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.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    2. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    3. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,416
    • Most Online (within 30 mins)
      7,748

    Heather8280
    Newest Member
    Heather8280
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
×
×
  • 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.