 Wouldn't it be nice to know how it's really going for people who are on the Specific Carbohydrate Diet? Many people have found sites like NoMoreCrohns, learned all about it, gone on the SCD and moved on with their lives and we don't know who they are or how they're doing! Are you one of these people?
It would be so great if we could collect YOUR story, for the record, so that people will have a reference point, a place to look for encouragement and information as they begin their SCD journey. Hundreds of new people are visiting our site every day, so we know there is a great interest in learning about the Diet. As more and more doctors learn about the benefits of the SCD from their patients and their own research, we feel it would be valuable to collect a body of individual stories from people like you. While there are still no completed scientific double blind studies proving that the SCD works, personal experiences recorded here will be very helpful to doctors and their patients as they consider recommending and/or following the diet. You can be part of something bigger... you can help spread the word so that more people will be able to have the option of following the Specific Carbohydrate Diet rather than going down the medical road of strong drugs with adverse effects, surgeries, sickness and discouragement. You can make a difference. Thank you for adding your story to the Comments section. Erin and Robin
33 Comments
I was diagnosed with Crohn's in November of 2009 by the Digestive Disease Center at a very large teaching hospital in Seattle. After the colonoscopy I asked the Dr. if I would need to change my diet. He looked at me and said, "No. Diet plays no role in this disease." I couldn't accept that answer, and so started to do my own research. I started treating this Crohn's first by following Jordan Rubin's protocol, but within the first month moved to SCD. I gave myself a year. If there was no change at that time, I would said I would highly consider the drugs. One year to the date (after just changing my diet to 100% strict SCD and being under the care of a Naturopath) I had a follow-up colonoscopy. It showed that, yes, there was some scar tissue built up. BUT....the massive inflammation in my large intestine was nowhere to be found. Remission is, as far as I know, a lack of symptoms. Within that first year of SCD all my symptoms, both external and internal, went away. Amen!
Nichole Reynolds
6/13/2014 06:15:30 am
My son's doctor said those exact same words!! I looked at him as if to say, its an BOWEL condition-food has everything to do with it! I hope all is well with you! Thanks for your story.
Laina Simoncelli
8/1/2012 08:11:34 am
My son was diagnosed with Crohns at 17. For 5 years, he would go in and out of remission. When the remission months were becoming less and less and the flare ups lasted longer, his doctor strongly recommended humira or remicade (he was taking pentasa and prednisone when he would have a flare up.) My son, now 22 years old and never ever really feeling good, did not want to take the stronger medication. We did many months of research with alot of trial and error of different remedies. But then an acquaintance of mine, whose young son has Crohns, told us about SCD and the success he had while on it. My son started the diet in September of 2010. We followed it very strictly, and he had immediate, positive results! He gained weight/muscles almost immediately and the much-needed afternoon naps ended. There was no more pain or inflamation. After 5 months on this diet and his first doctors visit, his blood work results amazed his doctor. He told him to continue to do what he was doing. He has not had any flare ups where we had to call his doctor and need to be placed on prednisone. He has had a couple of minor issues that have corrected itself in a short amount of time. He has just started to try some "illegal" foods when he is out and has not had any setbacks. He is doing great on this diet and I am so grateful to have learned of it. It is not easy to follow this diet BUT it is so worth the time, effort, discipline and sacrifice. I am also grateful for websites like this for the knowledge and support it gives. Thank you!!!
Jack Carroll
8/8/2012 07:30:41 am
I had intermittent digestive issues over a number of years but in general I was in excellent shape and in good health at 47 years old. Then in July of 2011 I hit the wall. I began feeling fatigued and like I had a fever all of the time, I lost my appetite and began having problems processing my meals. Within three weeks I had dropped almost twenty pounds and I was pretty much unable to function. It took several weeks of testing to come up with a Crohns diagnosis. My GI doctor was the one who informend me of the SCD diet and fortunatly with the help of my wife we researched it and gave it a try. Within 48 hours of starting the diet my symptoms began to subside and it it took me a month and a half to gain back some weight and get my strength back. I've now been on the SCD diet for just over a year and I have not had anothe flare up. For me I find a combination of the SCD diet and exercise to be critical in maintaining my health. I'm 48 years old and working out at least 4 days a week and I'm probalby in the best shape I've been in over the last twenty years. While I know I still have Crohns present in my system the SCD dieat has allowed my to have a normal lifestyle and has provided me with a very high energy level. Thanks for all your work on the site it's a great resource.
Valerie
9/30/2012 09:57:35 am
Valerie Lyon I was introduced to SCD in 2000. I had been diagnosed with UC in 1990, and was done with being on prednisone every year at least 3 months for 10 years. I followed SCD 100% and didn't need pred again for about 7 years (was on 2 different times after that). Occasionally I would try non-SCD things, but couldn't stay off of a 5 Asacol/day dose for long. In 2010 I decided I would do whatever it took to get well and made super-rest a priority (I work for myself, so decided that until I had the energy to have fun with friends consistently from, say 1-2pm, I wouldn't work during that time slot). I also got significant help from Chinese medicine, Constitutional Homeopathics and Essential Oils. I cut back on Asacol extremely slowly, so it took a year to come off. I'm now totally medicine free, and have more energy than anyone can remember me having! I can also eat potatoes now and then, and it only took 11 years to get up the nerve. I still eat 100% SCD most of the time.
Jaynette Gay Bauer
10/6/2012 10:46:16 am
From birth, I suffered from cow's milk and was very skinny; had anemia. In the years to follow, I had trouble with colds, influenza, and pneumonia, sinus headaches, aches and pains. That was my childhood.
Cheryle Johnson
12/16/2012 06:13:26 pm
I have just completed one year on SCD and had a colonoscopy this past Friday. My Crohns Disease is so improved, I don't need another colonoscopy for three years! Thank you everyone for your help and support.
Nancy
2/10/2013 07:49:49 am
I was diagnosed with collagenous colitis in 2003 and with celiac in 2006. My doctor said what I ate wouldn't make a difference with the colitis. Of course with the celiac I started a gluten free diet but wasn't getting better. Then with God's grace I came across Breaking the Vicious Cycle on the internet as I was searching for answers to my chronic diarrhea. I started the diet with the chicken soup, started making my own yogurt etc. I found good results but it has been hard for me to be strict with the diet. I have finally started to be 100% SCD and it is amazing. Thanks so much for the encouragement you and your mom have provided on your site.
Sondra
3/26/2013 07:18:29 am
My 5 year old son has celiac disease. He had been on the typical gluten free diet for 4 years and seemed to be getting worse and worse each year. He suffered with constipation, mood swings, stomach aches, and constant sinus problems. He was run down and would catch every cold that came along. So we decided to try the SCD diet. He has been on the diet for 2 months now and has had dramatic improvement. He has gained 5 pounds, his bowels are moving everyday, no more stomach aches, and no more sinus problems. His concentration and focus have improved and he is doing great in school. I would encourage anyone who has celiac disease to at least give this diet a try. It's worth it!
solange
7/6/2013 11:29:35 am
My son was diagnosed with Crohn's disease 3 years ago. He was 24. His case was so advanced he had multiple fistulas that had tunneled to the outside of his body. As an RN, I knew when the doctor said Crohns it was the worst. Immediately placed on steroids and straight to the big guns medications, Simzia injections ( unable to take the IV immunosupressants) he bounced in and out of the hospital. There were multiple visits to GI and colon/rectal surgeon, yet, no one spoke of diet or alternative treatments. Finally, after seeing him suffer so much, I took control and began research. I found a site by Alan Schacter that included a Core Regimen. Crohn's Dad. I pulled every string I could to have my son see Dr. Loftus at the Mayo clinic. There suggestion was surgery, additional cancer causing medications. I refused. I took my son off of all medications and began him on the SCD diet, using the healing broth, supplements that included Betaine, Bosweilla and a prescriptive medication called naltrexone. Naltrexone is used in low doses of 4.5 mg. It is currently used in higher doses for opiate addiction. After 7 months of the core regimen, and the naltrexone, and SCD diet, I am happy to say my son is healing. There are presently no fistulas, no flare ups and he is healthy. The doctors stated after his CT scan and lab work " stay the course". This diet works and with the correct supplements and LDN, I believe we have cures for Crohns sufferers. It is a combination of all 3 that certainly includes the SCD diet. Naltrexone has undergone medical studies by Penn State and prescribing doctors can be found.
Elvia
7/25/2013 05:35:24 am
Our daughter was diagnosed with Crohn's disease at the age of 7. It was a whirlwind of emotions, many drugs, hospitalizations, learning and letting go, while eventually coming to the top tier of meds and knowing about SCD, yet not having done it because we thought it was "too hard" to do and to comply to. Well, she's 15 years old now and 4 years on the diet. We've survived school lunches, class trips out of state, camping trips in remote areas, flying on her own to go see her sister in college, long hospitalizations (not due to Crohn's/other complications which did affect her Crohn's as a result), and other hurdles -- all maintaining SCD strictly with 2 fulltime working parents cooking and shopping for SCD.
Alison Cooke
7/21/2015 10:20:11 am
My eleven year old daughter was recently diagnosed with Crohns. She had cankers very bad in her mouth and after an endoscopy was told her esophagus was very inflamed. The colonoscopy showed her entire large colon was also full of ulcers that were deep in the tissue. They say her Crohns is very severe and want her to go on Remicade and Methotrexate. I see a naturopath who introduced me to the SCD diet but our doctor does not see it as an option for our daughter. She was put on an NG tube and fed peptamin for eight weeks when this didn't put her into remission her doctor wanted her to go The SCD needs more research! Go to www.scdresearch.com and visit the "SCD Survey" page. There you can complete a survey on your experience with the diet. The goal is to gather the information you provide and pass it along to those who are responsible for conducting and/or funding clinical studies. If we can compile surveys from 500 to 1,000 people who are on the SCD, maybe we can get researchers, regulators, doctors, and others to focus on more research. You do not need to include your name or any other information you would like to keep confidential. Let's do something!!
Marianne Burton
8/25/2013 02:12:27 am
My name is Marianne, in May 2013 my 10 year old granddaughter was diagnosed as having Chron's(she had spent a couple weeks in the hospital while they tracked it down after losing almost 20 lbs because she couldn't eat without severe pain). I found your website while searching for more info on Chron's and decided to get the book that started it all Breaking the Vicious Cycle by Elaine Gottschall. I found it to be very informative and while my daughter did not feel that going that restrictive a route for her daughter was the way to go I thought I should give it a try since I have IBS and arthritis and the book talks about it helping with these. I wanted to see if the diet would do anything for me, how difficult it would be to stay on, if the recipies were any good, etc. I have been on the diet for 4 weeks now and have to say that the results have been amazing. My tummy troubles are going away. I had been having severe problems going up and down stairs because of my arthritis. Now it is like I turned the clock back 5 or more years I can go up and down stairs with hardly any problem at all. I actually look foreward to going to work now instead of dreading it because of how badly I had been feeling. I am staying on this diet because I don't want to go back to feeling so horrible. I am hoping that by my family seeing how well I am doing on this diet(they have noticed the improvment) that when my granddaughter starts having flares that they may consider trying it to help her.
MB
9/10/2013 12:35:07 am
Hello Erin!
S. Marie
3/10/2014 03:43:38 am
My husband was diagnosed with Crohns when he was 25. He had been suffering for at least 3 years before that, and nobody could tell him what the problem was. We went to multiple naturapaths, acupuncturists, and regular doctors with no answers. As a side note, we had been vegan and vegetarian for years before he got sick. I think it was a low fat diet high in soy, and improperly prepared grains and no source of healing bone broths or animal fats that made him so sick. Hi, My name is Camille and I was diagnosed with Crohn's Disease and Ulcerative Colitis at the young age of 16. Although I am still relatively new to this I have found much success from eating according to the SCD and GAPS diet. I blog about my story, because I consider it to be truly a miracle how quickly I have healed. Please check out my blog at blessinginthecurse.blogspot.com In short, I run cross country and almost immediately after beginning the diet I improved my 5K time by 15 minutes! My doctor has been amazed at my progress and I certainly am too. I am also astounded by the number of young people my age who have similar circumstances of illnesses, all relating to food. I blog about my story because I have learned so much from this difficult journey and wish to share it with others!
Nichole Reynolds
6/13/2014 06:13:32 am
What a blessing! My son is 12. He was diagnosed with Crohn's last July. I immediately changed his diet, unsure of what that meant exactly, but started with the no-brainers (fried food, sweets, Fast-Food-GONE). He slowly began to have joint pain, back pain and now a year later Arthritis. His tummy has been awesome! But now with the Arthritis his GI doctor and the Rheumatologist both are advocating for Remicade to rid him of the inflammation in his joints. I'm not completely comfortable with this drug but my son needs relief. He can not get out of bed swiftly without taking 5MG of prednisone about an hour before its time to get up. I just purchased the complete guide to the SCD today. I am praying like never before that this book will keep everything under control so he doesn't have to stay on this medication for an extended duration. Has anyone had experience with Remicade? Were you able to get back to your normal routine and off the medication and remain system free via the SDC? Any information you provide will make may day-YEAR!! I love this site-I wish I found it last year Hello friends! I'm a Crohn's and Colitis advocate seeking guidance and support for my beloved fiance', David. David was first diagnosed with crohn's disease at 21 yrs. old (he is now 37 years old. Unlike the typical crohn's diagnosis, his is isolated in the large intestine. He has had 3/4 surgeries since 2009, one of which is a temporary ileostomy. According to his GI specialist, his case is of advanced case and for the past 3 months, he has been in and out of the hospital for various issues--one of being a recent case of elevated temperature, 103 degrees Farenheit! I encountered the book, "Breaking the Vicious Cycle a few days ago and planned on getting him started on this diet. With him being a young man, I want to make sure that he lives a better quality of life and I'm desperate to help him! Doctors seem to just push medications that seem to cause more problems than resolve the issue. I'm looking forward to sharing his experience with the SCD diet.
Desiree
11/3/2014 11:14:26 am
Hello. I wanted to share the story of my amazing 12 year old daughter. She was diagnosed with Crohn's three years ago. Treatments began with 12 weeks of liquid diet followed by 4 months of steroids during which time the GI wanted to start her on immune-suppressant. Working with my naturopath, I was determined to find a more balanced way to manage the Crohn's. We tried elimination diets, supplements, and even helminthic therapy, each with limited success and with a reluctant sigh from our GI. Although her other symptoms were not too bad, her growth had flat-lined over the past year and at our last visit, the GI proclaimed that there was no other option but to immediately put her on Remicade. I came home devastated and decided to have one more look through my notes. There I found reference to the Specific Carbohydrate Diet. We had tried it for about a month shortly after diagnosis but my daughter, 9 years old then, had found it too difficult to stick to. I sat down with her, we talked it over, and she said that she was ready to take responsibility for her health. We started the diet the very next day (I'm her diet buddy). Within 48 hours, there was a dramatic improvement! Her appetite was back - I mean, she was actually in the kitchen helping to prepare the food - and asking for seconds (unheard of). Tomorrow will mark 8 weeks on the diet. She has gained 6 lbs and feels great with absolutely no symptoms of Crohn's! We are both so amazed and grateful. Meanwhile, the GI kept pressuring to start her on the immune suppressant even though I told him how well she was feeling and have suggested doing another set of blood work before making the decision. Today he informed us that he is no longer willing to have my daughter as his patient and that our next appointment will be with his supervisor and a social worker... I find it very sad that there is such a lack of support for alternative treatment. I hope that enough success stories will make a difference. And I fully expect that my wonderful daughter will be one of those success stories.
Alison Cooke
7/21/2015 10:45:32 am
Hello Desiree, how is your daughter doing? My daughter was diagnosed in May with a severe form of Crohn's and her GI doctor is pushing us to put her on Remicade. We have been one the SCD diet for about 3 weeks having completed 8 weeks of a liquid diet (peptamin) through an NG tube. We did agree to put her on prednisone and this did put her into remission, however, we are now weening her off and her CRP is increasing. The GI doctor thinks she will flare again which is why she is pushing for the Remicade. When I mention diet to the GI she will not acknowledge it let alone discuss it
Mon'e
3/3/2016 11:15:25 pm
That is so awesome that your daughter is responding well to the diet. I am just following up with your daughters progress to see how she is doing. My daughter is 9 and has had crohns since she was 6 and it's been an uphill battle with all the meds and her not feeling well. She's lost so much weight and I'm wanting to do the diet but it seems so difficult. It's a shame that the dr didn't want to hear you out and even try to call a social worker that makes no sense at all.
Nichole
11/4/2014 11:42:57 pm
Hi Desiree, I'm so glad to hear that the SCD regiment is working! I also brought the book. My son developed Osteomyletis along with arthritis like joint pain. We still adhere to the recommendations found in our SCD book, but after much prayer I had to step out on faith and start the Remicade treatments. He was in so much pain, it was a chore for him to get up the stairs on the school bus. I still give him supplements recommended by our naturopath (turmeric supplements, pro-biotics). His blood work, joint pain, even the presence of Crohn's in his lower GI is practically undetectable. I pray we can find a cure for this, but as we solider on, I wish you all the best for your health! So many tough decisions and uncertainties, but if you're a spiritual person put all of your trust in God-this is wayyyy too big for me. I trust the Remicade will do no more or less than it has to in the matchless name of Jesus.
Marnie
3/4/2016 08:58:52 am
I started the SCD on Jan. 1, 2000. After seven years of unhelpful gastroenterologists and every FDA approved drug for Crohn's, I was sicker than ever. Surgery was recommended. I did the SCD instead. Healthy and off all my meds in 6 months. I did the diet for 2 years then found a naturopath to help me include more foods after two friends with severe food intolerances (celiac disease and casein intolerance) were cured by one. It worked and I ate normally for the last 14 years. Dealing with a flare up now after some really horrible holiday eating. So grateful I have this diet to return to, and my kids are loving the recipes-thank goodness! Although they've never eaten a typical american diet, so it's not too much of a stretch. Doing the diet now is so much easier. Recipes are much tastier, shopping is easier (foods at Trader Joes and Whole Foods actually label everything-or so i'm told by staff). Very grateful to all the great cooks and bloggers who make this so much easier than it was in 2000! 7/21/2016 07:05:13 am
My daughter was diagnosed with Crohns disease in 2012 at the age of 10. 2 years of medication was showing no improvement to her health. Her doctor was suggesting surgery and remicade. As her parents we were not ok with either of these options. We had heard that Crohns can be controlled with diet. So we started researching different options. We settled on trying the SCD diet. It has been an amazing diet! Symptom free for 2 years and best blood test results. She just had her 6 month check-up yesterday and told her doc still doesn't believe in the diet. Very frustrating, but we know that we are doing the best thing for her!
Sean
7/29/2017 03:46:09 pm
I too suffered terribly with Chron's disease for over 15 years. Over that course I (much to my regret) conspired to conventional western medicines drugs and ultimately a bowel resection surgery. Never got better, only worse. Thereafter, my eyes were opened by Jordan Rubin's books, I very strictly changed my diet and lifestyle and praise the LORD, I was healed after a few months. Not only completely healed, but in better health than ever I had been in my life. Even before my suffering with Chrohn's disease! For over 6 years now. However, as a result of the bowel resection surgery I had, it looks like I am severely suffering from a small bowel obstruction/stricture. No symptoms or signs of disease activity at all. I am deathly suffering. My plea is, is there anyone out there that can give input on alternatives to conventional medicines non help, non remedy vicious cycle (another surgery) harmful solution to this. PLEASE! Thanks.
Erin @ NoMoreCrohns.com
7/30/2017 12:54:14 pm
Hi Sean, I'm so sorry to hear how you are having so much pain right now. After such an amazing recovery, that must be really hard. I asked your question on my NoMoreCrohns.com Facebook page. If you are on Facebook, go to that page and you'll see several responses to your question. Otherwise, I will try to get the info and paste it here for you. Another option would be to email me at nomorecrohns@ gmail. com. Thank you!
Erin @ NoMoreCrohns.com
7/30/2017 04:26:58 pm
Another reply on Facebook for you: " Maybe try to find a physical therapist trained in fascia strain counterstrain therapy. This is different from regular strain counterstrain. I know of a clinic in Wisconsin. You can private message me if you want and I can get the name of the clinic for you. Even if you don't live nearby it may be worth calling them and talking to them to see if this would be helpful. They may be able to recommend a place close to you."
Erin @ NoMoreCrohns.com
7/30/2017 04:23:41 pm
Hi again Sean, this is what one person shared on Facebook with me to tell you: "The post was about a man who was feeling better but now has a stricture. DMSO is said to help with scar tissue, it could be worth looking in to. Do not let people online scare you away from it, it is safe as long as you take simple precautions. I have taken it before, and still do on occasions. There's a good book on it called the The DMSO handbook for Doctors by Archie H. Scott. DMSO is amazing and might people to help him."
Erin @ NoMoreCrohns.com
7/30/2017 04:25:18 pm
Here's another reply for you: "My son tried every med... remicade, humira, cimzia, etc.... and nothing worked. We visited a doctor in NY who put him on a strict diet (4 things to totally avoid), and he felt amazing. Lab results were the best they'd ever been in his life too... normal sed rate and CRP, great iron levels, etc.
Danielle
5/27/2018 09:20:48 pm
I’m interested in this diet 8/26/2018 08:27:12 am
Hi Erin, my son has severe ulcerative colitis with a very high CRP and anemic and has lost 30 lbs. I am so worried I can even sleep.They want to put him on either remicaide or humira which can have terrible side effects. I have been doing everything natural but have had any good results. Would you be able to share what you have discovered that made your son better. What are the 4 things I should avoid giving my son? Thank you so much I dont know what else to do that can actually help him. 8/29/2018 03:35:21 pm
Hi Lisa, I would love to help you learn more about the SCD and how you can help your son. We do have a Starting the Diet page, which lists many things you can do to get going on the SCD: https://www.nomorecrohns.com/starting-the-diet.html Of course, #1 is reading the book "Breaking the Vicious Cycle" by Elaine Gottschall. Also, the official SCD website is very helpful: www.BreakingTheViciousCycle.info. I also do dietary consultations to help you sort through the steps of getting started on the SCD: https://www.nomorecrohns.com/dietary-consultations-with-erin.html Your comment will be posted after it is approved.
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