Dancing with the Devil

Drugs for Crohn's
It has recently dawned on me that many of the recipes here are appealing to folks who have Diabetes. Which I find very interesting. Someone mentioned to me that Crohn’s and Diabetes (Type 1) are related – they’re both autoimmune responses (autoimmune diseases).

So it has me thinking and researching. But researching is a dangerous pass time for me – it might be for you as well. For me, it’s partly because I use the Internet, and it’s hard to tell what to believe. Especially when you’re dealing with things that doctors really don’t understand, and no one knows why they happen. It could be the environment, infection, genetics, and who knows what else.

No matter how much research and evidence I uncover, how many blood tests I look over -I can’t rationalize what works and why. I just know that there’s a certain level of toxicity for every drug (even Tylenol), and it’s not to be taken lightly.

Well, that came to an end for one boy who became a teenager and decided that this diet stuff was not for him right now. Kind of. He wanted drugs and he wanted to grow ASAP.

Let’s just say that this boy is a fictional character, who might resemble a real person, but for the sake of privacy, we’re going with fictional. This boy has been through the wringer with a weird infection after a vaccine in first grade which sent him to the first of several urgent visits to Children’s Hospital. Then it was diets, blood tests, pancreatitis, several emergency room visits, all the while humoring his mother, who kept on hoping that all would be solved with a gluten-free diet. Wouldn’t that be simple? Who the heck likes pizza anyway? I mean, most pizza tastes like cardboard, right?

SCD was wonderful for his body and his lab tests, but that would come to an end during an all-inclusive resort eating spree.

So you may be wondering: where is all this rambling leading to? While it would take a very long post to tell you what one boy has gone through thus far battling Crohn’s, such as weird knee inflammation that side-lined his competitive sports, here is what I do want to share right now.

Kids are at a critical juncture in life because they need to grow. It’s as simple as that. So, if you have a child with Crohn’s or a similar immune response that is inhibiting growth or health, here is what is working for us at the moment:

  • Check out this book: Beat Crohns! Getting to Remission with Enteral Nutrition, by Margaret A. Oppenheimer.
  • We use nutritional drinks. We’re currently going through two Ensures a day (yeah, full of corn syrup), plus a healthy diet (SCD, or close to it). I haven’t been able to reproduce a tasty version of this drink yet, but not because I haven’t tried. (Updated on 9/13/10: We no longer use Ensure and or similar brands. Stopped using them and minor colitis symptoms stopped too.)
  • Do anything to get the inflammation down because it zaps body energy, leaving little for growth. To combat inflammation, we’re using a low dose of methotrexate.
  • Read this article in Nature.

So, right now we’re dancing with the devil. This teenager is still eating very close to SCD – primarily protein, fruit, and vegetables. And no chocolate (I’m asked this a lot – I’m the chocoholic). His pure SCD days definitely made an imprint, and I hope he will refer to it when all this growing stuff is over.

One other note: I do believe that what works for one person, might not work for another, so your mileage may vary.

You might also like...

Posted in Gluten-Free  |  19 Comments

19 Responses to Dancing with the Devil

  1. lucy says:

    I am having a lot of success with my thyroid issuse (also autoimmune) on SCD…I think SCD is a terrifc diet for anyone with autoimmune isses. I tell people (and myself! for when I will have chocolate again!) just try it for 3 months…be strict about it though. It does not have to be boring! I eat super tasty food and feel fantastic. And yay for red wine being SCD legal!

  2. Bryan says:

    Your post definitely hits home with our family. Daddy’s a Type 1 diabetic with a 4-year old Crohnie. Eating strictly SCD, I used about 40% less insulin… though I’ve fallen off of being strictly SCD, our son ate strictly SCD for 9 months and it helped but did not eliminate the inflammation. We will probably go back to strictly SCD for him once we get through with an 8-12 week bout with enteral nutrition.
    The first three days on the EN has been pretty great so far… we’ll see if he can keep it up.
    It is definitely hard to know what works based on the existing research… and as your son perfectly demonstrates: the definition of “success” varies from person to person. For me, “success” is a combination of three things: (1) get rid of the inflammation, (2) growth, and (3) limited short and long-term side effects.

  3. Erica says:

    Hi Bryan. Thanks for sharing. I just read your updates and my fingers are crossed for all of you! Best wishes.

  4. Danielle says:

    I was sick for about 2 years and was in the hospital every 6 months. I tried everything to not have to go on the diet because I LOVE food and love to cook and didn’t want to give up all of my favorites. I finally tried it and had amazing success with SCD, until I recently got pregnant and fell completely off of the wagon! Luckily for me, my Ulcerative Colitis symptoms seemed to have gotten better when I’m pregnant. I’m six months now and feeling better than I ever have, but plan to go back on about a month before my due date so I can avoid another flare.
    I recently told a friend about the SCD diet who has had chronic fatigue. She didn’t know if it would help her, but tried it anyways and has already noticed a huge difference after 3 months. I didn’t realize it could help other issues, but it’s such a healthy lifestyle it makes sense.
    By the way, you inspired me and I started my own cooking blog! So far it’s just my family and friends following it, but I hope it can help people in their “writer’s block” for SCD cooking like yours helped me!

    • Jill says:

      Hi Danielle-
      I have have had two pregnancies that I used/partly used SCD to help control Crohn’s (I was on Remicade too)… Congratulations to you :) I would caution you to be vigilant after to delivering , especially if by c-section, the antibiotics I was administered set me back to square one…

  5. Erica says:

    Danielle, thanks for adding your story. I completely agree with you about eating as a lifestyle. Good luck!

  6. Deb Amlen says:

    This is awesome, Erica. Thanks so much for sharing what you’ve learned through your own research. I have a friend whose teenage son has also been through the wringer due to Crohn’s, and I’m forwarding her a link today.
    Hope you’re doing well.

  7. Erica says:

    Lucy – totally agree with you about food. One of the issues with SCD is that is seems time-consuming to make a lot of the food from scratch, however I have solved a lot of that by eating a ton of fresh food and trying out new foods. Keep it fresh, simple, and new. And go out of your comfort zone – it doesn’t have to look and taste like pizza, bread, and ice cream. My oldest trick in the book for my kids (since they were young) has been to put out raw veggies and fruits first (when they’re hungry) to cut the initial hunger. And red peppers are really sweet!

  8. Susan says:

    Be sure to have your child tested for food allergies!! My son with Crohn’s turned out to be allergic to all the major things he ate in life, including the cow’s milk that was pumped into him through a GI tube for four months, compliments of Children’s Hospital.
    Also LDN or Low Dose Naltrexone is an off label drug that is working really well for autoimmune diseases. It comes as a cream and only costs $40/month, (which is why the medical establishment isn’t interested in it.) Google Dr. McCandless, an amazing doctor using LDN in Africa to treat AIDS orphans at her own expense.
    In addition to LDN and SCD, my son takes anti-fungal and anti-inflammatory meds, probiotics, an array of vitamins and supplements, and fish oil.
    He almost died six months ago, and now he is getting stronger and happier by the day. His crippling anxiety disorder is in remission along with his Crohn’s.
    If your child is also autistic, check out The Evergreen Center run by Dr. John Green in Oregon City. The man’s a miracle worker who was recommended to me by Dr. McCandless.
    Good Luck to Everyone…

  9. Erica says:

    Hey Deb – so glad to hear from you. Please feel free to forward the link and the email. Best wishes! (and thanks for spelling wringer out for me:)

  10. Tracee says:

    Yes, research is a pastime for me on lunch breaks. I dig in PubMed alot. Sometimes research can contradict other research on the same topic. http://www.ncbi.nlm.nih.gov/
    But I still can’t get over how much the SCD and Omega-3 has helped us. If you could bottle the SCD it would be touted as a miracle drug for some. We still have some issues left, but it’s been amazing. I wish the medical community would pay more attention to this stuff.

  11. Beth Durham says:

    Hi, Just came across your blog and became a follower immediately! My hubby and I are low carbers. I love your site from what I have seen so far! Can you please tell me what the SCD diet is though? Thanks!

  12. Erica says:

    Beth, SCD stands for Specific Carbohydrate Diet and lots of folks use it for health reasons. You can read more here: http://www.breakingtheviciouscycle.info/index.htm

  13. Kim says:

    I have been on SCD diet for 6 years. Had severe crohns and it has saved my intestines. It is a diet that doesn’t work over night for some. It was only on yr 5 that I stopped taking meds. For people with crohns, this is a life time diet and it really becomes normal after a while.
    To all of you craving chocolate there is a company that makes scd ‘legal’ chocolate and I think it is delicious! Google ‘Dr.Vie Chocolate’. They do deliver but it can be pricey.

  14. Erica says:

    Hi Kim – thanks for sharing your experiences.
    Also, just fyi, I’m pretty sure all chocolate and cocoa is SCD illegal. See here: http://www.breakingtheviciouscycle.info/legal/legal_illegal_a-c.htm

  15. Susan says:

    I was diagnosed about 4 years ago with UC. Since then I’ve been taking different meds to keep the inflammation at bay. I started pinning your recipes and found I love them so I just bought both of your cookbooks and breaking the vicious cycle. Wish me luck!!

  16. Angela says:

    Hi Erica! Really spooky that I read this today the we commited to ramicase for my teenage son for growing reasons. He was on scd for a year then he was 13 blood after which blood colonoscopy and MRI didn’t find any inflammations . After a year off his colorectal symptoms came back. He has no desire to go back to scd which helped with inflammation but he got too skinny and wasn’t growing as fast .I cook mostly paleo now. But teenagers are not good with diets. I wonder what make you to shoose methotraxate . Thank you

    • Erica says:

      We chose Humira because my son had a very bad reaction to Remicade. Humira is self-administered also. As an adult he now takes Humira and Methotrexate because that’s what works for him right now (in college, high metabolism, trouble always eating right). The theory behind the methotrexate is that it prevents his body from rejecting Humira.

Leave a Reply

Your email address will not be published. Required fields are marked *

  • Get recipes, updates & inspiration

  • Sources & tips

  • Coconut Flour Cookbook by Erica Kerwien - Comfy Belly
  •  target=
  • Comfy Belly Amazon Favorites

  • By recipe

  • By ingredient

  • Recently

  • Temperature Conversions

    Gas Mark Fahrenheit Celsius
      1/4  225  110
      1/2  250  130
        1  275  140
        2  300  150
        3  325  170
        4  350  180
        5  375  190
        6  400  200
        7  425  220
        8  450  230
        9  475  240