26 Responses to Why I Stopped the SCD Diet

  1. Adam
    Adam April 22, 2017 at 6:12 am #

    Thank you so much for sharing your updated story Catherine!! And especially for all the details of exactly how you have come so far in the past few years with managing and taking control to the best you can of the disease! Way way impressive, and so great to hear that you have taken the long challenging road to figuring out what works for your body. I hope others can do the same!!!

    Thx for sharing,

    Adam

  2. Shelly April 22, 2017 at 7:14 am #

    Thank you for sharing!
    I was also diagnosed after my second child, but it was the combo of very hight stress from work/ffamily/finances paired with a high dose of Flagyl antibiotic for a lymph infection that triggered my UC.
    I’ve not gone through massive diet changes, but have removed stress much as possible.
    I’m working (fighting) with my GI about a treatment that was not a part of diagnosing in the first place (I moved to a new state) and convinced him to have another “look”. I’m on Remicaid.
    I feel like it IS a condition, not a disease. For me, I’m not accepting this as a life sentence. Just a wake up call to my emotional triggers (aand a few food mods as well).
    I’m encouraged by your story to search more actively for a naturopath who treats holistically. My dr. thinks I’m a little nuts.
    I appreciate hearing everyone’s unique journey and perspective. This changes lives!

  3. V April 22, 2017 at 2:13 pm #

    Thanks for sharing. The diet part is really helpful and I wish I would have read it years ago.

    Please be aware that VSL#3 has recently changed. What you take as VSL#3 is not what you took last year as VSL#3. The old VSL#3 formular is now called Visbiome. Most GI’s don’t even know that.

    What I don’t understand is the hesitation of medication. I understand if you don’t want to take steroids or biologics. But mesalamine? Especially if you have no side effects from it. I was at the same point after diagnosis where mesalamine did the trick and reduced it. I will maybe never do that again, biggest mistake. And I would never consider it before I am even fully symptoms free which you don’t seem to be. And I prefer taking mesalamine above risking worse symptoms resulting in worse medication.

  4. Rachel April 22, 2017 at 7:41 pm #

    Hi Catherine- your post is inspiring, thank you – it’s exciting to read how well you’re doing. I have some similarities to you, but you’ve been handling this for much longer. Did you have negative side effects when you were on the higher Lialda dose?

    I’d like to try to be medication-free soon, I have to determine a little more about what is triggering flare-ups where I can though. I work so hard to be symptom-free with natural tactics – I don’t want to give up on that but it’s also difficult to know how long to keep trying. Congrats on how well you’re doing, you’ve earned it and can really motivate others too!

  5. Cathy Miller April 22, 2017 at 8:34 pm #

    Hi Adam..Could you let me know how I could reach the lady with the son in hospital to have his colon removed. She asked for the small book I wrote about diet and implants. I have been symptom free for well over 2 years now. I must say I almost ‘passed on’ a few times and specialists insisted I have my bowel removed.
    I found my own way with help from caring people and for this reason I have written of all I have learned in the past 5 years. If you would like me to send you my book I would. I am not selling the information just want to give back.

    • V April 23, 2017 at 4:18 am #

      If you are not selling the information, why don’t you share the book here with everyone?

      • Cathy Miller May 8, 2017 at 7:39 am #

        I want nothing more than to show you the book in it’s entirety but it seems there is no way unless each person sends me their email.
        It seems I would have to write the 31 pages here which is impossible for me.

        If anyone knows how to put the book on line email me at cmiller@sutton.com.

        Cathy

    • svetlana April 24, 2017 at 7:55 am #

      Hi Cathy,

      My name is Svetlana. How can I reach you to get your book about diet? My son is started remicade after very bad flare up couple months ago, but we are trying to change his diet to help his condition – we tried few approaches but it didn’t help.
      I hope your book will help him with the symptoms.

      Thank you. Svetlana

  6. Sheryl K
    Sheryl April 23, 2017 at 4:22 pm #

    Hi Cathy, I would love a copy of your book. Let me know how much and how to get it. I am reading ad much ad I can about all the options. I currently just started with a Homeopathic MD and an trying a food based diet and vitamins/herbs. I plan to get the food allergy intolerance test done to see what my triggers are also.

    • Cathy Miller April 25, 2017 at 12:36 pm #

      All you need to do is send me your email address and I can forward it to you.
      Cathy

  7. Erica April 24, 2017 at 1:46 pm #

    Thanks so much for sharing. I put myself on the SCD diet a few years ago and got so much sicker. Around the same time I realized that sugar is my trigger. I was taking quite a few vitamin capsules at the time and figured out that most of the capsule coverings are made from sucrose! I switched to powder and liquid vitamins and tried SCD again and again became so much sicker. Many people told me that I must be doing the diet wrong but it just didn’t work for me. I am still struggling along to get better and was even off remicade for 10 months and just taking VSL#3 and 6mp. Life intervened in quite a stressful way which has put me on to Entyvio but I am feeling very optimistic. Thank you for pointing out that this disease is so individual! And thank you to the above poster about VSL#3. I will check out Visbiome. Good luck to you all in your journey to be in remission!!!

  8. Patricia Lewis April 24, 2017 at 4:40 pm #

    I also took the food allergy/intolerance test and I think it’s helped me tremendously. Like Catherine, I was buying “healthy” foods and didn’t realize how inflammatory they were to my system. Since starting the elimination diet my face has cleared up, my sinus problems are so much better and my hair has stopped falling out. I think all of the antibiotics that I took for sinus infections helped to trigger my UC. I take 4 Lialda a day and just finished a round of steroids but I feel better and have more energy too. My dr doesn’t agree with the food elimination diet but I am so glad I took the test! Good luck all on your journey.

  9. Allison-3
    Ali April 25, 2017 at 3:43 am #

    Hey Catherine-

    I have had similar success with food allergy testing. SCD also didn’t yield the benefits I desired, due to the dairy and nuts. And I love VSL#3- DS- expensive but one of the most effective probiotics I have used.
    Keep in mind, you may want to repeat the food panel as it does change every few years. And since most of us have some degree of leaky gut- the saying goes “you leak what you eat the most”- so the immune system will start reacting to different foods over time. The key for me is VARIETY. I try not to eat the same foods more than 2 or 3 days in a row and then give a few days off.
    Anyway- super amazing news and thanks for sharing. And for those of you struggling, in pain & frustration- don’t give up!!
    Ali

  10. Trish Plunkett April 25, 2017 at 4:10 am #

    Thanks Cathy,
    Coincidentaly I had just made an appointment for food intolerence testing before I opened your story.
    I have been a “healthy” concious eater all my life, but despite that have developed IBD possibly from NSAID’s used for back injury over many years.Diagnosed November 2016.
    What I wanted to add today is that I’ve just started using CBD oil over the past two weeks. It is a strong antiinflamatory and it is nutritional to booth.
    I will be a Guinea pig and get back to you all in a few months to report my outcome.
    Thank you Adam for setting up this site. It is a support for sure.
    Love from Ireland.
    Trish.

  11. Angie Addison April 25, 2017 at 7:34 pm #

    Thanks for sharing your story Catherine! It is very inspiring. I can relate to the feelings of complete desperation and despair when you’ve tried to tweak every diet to get your symptoms to subside. My medication free (I’m sending positive vibes and hopes for you to get there) came after seeing a Chiropractor who is a Naturopath and Neurologist. Dr Puckette tested me for food allergies then customized my diet, loaded me up with supplements, and gave me brain exercises to reprogram my brain to stop attacking my central nervous system. I feel like I have my life back and I wish the same for everyone in this group! Thank you Adam for connecting all of us!

  12. Brian April 26, 2017 at 3:51 am #

    Catherine,

    Can you describe to take the allergy/intolerance test? Is it the same thing as an elimination diet? I’m trying to find a nutritionist myself, but this allergy/intolerance test seems exactly like what I need.

    Thanks!

    Brian

  13. Allison April 27, 2017 at 1:51 pm #

    Hi and thanks for this inspiring read which resonates so much with me and gives me hope during another flare and considering the op. No drugs left for me to try and even steroids are not working well any more.
    I have been taking cbd oil for a few months, considering the food allergy test you mention, really grateful for your post. I’ve had this nightmare disease for 10 years now!!
    Sugar is my downfall and flour so thats what i need to cut out and get some probiotics in me!
    Cheers and good luck everyone

  14. BRENDA May 1, 2017 at 8:24 am #

    So glad to read this! I have been working hard to find my triggers- so far so good.. My problem is Lialda broke me out in painful large hives and any meds after that did the same-especially at night. So ive been EXTREMELY watchful on my diet however, how can you possibly control gaining weight having to eat the way we have to? Ive ballooned to over 200lbs!
    I cannot tolerate any raw fruits/ veggies AND FEW COOKED. I would face-plant a salad bar if I could!

    • Catherine E
      Catherine May 1, 2017 at 10:54 am #

      I’m so sorry to hear that you’re struggling, Brenda. It will get better, even though it doesn’t seem that way when you’re in the midst of a flare! It is indeed hard to keep the weight off. I try to restrict portion sizes by preparing meals in advance, in single serving tupperwares. That way, I’m not tempted to scarf down half a chicken and all of the potatoes. And I allow myself cheat days, when I can devour a whole bowl of rice pudding (coconut milk, cinnamon, brown rice YUM) and banish the guilt. But it really is a constant battle.

      Other ways that I’ve been able to stay full – lots of bone broth, adding rice protein to foods and adding gelatin to foods. Esp starchy dishes and soups, where it doesn’t add much flavor but the protein and binding qualities help fill me up.

    • Catherine E
      Catherine May 1, 2017 at 10:58 am #

      Wow, thanks for sharing, Allison. It sounds like you’re in a rough spot. It is indeed hard to avoid sugar and starches… I found that allowing myself rice and potatoes helps me steer clear of the starches that I know trigger symptoms. I’ll be sending you good thoughts to feel better soon!

  15. sunny May 5, 2017 at 4:23 pm #

    Please ask your Dr about taking vit d with fat as it doesn’t absorb well – I learned this when blood test showed vit d was borderline low despite taking 3000 IU a day. Some d was taken without food, so I rearranged schedule and now its in middle of range. Also, vit d at bedtime would raise your blood calcium at night, a time of day when its normally low. (high blood calcium could affect sleep) In fact, the lowest level of calcium and parathyroid hormone (regulates blood ca level) is a few hours before you rise, not sure if wise to mess with the body’s normal levels. After all the sun starts giving you vit d in the morning not at night.

  16. Ed June 6, 2017 at 6:34 am #

    Interesting, I follow a similar diet and am in remission for the first time in 5 years of refractory steroid use. Thought you might like to know that I can tolerate salads and the way I found to do that is the dressing. I only ever have baby leaf salad but I cover it with a homemade dressing cider vinegar, lemon juice, and olive oil. I quite often also have a cuppa after. Vinegar and heat do a lot of the digestive work for me. The greens improve my energy I’m sure. Good luck with it.

    ps SCD didn’t work for me, keto seems better but I’m more casual keto with v low carbs, as you say once a day max and first thing to go should symptoms return.

  17. Lee February 20, 2018 at 11:25 am #

    Can you share who your doctor is? My doctors only believe in drugs :(

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