream right away (on an empty stomach), thus by passing the need to go through the liver.



Thanks for all the info, I'll look for the coconut yogurt, it's been a while since I made it. I actually got it off someone's site so it's not really my recipe. It was really easy to make.

I'm changing GI drs because the last one is no help really,we disagree on a lot of stuff. He said I might have "ulcerative colitis" he did the colonoscopy and wants to do it again to make sure. I just got it done and I'm not about to go get it done again! I hope the new GI is better.

I don't know yet about SCD and my DD, like I said she hasn't tried it yet, it's just me doing it.
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Grain-free,dairy-free, soy-free (celiac, possible colitis now as well).
Extremely allergic to shellfish, Aspirin & Ibuprofen

#14 T.H.

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Posted 13 November 2010 - 05:16 PM

A very sensitive celiac I know buys her nuts on-line from either anuts.com or nutsonline.com

I have yet to try these, and I believe they are unshelled (?), but she seems to have success with these ones. :)
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#15 precious831

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Posted 13 November 2010 - 08:25 PM

A very sensitive celiac I know buys her nuts on-line from either anuts.com or nutsonline.com

I have yet to try these, and I believe they are unshelled (?), but she seems to have success with these ones. :)


Thanks, one of them sounds familiar and I have it bookmarked.
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Grain-free,dairy-free, soy-free (celiac, possible colitis now as well).
Extremely allergic to shellfish, Aspirin & Ibuprofen


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