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The "original" Celiac Diet?


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15 replies to this topic

#1 BRCoats

 
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Posted 09 October 2004 - 12:41 PM

Hi all,

I've been researching the SCD diet (Breaking the Vicious Cycle). I see it has been referred to as the "original" celiac diet. No sugars, except for a few choice fruits and honey, etc. Does anyone know more about this? Could this be why some of us are not healing very well?

I'd be very interested in your thoughts, and if you have researched the diet also.

Brenda
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~Brenda

Celiac, gastroparesis, PCOD, heart problems, pacemaker.

Diagnosed 7-12-04 via bloodwork. Never had a biopsy, doc didn't think it was necessary (said I would know just by going gluten-free).

gluten-free two weeks after diagnosis (and my last bag of Oreos). :-)

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#2 tarnalberry

 
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Posted 09 October 2004 - 01:14 PM

Meh... I think calling it "the original celiac diet" only speaks to people not originally knowing what the problem is. It is a very restrictive diet, from the research I've done on it, and I think it's been sufficiently determined that celiac - by itself - is only from a reaction to gluten.

On the other hand, that doesn't mean that some celiacs who aren't doing well with just the gluten-free diet won't benefit from the SCD as well. I wouldn't want to recommend it in a blanket way, but I do believe that the best way to figure out if it'll help you is to try it.

One thing I find interesting, however, is that these restrictive diets - particularly SCD, gluten intolerance just a number of years ago, or even Atkins "back in the day" - really move us away from processed foods. At least, they move us away from processed foods until food manufacturers come out with some sort of processed food that meets the diet's guidelines.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#3 BRCoats

 
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Posted 09 October 2004 - 02:36 PM

Tiffany,

Point well made. Everyone wants to make money off of the new fad (or specific diseases). Therefore out comes the processed foods. Seems like the SCD diet really backs away from eating processed foods and sugar. I think it's just a way to rebuild your gut, so in that respect, I think it sounds like a good thing. But it also sounds very difficult.
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~Brenda

Celiac, gastroparesis, PCOD, heart problems, pacemaker.

Diagnosed 7-12-04 via bloodwork. Never had a biopsy, doc didn't think it was necessary (said I would know just by going gluten-free).

gluten-free two weeks after diagnosis (and my last bag of Oreos). :-)

#4 burdee

 
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Posted 09 October 2004 - 09:20 PM

Brenda:
I'm not sure why others are still struggling with symptoms, but my experience over the past almost 6 months has been:

First it took me a long time to eliminate EVERY source of gluten, besides the obvious breads, pastries, pastas, then the ingredients in condiments, then vitamins, then healthcare items like toothpaste, then envelopes and stamps. I still had cross-contamination slips in my own kitchen by sharing condiments and utensils from my gluten-eating husband.

Then I learned I ALSO had casein intolerance (from Enterolab tests). So I had to eliminate all the dairy sources. When I tried to substitute soy for dairy, I learned I had SOY intolerance as well (from my symptoms). So then I had to learn everything that had soy which was even more difficult to detect than dairy. That actually eliminated butter, cheese, yogurt and chocolate from my previously dairy laden diet. I don't like rice or almond milks because they are too low in protein and fats. So I had to develop new 'safe' breakfast and lunch menus. I always had mostly meats and vegies for dinners, so I only had to change condiments. I also noticed I am 'sensitive' to very spicey or acidic foods. While I don't know that I have allergies or intolerances to those kinds of foods, I can certainly respect my body cues to avoid what seems to hurt.

I would trace my recurrent celiac symptoms to (1) difficulties learning which foods/products contained gluten; (2) ignorance about additional intolerances (dairy and soy); (3) difficulties finding adequate dairy substitutes; (4) difficulties discerning which foods had soy; (5) cross-contamination in my own kitchen; (6) trusting bakeries or companies which purport to make safe foods, but don't have dedicated lines or shelf space for gluten and gluten free products; (7) not adequately or clearly telling restaurant personnel my needs for gluten/dairy/soy free meals; (8) trusting free samples of 'safe looking' cut fruit or vegies in grocery stores are not contaminated by other customers. I have learned from my contamination experiences SLOWLY ... but only AFTER experiencing painful symptoms.

So even when we KNOW ingredients to avoid (like gluten or dairy), learning which foods are safe and which to avoid may be a long, often painful process as we learn 'the hard way'.
BURDEE
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Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.


#5 celiac3270

 
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Posted 10 October 2004 - 12:42 AM

I think it's just a way to rebuild your gut, so in that respect, I think it sounds like a good thing. But it also sounds very difficult.


It does sound like a good way to repair everything since it's so limited. My problem with it is that it is so restrictive. There is already so much that is restricted through the gluten-free diet (in addition to any other allergies or intolerances one might have). If you eliminate even more, you can't eat any gluten-free products you would buy, such as breads, brownies, cookies, etc. What can you eat? Well, I guess you have to eat all fresh products that you make yourself. Anyway, I also need to deal with eating a gluten-free lunch that my school provides, so it would be very difficult for me to adhere to. It's nice to know that there's a last option, though. If I take over a year and I'm just as sick, I just might try that in desperation :P
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#6 Nadtorious

 
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Posted 10 October 2004 - 02:35 AM

I think the reason why it may be called the original Celiac diet is because how closely it resembles the diet the Celiac Sprue Association recomends and the diet most of our doctors put us on when we were first diagnosed. The diet focuses more or less on food that are really easy to digest at first-meat and fruit, then adds more as your gut heals and you feel more comfortable. I read the book a while back and eliminated all gluten-free starches, minus brown rice and a potato here and there, and I haven't felt better in 5 years. I don't know why, but I've always felt that I reacted to many of the gluten-free starches-I know that CODEX standards allow up to 200 ppm for a food to be gluten free, but my body just can't tolerate that. I truly didn't feel 100% better until I elminated that stuff (hard, but my wallet and my health are both thankful).
Nadia
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Eat, drink, and be merry!

#7 burdee

 
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Posted 10 October 2004 - 08:48 AM

celiac3270: This is probably the wrong topic to ask this, but I can't find the thread where you wrote how/why your doctor told you to restrict acidic foods and sugars. :unsure: What was your doctor's rational for restricting acids and sugars? Specifically what did you avoid? Has that helped your recovery much? After I eliminated gluten/dairy/soy, I noticed acidic foods also gave me problems, so I have avoided tomatoes, acidic berries, citrus, mustard, etc. I don't eat many sweets, but I had problems when I chewed real sugar gum (I can't use artifically 'sorbitol' sweetened gums). I'm considering restricting dextrose containing foods, but fruits/vegies don't bother me.
BURDEE
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Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.


#8 celiac3270

 
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Posted 10 October 2004 - 12:55 PM

I've been avoiding sugars/acids since....I can't really remember, but probably about a month and a half. The doctor suggested that the acid from spaghetti sauce and ketchup might have been bothering my stomach and cutting out acids including tomato products and oranges might help me. He gave good reasons, but I don't remember exactly what he said. Anyway, I think the acid elimination was really helping cause on Thursday and Friday I had tiny amounts of ketchup and I reacted. I know it's not the ketchup, cause I use Heinz, so I think the ketchup elimination has been helping. I have returned to 100% elimination of ketchup.

The sugar isn't an elimination but a.......restriction. The doctor suggested that complex sugars might be bothering me somehow (either that or the acid) so I cut back on those. I don't need to avoid all sugars, but he suggested that I avoid grapes and watermelon since those have some sugar that is perhaps harder on my system. Again, I know he gave me intelligent reasons to avoid them, but don't remember what he said.

Finally, I have received miscellaneous tips: don't eat the skins of apples (hard to digest), cook noodles very well so they're mushy, etc. I think it has helped because until my bout this weekend, I hadn't been sick since September 9th! In terms of general sugar, I realize that a lot of sugar from colas or candy won't help me, anyway, so I've been cutting back on them.

I might have put this under my old post in the coping section from awhile ago, but this is probably more descriptive, anyway. :)
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#9 burdee

 
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Posted 10 October 2004 - 01:14 PM

Thanks, celiac3270. I noticed restricting the acid stuff really helped me, too. :) I had to freeze all my fresh tomatoes from my garden, though. <_< I also avoided strawberries, raspberries, oranges, any tomato based sauces or condiments. Then I noticed even mustard and pickle relish bothered me, so I don't eat those anymore. However I had such an EXCRUCIATINGLY painful reaction on Thursday which felt just like my gluten symptoms 5 months ago, but I can't really pinpoint what may have caused it. :blink: I'm still having lots of pain, though not having diarrhea today, so I'm trying to eliminate anything that would hurt on the way through. I avoid eating as long as possible because EVERY meal hurts right now ... even really safe foods. Thanks for clarifying your acid/sugar restrictions.
BURDEE
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Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.


#10 strack2004

 
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Posted 11 October 2004 - 03:07 PM

I have been on the SCD diet for about 10 weeks now. I eat variations of lunch and supper menus for breakfast. The main thing I miss is oatmeal. If I could find a guaranteed gluten-free oatmeal, I would buy it. I eat variations of vegetables, fruits and meat. Am wondering if some kinds of turkey bother me. Could ground turkey include ground up organ meats? I asked the meat person in the store one time and he said "No", but sometimes people just say that and don't really know. I know that I cannot eat organ meats, though I love them. I am having a rough day today, too, Burdee. The burning across my upper ab is strong and also my bones ache, esp. feet. Back to meat. I find that I get along best with pollock and eggs. Am lactose intolerant, and acid fruits also bother me. I did eat some applesauce yesterday which may be the culprit. I have been eating turkey, chicken and beef. The discussions about broth being added to poultry are making me wonder. I am experimenting with different veggies that I haven't used much in the past. I avoid the vegetables not allowed on the SCD diet. I am finding that even without salt and butter, I am learning to really enjoy the flavors of cooked vegetables. I have a steamer outfit that does a beauatiful job of preserving the color and flavor of the beans I grew this summer. Also I am trying out mushrooms. They are expensive, but there are some bargains on them. Glyconutrients seem to be hitting the news lately and I see that stores are even having bargains on fresh common ones. I am still experiementing with getting enough carbohydrates since I don't use rice . Lately , for about 3 weeks I have been having diarrhea symptoms. I am usually Constipated. Am also experimenting with balancing calcium and magnesium. I did eat some sweet potato and potato this week. My stools today have been of a thicker consistency. Priced some flours at the health food store. I am to serve at our Ladies' Guild next monthe. The other gal wants to make apple cake. I thought I would perhaps try substituting non gluten-free things in her recipe, but the prices are just too high . I decided to make her recipe and send any leftover to my daughter's family that lives nearby. Or I could give it to another lady who has family . I just don't eat at these gatherings anymore. 9 or 10 at night isn't a good time for me to be eating anyway. I can enjoy the visiting without the food. As usual, I do run on. How nice it is to be able to talk about symptoms without embarassment on this board! Cheers, Ruth S.
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#11 BRCoats

 
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Posted 12 October 2004 - 03:39 PM

Ruth,

Why no salt and butter? Aren't those aloud on SCD? Also, I thought that sweet potatoes were not allowed? I have read that if you don't follow the diet very closely, it doesn't work....so maybe those things mentioned above could be why you don't feel well? Just wondering. Hope you feel better soon.

Brenda
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~Brenda

Celiac, gastroparesis, PCOD, heart problems, pacemaker.

Diagnosed 7-12-04 via bloodwork. Never had a biopsy, doc didn't think it was necessary (said I would know just by going gluten-free).

gluten-free two weeks after diagnosis (and my last bag of Oreos). :-)

#12 darlindeb25

 
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Posted 13 October 2004 - 02:27 AM

<_< where can i find the list of safe and unsafe foods for this diet--i have bought enough diet books and find they dont work for me, so i just want to find a list and try it that way--no more money thrown away on books until i find one that works--any websites would be appreciated--thank you, deb
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#13 strack2004

 
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Posted 14 October 2004 - 02:26 PM

BRCoats, Thanks for your reply. I do use salt and butter , sparingly, I guess I was thinking mainly about enjoying the flavors of vegetables without those additions. I often do eat them without, but do like a little butter on my squash! The sweet potatoes were a boo-boo. I have three different versions of a celiac diet. I guess I forgot that the SCD diet doesn't allow them, or regular potatoes either. I have felt a need to get a few more filling foods into my diet. Now that I went over the diet again, I realize that the reason for excluding sweet potatoes is that they contain a starch that our "bugs" like to feed upon and so proliferate behond the good "bugs" ability to stay in balance. The diet I got from the dietician does allow all kinds of things not allowed on the SCD diet. But neither my doctor or the dietician put much stock in the thinking behind the SCD. They don't object to my using it either. Thanks for reminding me. I really needed to go over the specifics again.
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#14 strack2004

 
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Posted 14 October 2004 - 02:35 PM

Darlin'Deb. Try http://www.scdiet.org. , or type in breaking the vicious cycle, or just try Elaine Gottschall. I printed out the whole list both of legal and illegal foods so don't need to go back in. Have to go home now, but tomorrow I'll check those out to see if they work. Cheers! Ruth
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#15 strack2004

 
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Posted 15 October 2004 - 02:01 PM

Darlin' Deb, Breaking the Vicious Cycle.info will get you to Elaine Gottschalk's diet plan. From her home page, go to the legal-illegal list. Back to what I eat, I also eat nut butters, mainly peanut butter and almond butter (natural). I was eating them on raw celery, but am wondering if raw celery is too much for my digestive tract, so am eating it cooked with other things. The nut butters I eat by the tsp. or tablespoon. The original http// address I gave in my first post works. Cheers, Ruth
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