Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

The "original" Celiac Diet?


BRCoats

Recommended Posts

BRCoats Enthusiast

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

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

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.

Link to comment
Share on other sites
BRCoats Enthusiast

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.

Link to comment
Share on other sites
burdee Enthusiast

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

Link to comment
Share on other sites
celiac3270 Collaborator
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

Link to comment
Share on other sites
Nadtorious Rookie

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

Link to comment
Share on other sites
burdee Enthusiast

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

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



celiac3270 Collaborator

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. :)

Link to comment
Share on other sites
burdee Enthusiast

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

Link to comment
Share on other sites
strack2004 Rookie

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.

Link to comment
Share on other sites
BRCoats Enthusiast

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

Link to comment
Share on other sites
darlindeb25 Collaborator
<_< 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
Link to comment
Share on other sites
strack2004 Rookie

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.

Link to comment
Share on other sites
strack2004 Rookie

Darlin'Deb. Try Open Original Shared Link. , 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

Link to comment
Share on other sites
strack2004 Rookie

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

Link to comment
Share on other sites
SteveW Rookie

I've been following the SCD on and off for 6 months. I do feel better when I eliminate ALL grains and sugars. Occasionally I eat potatoes without any symptoms but I try to stay as close to the diet as I can.

The biggest issue for me is a lot of the foods that are recommended give me GI problems-Almond flours, Dairy( SCD Yogurts, Farmers Cheese), Red meats, Honey, Pork and most Fruit-even Bananas bother me. So getting enough calories is an issue.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    2. - Zackery Brian replied to rsvtwin6's topic in Food Intolerance & Leaky Gut
      6

      Gluten and 30 other Items causing me Severe Muscle Inflamation Pain

    3. - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    4. - Moodiefoodie replied to Moodiefoodie's topic in Related Issues & Disorders
      9

      Joint swelling when ill even on gluten-free diet

    5. - knitty kitty replied to Moodiefoodie's topic in Related Issues & Disorders
      9

      Joint swelling when ill even on gluten-free diet


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,063
    • Most Online (within 30 mins)
      7,748

    Nacina
    Newest Member
    Nacina
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Zackery Brian
      I'm sorry to hear about the challenges you've been facing with your health. Dealing with celiac disease and multiple food sensitivities can indeed be overwhelming. Here are a few thoughts and suggestions based on your experience and the replies you've received: Confirming Diagnosis: It's great that your gastroenterologist confirmed your celiac disease diagnosis through additional tests. Understanding the specifics of your condition can help tailor your approach to managing it more effectively. Food Sensitivity Testing: While blood tests for food sensitivities can provide some insights, they may not always be completely accurate. As mentioned by others, false positives are common, and individual responses to specific foods can vary. Discussing your test results and symptoms with a healthcare professional knowledgeable about celiac disease and food sensitivities can help clarify your situation. Research and Education: Exploring conditions like Mast Cell Activation Syndrome (MCAS) and histamine intolerance could shed further light on your symptoms and provide additional avenues for managing your health. Gathering information from reliable sources and discussing your findings with your healthcare team can help you make informed decisions about your care. Dietary Management: Managing celiac disease and multiple food sensitivities can be challenging, but finding a balance that works for you is crucial. Working with a dietitian who specializes in celiac disease and food intolerances can help you develop a personalized dietary plan that meets your nutritional needs while minimizing symptoms. Stress Management: Chronic pain and health issues can take a toll on mental and emotional well-being. Finding healthy coping strategies to manage stress, such as mindfulness, relaxation techniques, or engaging in activities you enjoy, may help improve your overall quality of life. Remember, you're not alone in your journey, and seeking support from healthcare professionals, support groups, or online communities can provide valuable encouragement and guidance.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
×
×
  • Create New...