Greg, what were your symptoms & gi issues due to the food allergies, etc ? Thanks for your story.

Hi there, sorry to hear that you have been struggling. We suggest checking out this video on probiotics: https://healthygut.com/2012/11/probiotics-for-inflammation-when-things-go-wrong-and-what-to-do-long-term/ as well as this one on digestive enzymes: https://healthygut.com/who-needs-digestive-enzymes-and-how-to-take-them/

Taking Betaine HCL with protein foods helped has helped my constipation. Also, you may want to look into L-Glutamine.

Lori, I simply had to respond to what you’ve been through. I am 60 years of age and have recently gone gluten-free and basically following a Paleo diet style.
I have improved, but am researching the SCD, due to recurrent flare-ups.

I took care of my mother who died at 91 yrs and had come to realize that our digestive ills and symptoms were much the same, although I did not realize it at the time. And did not realize what the problem may have been til after she died.

My mother experienced the very same catatonic state you’ve described with your daughter. She had also been in that state for over a year around the age of 18 years, according to my grandmother. She was diagnosed and treated over the years as manic depressive/bi-polar,etc…she had been institutionalized also during her 20s and 30s off and on for the same reason. Each time she “woke up”.

During the last 2 years of her life, she developed this same state of immobilization, as though she was “moving through glue”. She was unable to walk, talk, or eat without assistance. The doctors all said she had severe depression. But, that never felt like the correct description of what was happening. No doctor was able to explain what was happening each time.

She stopped eating, all but soup and jello and improved, or perhaps it was the anti-depressant? I don’t think we will ever know. But, I do know she suffered from digestive issues and a connection was never made. But, I think there was one.

She “woke up” and at the time of her death, was mentally and physically capable, for which we are grateful…
I believe she was an undiagnosed celiac with mental and physical manifestations. Each time, she basically chose not to eat and with fasting, she would improve. My heart goes out to you, for all you and your family have been through, sending up some more of those prayers!

Sandra

have you tried digestive enzymes,probiotics, the HCL and magnesium citrate in evenings for constipation?

Well I’m glad your seeing positive changes, at this point the most support we can be is at a 1-on-1 level. If you’d like to work with us please sign up here https://healthygut.com/consulting/

Hi Lorie,

Last year( Feb. 2012) my husband became so sick I did not know what to do he was having all the symptoms for Celiac Disease but GI Dr. did not believe he had
it. While going to GI. Dr. We found a Dr who does Functional Medicine told us
that he had CD and Gluten Ataxia after doing a bunch of tests which was affecting his brain He was home from
work for seven months and he is back now. I think you need to find a dr. who does Functional Medicine to help your daughter while using the SCD diet. There
are doctors in every state. Hope this will help you.

Sylvia

Janis — I’d love to communicate with you about your daughter getting off of mercaptopurine. My son, born 2004, has been symptom free with the SCD diet and is taking 25mg. of mercaptopurine. I want to try to take him off, but our doc advises against it (of course, right?). I need advice! Thanks! Please feel free to contact me at traceyfleger at yahoo dot com.

Thank you so much Samay, you’re wonderful!

Jordan

Until I was 22 years old, I was in extremely good health. I rarely got sick–never more than a cold a winter. I had never had acne, environmental allergies, insomnia, asthma, etc., in my life. I did not even have a GP because I went to the doctor so infrequently. There is no history of autoimmune diseases on either side of my family in living memory. I grew up in a place with an active local food movement and in a family that cooked from scratch daily, so I ate well, too.

My health changed radically and suddenly when I was bitten by a tick carrying Lyme, babesiosis, and erlichiosis while on a four day hike in the late fall of 2008 with some friends. I had a horrible “flu”–the first sign of Lyme– but I was told that it was just a virus by a nurse practitioner, so I did not take antibiotics for the disease. I was one of the sixty percent who did get a bulls-eye rash–or, if I did, it was likely on my scalp where I could not see it. It took me a year and a half to finally get a diagnosis of Lyme disease through CDC positive bloodwork. During that time, I, the person who never got sick, was diagnosed with celiac, Hashimoto’s/Grave’s–and a slew of other problems. I had fevers, sometimes as high as 104 degrees, on a regular basis for months. My joints and muscles hurt, and I was very fatigued; I felt “ill all over.” My doctors thought I had thyroid cancer, because my thyroid was swollen, or a tropical disease, like malaria or dengue, picked up from the months I had spent traveling in South Asia.

Lyme is extremely dangerous and requires intensive treatment. See underourskin.com for more information. When I was finally diagnosed, I had to take an entire year of antibiotics–10-12 different antibiotic pills per day. I really had no choice; it was, in fact, the first time I had taken antibiotics at all in over ten years.

Fortunately, the treatment worked, healing me from the Lyme–and I would do the same treatment again in a heartbeat if necessary (even if I knew it would give me GI issues)–but it left me with a case of SIBO, indeterminate colitis, and gut dybiosis–even though I was eating a sugar-free diet and taking probiotics. My entire face, especially my chin, was covered with acne; my hair fell out; reflux made it painful to swallow. I had horrible GI problems; it hurt to even put a blanket over my bloated stomach when my symptoms were flaring. I was very fatigued.

The SCD started to heal me immediately. Anyone on longterm antibiotics should follow GAPS/SCD while taking the drugs; that alone would have saved my gut health–and I had wish had known about SCD during my treatment! Recently, I had a bifidus overgrowth caused by a naturopath who tried to treat my SIBO by giving me bifidus. No one with serious GI problems, like Jordan and Steve say, should take bifidus at all; it made me sicker, causing me to lose weight due to malabsorption, my Vit D and iron very low. Even acidophilus made me very sick when my SIBO was at its worst, and my medical doctor recommended that I stop all probiotics, as they were effectively getting stuck in my small intestine, not making it to the colon, fueling the SIBO fire. I turned the corner on my SIBO when I stopped all probiotics/fermented foods for three weeks and then did a two week course of rifaximin. (I was offered neomycin, too, but my doctor told me that it is in a class of drugs that can cause permanent hearing damage, including sudden onset deafness, so I would recommend trying rifax, cipro, bactrim, etc., first.) I take 10-12 Peppermint Plus pills per day from Enzymatic Therapy for maintenance; they’ve worked very well. I have been on a very strict form of SCD without the Four Horsemen for about five months now. I have found that I can tolerate greens, kale and chard, with no problem–and I’d recommend them early on if tolerated even if they are usually introduced in later phases of the diet. I drink a quart of bone broth per day. I still do not take probiotics, instead eating sauerkraut or drinking kombucha (though not SCD legal, it has been extremely beneficial to me). Eat as much fat as possible; if you cannot tolerate coconut oil, as I cannot right now, try duck fat with some salt on it. Make avocado smoothies (two avocados, honey if tolerated, mint leaves) to take to school or work for a snack. I have found fermented cod liver oil to be very helpful–and my Vit D level looks great since I started taking it; I absorb it much better than Vit D pills.

The SCD is working: all of my tests look much better since I started the diet. And, the most important thing I’ve learned: Keep the faith–and know that the diet is bringing true healing!

I appreciate you and enjoy connecting. Keep re-engineering your health!

Jordan

I truly feel that both of you have saved my life.

When I was diagnosed with Crohn’s disease last January, I was very sick. I had had unremittant diarrhea, abdominal and joint pain, rashes, fevers, and vision loss. My gastroenterologist offered me Remicaid, saying that diet had so bearing on my disease. Her quote to me was “I wish that I could tell you to stop eating broccoli and that would cure your disease”. I refused her treatment plan and walked out of her office knowing that there had to be a better way.

I started the SCD the following week and followed it with strict adherence. However, after being on the diet for 10 months, I was still not feeling well with frequent flares. I was about to give up- I had even made an appointment with my physician to talk about a round of steroids. I was devastated.

Then, my husband found your website through a link on a Paleo site and I was hooked. I read your blogs, followed your phasing charts, eliminated the 4 Horsemen, and started on multivitamins from GI ProHealth. My health turned around! Elaine’s work has been important to so many of us, but you have written the missing chapters- the chapters many of us need to succeed. I believe that you have given hope to those of us who just needed a few tweaks. I appreciate both of your hard work and dedication and a simple *thank you* cannot fully express the gratitude that I feel!

I practice acupuncture and Chinese medicine and I look forward to your book coming out in hard copy so that I can give it to people who have digestive problems!

There are many more details to her story, such as the many frustrating interactions with conventional medicine doctors who thought I was crazy, what we believe was an overdose of pharmaceutical drugs, to the fact that she has complete memory loss still. She doesn’t remember her childhood, what happened last year, or anything else beyond about a day. If you want more information just let me know.

Well this was my experience UC for three years, drugs became ineffective, loosing weight, looking thin, gaunt, finding work difficult when you need to go to toilet 10-12 times a day. Started looking for something else…being on strong medications at age 33 didn’t seem right. My prayers were answered in finding SCD. Treating the cause not so much the effect seemed rather logical.
Week 1 was tough – symptoms got worse, migraines, felt tired and lethargic. Week 2 symptoms the same however, my mind was much clearer, that brain fog thing is real. Initially, had nasty experiences with yogurt and probiotics. So 1 teaspoon of nut then goat yogurt for weeks. Started taking full cream raw cows milk yogurt (unpasteurized) an noticed and immediate benefit. Was also taking some of the supplements that Jordan and Steve recommend.
Anyway wont bore you, but progressively got better to the point where i feel normal again…or perhaps better than normal. This diet has been hard work, expensive and definitely worth every cent, every craving as I have learned to appreciate good health and good food. As for the guys at SCD Lifestyle, just want to say THANK YOU for being a great encouragement; your books, website, podcasts and resources are invaluable.
Cheers,
Andy

For me personally, the SCD took me from an intolerable life of pain to a pain free, happy, greatly reduced state of symptoms- life. It’s the treatment that worked the best for my IBS/SIBO, out of hundreds of excellent remedies, excellently chosen by qualified doctors. SCD is the bomb! It didn’t “cure” me completely, but I have no complaints and only gratitude for the immense reduction in symptoms, increase in health and increase in control it’s given me.

After going through multiple trips to the GI doctor to only have them poke and prod all over to tell me that I was perfectly healthy, I was about to give up. I found the SCD diet after a particularly difficult digestive situation and decided to jump into it. I feel as though sticking tight to the diet was able to rid my body of the bad influx of bacterium. I am now achieving perfect “digestion” and could not be happier.

Sticking tight to the diet has allowed me to become much healthier! I can even report that the amount of foods that I am allergic to has drastically reduced, I believe in part to the diet.

What I would like to suggest instead for your book, is to enhance the SCD regime. I started out with SCD, but it was Paleo-ketogenic (+goat/sheep dairy, only butter/cream from A1-casein cows) that brought me closer to being 100% asymptomatic. SCD gets the basic right, but it’s missing out by not insisting on ancient healthy foods. SCD is all about removing, not adding. GAPS is going a step further by adding bone marrow broths, but still it doesn’t go as far. For example, no matter what Mrs Gottschall said about kefir, goat kefir is 5-8 times more potent than yogurt, because its kind of bacteria/yeasts actually colonize the gut, while yogurt’s strains are just passing through. And SCD going all against on yeasts is not correct either, kefir’s yeasts *are* healing. SCD also goes bat-shit crazy on some products for including a tiny bit of sugar (e.g. balsamic vinegar), but it doesn’t care if we eat fruits and honey! There are discrepancies on the diet, because it’s simply an old version of a healing diet. Things are missing from its suggestions to help heal the gut faster, including various foods and even supplements (the vast majority of westerners are deficient on both D3 and Mg, no matter what diet they’re following for example!). And of course, the importance of NOT eating much flour of any kind (e.g. almond, coconut etc)!

So that’s the kind of stuff you should be updating on the book IMHO. There are valuable lessons to learn from GAPS, and hard-core Paleo, Primal, and Paleo-ketogenic diets. Re-chewing what Haas and Gottschall were saying will only get you 80% of the way there, the rest 20% must come from newer research.

Another thing that kind of surprised me in the SCD “community” is that most of the dieters believe that all they have to do is to follow the diet for 1-3 years, and then they will be cured, and go back to their old eating habits. When I started SCD in Sept. 2011, that was my frame of mind too. While researching more, and especially since I started delving in to Paleo reports and articles from Paleo doctors, I realized that this can’t be the case. Gluten, and especially the US variety of uber-selected wheat that includes what’s now called super-gluten, will damage the gut within weeks after starting eating wheat/grains again (even if you have been seemingly “cured” by following SCD for years beforehand). So I think it’s important to make it clear to your readers that SCD, Paleo, or whatever, must be their lifestyle for life. I personally do not believe that adult people can get their gut back to how it was when they were 10 years old. For kids it might be possible to acquire the right enzymes to break down the US gluten, but for adults, it’s unlikely.

Jordan and Steve, as always, your support through the SCD Lifestyle has been at times the connecting thread to a continued road to health. Your responses to my many email questions have been a blessing. YOU have made a difference in one child’s life – our daughter’s.

Our daughter, Marisa, was diagnosed with Crohn’s disease seven years ago (at the age of 7). Elaine Gottschall’s book Breaking the Vicious Cycle was given to us when she was first diagnosed. It was set aside, read years later, set aside again, and finally put to the test a little over two years ago – full throttle, with 100% adherence, and of course a few mistakes along the way.

Starting the diet was out of love and desperation. Marisa was having too many flares requiring the use of Prednisone too often each year with 6MP not keeping the disease in remission. Her GI doctor, whom we respect, let us know changes in medication needed to occur, however when we did the research on the meds being suggested, we were scared. We felt the side effects of the medications would be more harmful to our daughter in the long haul, especially since there are no studies on these medications done on children at this time. We met with her GI doctor and asked that she give us a chance with this diet. We told her we felt that we could not place her on these meds at this early age in a life-long disease, without first trying something we felt might have a chance to work. With great reservation, her doctor agreed, as long as we kept her on her 6MP as a cushion. We plunged in – two fulltime working parents, four active children, and one mom who DOES NOT LIKE TO COOK – ever!

I could make this story even longer, but let’s just say that at first we felt overwhelmed with the preparation, marketing, planning, and the incredible amount of dishes to be done. Did you know kitchen counters get full of washed dishes when you cook that much? I had owned a cooking thermometer for twenty some years – it had never been used! Well, it was about to be my number one friend with that yogurt! I must admit, we chose to make this a commitment for one year, no turning back. We spent one day a week running around to three different markets and cooking all day. It meant saying no to other things, but it also showed us priorities. With the help of SCD cookbooks, websites, and a friend who is an amazing cook who I would call with my non-cooking brain questions, we did it! Honestly, two years later, it gets easier. That overwhelming feeling is gone. You get in a routine, you know what works, you figure out what does not, and you freeze a lot when you’re fulltime workers. Marisa takes SCD lunches to school, to sleepovers, and has even been able to remain on the diet while attending a local summer camp for children with chronic diseases (of course the camp allowed us to bring in all her food).

Now for the twist in this story and a time of doubt; the past six months have been a down hill spiral with her health. About six months ago we asked for Marisa to be taken off all medications. Her GI doctor works out of a research hospital and conferred with the other doctors on staff and gave us the green light. Unfortunately, doctors themselves do not know enough about the diet and even the best, which hers is, are not quiet sure how to go about this. As soon as she came off the 6MP she had one of the worst flares she’d ever had, getting down to eighty-seven pounds and being hospitalized with heavy doses of steroids again. We kept her SCD diet while in the hospital, bringing all food from home. Took her home with oral steroids and back on the 6MP, but we didn’t give up on the diet. I did and have been doing extensive research on how to wean off the medication and journaling foods. We would try again to wean her from meds in a year or two, but we would not give up on the SCD. The doctors agreed she’d had not one flare while on 6MP and SCD in a year and a half, so why take her off SCD.

A month ago, another road block in the journey; Marisa ended up with appendicitis, which apparently is extremely rare for a patient with Crohn’s to get appendicitis, again hospitalized. However, due to the Crohn’s and results of a CT scan showing a very inflamed ileum, surgery was not an option. Her appendicitis was treated with IV antibiotics and then oral antibiotics. Once home, follow-up doctor visits let us know the prognosis did not look good from test results. They would need to do an edoscopy and colonoscopy to see the damage to the ileum (the same area she has Crohn’s each time). The options seemed bleak. Doubt. Is the diet working? Such a sacrifice for a fourteen year old girl – was SCD worth it if her ileum is that damaged? Doubt.

After the procedure, her GI doctor took me in the consultation room and smiled – (I think she cares deeply about our daughter) I knew all was good. She said she even called the surgeon (the one who treated her with the appendix) to confirm the CT scan results and confired with the radiologist who read the results to make sure the CT scan was correct. Her doctor said that of all the Crohn’s patients she’d ever had, Marisa’s colon and intestines were the healthiest she’d ever seen, even the area of intestine connected to the appendix was healthy. A week later we met with the surgeon for a follow up visit. He said that because her case was so rare, it was discussed extensively among the doctors there and all the doctors agreed that with the results of the CT scan and an inflamed ileum, none would have done surgery.

Now the question remains – how could this be? How could intestines heal so quickly? Was it the appendix causing inflammation or the inflammation causing the appendix? I guess we’ll never know. I think my dad said it best; maybe this needed to happen so that you could see that the diet is working. Maybe it was the confirmation you needed to let you know to go on. Maybe, just maybe, it was prayer, faith, and commitment. It just so happens that Marisa had had an endoscopy and colonoscopy right before starting the SCD due to all the complications of the disease at that time. I remember those results – many polyps, ulcers, inflammation — diseased. Not this time – clear, pink, beautiful. Her brothers say it best, “Hey, Marisa, I hear you have a good-looking butt!” Of course, they’re referring to the doctor’s comments of the endo/col results, but that’s what family is for.

Our journey continues. She’s not off meds yet, but we’ll try again, differently, stronger, with more knowledge, but we are NOT giving up on SCD. Thank you Jordan and Steve, for a forum and a place to offer support and learn. SCD has changed our lives. It has given us life.

Side note…I actually like to cook now. Never in a million years did I think I would ever say that – neither did my family!

But, I went for my sister and I was so desperate I would have tried anything at this point. The nutritionist told me about SCD. She first took me off all grains, sugar, and dairy. After about a week (learned later about the yeast die off) I felt so much better. I bought Breaking the Vicious Cycle and it has become my bible. It has been a year since I have been on SCD and I am feeling so much better. I don’t get anxiety anymore about traveling places and don’t have to plan my day around a bathroom. While I have my rough days here and there, it is so much more manageable. I have gone off one of my medicines and now only take something in the morning. I also have a thyroid disorder and interestingly enough, this past fall, my doctor checked my blood levels and my thyroid is also doing better. I had to lower my dosage of thyroid medicine for the first time since I was diagnosed at 16! (15 years ago).

I used to only believe that you take the medicine the doctor gave you and that there were no other options. I have to admit I was very skeptical about SCD but I was so desperate, I was willing to try anything. It has changed my life and I have also seen the other benefits from this anti-inflammatory diet. I am a total convert and tell everyone I know about this diet. I actually don’t call it a diet, but a lifestyle. For me, there is no getting off this diet. This is how I will eat for the rest of my life.

And THANK YOU Jordan and Steve for helping me tweak and understand the SCD lifestyle. You have helped me customize my SCD so it works best for me. So appreciate all the work you put into your blog and books!