Join the iHaveUC.com FREE email list, and join over 15,000 other subscribers managing their lives with ulcerative colitis

Why I Stopped the SCD Diet

Catherine on the coast!

Meet Catherine:

I live in a small town in the Deep South, and love that the weather is so mild I can have my morning tea out on the porch. (Except for in the summer, when it’s too hot by 6 am!). I teach undergraduates and have two small kids. I love to garden, travel and cook. Luckily, I have a wonderful husband who is always up for trying whatever crazy dish I come up with.

Some more about her:

I love art. I have lived in France, England and multiple cities in our very own United States. I’ve traveled to 34 countries – Now that I’m feeling better, I cannot wait to start to travel with my kids.

“Who needs this many teapots?” (Hang on, that wouldn’t embarrass me – It just makes me want a nice cup of tea.)

“That Catherine, she always has her head in the clouds or her nose in a book.” “Huh?” I’d reply, having been enjoying a little alone time in my head.

Current Symptoms:

Symptoms: What current symptoms do you have?
My doctor considers me in remission. I have 1-2 BMs per day, and only rarely see mucus. I haven’t seen blood in the toilet in years. Sometimes they’re rock solid, sometimes they’re still quite unformed. Only rarely (1-3 days per month) do I feel queasy, pain, bloated, or urgency. These rare occasions, though, take me totally out of commission. They remind me of how powerful this condition can be – And how vigilant I must remain.

Why I Stopped SCD / Paleo

Or, Food Allergy Testing Propelled Me Into Remission

I’d like to discuss an approach to controlling UC which is a departure from the Specific Carbohydrate Diet, a protocol often mentioned on this blog. I’ve had my symptoms well under control for at least six months. My current protocol is closest to AIP (Auto-Immune Paleo), but it is still quite personalized. I hope to convey the importance of finding one’s own way. If the approach that everyone else takes does not work, don’t be afraid to take a different path.

I was compelled to write this post when I found a box in the back of the closet. It was heavy and packed with old food diaries. For years, I struggled to identify one single digestive trigger for my symptoms – And failed. I was following the SCD diet, taking my medication, but couldn’t manage to get my symptoms under control. I was better but I was far from well.

My symptoms appeared when I was 12, lasted for a year, then receded until college. While living in a dorm, I no longer had my mom’s sensible cooking to balance out my binges. My dietary habits became appalling. I’d eat reasonably all day long, but by ten pm I’d gorge on pizza. I justified it to myself, saying that the cheese in pizza is full of calcium. I ignored the symptoms (diarrhea, light vomiting) telling myself that everyone had a funny tummy during finals. (Especially after eating an entire box of doughnuts during an all-nighter.) Spending a year in Europe was a revelation to me. Cities were bursting with bakeries, but every person was so trim. How? Small portions, moderation, and lots of veggies. Ah ha! While in Europe, my worst symptoms dissipated. The others, I ignored.
After about a decade of ignoring my on-again, off-again symptoms, I left work and went straight to the ER. For weeks, I had increasingly intense abdominal pain. I could not lift a jug of milk without grimacing. I could not hold my young child in my lap, fearing that he would press against my stomach. I had been sporadically vomiting for days. Pancreatitis was diagnosed and the best approach was digestive rest. While in the hospital, I napped and fasted. All nutrition was administered intravenously. It was as old fashioned as it sounds. Nothing to be taken by mouth, not even ice chips. Nothing should stimulate the digestive tract. (All very Victorian. I kept waiting for the leeches and laudanum to arrive. Mercifully, neither did.) After a short stay in the hospital, I was released with pamphlets on sensible diet and told that there was no medication for my version of pancreatitis.
I was back at the hospital within weeks. This time, I stayed much longer. Digestive rest worked again, hurrah! I was thrilled – Until a few months later, when bloody diarrhea appeared. Along with urgency, bathroom anxiety, crippling hunger and exhaustion. Eating became so fraught that I stopped doing it in public. Food felt like an enemy. We attended a wedding one weekend. I couldn’t make it through the thirty-minute ceremony without a trip to the bathroom. I didn’t eat at the reception, terrified of the results. That was the tipping point that pushed me to see a doctor. After my first colonoscopy, I was relieved to have a diagnosis and a prescription. The medication helped a lot, but didn’t eradicate my symptoms.

Within four months of my diagnosis, I had three C-Diff infections. That meant three courses of intense anti-biotics. One afternoon a nurse from the CDC called to ask if I’d been eating at the same restaurant repeatedly. Let’s face it, when the CDC has your personal number, something is not working. Besides, I had been making all of my own food. I knew that I needed to change tactics. While talking to friends at bible study, one woman told me that her aunt had Ulcerative Colitis. She treated it with a holistic approach and dietary changes. And had done so for decades! I called her immediately, and she’s been my guide through this journey. She was the first person to tell me that I could make the decision to view my UC as either a disease or as a condition. Incredibly, she discussed what I could do in concrete ways that made sense. She was the first person that I knew who used diet to treat a serious medical condition. Never had I seen it successfully done by someone with my condition. She gave me BTVC, along with other resources on SCD and the Paleo diet. These Real Food diets helped me so much – But I still needed something more.

 

After six months of SCD diet, then four months of Paleo (I removed beans and dairy, added root veggies), I felt so much better. Sometimes I only had 3-4 BMs per day, but still I felt depleted and exhausted. All. The. Time. I knew that ten months wasn’t so long – But everything that I read from online communities discussed how these diets instantly granted a ‘new lease on life’ and how they ‘had tons of energy.’ I beat myself up because I couldn’t put my finger on the issue. What was I doing wrong? I had very low energy and was constantly starving, always taking snacks if I’d be away from home for more than two hours. I would nosh on prosciutto and nuts and fruit and hard-boiled eggs between meals. Some days I’d devour 5,000 calories – All Paleo approved. So why was I still so hungry? Why was I still running to the bathroom?

My physician was very supportive of my dietary changes, but she wanted to run a panel of tests to see if something else was wrong. It turned out that the medications had reduced bone-marrow numbers, which were much worse than my previous aplastic anemia. My kidneys were not functioning properly. My thyroid was misbehaving, as well, so I was put on more medication to help regulate that. (Synthroid). She believed that the bone-marrow and kidney issues were side-effects of the medication, so advised me to slowly decrease the dosage. I felt, and still feel, so privileged to have a doctor who supports holistic practices. She demonstrates empathy and understanding at every visit – When she used the word remission, she hugged me!

Finally, I found a nutritionist whom I liked. She urged me to try a serum-based food allergy and intolerance test. (This is considered more specific than skin-based testing, which most allergists utilize.) With her help, I was able to shake nuts, eggs and nightshades. (I had reduced these, but had never totally removed them.) She helped me look at the situation objectively and removed emotion from the equation. Other potentially SCD/Paleo legal foods like beef, cauliflower, bananas, onion, cucumber, cumin and black pepper were pin-pointed as triggers. I was buying those nearly every trip to the grocery store! The first few weeks that I made the alterations to my diet, I felt brand-new. I was left with most meat and vegetables for my meals. I slowly, methodically reintroduced foods and have seen mostly success.

Current situation:

It’s been two years since I did the allergy/intolerance test. Still, I feel incredible. I eat some starches now. Never more than one cup servings and no more than twice a day. When symptoms resurface, starch is the first thing to go. I eat two quasi-grains, buckwheat and quinoa; also, winter squash, pumpkin, rice and most root vegetables. Ideally, I front-load my calories: a nice lunch and maybe a mid-day snack is better than depriving myself and eating a huge amount late at night. Coffee is back, although no more than one cup in the morning after I’ve eaten. The rest of the day, I have tea. Very rarely can I eat salad or raw veggies. I eat very little fructose. Yep, that means most fruits and some veggies are out. I might go for a week with no fruit. When I do have it, it’s a few slices rather than an entire piece of fruit. Sugar and sweets, even those made with honey or maple syrup, are bad news. I keep nuts to a low quantity, rarely more than 10 almonds at a time . (Which makes almond flour a big no-no.). I aim to make vegetables 70% of my diet, which means that I eat them at every meal and snack. I sneak spinach into everything. From meatballs to muffins, nothing is safe from greens. Rice protein is a daily habit. I still focus on lots of good fats, especially animal fats and coconut oil. Bone broth is always bubbling in my slow-cooker. Fermented vegetables are a pillar of my diet. This provides a constant and varied stream of probiotics to aid in gut health, and is so simple to make at home. I make my own sauerkraut, often with the help of my kids. (Rubber hammers, anyone?). I eat a lot of meat, primarily chicken with some pork, turkey and fish for variety.

Is my diet as nutrient-dense as it could be? Well, no. Perhaps not at every meal. However, I no longer see undigested and identifiable food exiting my body. I feel energetic, sparkling. I can last for 3-5 hours between meals. I have the energy to exercise, which makes me sleep better – Which gives me more energy. I feel that, finally, I’ve broken my own vicious cycle.

This is far from an easy fix. The nutritionist and the testing are not covered by insurance, and the $300 that the testing costs is serious money. However, when I think of the cash that I’ve wasted on food that I plan for, buy, prep, and then can’t eat – It was a cost that I was willing to spend. Find someone who is accredited and who will not charge you until you feel better.

I take my own food to 95% of restaurants, even to dinner parties. Arriving at someone’s home with your own dinner? That’s the height of rude. This is the South we’re talking about. Even dear friends have a tough time understanding why I show up at a dinner party with my own tiffin box. Despite the fact that they lovingly prepare (insert gluten/dairy free dish here), their dinner likely still contains things that will make me sick. Before social functions I give myself a pep talk. I am doing the right thing. I am taking a stand for my health. I will not be swayed. It helps to either bring a treat for myself, or, failing that, to know that I have something yummy on the horizon. (My sweet potato and coconut dumplings, yum!) I rarely drink, despite loving cocktail hour. When I do partake, it’s vodka and soda.

Medication: I’m down to one Lialda per day. Would I like to be off medication entirely? Yes. Do I realize how fortunate I am that I have reduced it from the four that I was once taking? Yes. I have totally stopped Synthroid, so I relish the small victories. I’ve stopped Bentyl, a dicyclomine as well as Hyoscyamine. (Both are anti-spasmodics. They helped quell the bathroom anxiety, but otherwise were full of negative side effects for me.)

Supplements: I take VSL #3 (a strong probiotic) twice daily. Zinc and Vitamin D at bedtime. I take enzymes before and after meals. (Pepsin/HCL Betaine, in one; Amylase/Lipase in another. This is likely connected to pancreatitis, but since these organs are all apartments in the same high-rise it warrants mentioning. Once I started enzymes, my BMs became much more formed. No longer was I able to identify food in the toilet bowl – hurrah!)
Lifestyle: I read a lot about the importance of stress management. Even so, it bears repeating. Remember that no one can control the cards that they are dealt. One can only control how we respond. Stress happens to us all. I try to count the ways that God has blessed me, because He is good.

It is so important to take time for yourself every day. Ideally, I’d go to yoga daily. Realistically, I at least try to do a few stretches. Maybe only 30 minutes, but I do something that brings me joy. Often, it happens before the rest of the house is awake. The easiest way to ensure that I get this time is to do it first thing. Sometimes before the sun is up. The important thing is that it happens.

Which brings me to sleep. Rest is important for healing, but sleep is even more crucial. I aim to put myself to bed very early, and to get at least 8-9 hours of sleep. I walk away from the chores that are haunting me and tasks left undone. Once upon a time, I would have used that time to putter about the house or to check social media – No more. (When I cave and give in to the smartphone’s gravitational pull, I feel so dreadful the next day.) I climb into bed, and read words printed on a page. Not a screen.

To conclude, if you’re struggling and haven’t seen results despite rigorous adherence to a dietary protocol, consider food intolerance testing. Ameliorate it with your own research. It was the springboard that helped get me back on the path to wellness. Everyone should make an informed, well-researched decision. And everyone might need a different path. Working with a professional helped me get there.

written by Catherine

submitted in the colitis venting area

Save

Save

Save




alergy test, paleo, SCD

24 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.

Leave a Reply