Looking for feedback from ALL Mom’s – What do you think?

My son has UC. We started SCD in mid-May and he had six weeks of being symptom-free. He then had a flare-up and we started the intro diet again as we weren’t sure what triggered it. The book also indicated that there can be problems in the second month even if the diet was followed strictly. He had a three week streak of being symptom free but started having symptoms again. Do we start over every time? Are most people starting SCD also on medications? (He is only on Pentasa right now.) Do you recommend using Jordan and Steve’s phases or just following the Breaking the Vicious Cycle book? I’m new to the blog and am grateful to have a place to talk to other moms.

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21 thoughts on “Looking for feedback from ALL Mom’s – What do you think?

  1. Thank you for coming to us for help! Hopefully one of us mom’s can give you the advice you are looking for! Please let me know if there is anything you are looking for or any questions you have. I don’t always have the answers or the right answers, but maybe someone following can help!
    My opinion on your post:
    I have a post from the beginning of the blog on keeping a very strict food diary. I kept a strict diary for over 2 years for Justin. Whenever a flare-up happened I would document it in my diary and try to look back over the prior week to see what he might have eaten different that could have caused the flare-up. Sometimes we would never figure it out. There might be a particular food causing it, or it could be some stress from school/friends that you don’t even realize. Justin has had flare-ups occassionally through the 2 1/2 + years he has been on the diet. He has remained medication free. I have seen stress bring one on. And found out later that some of the flare-ups we couldn’t figure out at the time were actually because of him cheating on the diet at school because of peer pressure.
    After being on the diet for so long, I recommend not getting “TOO” stressed over flare-ups (please note I said “TOO” stressed, because as a mom we worry and want to prevent these flare-ups). It’s a learning process. Everyone’s body is different and each situation will be different. By keeping the strict diary, I believe it will help you to learn what works and doesn’t work with your child.
    You might want to try Jordan and Steve’s recommendations and see how that works for a while. Keeping it documented will help you look back! The diary has helped me more than I can explain! When Justin had occassional flare-ups I actually never restarted or changed anything, I looked back over the past week and tried figuring it out. If I didn’t figure it out it did pass. If he tried new foods, the signs would always show up within 2 to 3 days, so that’s how far back I would focus. And from documenting and trying things we have added a few small things back to his diet and plan to add some more soon.
    Hope this helps you some. I look forward to hearing from more mom’s!!!
    Have a great Labor Day weekend!

  2. I say keep doing your current diet. If symptoms continue after a comfortable time. Than try to rule out 1 item at a time for 3 days. We found that sometimes matthew would just have a setback for a day and there was not always any rhyme or reason.
    We always caught ourselves trying to figure out what we did wrong.
    After 1.5 years on scd only with no medications we just feel that its just crohns.

  3. Congratulations on starting the SCD diet! We have been on the SCD diet for a year and a half. My daughter has UC but if she cheats, she had symptoms. Depending on what it is, it is how badher symptoms are. She is in no med. My son had CD, but if he cheats, he has severe symptoms no matter what. He is currently on Pentasa as well. Prior to the diet, he was in Pentasa but not taking all the symptoms away. Post the diet, we try to take him out of Pentasa but he got a mayor flare up. For now we will continue on both SCD and Pentasa.
    When they have flare up we don’t start over, we are extra careful about what we eat, and not eating out for a while. Hope this helps!! Good luck!

  4. Thanks everyone. He started having d Thursday night and is now having blood and cramping. His UC has been classified as mild to moderate but it is very persistent. This blood and cramping is probably the worst he’s experienced to date. We live in a small city and have to drive 2 hours to see his doctor as there is no GI in town that sees kids under 18. I really don’t want to start prednisone again or start him on 6mp (he’s never been on it) given the possible side effects. The doctor told us at the beginning that diet has nothing to do with this and that at best it could only take you so far. Her advice (before we started SCD) was to do prednisone and 6mp. I am at a loss and trying to figure out how to get him out of this flare. He seemed to respond to SCD very well at first. The only thing we know he came into contact with that was not SCD legal was a plantain that his Spanish teacher brought to class and he thought was close enough to a banana to be ok. Plus, he had had a little d before that. I just don’t know if he can work himself out of a flare without major intervention. At what point do you say that the flare requires additional intervention/medication? We’ve never been able to get him out of one without starting the intro diet again, but haven’t tried waiting it out either. Thanks for your help and encouragement.

    • I believe it is the plantain definitely. And also depending on how ripe it was. I know some people even have trouble with bananas even not in a flare-up.
      I would not go to a doctor. I would wait it out. I have gone and spoken to all of Justin’s teachers and they know he can only have what I have sent for him.
      I am SO sorry this has happened. I would point out to him it’s probably because he ate something he wasn’t supposed to do so he will start relating the cheating to the flare-up before the peer pressure starts.
      From Justin cheating and just eating a few bites of something it has caused unbelievable reactions.
      Good luck! Keep in touch!!!

  5. hi! my son has been on the SCD for several years and during that time he has had several flares with cramping, blood and D. we can sometimes pinpoint the reason but not all the time. my advice would be to give him plenty of bone broth. i cook a whole chicken, remove meat when done and then continue to cook the bones for hours and hours. (sometimes overnight in the crockpot) you can add onion, carrots, celery for flavor along with sea salt. i strain the broth and use if to make egg drop soup with chicken and eggs and a bit of sesame oil, hamburger soup, etc. i usually keep him on soups for a few days and it really helps. another thing i have found useful is MCT oil. i have found this at a health food store. it is a bit like coconut oil…. medium chain tryglycerides. i add some to his soup before serving. also i find that the probiotic saccharomyces bollard can be helpful for D. not sure if this is SCD legal so you will have to look it up. it may be more advanced as my son has been on the diet for a very long time. also you can use beef soup bones as well the key being to boil them for a very long time. the broth should be gelatin like when refrigerated. when ethan was diagnosed with crohns we did exactly what the dr said, got him up to 80mg of pred, pentasa, moved to 6mp, azathiprine. nothing helped his blood and D until we began this diet. my dr also told me that diet had nothing to do with crohns. my son is also on LDN 4.5 mg and that is all he takes. one more thing…. make sure your son isn’t chewing gum at school. we had issues with my son getting gum from other kids and it put him into a flair. i guess he didn’t realize that chewing gum counts as food. where do you live? i think i remember that other people on this site use a dr in GA that advocates the diet. good luck and hope he gets to feeling better soon!

  6. Thanks for helping us through this. We now have a whole chicken in the crock pot and are going to start a better food/symptom diary to track changes. We live in Mississippi, halfway between New Orleans and Jackson, and have seen pediatric GIs in both (although they say the same thing). We have also seen Dr. Boyd at Forward Health Solutions. She is not a GI, but has been very helpful in recommending supplements and was the first doctor to not look at me like I was crazy when I wanted to talk about diet. We had already started SCD on our own then and she was supportive of that. She did suggest that we look at LDN at our last visit. He was doing fine without it at the time, but I think we are going to try to get him started on that. I don’t think he’s cheating as we’ve actually had a hard time getting him to try new SCD-legal foods. He’s concerned that it might set him back. After the plantain incident, he realizes that “when in doubt, don’t.” He does need to eat more vegetables. We’ve been pureeing butternut squash, carrots, and spinach and he’s not a fan of any of them for too long. Perhaps after this flare has calmed down, we can get him eating well-cooked veggies. We are concerned about this flare and wondering how long and at what point of severity we have to do something else. Thank you for all the encouragement. It’s great to hear from experienced moms!

  7. Hi everyone — Just came across this blog, and am very, very happy to have done so. My son has CD and started SCD (alone, no meds) in June. He’s done remarkably well on it, even from Day 1 there was a dramatic change. And he was on the thin side but has now gained 10 pounds. He hadn’t gained any weight in 3 years. So we’re sold, that’s for sure.

    But just last week after a Labor Day BBQ, my son had his first flare since starting the diet. For him that means d and some pain. This lasted about 3 days and was mild, but it was so out of the blue, and he’d been on such a good streak for 10 weeks, that we got really scared that somehow the diet had stopped working, or that it hadn’t really been working, he’d just been in remission this whole time, etc.

    I emailed his NP, and she said that sept/oct is flare time for IBD kids, whether it’s the back to school excitement/stress, etc. But I found that info helpful too. Even happy stress is still stress on your system.

    Looking back, he’d probably also eaten something he shouldn’t have at the BBQ, and he ate an unripe banana at school the first day, and I think I probably aggravated things by experimenting with making SCD legal white chocolates out of cacao butter. Too rich for him. So the idea of the food diary is very good.

    He was only diagnosed in June, so honestly, we’re still trying to come to terms with what his illness means. I’m happy to read more experienced moms’ perspectives on the diet, and trying not to panic with every flare. It seems that over time, you learn to take them more in stride. But being so new to the diagnosis, and what it means, it’s really very hard to have any perspective at all. It’s hard to know what to let go and what to call the doc about. My son has had some things he never had before his diagnosis, like strep throat and a stye in his eye, and I always wonder if the two things are related or just a coincidence. When the diagnosis is new, you attribute everything to the IBD! Kids get sick otherwise, right? But it’s hard to remember that.

    I really appreciate this blog, and the thoughtful answers above. Thank you!

    • Good luck and I know we made the right choice to do the scd diet when we found out. Matthew started in march of 2012 and we have never looked back. Hes doing really well with very little major issues.
      I also have to sometimes remind myself that not every issue is cd.
      He is 5’9″ weighed 115 march 2011 and now currently weighs 145. Sad that hes not grown taller, which is his desire. But, he feel good and play sports without any issues.

    • Welcome! Glad you found us! Please let us know if you have any questions or looking for tips, recipes, or someone just to listen! We ALL know this is not easy!!!
      Thank you for mentioning the back to school stress!
      And I definitely know what you know about blaming all symptoms and illnesses on the IBD! Justin used to go through spells of lots of styes. Wondering now if it was related. Every time he says his back or knees hurt I wonder if its joint pain due to Crohns.
      Welcome again!!! Where do you live? How old is your child?

      • Thanks for the warm welcome. It is really hard. Today was a hard day for me, and I found this site with such relief. I realized that it’s hard to find support because I don’t think people realize how much work this diet is, how challenging day after day, and also what a heartbreak it is to have a child diagnosed with a life-long, chronic illness. Right now I feel like we’re living in a parallel universe with the rest of the world.

        In the few short months we’ve been doing this diet (all three of us are doing it even though only my son has CD), it’s felt like a rollercoaster ride. When he responded so well to it immediately, we were so relieved and hopeful that we’d found the right way to help him. But anytime he has other problems, we’re sort of terrified that it’ll be the thing that sets off a chain reaction of other problems. He got strep throat in July and we were afraid that the antibiotics would undo all the good work of the diet, but we kept up the diet and yogurt and he made it through fine. Whew.

        But it’s so difficult to have this feeling that your child is in some kind of danger all the time. Does that feeling fade over time, or lessen, or is it just a fact of life that you learn to live with?

        We live in CA and my son is 11. He’s part of an SCD diet study they’re doing at Stanford. We get really good support from them for the diet, and I’m glad my son agreed to be part of the study. Maybe the results can finally get the diet its long overdue validation, and can help others who are exploring other options.

        My son is also very sad at times about being the odd kid who can’t have birthday cake and pizza with the others at parties. I’m working so hard to try all the great recipes out there and make him delicious alternatives so he doesn’t feel deprived…But have you found that your kids have grown more accepting of the diet over time, and more focused on what they can have rather than what they can’t? Because honestly it’s a really nice and delicious diet, and we’re all eating better/healthier as a result.

  8. All,
    I am happy to report that our son’s flare-up ended and he has been symptom-free for a week now. Thank you for all your encouragement! He did do a day or two of the intro diet but is now back to eating the list of SCD foods that he had tolerated well previously. He is also taking LDN along with his supplements. ML, you are right. It is hard, but it does get easier. There are times when we feel “deprived,” but we quickly remind ourselves that none of those foods are really good for any of us. I’m also grateful for the new cookbooks that support SCD and that the Paleo way of eating is becoming more and more popular. I would be interested in learning more about the study being conducted by Stanford. SO glad to hear that it is being done!

    • Very glad to hear that, Julie. How long did the flare last? You’re fairly new to the diet like us. Maybe over time when flares do occur they’re less severe (I hope)…

      I agree about realizing that the foods we were eating weren’t good for us anyway. The few times I eat gluten these days, a beer or something in a sauce at a restaurant that I’m not aware of, I feel the effects of pretty dramatically. Until you stop eating it, I think it’s hard to pinpoint symptoms to particular foods. But on this diet, it becomes pretty obvious.

      Have you all heard of a site called crohnology.com? I recently joined and find the info really interesting (for example, beer is the #1 problem for people with IBD), and also the community aspect. There are some kids signed up on there too, at at some point I might get my son connected to other kids that way. Here’s an article about it in case you’re interested: http://www.technologyreview.com/news/518886/patients-take-control-of-their-health-care-online/

      We feel very fortunate that we went to Stanford at the same time they were starting to look seriously at the SCD diet (finally! some concrete and scientific validation!) It means that our MD/NP support the use of the diet alone. In fact, our GI NP’s husband has CD and has been in remission on the diet for 7 years. So she’s a goldmine of information. We might have still tried to go solo with the diet when my son was diagnosed, but it’s so reassuring to have their backing and support.

      The study means that my son has to have his regular blood tests, but also give stool samples at 0, 1, 3, and 6 months. It’ll be a while before the study finishes and the results are published, years, but I can tell you what they told us: of the 5 patients they managed to recruit for the pediatric study so far, all 5 have been able to manage their disease through diet. Those are pretty good odds.

      Here’s more info: http://clinicaltrials.gov/ct2/show/NCT01749813

      They do have a hard time finding people to sign up because of how challenging this diet is.

      • Thank you for sharing this information, ML. Our son has UC and we are fairly new to the diet. We started in mid-May and our son had six weeks of being symptom-free. Since then, he has had minor flares and some periods of being symptom-free. He’s very cautious about what he eats. After the intro diet, what foods did you eat? We’ve been trying to follow Jordan and Steve’s phases in their SCD Lifestyle materials to give us guidance, but it’s been tough to add things in. There’s always the concern that introducing new foods might set him back.

        I am thrilled that they are doing this study and look forward to seeing it published.

        • Hi Julie — Because my son wasn’t in a flare when we started the diet, Stanford said not to bother with the starting diet. He didn’t have any problems at all, and hasn’t been bothered by anything we’ve tried. We haven’t tried beans and legumes yet though. I bought some dried beans, soaked, boiled, and made chili, but my husband and I had so many problems from them (gas!), that I didn’t dare give them to DL. Will need to keep working on that before we try them for DL.

          Our biggest challenge is trying to keep DL full. He’s almost 12 and hungry almost all the time. It’s hard to keep a growing kid full without the carbs like wheat and rice, we find. Some evenings after dinner, he gets ravenous and I find myself in the kitchen for HOURs making smoothies, cheese lace, roasting nuts, kale chips, Yonanas…trying to fill the guy up! It’s unreal.

          If anyone has tips for how to fill up a ravenous kid, please do share!

          • Lara bars,
            Matthew was up to 6 eggs for an omelet.
            Muffins made with almond flour
            Lots of ripe banana and if he likes peanut butter. He can use the pb for dipping the bananna.
            * legal pb only peanut and salt
            Smoothie: 4 ripe bananna, 2 tablespoonfuls of dry curd cheese, 1tbsp of legal vanilla, handful of ice, coconut water to blend.
            Lots of protein will fill him up.

  9. After 3.5 weeks of being symptom free for the third time since starting the diet, our son is in another flare. He seems to be having a flare about every 4 weeks and we are at a loss as to why. The blood usually disappears a few days after doing the intro for 2 days but it’s been a week today and his symptoms have not subsided. I am getting pressure to start using prednisone again and to try 6mp in addition to the diet. These drugs helped my husband who was diagnosed in college and has only had 2 flares his whole life. I am really worried about the long-term side effects of the drugs, but am also concerned that he is having a flare-up about once a month. I have been researching fecal transplants but the FDA is restricting them to do clinical trials. At a loss as to what to do.

      • Hi ML,
        Thanks for checking up on us. You are sweet to do so. In some ways we are in about the same place as we were in October. I do think our yogurt maker was part of the problem then and am thankful that someone on this blog suggested that we check that out. Despite the fact that the machine was still relatively new, there was water leaking in the bottom of it. The problem was gradual so our son didn’t notice the change in taste. We got a new machine, he noticed a change in taste and texture, and he was over that flare within a few days. Unfortunately, though, he still has a flare about once a month. The last one was in early January and the last few days has us worried we are headed there again. Although his disease is classified as mild to moderate, having these once monthly flares sets his growth back which is tough for an almost 13 year old boy. We are keeping the diet up and have also had him take s. boulardii and digestive enzymes occasionally. Of course, we wish we could determine what causes these once monthly flares. He’s been on the SCD for almost 10 months now and still has not tried raw veggies or most raw fruits. Fortunately, he is an optimist and has such a great spirit. He tells me he is not worried about his weight and never complains about the diet. I hope we can figure out how to get him out of the once monthly flares before having to take 6mp, but after almost a year, I have to consider that we may have to do that. He has been tentatively accepted for the FMT trial. That was supposed to start in December but hit some delays and will hopefully start within a couple of months. It will mean significant travel for us and being away from home, but as you moms know, it will be worth it if it works. Hope you and your son are doing well!

        • Hello, Julie. Sorry to hear about the monthly flares. Just wondering if you would want me to share your comment on a post and see if another mom has any suggestions?

          • Sure, Paige. That would be great. I probably need to incorporate the bone broth on a more regular basis and not just during flare times. We haven’t tried eliminating eggs, dairy (butter and cheese), or honey/fruit because he’s gotten out of a flare while still eating these things. He doesn’t really eat much fruit now, just ripe bananas occasionally or cooked pears every once in a while. He mostly eats eggs for breakfast (and sometimes snacks), meat/fish, cooked veggies, cheese, avocados, some diluted grape juice, and has 2 – 3 cups of the SCD yogurt a day with a little honey in it. I will make almond flour/coconut flour items occasionally and we know we have to make sure he doesn’t eat too much in one day. I feel like we are so close to a sustained remission, but there are just a few tweaks we haven’t managed to identify. Before his diagnosis, he had always grown so incrementally and along his growth curve. The illness has slowed that and, after 10 months on SCD and a year and a half of the illness, I wonder if I’m over-relying on the diet and being overly cautious when it comes to the meds. Regardless, we will maintain the diet as I am a believer in it. Thanks!

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