What I wish my doctor knew about SCD (or similar diet therapies)
We adopted the Specific Carbohydrates Diet following a Crohn’s diagnosis of our youngest son. He started the diet when he was in elementary school, and now, years later, still continues to follow an SCD-based diet as a college student. His diet allowed him to have an active and happy childhood, free of IBD worries and without medications. Throughout this time he was monitored closely by the wonderful GI team at Seattle Children’s Hospital to ensure sustained wellness. Fortunately, his doctors were open-minded scientists and he became the prototype model for what is now a growing diet-therapy program at Seattle Children’s Hospital. This program is led by Dr. David Suskind and named NiMBAL (Nutrition in Immune Balance).
Nowadays, the rest of our family is also benefiting greatly from diet therapies (we use SCD combined with principals from other diet therapies, to tailor and optimize per personal needs of different family members). We are fortunate and grateful for the ways diet therapies helped us, and continue to mentor hundreds of families who use diet to manage pediatric IBD.
We are happy to see the growing awareness to diet therapies among the pediatric GI doctors, and happy to have had the opportunity to be a catalyst to this revolution. Our focus is now shifting to concern about the resistance and denial among adult GI doctors that are still telling patients that there is no link between diet and IBD.
In the coming months, we have several opportunities for open dialogs with leading gastroenterologists, and we would like to plant more seeds to improve the acceptance of diet therapies. For this reason, we would like to gather thoughts and experiences from our community.
Please share your thoughts. What do you wish your doctor knew about SCD? Did the diet help you? Who is your support system when it comes to diet? How could your doctor help?
The SCD helped my husband after being diagnosed with severe UC gain remission ! We truly believe in this diet! His GI wanted to start him on Remicade asap but we took things slow by healing thru SCD foods. His GI doctor was amazed by his recovery, although he was one that said diet has nothing to do with UC, but encouraged my husband to keep doing what he is doing.
My husband uses SCD to manage Crohn’s Disease. Obviously, he’s not a pediatric patient but I think it’s important to show that SCD is working for him as a 68 year old man. John’s had GI issues most of his adult life. We happened upon the SCD by sheer luck; I was listening to a podcast that mentioned it. It has been a life changer for him! He no longer suffers severe cramps and GI pain, he no longer deals with the embarrassing issue of urgency, he no longer suffers severe diarrhea and, surprisingly, he no longer has near-constant headaches. John’s been able to reduce his medications and he now feels completely normal in regards to his GI system. And the best side effect of using the SCD is that he is a happy man once again! We are able to travel extensively which was not possible before SCD became a part of his life.
John’s GI doctor was initially very skeptical of the diet, and in fact refused to discuss it. After seeing the results and with reduced medication, the doctor has finally seen the light and is now open to the fact that SCD is helping John manage the horrid symptoms of Crohn’s.
After 2 years, John started cheating on the diet and his symptoms returned worse than ever. He restarted the diet and quickly brought his system back into balance ;the symptoms once again disappeared. He knows he will be on SCD for life and is grateful for it.
We have hopes that more members of the medical community will open their minds to the possibility that SCD can make a life changing difference in the lives of some people suffering from Crohn’s, IBS, UC and other GI problems.
Thank you Ann, this is good news in my book! Your husband paved the way, and now other patients of his GI doctor will have an easier time when they ask to try the diet option 🙂
First, I wish the nutritionist at our GI office was trained in SCD – How it works (theoretically), what foods are legal and illegal, how to create a balanced diet with legal foods, what nutritional deficiencies were common on this diet and how to combat them with food or legal supplements.
The following comments are not directed toward our GI who is supporting our effort to try SCD even though he is not well versed in it, but instead to comments I have seen on the Internet from experts and from families who have been met with resistance to diet.
I wish doctors would stop dismissing diet as having no role in managing this disease. I don’t want to hear from any doctors that if you take the right medicine you can eat whatever you want. I don’t think a doctor should advise anyone, healthy or not, to eat whatever they want. Eating healthy should be a basic function of staying healthy whether you are currently sick or not. What diet is best may be different for each individual, but telling a child they can eat whatever they want likely won’t lead to anything good.
I wish doctors would stop referring to people seeking dietary maintenance strategies as being delusional or unrealistic. Most people looking to manage illness with diet don’t mean to do so to such extreme that they would allow themselves or their child to stay sick or get even sicker. Most will use diet in conjunction with medications when the medications are truly needed, but want to use the diet to reduce that dependency, and of course to eliminate the need for meds if that is possible, and just to be as healthy as they can be in general. People who look to alter their diet in response to illness tend to be educated, intelligent people and should not be belittled or insulted in such a way.
I don’t ever want to hear a doctor tell me not to bother with diet because diet doesn’t matter. If diet doesn’t matter, then trying a healthy diet certainly can do no harm. And eating healthy is always going to be a good thing even if it cannot manage the disease itself. So no doctor should ever discourage that. They may not believe it will help, but they certainly cannot believe it would hurt (if done properly and meals are well balanced), so why be so outright against trying diet?
I wish more doctors would be more willing to consider diet as part of maintenance. Even though there is no guarantee that diet will work – the same is true for every medication out there meant to treat this disease. On the other hand, the diet has absolutely no adverse side effects. So why wouldn’t you encourage trying diet first? And if one’s condition is so severe that medical intervention is needed immediately, then there is no harm in using diet along with the medication.
I wish the doctors that believe SCD works but believes it is too hard to recommend would stop doing that and leave that decision up to parents and patients. The diet is very difficult, it is true. It is very expensive. It is very time consuming. It is very restrictive. It is very emotionally challenging at times. It is not for everyone. But it is not for our doctor to decide that we cannot handle those challenges. Our doctors should always let us know what our options are and let us decide whether or not this diet is too hard.
I wish doctors would stop thinking about SCD as an elimination diet that can only treat symptoms. Elimination diets remove foods that cause symptoms. SCD does incorporate this aspect, but this is not its primary purpose. SCD is meant to change the gut microbiome by banning foods that feed bad bacteria. I wish doctors would try to understand these concepts before they dismiss SCD as an elimination diet.
I wish doctors would be aware of all of the studies that have been done on SCD and their results. I have yet to find a single study that concludes SCD had no effect on maintenance of this disease. All of the studies out there have found some type of improvement for some patients on this diet (improved symptoms, freedom from drug use, reduced dependency on drugs, and/or mucosal healing). The studies are small in scope, but the fact that every study comes to similar conclusions is significant.
I wish that doctors would consider SCD as a natural next step after EEN. Most doctors know about the effectiveness of EEN, but it is not widely used in the US. I think this might be due in part to the fact that while EEN is effective at inducing remission, it is not particularly effective for maintaining remission, and PEN has not been shown to be as effective. If you can get into remission without drugs, but have nowhere to go from there but to drugs, then EEN becomes less attractive. SCD is the perfect next step after EEN – a way to maintain that remission without drugs or with reduced dependency on drugs. And I believe that it is easier to start SCD when in remission, so preceding SCD with EEN works well and gives families time to learn how to live the diet before their child is dependent on it.
Amen!
I join you in wishing all of the above. I am thankful for a community of informed and highly educated IBD warriors that strive for the best medical care possible. Our doctors are listening, and gradually will have to get on board.
Tali, you are fulfilling one of my wishes, which is that doctors could have a way to hear the stories from parents whose children have improved dramatically on the SCD. Not everyone meets with success, it’s true, but it is impossible to explain the improvements that so many children are having on the SCD and still maintain the stance that diet does not contribute to healing. I am so tired of hearing that the diet is too restrictive and impacts quality of life too much. The symptoms of IBD are far more restrictive and damaging to quality of life than having to do a lot of cooking. My doctor could help by establishing a protocol of monitoring my son on the SCD–helping us introduce foods and tweaking the diet–as most families on SCD are having to go it alone (with the help of the facebook community you created!).
Hello everyone,
I have a 15 year-old son with Crohn’s Disease diagnosed 2 years ago and he has been on Steroids and Humira 6 months and 18 months. He had latest MRI and Ultrasound done, he has enlarged liver, kidney cyst and his ileum (which was the inflamed portion of his intestines) as sick as it was before. From day one, his doctors did not recommend any diet change. They said he can eat anything he wants, doesn’t matter. I kept asking, questioning with no luck. 6 months ago when I pushed again his GI mentioned SCD, but he said it would be hard for me and he wouldn’t want to do it-in front of my kid! Of course he didn’t, he thought taking his medication would solve his problem. It is impossible to work with a GI who rejects diet & immune system connection. I was recently diagnosed with Gluten sensitivity, and my son also was diagnosed after blood tests. His GI refused that stopping gluten would help. I said “if SCD is difficult, he can at least stop gluten”. I told him I was his mother, there is a genetic connection with Crohn’s and I was symptom free after taking gluten out of my diet. He said he couldn’t recommend stopping gluten because there is no data to prove it would help!!!! I said “but there is no harm in stopping and it might help”… I am so frustrated with doctors who think they don’t need to do anything beyond medication. When my son was hospitalized, they gave us 3 medication options to choose after steroids: Remicade, Humira or 6MP. No diet was mentioned. They said there is a liquid diet option instead of steroids but it is very hard to do (indeed it is, drinking 9 bottles of Endure which is full of sugar, and illegal in SCD!) afterwards he had to take biologics for life. Seeing his decline this time around my son was scared and decided to do Ensure, but couldn’t go on more than 10 days. Then he reluctantly agreed on SCD. I have to tell you, we are in the first week, and usually he would have a temperature when he ate (during flare ups) but not now even though he is inflamed. There are so many recipes out there it is not hard to do at all. My son is not happy that he is on SCD, but we are all hopeful that it will work. I am now worried that his GI will be reluctant to take him off of medication once he is better because they don’t accept SCD as the solution. I am in the process of bringing him to another doctor (I wanted to change his doctor from day one but my son refused to go to another doctor). Because of the steroids, he has acne scars on his face for life, and because of his acne they wanted to prescribe Accutane. I refused. I don’t t know what condition his liver would be if he had taken Accutane for a year on top of Humira…When they told me his diagnose, they said they don’t know what causes it, there is no cure. And I said “but you think you know what helps him and it is this drug?”. and they said yes…I said “but his GI issue is a symptom resulted b/c of his immune system, why are we treated by just a GI” I always thought his immune system should have been number 1 priority and unfortunately it is not. They told me that he was in clinical remission (I think b/c his inflammation markers were normal at the time) I said “he doesn’t look like a healthy child, there is still something wrong” And there was. Humira was basically repressing the symptoms we didn’t realize he was still very sick. Inflammation markers could go up b/c of other reasons, so his GI waited, tested again, waited tested again etc. I can’t believe we wasted 2 years, during his growth years…I still can’t believe SCD is not explained to everyone who was diagnosed. It will be especially easy for young kids, they would get used to the diet with no problem. Thank you for this article and I hope my comments help. I am thankful for Dr. Haas and Elaine Gottschall for creating SCD and making it accessible for many people. It took one doctor and one mother to help millions!
I use SCD to try to keep Crohn’s disease at bay. My doctor won’t discuss diet only biologics. He doesn’t care to know anything else. I have no support only myself. Hubs and family do not cook or shop SCD so I either bring my own food or eat very little or cheat. I wish diet and nutrition were part of every doctors training.
Over the past 15 years, and particularly the past year, since developing stomach issues, I wish my doctor was more into the natural body and how it works as opposed to prescribing medications after everything has gone wrong. Even my naturopath missed the mark… I now have come to realize that low stomach acid has probably been my issue all along… something so simple… remedied with diet and a supplement or two… why isn’t this one of the first things that is checked off the list when issues begin to appear.
I have been a sickly child. Throwing up, abdominal pain, nausea, chronic constipation. Was hospitalized at 6 yo the first time, and heard all kinds of diagnosis. Back then doctors could not figure out what was wrong with me. So I continued to live with pain and other symptoms.
I am turning 40 this year and just now starting to live my life thanks to diet! With the help of ND we figured out that I have SIBO and diet is life-saving for me. My children also tested positive and on SIBO diet. I am a firm believer that diet is ones best medicine. It worked like magic for my family.
It’s a shame that doctors get only 7 hours in nutrition in medical school. It should be 700 hours. So much more research is needed in how our food interacts with our microbes and how it makes us, humans, sick or benefits our health.
We are on a more restrictive version of SCD, but it takes years, so we taking one baby step at a time.
I just wish my consultant and nurses would educate themselves , mine didn’t even know of the scd diet , they also need to educate themselves and listen to us when we tell them the diet is working , I sometime feel bullied and ridiculed for doing something I truly believe in . I want others to be encourage to try the scd diet and empower people .
Thank you for doing this important work! I’ve been following the SCD for 2.5 years and it has really helped me to manage UC with less medication (I was diagnosed 16 years ago). My doctor is neutral on the subject of SCD; not supportive and definitely not knowledgeable. I wish he wouldn’t pressure me to do a colonoscopy involving a lot of “illegals.” And I wish he had the knowledge and willingness to do extra testing – both of nutrient levels and issues like bacterial overgrowth and parasites – to support and perhaps adjust the diet for my needs.
To start with, I would like all doctors to be receptive to the concept that the food we eat has a direct impact on our digestive health. The recent studies have shown this. So whatever they were taught in medical school (even just 5 years ago) should be revised and updated with the current research that shows a direct correlation between the gut biome and digestive health. It was so frustrating for me 10 years ago to have my Gi doctor tell me that the food I ate had nothing to do with my ulcerative colitis. Oh, but by the way he also told me that I should avoid coffee and chocolate and spicy stuff. He was a very old school GI doctor. Fortunately, I found a younger doctor who was at least receptive to me eating SCD and taking probiotics to improve my gut ecology. Her support has meant the world to me. I truly feel like we are working as a team. With my first doctor I was constantly second guessing myself. Was I insane for thinking that diet could impact digestion? Should I never mention the diet or the probiotics to him in fear of him calling me an idiot? So my second hope for doctors is that they keep an open mind and work with their clients rather than following the old paradigm that the doctor is the ever-knowing boss that should be obeyed above all else.
And last but not least, I would like doctors to know that SCD helps people with ulcerative colitis. I have been eating SCD for 9 years and I believe it is the reason I still have a colon and am a healthy, happy, living, thriving person today. I still take prescription meds to help with my symptoms, but SCD has allowed me to keep the meds to a minimum and live symptom free for years at a time.
I wish doctors would start believing in the link between what we put into our bodies and how our GI tracts function! It floors me that so many of them just look for the quickest Rx “cure” rather than getting to the root of the problem.
I wish my GI specialist was more open-minded. After determining that I didn’t have a blockage, she lost interest and suggested I try low-FODMAP because she didn’t know what else to suggest. Oh, and I could take Amytriptyline and Miralax for the rest of my life to manage the abdominal pain and constipation.
After low-FODMAP didn’t work for me, I found out about SIBO and then SCD on my own, after 2 solid days of online research. I asked her if she would prescribe the SIBO breath test so I could see if bacterial overgrowth was part of the problem and was told no, that’s not a very reliable test. End of story.
I’ve seen some of the top GI doctors on the east coast and gulf coast. Every single one said diet plays no role in IBD. I talked to nutritionists that acted like I was crazy and gave me a picture of a plate with the food groups (similar to one I received in elementary school). I begged every nutritionist in the top hospital in the nation for a diet recommendation and all of them refused to give me any help because they said everyone is different and diet doesn’t play a role in our intestinal health. I felt like I was being belittled, eyes rolled, and just completely ignored. My son was diagnosed with Crohns Disease about 4 years old and is now almost 9. A year ago I decided to take his health in my own hands. I went to every IBD support group in and around my city. Finally ran into a mom that used SCD with success. We started the next day. Our GI appointment before SCD, our doctor updated my son to moderate/severe Crohns Disease and wanted to start infusions (biologics). Three months later at our follow-up, after starting the Specific Carbohydrate Diet (no biologics), my doctor said my sons inflammation markers were completely normal (lower than ever) and he can get off all meds and continue only SCD. He said the results were miraculous! Even with miraculous results for my son and other parents, the hospital hasn’t made any changes.
I wish the hospital was willing to have 1 doctor and nutritionist advocate for SCD. The nutritionists still have not learned about the diet or given me any support for the diet. I wish instead of turning to random people on Facebook and moms in my city, I would have gotten my nutritional information for my son from his doctor and nutritionist. I wish they were invested in SCD and could point me in the right direction. I wish I could have been taught how to prepare basic meals because it takes time to understand what items are legal and how to prepare items the legal way. I wish I could have gotten some cost saving ideas, legal local brands, and daily support as symptoms and changes occured. If my doctor and nutritionists supported me, it would give me the empowerment, strength, and confidence to embark on the emotional roller coaster of starting a child on SCD. I wish that the thousands of kids who are suffering, even on medication, could be exposed to SCD to heal their children when most of them have never heard of it and are being told that diet doesn’t help.
I wish everyone knew what I went through with my son and his great success on SCD. It’s been the hardest, yet most rewarding thing that has ever happened in my life!
Dear Tali,
First of all I would like to compliment you, your son and the rest of your family for the incredible effort you put into making SCD an accepted method of treatment and helping IBD patients in following the diet. I am truly impressed.
As for your request for experiences with GI doctors and my own wishes I would like to share with you the following:
I live in the Netherlands, I was diagnosed with Ulcerative Colitis in 2006 (living in Denmark at the time). My disease quickly progressed and kept me fatigued and home bound and not a very fun mom for my two young children or wife for my husband for that matter. From the beginning, I asked doctors both in the Netherlands and Denmark and even during a family visit in NY state if there was anything that I could do with diet to improve my health. No, nothing was the answer or I got a list of foods with high fibers that were supposed to help my stool. My Dutch GI was completely against diets and didn’t believe in any of it.
I kept on searching the internet and found SCD and changed GI. May 2009 I started SCD, while I was in a horrible flare. A week later my stools started to turn better, 5 months later my colonoscopy came out clear of signs of inflammation. The answer of my GI: “ I am glad it works for you, but since it hasn’t been researched, I will not actively advise it to other patients”. After 2 years I was off all medication and got yet another GI, because the second one moved to another hospital. This one only glanced at the whole paper I had written in Dutch about the diet, put it in the back of my folder and said I should keep taking a basic dose of medication. His refusal to listen to my experience and my ideas left me frustrated. I decided to monitor my own health instead of going back for regular check ups at the GI. I also consulted a homeopath to help me with that. I have been healthy and happy ever since and now mother of three 🙂
This is what I want GI doctors (and all other doctors) to know: Patients that are actively searching for ways outside the beaten path are not trying to be wiser than you. They want you to listen and work with them and be open to alternatives in combination with whatever regular medicine has to offer! Be a team! The patient knows her/his body best. Listen to that body together and don’t be offended if something you didn’t know about works. Don’t be afraid to suggest something that hasn’t been “clinically proven”.
As for SCD in the Netherlands, I am actively working to spread the word and will be launching a supportive website soon. I believe that acceptance of the doctors as well as support from the health insurance companies to compensate for expensive diet costs, could motivate more IBD patients to give SCD a try.
We are so thankful that although our son’s doctor didn’t tell us about SCD, he has been supportive and encouraging of our success using it. He believes nutrition is part of the foundation of one’s health, and admits more people should probably eat like we do. My husband has half of a thyroid due to a mass that was removed. His numbers at his annual endocrinology appointment had remained satisfactory enough to avoid medication; however, at his appointment after we had been on SCD for nearly a year, his doctor was astounded to see his lab results right smack dab in the middle of the perfect range. He asked what on earth he had changed. My husband told him about the diet and he said it was similar to a diet he recommends to diabetic patients. We have family members with Celiac Disease and once upon a time, doctors were both hesitant to diagnose and hesitant to advise the strict GF diet for that. Look where we are a few decades later! Awareness is key. Education is key. (Our friends and family all know we’re on some crazy diet and don’t go out to eat anymore…but they also know it’s working and can SEE the results in my son.) Is the problem that doctors don’t believe in the diet, or in the patient’s ability to stick with the diet? Is the problem that people just want a pill instead, or that they never knew about the diet? What are the biggest changes to our culture and society that would help more people try SCD?
I could not agree more with other comments! I would just like to report of our experience with SCD here in Switzerland. Our son’s GI had not heard of the SCD diet before, but he was not opposed to us trying it as he was a proponent of EEN for his pediatric patients. Since SCD has helped our son with Crohn’s disease reach and maintain remission (on SCD now a little over 3 years), his GI is now recommending it to some of his others patients and we have indicated our willingness to help and coach these families.
I think that all GI’s should be aware of SCD. I have ulcerative colitis and it helped me a lot. Unfortunately many doctors try to convince their patients that the diet doesn’t play any role in the improvement of their digesting. The quick advices are medications with serious side effects or even colon removal.
I am extremely happy that my GI is aware of this diet and has patients on this diet. He supports me because we are a team and we both are interested in good results.