SCD and the Search for a Knowledgeable Nutritionist

Intro:

UC’er for nearly 7 years. Diagnosed when I was 22. Asacol and Imuran all 7 years and the occasional prednisone (more so in the early years). Prednisone free for 2 years. Now trying SCD.

Starting Specific Carbohydrate Diet with a Nutritionist:

I was first diagnosed in the spring of 2005. I was a healthy 107 pounds (I’ve always been a small person and 107 was a good healthy weight for me). and that summer, I dropped down to 78 pounds.
That summer, I wasn’t really sure how to take care of my colitis, and helped a friend move on what turned out to be the hottest day of the year. I got dehydrated and for days, family members were trying to force food down my throat, telling me I needed to eat if I wanted to gain weight, but I kept puking and pooping everything out. I couldn’t keep anything down. After 3 days of this, I went to see the Dr. and he hospitalized me immediately. As soon as that IV started flowing into my veins, I felt sweet sweet relief.
My mother was so afraid to feed me anything when I got home and I got angry because I was so hungry. I got up to go to the bathroom and passed out because I was so freaking hungry and malnourished. She called an ambulance and when I got to the hospital, they gave me a cheeseburger and I immediately felt a bit of strength return. Most expensive cheeseburger ever.
My mother hasn’t let go of the diet thing and in the past few years, we discovered SCD. I was living overseas and circumstances didn’t allow me to begin the diet, but I began adapting a healthier diet. I was working out regularly (2-3 times a week) and eating properly and gaining 1 pound a month.
I moved back to the States recently and decided to go full speed ahead with the Specific Carbohydrate Diet (SCD).
However, I keep losing weight. I have maintained a weight of 90 pounds for the last year. I had a flar overseas which caused me to drop from 100 lbs to 90 lbs. Maybe even a little below 90 when I was at my worst.  Since, I’ve been back (4 months now) I haven’t been able to raise my weight over 90 pounds. I try eating the Standard American Diet (SAD) just to gain enough weight to start the SCD, but then I feel gross and unwell.

which brings me to…

HELP!

I’m having trouble staying on the SCD.

How many of you that have been successful on the SCD worked with a dietician/nutritionist?

I’m having trouble finding anyone in my po-dunk hometown who has even heard of the SCD. I have been trying, but I’m not getting enough calories and I’m rather underweight as it is. Not dangerously so, but it could become dangerous if I lose more weight, which I tend to do when I start the SCD. I’ve started and stopped 3 times now. Each time, I lose weight and start to feel weak and panic and eat illegals just so I have enough energy to do things. But I end up feeling physically awful after eating these illegals.

I just don’t feel like I”m going about this in a safe way without a nutritionist, but no one here has heard of the diet. Should I consult with a nutritionist and have her read Breaking the Vicious Cycle and be her guinea pig? Are there any nutritionists I could work with via Skype or some similar technology?

Any advice is greatly appreciated!

Thanks!

Colitis Medications:

I’ve been on Asacol for the entire 7 years. I have no idea what it does or even if it helps. I just take it.
In the beginning, I didn’t take it for a month and felt fine. But then flared a few weeks after that month ended and was reprimanded by Dr.

written by: “7 Year Vet”




SCD

9 Responses to SCD and the Search for a Knowledgeable Nutritionist

  1. yashinaki February 20, 2012 at 11:56 am #

    Hi, I have been on the SCD for 4 months now, with no medication. The symptoms are long gone.
    Adapting to the diet was not easy, however I had to make a choice. I have not cheated on the diet at all, and am strictly sticking to it. I am getting more than enough calories on the diet. Below is a my sample menu for the day:
    morning – herbal tea (chamomile), sweetened with two spoons honey
    1 large apple
    1 banana
    noon: meat with vegetables
    afternoon: herbal tea, sweetened with honey
    1 apple
    1 banana
    dinner: meat with vegetables OR nuts/dates OR eggs with salad

    As you can see from the list, all honey/meat/eggs/nuts are highly nutritious. It is true that without bread one’s stomach does not feel that full, but this one gets used to. The bottom line is that you can easily get all the calories you need.

    I am also taking probiotics regularly.
    I am confident that this diet is the way to go, and am surprised to see that many people prefer to suffer instead of giving it a try.

    Best regards,
    Yavor Angelov,
    Bulgaria

    • Bev February 20, 2012 at 4:38 pm #

      Wow…cool!

      That’s great information!

      Thank you Yavor.

      Cheers,
      Bev:)

  2. Maggie February 20, 2012 at 8:03 pm #

    Stay on the scd diet but eat more meals, more bananas. Best of luck to you.

  3. Adam
    Adam February 21, 2012 at 12:07 am #

    HI There 7 Year Vet,

    Thanks for sharing your story. I think I know a bit about how you are feeling, and probably some constant frustration with the “no weight gain” happening over and over again.

    It sure can be frustrating. But don’t let it beat you. You’ve already come a very long way, and that’s something to be proud of.

    For me, I have the hardest of times gaining weight unless I’m fully in remission, meaning no symptoms and hard poops. What has worked for me for quite a while( and I’ve been using the SCD diet for over 2 1/2 years now non-stop) has been cranking out smoothies for meals throughout the day. Simple, easy, and pretty darn tasty in my opinion. I throw in natural peanut butter along with honey and berries and OJ. OHHH so tasty. here’s a link to a recent smoohtie i made. https://ihaveuc.com/have-you-ever-made-a-coco-colitis-smoothie/

    Good luck to you, and wish you well. I wish I had a huge list of local nutritionists who were SCD friendly, that would be a great project to start up…I’ll put it on the list.

  4. Jim February 21, 2012 at 5:58 am #

    I’d also like to know something about the SCD diet. It’s been one year since I was diagnosed but my trips to the bathroom havent stopped. Although the blood and pain is almost gone. I have given a try to SCD diet but things haven’t really changed. So I’d like to know how long one should be on it to see some progress. I’d he very thankful If some one could give an insight about the very start of the diet. Thanks.

    • Yavor Angelov February 22, 2012 at 6:26 am #

      There are two books, which could provide a wealth of information for you – the first is “Breaking the vicious cycle”, and the second is this one:
      http://www.gutandpsychologysyndrome.com/
      The latter provides indepth explanation about how the diets work.
      The rough estimate for following the diet is 2 years. This may seem like a long time, but there are two things to consider:
      1. The hardest time is the first couple of months – after that, you get used to the diet. Depending on the season, the transition can be even smoother, for example if there are a lot of seaonal fruits.
      2. If it is true that the gut flora is related to UC, one cannot expect an overnight miracle against a disease, which has been accumulating for years, if not decades.

      Standard medications have a ton of side effects, and are only temporarily effective. Thus, I believe that it is only logical to pursue another avenue for dealing with UC – be it diet, fecal transplant, or any other approach aimed at removing the cause, rather than battling the results.

  5. 7 year vet February 22, 2012 at 5:33 pm #

    Wow! Thanks, everybody for all the encouragement and the advice. In my seven years, I don’t think I’ve ever been in full remission (i.e. no hard poops). The SCD is motivation to have hard poops again.
    I think for now, I’m going to give the SCD a rest. Weight gain is important right now, and although being on the SCD has indeed opened my eyes to better foods that make me feel better, I can’t adhere to its strict rules. Hopefully over the next few months, I’ll gain some weight, do some more research and get back on the SCD field with stricter adherence.

    Any other info on weight gain would be highly appreciated!

    Grateful,

    7YrVet

    • Catherine
      Catherine Radley February 28, 2012 at 12:59 am #

      Hi 7 year vet,

      When my colitis was at its worst I dropped from a healthy 136lbs to 110 (underweight according to BMI stats), so I know how you feel about the weight loss. I agree with Yavor about getting hold of the books and reading them, also google scd lifestyle for another excellent reference on the diet.

      I’m largely following SCD (I eat cocoa and a little bit of homemade sourdough bread), and have come to the view that you really need to play around with what works for you. I know Adam and yashinaki have found success with eating lots of fruit/smoothies, but if I were to eat 4 pieces of fruit in a day, I’d spend the whole night in the bathroom. I limit sweet stuff to a big spoonful of cooked fruit with breakfast, and maybe a bit of honey in something baked during the day or in the evening, and maybe one piece of fruit as a snack. I’m also cautious about eating much more than a small handful of nuts per day, because they are pretty hard to digest.

      What really help me with getting the weight back on was (1) eggs (and/or meat) for breakfast and (2) eating lots of fat.

      For breakfast, I eat two eggs (often in the form of a pancake – whip them up with a heaped tablespoonful of coconut flour and a tablespoonful of melted coconut oil or ghee or butter), some cooked fruit and a heap of homemade yoghurt.

      With lunch and dinner, I was adding a tablespoon of olive oil poured over whatever I was eating. If you don’t like olive oil, find a fat you do like. Coconut oil, butter, whatever. I’ve stopped doing this now, because I’m back to my pre-colitis weight and don’t want to gain any more.

      Another good one was avocados – that was my afternoon snack every day for about 3 months.

      Something else that helped me was having a strategy of how to eat enough calories in a day. I used fitday.com to plan how to go about eating enough to gain weight – putting in my basic meals and then figuring out how much else to add.

      Do you make your own yoghurt? You could try adding cream to your milk to up the calories there (or make it with all cream – comes out like sour cream), which is pretty yummy too.

      Good luck

      Catherine

  6. Judy April 2, 2012 at 10:16 am #

    Hi 7 year vet,

    I am a 21 year vet,

    I was diagnosed with IBS when I was 21, I had salmonella poisoning at age 29. This poisoning lead to being diagnosed with UC. Then at age 39 I was diagnosed with Celiac Disease. I must of changed my
    diet habits at least 10 times over the last 21 years. I’ve tried no dairy, no meat, no spicy or citrus. Of course I had to go gluten free after the Celiac Diagnoses. Going GF helped but not enough. Then after years of searching I found the SCD Website. I have been on it for 3 months. It is really working for me.

    What I have learned is if you have UC and you start this diet hold off on the dairy, spicy, & citrus
    foods for a couple of months, and very slowing introduce new things. Keep in mind Doctor Haas who created this diet was treating mostly babies & toddlers. He had to give them Milk. We as adults can go longer without the dairy. Try having only SCD recommend soups, and soften all your food. Try cooking allowed SCD meats & veggies by steaming or making your meals in a slow cooker, and hold off on the nuts for a while and when you first have the nuts eat them in flour form for a while. In Doctor Haas book he does mention UC patients will relapse at the beginning I think the reason for this is UC & Crohn’s patient are more sensitive to dairy, and harsh textures VS patient who just have Celiac.
    I have absolutely no canned foods, and don’t eat the vitamins because some had sugars in them.
    and I pay close attention to how the foods make me feel. At the beginning I could only have poultry and fish, beef was too hard to digest. But now I can have small amounts of beef, and citrus, and the SCD cheese. (Was told I would never be able to have dairy again) I haven’t made the yogurt yet.

    I hope this helps. Good luck let us know how it turns out for you.

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