SCD Family Stories

We started as a single family, isolated, struggling to find a solution for pediatric Crohn’s. As we began mentoring other families that had ill kids and were interested in the SCD as a therapeutic diet, our personal story expanded to include their stories as well. At first we used to invite each new family to our home so that they could learn in person how to start the diet and how to make it work. The number of interested parents increased weekly. We would come home and find phone messages on the answering machine, or wake up and find emails from desperate parents. To help address the growing need, I started periodic group mentoring sessions, but this did not help parents that lived far away. Reluctantly, I had to overcome my technical gaps and my strong need for privacy, and in 2014 I started a closed group on Facebook to support parents of IBD children and teens. The group is called SCD Families. These are just a few of the emails and messages sent to me during this time.

Identifying details have been removed to protect the privacy of IBD patients and their families

Hello Tali! One of the nurses at Seattle Children’s GI clinic graciously gave me your email address and your SCD plan. My daughter was just recently diagnosed with Crohn’s and spent 9 days at Children’s last month. I am very interested in pursuing this way of eating for her, as I want to avoid flare-ups and the use of steroids as much as possible. My biggest challenge is encouraging a teen to stick with this, when I know she wants to go eat pizza with her friends! My other challenge is making time to shop and prepare food, as well as teach her what I know so that she can transition into planning and preparing food for herself. We would love to learn more, and the information on your plan and the book ‘Breaking the Vicious Cycle’ (loaned to me by a friend even before we got the diagnosis!) have been a great start. Our family has already been avoiding gluten and a few other foods that we have allergies to, for some time now. Thank you for sharing your material and your email address! Take care, K.

Dear Tali, My daughter is a current patient at Seattle Children’s Hospital.  Her doctor believes putting her on the SCD may heal her digestive distress. She has been diagnosed with Collagenous Gastritis and has a severe amount of gas in her digestive tract.  Last summer the Collagenous Gastritis was so bad, she became critically anemic and required 2 units of blood.  The ulcers have healed, but her tummy is still not happy. The doctor believes it is due to a buildup of bacteria that has taken root and won’t let go. He has given me your name as a contact to help guide me in this endeavor. I am definitely in need of guidance!  I don’t want to start the diet without talking with someone. Please call me at home or let me know when I can call you. Thank you so much for your willingness to help.  I appreciate it greatly! Sincerely, J.

Hello there Tali, Thank you so very much for your return call.  When we spoke in January, my daughter was starting to regain a healthy balance after a very sudden set back. Unfortunately, that did not sustain.  She ended up with an increase in her CRP numbers ( 5.8) and blood in her stools. We have been doing most of the SCD for 3 years and have not had any flare ups. We had not been on any medications except Krill supplements, aloe juice and L-Glutamine.  This took us by surprise. We “surrendered” and went with prednisone, Apriso and VSL #3 due to 105.1 temp and a 3 day hospital stay in February. Her PH levels are indicating she is acidic as well.  (not sure the medical world takes this into account as being a concerning factor but I have had to manage mine to keep them balanced). This past Monday we had a colonoscopy which did show sores, irritation and inflammation.  Her previous one over a year and a half ago was clear and beautiful!   Her blood work did NOT show a decrease in CRP numbers and we are not thinking any further medications will benefit her. She is stable (decrease in pain and no evidence of bleeding), so we are working to reduce her medications and get back to baseline with diet control. I would greatly appreciate any guidance you can provide. I had given my Breaking the Vicious Cycle book away to a friend, so I ordered a new one yesterday.   At this point I am not 100% sure what the bottom line diet consists of as I have also been reading the Maker’s Diet. I have been humbled greatly by this recent set back as I thought we were right on track to keep this at rest.  Any further resources you are aware of would be greatly appreciated.  You time is valued. Blessings, V.K.

Tali, Thank you for your prompt reply.  I do agree with your statement that “practicing SCD most of the time” is like saying “I take my medications sometimes”.  I truly thought we had things under control, as doing “mostly SCD” was working.  Even at her colonoscopy last year her lining was beautiful.  We will be tightening up. Three years ago I was in tears as we ventured out to research and begin the changes of SCD without our doctor’s belief it would work.  I am thankful that now the doctor from SCH connected us with you.  V.

Tali, Thank you so much for sending these links.  We met with our doctor today, and they are starting a clinical trial for the SCD diet (can you believe that?).  They did a small pre-trial last year, and they had a 100% success rate for the nine families that completed the yearlong trial.  They are going to let our family be part of the new and larger clinical trial.  Your support was very timely.  Next week I’ll be meeting with the nutritionist that guided the other families through the process – so I’ve got lots of research to do.  Thanks again for contacting me so quickly, and for being a support – and a great source of information.  I’ll probably be in touch now and then as I work through this. M.

Hi Tali, It’s me, the lady who talked your ear off today. Thank you for taking time with me in going over some strategies for eating the SCD way. I’m excited to start fresh and feel like the timing makes sense for us. I truly am blessed like you said to have a community of friends who eat semi-similar and are just plain excited to see us succeed and hopefully get our child into remission. I’d love to take a peek at your “new to SCD” go-to sheet. Thanks again, A.

Hi, my name is B. We have a son that was diagnosed with UC in June.  He has been on just about every pill made I swear with limited success. He is currently on pentasa, pretizone and azathioprine, he also has received remicade infusions. Nothing helps much but if we take away the steroids we are in a world of hurt. We started SCD as a suggestion from the team at Seattle children’s hospital. Which is who also gave us your email.   His detox/intro week was pure hell for us all!  I down loaded a list of allowed foods on the different stages from pecanbread.com.  How long do we need to stay in each stage? If we stray and have a tomato (for example) in stage five how bad will this through us off?  We are not having too many problems with the no sugar no grains but only meat, eggs bananas and squash is killing him. I feel like the bad guy and constantly telling him no. Feeling very discouraged and helpless.  Any thoughts or advice you can offer would be appreciated.

Hi Tali, My 10 year old son was diagnosed this week with a severe case of Crhons lately.  We will be using steroids and a biological med therapy as well as, the SCD meal plan.  The dietitian we are working with provided me with your e-mail and said that you were a fabulous resource for moms like me.  I have been online looking for easy recipes and resources to help navigate the CSD plan, but I’m really having a difficult time.  Any help or thought you might have would be very helpful!  We are really struggling with snack and lunch for school ideas as well as, good recipes for dinners.

Hi Mrs. Guday, My son was diagnosed Crohns, and is going to be 12 soon. We could use your advice on starting on the SCD diet. He is tapering off steroids, finally, this is his last week, yeah!  We have noticed that his inflammation is still there and so is the pain, so we were hoping to get any info, recipes, tricks that work for your family?  Our entire family has been doing whatever new change in diet that he does to make him feel more normal, whatever it takes to heal him naturally- if at all possible.  I am curious if you do any juicing also, as that has been one of the things that we recently started to try to get more veggies and hopefully nutrients into him. I need to find recipes or snack type quick foods as that has been one of the hardest things for him. So, any information or advice on being successful with this diet would be so very much appreciated! Thanks, D.

Dear Tali, I spoke with L today to inquire about communicating with you.  I have just finished the article in JPGN published in January regarding the 7 patients on SCD.  I am really encouraged by these results and am particularly impressed with the normalization of inflammatory markers and especially calprotectin levels.  One achieving a level of 16 at 18 months, perhaps this is your child.  I am particularly interested in talking with you, as we have chosen this same path based on our own independent research.  I am a Doctor of Pharmacy and my husband an anesthesiologist.  Due to our backgrounds, we felt compelled to research this thoroughly prior to making these difficult decisions.  We were impressed with the findings of the Italian study, Borelli, with EEN and the mucosal healing that was found to be better than steroids.  Thus we requested NG tube and EEN for 6-8 weeks, and transitioned to the SCD, as it is only logical, if EEN can heal that this may hold one of the keys for positive long term outcome. Our son had tremendous healing on repeat endoscopy – only 1 small ulcer remaining, that was described as the report would have been read normal if found initially.  His f/u calprotectin was 78, with initial value of 1350.  As we move forward, I have been nervous as to what to expect, as relapse is the most common course as you know, and we have requested to forego immune-suppression.  Thus I found some relief in the longer term positive outcomes in this paper among your small group, which are quite similar to our course thus far. I would like to communicate with you further regarding your experience on this course with your child.  Also, as I understand that you have been a leader in helping others to achieve these positive outcomes, I would like to discuss with you avenues or potential to share this information in a manner to reach out to more.  My husband and I are so pleased with the success so far, but have initially felt we should have more time behind us to begin this next step.  However, when so many are in despair, perhaps we should begin our efforts sooner.  We are truly surprised since the development of this diet in the 50’s, that there has not been more work in this area.  We did find 6 small trials, each showing positive results for decreasing hospital stays, surgeries, etc.  Also it seems that we found 2 ongoing NIH trials on their website, but in looking recently I had difficulty finding them.  At any rate, it is simply illogical that more is not known, given the overall length of relative success. I look forward to communicating with you further. K.

Hi Tali, I wanted to thank you so much for making yourself available to talk to my husband and send us such helpful emails with so many SCD resources–I’ve learned a great deal from reviewing them. It seems you are something of a hero at Children’s, all the doctors and nurses seem to know of your commitment to this diet and how you have generously offered your time and knowledge to doctors and families in the IBD community!  We are very grateful for that.  After our appointment with our GI this week, we have made the decision to opt for Humira for now.  But, knowing it is likely not a long term solution, we are committed to spending the next few months learning more about the diet, trying recipes (especially treats) and preparing ourselves and him for SCD as part of our future. No doubt it will be challenging, but you have really inspired us. I look forward to attending future SCD meetings and connecting with you in person.  Thank you again for all of the information and resources, it really means a lot to us. K.

Hi Tali, Thank you for responding!  My husband and I have a great friend with Crohn’s, who told us about the SCD and Breaking the Vicious Cycle. I started the process two weeks ago, and now are fully SCD.  I have tried to include some compliant treats, as I have two other children who, I was advised, should not fully adhere to the SCD. My son will be finished with the prednisone on Saturday.  I am nervous about another flare-up. And, I’m tired. Lol  Huge learning curve for our family right now. Thanks again – C.

Hi Tali, A nurse from Seattle Children’s Hospital gave me your email. My understanding is that you have some experience with the SCD. Is your child still using the diet? I just have some questions about how you have  incorporated the diet into the family (we have 2 other kids at home). What has worked and what hasn’t?  My child had a kidney transplant a few years ago. All is doing well with the transplant, but the GI tract varies in health. I just want my child’s gut to be healthy too. Any information you have I am sure would be helpful. You can reach me at this email or call. Thanks, K.

Tali, I was fortunate to see the K. family this past weekend and heard about your success with this diet.  I have two daughters with Crohn’s and we’ve tried pretty much everything we could get our hand on.  One of my girls is in remission using Remicade now, the other has a lot different course of the disease and suffers terribly at times. I would be interested in learning more about the SCD diet and would appreciate any information you would be willing to share.  Both myself and my wife are medically educated, Pharmacist and Microbiologist, and feel very well equipped to read and evaluate any scientific literature.  Personal experiences are a plus if you can share some. Thank you for being willing to help, P.

Hi Tali:  Our conversation today was one of the best I’ve had since K.P.’s diagnosis, thank you again for granting me the time to talk to you.  I am very interested in joining your FB support group and would appreciate any resources you have available.  I hope we will have a chance to meet at an event or talk again soon.  You are a pioneer and it looks like many of us will stand to benefit from all your hard work and dedication.  Thanks again, E.

Hello Tali, My name is S.  I received your email address from my local CCFA office.  I have a son who was diagnosed with Crohns last June.  He is planning on attending Camp Oasis this summer.  I was told you would be willing to share ideas for packing SCD food for the camp.  We are new to the SCDiet and resources are limited where we live.  I would love to know what some of your child’s favorite snack foods are.  I do look forward to hearing from you. Thanks, S.

Hi Tali,  My name is M. and my daughter has UC.  She hasn’t responded to 5ASA or immunomodulator drugs and her next step in therapy would be the biologic therapy.  As parents, we don’t want her to be on any drugs if there is another alternative that might help her and work.  Our doctor suggested trying the SCD and we are definitely going that route. I’ve read Breaking the Vicious Cycle, purchased multiple new cookbooks and the yogurt maker, been reading various blogs, and loading up on specific products I’ll need when I start cooking. I’ve got some questions though and was hoping you might be able to answer them for me since it sounds like you are quite knowledgeable with the SCD.  I’m not sure if it would be easier for you to talk on the phone or correspond over email.  I’m sure you are busy so I don’t want to be an inconvenience!  I’ve typed out the questions I’ve got below and will also list my phone numbers as well.  Any feedback you could give would be much appreciated!  This is all bit overwhelming!  Questions: 1. Do you have particular brands of meat you buy for beef, ham, bacon and chicken? What are your thoughts on organic vs. organic grass fed?   2. I read that whole Italian canned tomatoes are okay since there is no added sugar, but it says puree and paste is illegal.  After looking at labels galore I found a brand called Bionature Organic Tomato Products that was suggested in one of my cookbooks as being okay.  I called the company and asked about their ingredients and they assured me there is no added sugar, salt , or processing agents—just what is declared on the label. Shouldn’t this brand be okay?  3. It looks as though I will need to buy special vitamins for this diet. Do you have any recommendations on a brand and where to get them?  Thanks in advance for any help/feedback you might be able to give as we prepare to embark on a new path for our whole family!  M.

Tali, Hi!   My son was recently diagnosed with Crohn’s.  We have seen several different doctors, looking for the best treatment option for one so young.  Our whole world seems to be turned upside down.  Our current GI highly recommended trying the SCD diet as a treatment therapy and also contacting you for info and support.  Our son has been on an elemental diet for 6 weeks.  It’s becoming increasingly difficult for him to be on a liquids only diet and he’s becoming depressed and really ready for food, so I think even though he’s not fully in remission, we’re going to begin the SCD diet. What has been your experience with elemental and especially SCD diet?  I’m concerned about weight loss.  Did your child gain and maintain remission with the SCD and do you have any recommendations for recipes or any other info. I would truly appreciate any info, encouragement, or instruction you may be able to give.  Thanks so much.

Hi Tali, My name is S. We live in the mid-west. last year my 11 years old son was diagnosed with crohn’s and we were adviced to start him on remicade which we did. I  search for information and I read about the SCD diet and immediately I put my son on the diet, he is doing wonderful, the dilemma is I’m not sure which one is working is it the diet or the remicade, I want to stop the remicade but the doctor advised against it stressing that there are no research or evidence to support the diet. Please help me if you have any information. Thank you, S.

Tali, we just started the diet for my daughter, who was diagnosed 2 years ago with Crohns. I would love it if her doctor would support us, instead he makes me feel certifiably insane. I am in the process of trying to find a new doctor. I am looking for SCD guidance and would love support. P.

Dear Mrs Guday, Prof. Suskind recommended me to contact you.  As our son was diagnosed with M. Crohn, we learnt about the SC diet. We already started the diet 2 weeks ago, however the guidelines from the literature and the internet are sometimes contradictory. I heard that in Seattle patients are offered this diet and therefore I suspect that you have internal guidelines to follow the diet (unfortunately this diet is not known in Europe and therefore we do not have any support). It would be very helpful if you could send me the guidelines or any tips and tricks on how to follow the diet. Thank you very much. Best regards, Prof. B.D., Medical Doctor, University Hospital

Tali, Thanks for all the great info so far. The doctor that diagnosed him wanted to start humira right away. I went for a second opinion. Both are Ped GI docs. My son is extremely agitated with medical procedures. Luckily he does not have painful symptoms right now. We found the Crohns because he developed a rectal fistula. After a few weeks the pediatrician sent us to a peds surgeon. The surgeon was concerned that the fistula was a marker for Crohns so he sent us to the first peds GI.  The colonoscopy showed ulcers in his small intestine. The second opinion was from our pediatrician and he talked to The GI doc ahead of time and explained what a bad patient my son is…  Have you found that the scd does not work for some kids?

It’s all very overwhelming. Every doctor and parent has a completely different opinion on treatment. I hope my son can have the willpower it takes to follow the scd. I hope I have the energy it takes. I have two other kids and a typical crazy life.

Logistically, do you make everything from scratch?  What do you do when you’re on vacation?  Can your son eat in restaurants now? Thanks, L.

My son has Crohn’s disease and we started SCD to help him in any way we can. His GI has only said that it is “a possibility” that it “might help”, but I read the Elaine Gottschall book and I believe the science behind the diet. We are trying to wean him off the biologics because the side effects have devastated his skin and he has constant pain in the cartilage of his ribcage and knees. This group was suggested to me by someone one from another FB group. Of course I do the diet as well to help with my immune system disorder (RA), and I was hoping that this would be a good resource for recipes that appeal to a young persons palate.

We have a child who has ulcerative colitis and is at risk at having the colon removed. We are revamping our diet efforts and wanted to join SCD families group for support.

Tali, I cannot begin to express my appreciation for the SCD Facebook group you created and moderate. This diet has seriously been a game changer for my daughter — so many more ways than just physical health too. It has also opened new doors and inspired me to take this way of eating and try to make it available and accessible to a wider population. , I am so grateful for you and this amazing group you have joined together. Thank you! –Stacey

My name is S. and I got your email from Lucy @ Lucy’s SCD Kitchen. We live in the UK and my child has Ulcerative Colitis. I have just started him on the diet and being from the UK, there is very little support or information. Lucy said you have a wonderful group helping parents of children on the SCD. I would love to join. Would you let me know how to go about this? I look forward to hearing from you. Many thanks, S.

Dear Tali, My child is inpatient at Seattle Children’s. He had extreme inflammation and weight loss that landed him over a week ago. He is on EEN (liquid nutrition through nose) for 7 more weeks, and is feeling depressed. The good news is that his CRP is coming down and his pain is less. We are hoping to achieve remission through EEN and to start with a diet (similar to SCD) and supplements after that. Does your offer to have your son visit with us at still stand? Hoping to talk about IBD and doing hard things like going without favorite foods. Most of all, I think my son needs to know he’s not alone. Thank you.

Dear Tali,  Thank you for the time you spent encouraging me and listening yesterday. I am so excited to talk to someone who has had success treating her child’s IBD without drugs. Looking forward to being a part of your group!