Jump to content
  • 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 Our Content
    eNewsletter
    Donate

Ultra Scd Diet--any Suggestions, Encouragments?


YoloGx

Recommended Posts

YoloGx Rookie

I look forward to the time when and if I can have a more varied diet. I just dug up the scd bible: Gottschall's Breaking the Vicious Cycle in hopes that I can find some helpful clues. So far all I can find is just having the yogurt ferment 24 hours. I have had poor success with anything that is fermented except for yogurt--though who knows, maybe by having the yogurt cure in the oven for a day or more that will help change all that??

I am wondering if anyone else here has had to go on such a restrictive diet as my partner and I have had to do just to feel healthy. Besides being off all gluten we are now off all grains and sugars as well as nuts, cheese, milks etc. and all fruit except fresh lemons (we make a lot of lemon-aide with stevia and water) plus no potatoes, tomatoes, peppers.

So--encouragement, setbacks, laughs whatever--I am interested. My buddy and I can't be the only ones on this path!

I am now just starting to experiment with making my own yogurt (again) in hopes that maybe with less lactose I will eventually tolerate eating fruit again. I can eat lemons but all else makes my skin in my groin area swell, lesion, flake and scab with a very fungal like look plus my belly bloats up again plus fruit sugars make my ears itch and flake--this happens even with unsweetened diluted cranberry juice! Not to speak of anything else, including blueberries. My room mate also gets the belly bloating from fruit though occasional cranberry juice seem more tolerable to him. Gottschall's suggestion of grape juice seems completely unattainable--I have not been able to tolerate grapes for years, let alone grape juice!

Both of us appear to be quite allergic to nuts so various nut "breads" are out. Though I suppose it might be possible to engineer something with sunflower seeds (for me) or sesame seeds (for my roomie). We both are very allergic to each others' allowed seeds however. Neither of us tolerate any cheeses at this point either. I shudder to think what cottage cheese would do, dry or not. But I suppose I should gird myself and give dry curd cottage cheese a try??

Of late we have been eating squashes (summer and winter squash) as our main carbohydrates. I now eat cucumbers as if they were apples. We also make vegetable smoothies with cucumbers, summer squash and whatever leafy vegetable we might have extra and find they give us a real energy boost.

So--any other really restrictive diet sensitives on a semi or should I say ultra scd diet out there?? Any success stories would also be very inspiring!

Bea


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



Celiac.com Sponsor (A8-M):



oceangirl Collaborator

Bea,

I am super sensitive to gluten and do better with less grains. The only grain I eat is Tinkyada pasta- I can't eat cooked rice, though- weird, I know. And I eat it sparingly. I was somewhat "scd" for about a year or more- I do think it can be helpful. But I have been able to tolerate nuts and raw sugar. My mom used to make all our yogurt growing up but I never have. I forget the reason Gottschiell (argh, her name?) says store bought yogurt is not okay; I guess I'll have to dig my book out again.

I'm sorry you and your partner are having a rough time of it; it's so annoying and sometimes devastating to have food be the enemy. I've grown fond of sweet potato fries I make myself- can you eat them? I put the oven at 400 and cut the potatoes chunky, sprinkle with olive oil and salt and, yum! I didn't eat any fruit but bananas for about two years. I think the fructose in many fruits was difficult for me to digest but now I can eat berries, oranges, lemons, watermelon and cherries. Perhaps you'll get there, too. I also had NO dairy or corn for 2 years but now eat hard cheddar and yogurt AND can put milk in coffee. I still add things back in slowly and one thing at a time with my food log for better understanding and detecting.

Sorry, I don't have anything brilliant to say, but, sending good luck and good health your way. Others will post.

lisa

Nancym Enthusiast

What you're describing is just a tad more restrictive than a typical paleo or stone-age diet. Usually we eat nuts and some low sugar fruits. Some people don't eat nightshade veggies, like tomatoes. But legumes, potatoes, and sometimes certain fruits are out.

Can you have coconut products? That opens up a lot of possibilities. Coconut milk, coconut flour (Aloha Nu, good brand), curries, etc.. If you're keeping eggs, they also make a lot of things possible. Sometimes I make a thai curry and serve it over steamed broccoli. Bread like items from flax meal, coconut flour are possible. Easiest is pancakes.

I guess you have to get the dairy experiments out of the way but do try to give it a run without dairy, even yogurt, you might find yourself feeling lots better.

Anyway, once you stop thinking about everything you've given up and start looking for new ways to be inventive you'll find it isn't really that bad.

Welda Johnson Newbie

Hi Yolo,

I feel for you and your friend! I've had "glutened" symptoms since age 8 and am now 64, but have been on a restrictive diet (no grains, milk & dairy, egg whites, yeast, casein, whey, msg. etc. ) for many years and feel so much better. The Asthma that repeatedly sent me to the hospital in years past has quieted to the point that I take three pills a day and use my breathing machine twice, and have lots of good energy, vim and vigor. The funny thing is, the more healthful I eat, the more restrictive my diet seems to need to be.

I went vegan 2 years ago (I had done the same thing a couple of times before) and began feeling so much better. From time to time I crave protein and eat a few bites of chicken or fish, then I start wheezing or having gout, so I return to fruits and vegetables again. Now when I feel depleted I usually eat a corn tortilla with beans and veggies or a chile relleno made with corn flour, salsa and beans. Most days I do great eating fresh pineapple in the morning, then a single fruit every two hours or so during the day, then vegetables at night. I'm wondering what the reason is that you're not tolerating fruits? I'll start thinking of replacements that you might be able to incorporate within your daily diet and post again later if I think of something.

This is such an interesting issue to deal with I think, because each person is so uniquely intolerant of certain foods, which someone else might be able to tolerate easily. Thank God that our bodies are so finely-tuned to let us know what to do next. I'll be hoping that you find just the right answers for you and your roommate. Welda

YoloGx Rookie
What you're describing is just a tad more restrictive than a typical paleo or stone-age diet. Usually we eat nuts and some low sugar fruits. Some people don't eat nightshade veggies, like tomatoes. But legumes, potatoes, and sometimes certain fruits are out.

Can you have coconut products? That opens up a lot of possibilities. Coconut milk, coconut flour (Aloha Nu, good brand), curries, etc.. If you're keeping eggs, they also make a lot of things possible. Sometimes I make a thai curry and serve it over steamed broccoli. Bread like items from flax meal, coconut flour are possible. Easiest is pancakes.

I guess you have to get the dairy experiments out of the way but do try to give it a run without dairy, even yogurt, you might find yourself feeling lots better.

Anyway, once you stop thinking about everything you've given up and start looking for new ways to be inventive you'll find it isn't really that bad.

Thanks you guys for your support!

Nancy, I think you are right--our diets are a lot like the cave man diet I went on years ago. Unfortunately I am very allergic to eggs and somewhat allergic to coconut. I actually overdid the coconut for a while and haven't tolerated it well since--but am hoping I will again soon. The home-made yogurt does seem to be working pretty nicely for me so far. I can tell already it really agrees with me. I personally believe that my paleolithic forebears ate clabbered reindeer milk--so yogurt isn't that far different. The theory for the home made yogurt being better is that all the lactose has been converted and in effect "removed" which makes it much more digestible--plus it gives much needed probiotics.

The thing I am hoping is that by going on more fermented things I will gradually be able to tolerate fruit sugar. So far, bananas are very out since they are so sweet!

Bea

mysecretcurse Contributor

I'm gluten/dairy/soy/chickpea free right now.. sorta corn free too but I'm not very strict about it. It doesn't cause me breakouts but I've heard it can slow down intestinal healing so I cut most of it out for awhile. I still eat rice chips that have corn flour and stuff in them sometimes though.. same with soy. I'm not sensitive to it or anything I just don't think it's a good food that is meant for human ingestion. But I still will have gluten-free soy sauce here and there. Chickpeas are as bad a reaction as gluten for me.. don't know why. Large amounts of Dairy makes me bloated and makes small breakouts on my face but I'm only a couple weeks dairy free at this point so I will see how I do later on, at some point I'd like to try goats milk/cheese, see how I do and then maybe add back in regular cheddar cheese and yogurt again.

I don't know. It's really hard. I feel like I'm having to cut more and more out in order to stop the reactions. When I first learned about celiac I read that sometimes celiacs get less sensitive once they heal and some of them can even occasionally eat gluten again (I can't recall where I read this but I've since decided it's total crap and terrible advice), but this has not at ALL been the case for me. Now I seem to react to almost everything that could possibly be an allergen and I swear, if I were to actually eat a piece of bread or something I'd probably go into shock and die. I was almost hospitalized and spent like a week in bed last winter after consuming a plate of Tyson chicken which I was told was gluten free... I was shaking, my body temp dropped and I was freezing cold all over, vomiting, etc.. it really scared me.

I am lucky though, compared to how many sensitivities some of you guys have.. man, I'm so sorry *hugs*.. I am blessed in that I can eat eggs, rice and beans still.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,913
    • Most Online (within 30 mins)
      7,748

    patanddiane
    Newest Member
    patanddiane
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.