Bored with the diet?

I’m posting this ONLY to help mom’s out there for when/if your child gets bored with the diet or starts sneaking and cheating. I just want to share this so you won’t be so overwelmed like I was!

My son, Justin, is 12 now. He will be 13 in December! OMG! That just crossed my mind and sounds scary! Sorry to stray there! I can’t believe it!!! Anyway, he is still 12 now! A year ago he started having some bleeding and cramps and he told us that he was being bullied at school to eat things he wasn’t supposed to eat. The first time was a girl in one of his classes finally pushed him to eat skittles. He had told us in the past that kids picked at him about his foods being different. So we talked to the teachers and go him moved at the lunch table. Looking back now, I honestly don’t know if this was a case of bullying or by choice and he was not telling the truth. We thought we had addressed the issue back then, but time only tells.

We have noticed pieces of pizza come up missing out of the fridge and evidence coming down to Justin eating it. Please read old posts and see that at we have made attempts in the past to add back some foods. Rice was NOT good! We have added sweet potatoes and he eats them regularly. Well, Justin has been pushing to try more. It’s scary to me! PLUS, not to mention after ALL the time and effort I put into the doing the diet for him!

A month ago, Justin admitted that he had cheated! Augh! He was gone with the cross-country team and on the way back they stopped at Chick-Fil-A. Justin knows there he should only eat the grilled chicken nuggets, fruit cup, and unsweet tea or he could have a salad with lemons and honey. Justin knows what he can and cannot have. He goes to his dad’s every other weekend and has at times had to point out to his father that something he had on his plate was not legal. Well, Justin decided to have a chicken sandwich, fries, AND a milk shake!!!! I almost passed out when he told me that! Justin told me about this on a Monday. He had eaten all of this on a Saturday! From listening to me, Justin thought that his symptoms would have shown up already after eating something illegal. Usually it shows up 3-5 days AFTER consummed. So I pointed out to him that that would not be until Tuesday – Friday. He was hoping since he didn’t have any symptoms that I would let him start eating this when he went with friends.

Justin never did mention having any side effects. But I do know that he is head strong and determined that he wants to be able to eat normally around others, so I would not be surprised if he hid it from us. I did call our GI doctor. We had stool samples and blood work run. Everything did come back normal. After seeing the doctor he also thought he seems ok. PLEASE keep in mind Justin has been on the diet over 2 1/2 years!

I had been told by one of Justin’s counselors at Crohn’s Camp, that Justin is old enough now that he needs to learn to “own” the disease. This counselor had been on the SCD Diet as a child and swore by it that it worked! But… He told me how Justin has to learn to own how he feels if he cheats. My punishing him for sneaking and cheating is not going to change things. He has to accept his flares/pains/bleeding IF he decides to cheat on he diet. This counselor now is not on SCD and is on medication, even though he knows the diet works, he chooses for social reasons not to follow the SCD.

So Justin and the doctor, and I guess me too, have decided that he can eat with friends once every two weeks and see how he feels. We will possibly do bloodwork and see the doctor in 2 months and see where we are. Justin did say that he wants to stay on the diet at home, but socially be normal occassionally.

I will keep you all updated on how things go! I predict that given this freedom he will end up cheating more than once every two weeks. But hopefully I am wrong.

I just hope that by sharing this it will prepare one of you for what is possibly to come! Keep up the GREAT work! I know it’s not easy! You’re a GREAT MOM!!!


24 thoughts on “Bored with the diet?

  1. (I know you are not asking for advise, but just giving us an update)
    I wonder instead of making a plan to give him permission to go off the diet, you just stay 100%. But, when he does cheat, he’s not punished by you. This will come when he starts to not feel well.
    I truly believe that if anyone starts to stray off the diet they too will go completely off. Matthew has been on the diet since March 2011 and does not cheat and does not like the pain even when stuff is legal but does not work for his body.
    Whenever my son goes to friends or school he brings a lunch and others do not know his lunch is different from theirs unless he tells them. (which all his friends are aware of his diet and Crohn’s) He will be 15 on Oct. 5th.
    After all the hard work to start the diet, I really hate to think about starting all over again:(

    • Thank you for your response!!! I have posted on this in the past and asked for advice. I have asked for advice in the past and not gotten much if anything in return. So I am excited to have someone’s feedback!!! I need as much from you guys as you are looking for. Thank you!!!
      I agree with you, but he has been head strong about his for a while. As well as my ex husband says he doesn’t think there is anything wrong with him doing this. My ex had actually offered him something an option in a regular bases and was saying to add that item back into his diet on a regular basis if he didn’t bother him. Honestly, I was hoping the doctor would have been the bad guy and told him no since our doctor was the one that offered us the diet to begin with.
      I am hoping that he does have mild symptoms to help him remember how lucky he is that the diet does work for him and keep him not only symptom free but also medication free!
      Thanks again!!! And PLEASE so not ever hesitate to leave advice or feedback!! And if you wee have advice/thoughts/recipes/tips you want to share with others I can give you my email address and you can send it to me and I will post it! Have a good week!!

      • I know the diet is hard and it’s extremely hard when there are two households with different opinions. Yes, you and I have the same awesome Dr. Cohen!
        Thanks for the understanding of my opinion I sometimes give it when people don’t want to hear it and they do not receive it well.
        We as a family have looked up to you and Justin as being the leader for us with this diet and you have shared some really good information and I’m proud that you both stayed strong even when you and your husband divorced:)
        Always, feel free to contact me if you are in need of any help or support. Matthew may even be a good resource for Justin when his friends are not understanding about the diet.
        When Matthew reached the 1 year marker, I asked him what he would like to try now and he had only the desire to have potato chips. We have ventured into the Cape Cod with salt only. He’s done well with this and some cut up pepper jack cheese. He takes this for
        Matthew has a cup of the SCD yogurt every night before bed on an somewhat empty stomach.

        • Hi Michelle — I’m curious about the yogurt at bedtime. How did you figure this out as something to try and if you don’t do it, do you notice a difference?

  2. I completely understand your situation. My son just turned 14. He had a major cheat-fest last spring and paid the consequences. He’s been much better since but still finds ways to cheat, small cheats, but nonetheless, cheats. He’s been on the diet over 1.5 years and doing very well on it (except last spring). The counselor is right; we have to let them find out for themselves why this diet is more important than any other “food” out there.

    • I just had a teacher email me that someone brought donuts and chocolate cake this morning for the class and Justin insisted to the teacher he could eat it. I hope he finds our soon but I hope it’s not TOO bad. Thanks for ALL of your help!!!

  3. Oh boy, Paige, that is so difficult, and something it sounds like we all will need to face one way or another as parents. Thanks for starting this discussion and for your honesty.

    As someone fairly new to a CD diagnosis for my 11-year old son and only 3.5 months into the SCD diet, I sometimes start wondering about “what about later?” and then stop myself, because i find it so overwhelming. I find the day to day of the diet challenging enough, let alone thinking about beyond that…

    It sounds like all of our children (all boys?? interesting…) are at an age where they’re developing their independence. In some ways it seems it would be easier to get a diagnosis and start a much younger child on this diet so that it just becomes how they eat normally. But kids our kids’ ages are facing whole new worlds–school, the lunchroom, after school activities, peer pressure, wanting to fit in, and just plain wanting to eat junk food with the other kids even if only once in a while.

    Our wonderful GI NP at Stanford, who’s running the SCD diet study and also so supportive of us on this diet, said that they usually recommend that people stay on the diet for at least one year before they cheat to see what additional non scd foods they might tolerate, but with kids this age, they recommend 6 months simply because they know how difficult it is to keep a kid this age 100% on the diet. And after the 6 months, the cheat can be one thing per week. That gives the kids a chance to feel “normal” and *hopefully* isn’t such a shock to their systems that they undo all the hard work and sacrifices of the previous 100% diet compliance.

    When the NP asked my son what he’d want for his first “cheat” he said ice cream. And she told him about how hard that would be on his system–between the sugar, the fat, and the lactose. So I like that she’s giving him the chance to think about cheats, but also info to help him make informed choices about them. He might still choose the ice cream, but if there are repercussions from it, he will know exactly why.

    This NP’s husband has CD and has kept it in remission for years through the SCD diet alone. She says he cheats every Saturday night and has pizza. That’s the one thing he really wants. And if he stays on the diet otherwise, he can get away with that. And if he’s in a flare, obviously he skips the cheat. It really seems like everyone is different and can get away with different things…And there’s really only one way to find that out…

    I think we have to face the fact that their lives are their own…And as a few of you also said, they’ll have to, through trial and error, figure out what works for them, what discomfort they’re willing to put up with, what’s worth it to them. And oh my what a heartbreak to think of your child having to physically suffer as they figure things out. But unless we lock them into the house and isolate them, they’ll never find their own bearings on this. There’ll always be temptations, kids with fantastic looking lunches that they can’t resist, sometimes they’ll just be dying of hunger and have forgotten your carefully prepared lunch or snack, and then they’ll cheat. They’re human. They’re hungry growing boys.

    The other thing they’re going to have to learn is how to cook and prepare food! But I can’t wrap my brain around that one just yet. ;- )

    • Thank you for your reponses!!! I was telling someone following the blog about the Stanford test study. Can you give us the website and information again and I will post it. We are all interested in the results! The test study my original group has ended I believe. There are only two of us that I know of that are still doing the diet.
      Responding to the trying new things after a certain amount of time. I tried adding back some things after one year and Justin did not take good to any of it! With rice his bottom blistered up so bad he missed school for a week because he couldn’t sit down and he spent the week at home laying around on his stomach watching tv. After two years, we tried some more reasonable things and it’s seemed to work better. I believe somewhere in the book, “Breaking The Viscious Cycle”, it says something about the two year mark. The mom that originally had her son on this diet and introduced it to our doctor that started our test study, I believe had her son on the diet for two years and he went off and did great off the diet for a couple of years until he flared back up and had to go back on the diet.
      We are anxious to follow your test study.
      About the kids learning to cook and follow the diet later. Yeah! That’s hard to comprehend! From most of the mom’s I’ve talked to with college kids (girls and boys) and college students I’ve come across choose to go off the diet and will not go to the trouble ๐Ÿ˜ฆ

  4. My daughter was on the SCD diet during the beginning of her junior year in high school and remained on it for one year. At the beginning of her diet her best friend, one year older had a car and would even transport my daughter and her new boyfriend. It was hard on my daughter being so restricted in her eating. Her friend(?) and my daughters boyfriend started going out to eat saying she would not be able to eat the food so they didn’t invite her. Needless to say her friend took full advantage of her situation and was working behind her back to snatch her boyfriend. It worked and hurt my daughter tremendously as well as myself. This friend had been in my home for the previous year and a half almost daily. To this day I still feel bitter about this, even though I know she’s better off without them. I guess if I’ve learned anything from this is my daughter is a survivor and it is up to her to choose wisely her food, friends, and the direction she wants to take her life in. She is in college now and is on a Pre-Med or PA pathway, primarily children’s healthcare. As with all of us, we learn from our mistakes and we grow a little more wiser because of them.
    She is not on the diet now but it is still possible to be wise and stay with fresh foods and meats. I can’t predict the future for her, but she has learned to own her disease as mentioned in a post, which came from her own analysis and because of that I sence a feeling of empowerment she now carries with her.
    Hope this helps as I’m the one with an older child or young adult, not to mention the only girl!

    • Thank you for your response! I find it interesting your daughter is going into the medical field. My son says he wants to be a doctor when he grows up and find a cure for CD.
      I’m sorry to hear about your daughter’s experience. I had tears in my eyes after reading that! Only imagining the stress my son has had and will experience. I understand completely still having harsh feelings about this! I also have a 16 year old and these girl/boy experiences… I could start another blog on that topic alone! Lol

  5. Thank Paige for your posting! Thanks everyone for all your comments!
    My daughter (12) is in the same boat. My husband and I just had last night a huge discussion about Kristina wanting to go to a dinner theater at her school. They are serving ziti with meat or with vegetable. I dont want her to go as she has been cheating lately and there is nothing for her to eat. She doesnt want to bring a lunch box… as it wont be cool. UGH!
    My husband thinks that she can go and not eat anything. I think that would be setting her up to cheat. It is so hard at this age as they are trying to be independent and fit-in. Especially when she doesnt feel her symptoms right away. It usually take about 4-5 day before her joints start to hurt or she is extremely constipated.
    As someone previously mentioned, I feel that it is a slippery road once they start cheating. She had done some cheating early this summer and by the end of the summer I decided to make a contract with her. We decided that she would be allowed to cheat once a week and that we would test that item over a couple of weeks to see if we could introduce it more frequently. Now I have caught her cheating 2-3 times per week during the last 3 weeks.
    Part of me wants to give up and let her eat what she wants to see what happend. Part of me is horrified at the concequesces.
    I have seen Crohns take down my husband and son in the past with surgeries required. I dont want to re-live that. I dont want her to get sick but somehow think she hasnt had a real scare so she doesnt think its a big deal.
    Thanks for been a sounding board!

    • I’m sorry yall are not agreeing. I thought it was hard disagreeing with this issue with my ex. It’s got to be hard with your husband! Sorry. Let us know what happens and how you handle it and the results.

      • Yesterday was just a bad day…one of those that I’m sure you all have had were you are swimming against the current and everything feels overwhelming! I had a long talk with a friend and felt like taking on the world again. ๐Ÿ™‚
        Well, I talked to the teacher and she was extremely accommodating. The dinner theater is a sit down dinner. I will bring Kristina’s meal and they will serve it in the same plates as every one else. Im making her spaghetti squash with turkey ground meat and an almond flour cupcake for dessert. I feel so relieved! Im happy and she is happy.
        Thanks for listening !!!

    • We have a couple places we feel comfortable for our son to eat at. We also pack him a lunch box with his favorite foods.
      Also, not that it is fool proof…..but, have her take enzymes before she eats out.
      She needs to be reminded of the commitment to her body and health.
      Of course try to encourage the scd yogurt before bed.
      I started this 6 months ago and Matthew seems to be able to start his morning routine quicker.
      We eat at the wild wing cafe and matthew will eat 2 burgers, pepperjack cheese, bacon, fried egg, broccoli with pepperjack cheese, salad.
      Of course do the call ahead to make sure they make their burgers from scratch.

  6. Thanks to everyone for sharing on this. We have only been doing SCD for 4.5 months so it’s hard to imagine things a year or two out. Hearing your perspectives is helpful. Our son is 12 1/2 and is fortunately embracing the diet right now. He wants to stay well as he knows that a flare-up can cause him to lose weight and risk going back on harsh medicines with serious side effects. He gets involved in the cooking which I think is important long-term, frying or scrambling his eggs each morning. (We’ve already talked about how in college he’ll probably be cooking all his meals with some help from home.) Our whole family eats Paleo at home (something we started a couple of months before SCD). This helps reduce temptations at home and reinforces that this is healthy way to eat whether one has an IBD or not. He also works with a trainer (along the lines of Cross Fit) that eats a Paleo diet. It is (slowly) becoming more popular to eat this way and being around athletes and people that are choosing this (not because of a specific illness) helps. Our biggest obstacle remains the social side. Sometimes I’ll make something to mimic what will be available. Most of the times, our son chooses to eat before or after the event. His friends know and have become more and more understanding. It’s unfortunate that we didn’t start making better eating choices until pushed to by an illness. We don’t want to repeat that if at all possible. I am grateful for this blog. It’s so very helpful to hear from others on this journey!

    • There’s not many differences in the Paleo diet, is there? The new cookbook “Against All Grain” is Paleo/SCD.
      Isn’t it aweful that there are no places to eat on these diets! We should all get together and start a healthy food chain! ๐Ÿ™‚

      • I’m starting to hear more and more about “paleo friendly” restaurants these days, and seeing more healthy prepared snacks at the health food store too that seem scd legal, so I’m hopeful that things will get easier for our kids and they’ll have more options and plenty of company on the diet choices.

        • Isn’t that great!!!! Hey, Moms! Why don’t we help each other out. If you find a new snack or food item at the grocery store, take a picture and email it to me and where you found it. Even if you don’t live close to done of the rest of us. I know you can usually get Publix to special order for you.
          And if you see a restaurant that says Even Paleo friendly, please share it with us!

  7. I wanted to post an update on this thread. After 6 months on the diet (and the end of the SCD diet study), and all his tests now coming back completely normal, my son’s GI doc at Stanford started coaching my son about weekly “cheats.” We decided to call them “splurges” because cheats sounds so critical ๐Ÿ™‚ Anyways, my son’s pretty diligent about the diet and has never cheated once. We were afraid to do the splurges because why mess with success? On the other hand, having that to look forward to each weekend helps my son mentally TREMENDOUSLY. Once a week he can feel like everybody else, go out to a restaurant, and just be a little freer. So we decided to try it and keep track of foods he eats and any symptoms after so we can see what’s tolerated and what isn’t.

    Well no big surprise: Ice cream is a disaster. OK, no lactose. No matter how badly he wants ice cream, I will not be buying him any ever again.

    Then we learned that our local restaurant will very kindly substitute parmesan and provolone instead of mozzarella on his pizza, and voila, no problems from that.

    So far, he weathers these weekly splurges just fine. He can have rice and hoisin pork from a local take out place, the pizza with aged cheeses only.

    We were afraid that weekly splurges would open pandora’s box and lead to more cheating. But so far, no. It probably helps that we all eat SCD in the house, so there’s nothing tempting him…

    I know that everyone’s different and can tolerate different things, and I also think it’s probably easier for some personalities to deal with cheats and otherwise stay strict than others. I’m in no way advocating for this tactic. Just wanted to share where we are right now.

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