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Auto Immune Response Soon After Starting SCD

immune response to specific carbohydrate dietIntroduction:

I am a happily married mother of two teenagers. I am a licensed but not practicing Cosmetologist. I love reality TV, DIY and The food channel shows.

Some more about me:

I was born in New York moved to Florida when I was 9 and now reside in Mississippi.

Symptoms:

Currently, My symptoms include slight bleeding and occasional diarrhea, gas, hair loss, Migraines, Leg Cramps and occasional upper right quadrant pain.
Before SCD, my symptoms were diarrhea, gas, bleeding, hair loss and cramps and upper right quadrant pain.

Auto Immune Response After Starting SCD

I was diagnosed with Mild Ulcerative Colitis about 1 year ago. It was upgraded to severe Ulcerative Colitis about 3 months ago. I have been ill for about 1.5 years. I started on Mesalamine initially but 4 or 5 different brands later and a host of intolerable side effects I stopped that medicine and I started on steroids. Steroids were the only thing that helped. I almost started Biologics but I heard and read not so nice things about them. Cost was another factor so I decided not to start them. After some research I decided to try the SCD as I had a suspicion that food may be the root cause of my issues but the doctors only want to push medicines.

I have started on the SCD for the second time now, (Once about 2 months and again a week ago.) Both times after 5 days I started to have an autoimmune response, with skin rashes and itchiness on my right leg and in some not so nice areas of my body including, but not limited to the roof of my mouth, right side only. My doctor says its auto immune related.

I’m not sure if the rash and itchiness is a result of something on the SCD diet and maybe I might need to go to a variation of the Paleo diet. I have not had dairy, except legal cheese as I can’t seem to get the homemade yogurt quite right yet. I have significantly increased my consumption of nuts. I have not read anything online about people having autoimmune responses after starting the diet. I am very frustrated and just thought someone out there had the same reactions and can steer me in the right direction.

Is this autoimmune response something that others have experienced and if so, how did you reverse/stop the side effects?

Medications:

  • Lailda – abnormal blood changes
  • Asacol – Severe Leg cramps
  • Asacol HD – Severe Leg cramps
  • Apriso – Migraines
  • Canasa – abnormal blood changes
  • Uceris – Didn’t work at all and progresses me to severe UC
  • Prednisone – Worked the best but the weight gain was terrible

written by Kim M

submitted in the colitis venting area

Adam - Colitis patient

Adam Scheuer – founder of iHaveUC

“Hey Kim, I don’t normally jump into to posts this way but I would most definitely NOT be taking in LOTS of nuts when you are symptomatic with UC symptoms which you clearly are with the slight bleeding, cramping, diarrhea etc… Nuts are among the most difficult things for people to digest UC or not, and that said, they should be avoided if you follow the SCD diet while symptoms are active.  Plenty of time for nuts (and almond flour if you like) when things are healed.”





16 Responses to “Auto Immune Response Soon After Starting SCD”

  1. Kim MSeptember 30, 2013 at 7:59 am #

    Thank you Adam! Since writing the above I have stopped eating nuts thinking this might be a big part of the issue and my symptoms, all but the rashes are much better and I have seen a big improvement.

    • AdamSeptember 30, 2013 at 6:17 pm #

      Awesome news Kim! best of luck with continued improvement to you:)

    • Joan H
      Joan HNovember 1, 2013 at 10:05 am #

      Hi Kim – I was just reading your comments about the rashes you were having after starting the SCD. Do you have any allergies to nuts – peanuts, tree nuts (walnuts, pecan, hazelnuts, etc?) If the rashes stopped after following Adam’s advice on holding off on the nuts in your diet, you might want to consider being tested for allergies to peanuts and tree nuts. You mentioned a rash even on the right side of your mouth, so definitely worth checking into. Food allergies are also an autoimmune response. I haven’t been able to get fully into SCD or paleo and many other diets because I have allergies to all nuts, so I’m trying to modify those diets for myself which is tricky. Anyway, your symptoms (which are similar to mine with the allergies) sound like they might be allergy related. You don’t want to mess with that if they are – mine became life threatening so I carry an epinephrine pen in case I have accidental exposure to those things.

  2. Juliet
    JulietSeptember 30, 2013 at 1:00 pm #

    Hi Kim,

    Exactly what Adam said regarding nuts. And maybe avoid cheese too. The homemade yogurt is easy, we bought a fairly inexpensive yogurt maker.

    I tried Paleo diet when I was in remission. I can’t say it worked for me and not sure if I agree with some of the principles of it. I would certainly, whilst experiencing symptoms make sure all your food is cooked and soft! I’m on clear fluids only right now which is exciting!

    • Kim M
      KimSeptember 30, 2013 at 1:26 pm #

      Thanks Juliet!
      How long will you have to be on a clear fluids? I am trying very hard to stick to the SCD as it has really been helping so much. As of right now I am close to symptom free and I am not eating nuts anymore. I, like you, am not sure of the Paleo diet either. I think Ive conquered the Yogurt, I have a yogurt maker too, just new at it and it seems to be a bit watery but its good. My worst thing is the itchy rash that seems to be popping up on my extremities. Have you experienced anything like that?

      • Juliet
        JulietOctober 1, 2013 at 8:09 pm #

        Hey! At the moment I’ve very dry skin especially on my hands which is splitting open. It is very itchy and seems to react to any moisturizers. I think it’s side effect of prednisone. I am having homemade chicken and lamb broths with everything strained out and I’m also watering this down. This is mainly due to how painful and bloated my tummy gets when I try to eat anything.

        My GI doc doesn’t seem to think anything else is going on apart from flare. I think I’m either reacting to Asacol or have a bacterial infection!! I too recently reacted when I tried to eat nuts! My body is so sensitive to everything right now!

        I’m glad you’re getting the hang of the yogurt, you can get a bit of separation I think it’s normal. Stick with the diet as its clearly working for you!! As far as the itchy rash, it could be medication related. It is possible it’s caused by something topical too.

  3. Richele
    RicheleSeptember 30, 2013 at 5:17 pm #

    Hello Kim,
    I’m very sorry you are going through all of this. As if it isn’t already bad enough on it’s own…then factor in MORE autoimmune BS!! :(
    At least you are on the right track with diet…I mean at least you are considering diet instead of meds. I hope it eventually helps you! I’m still waiting for it to help me….although I haven’t been 100% strict with what I eat. (I had 2 Oreos today.)
    Just gotta keep on keepin on.
    -Richele

    • Kim MSeptember 30, 2013 at 8:46 pm #

      Thanks Richele,
      I know it’s going to be rough to keep on such a strict diet but for some reason this diet has been easier than any other (weight loss) diet I have ever tried and I think it’s because I know it will and has already started helping me coupled with the fact that the meds have such horrible side effects. I just pray that the diet works and that I do not have to go back on meds. I really don’t know what I will do in that case so ill think positive. Like you said keep on keeping on ! Hope you do we’ll also!

      • Allison-3
        Allison TranterOctober 4, 2013 at 6:53 am #

        Hey Richelle-
        I was chuckling at your “two oreos” comment. I have two boys, ages 12 and 14. They are super healthy eaters but definitely sneak in a crappy snack here and there when they come back from a bike ride to the convenience store. i, ALSO, used to cheat and take nibbles and I always paid for it.
        Seriously though, once I really committed to stop cheating my colitis got TREMENDOUSLY better. Believe me, I dream about ice cream, coffee, chocolate and wine and I’d like to think someday I can indulge again… There is a Rufus Wainwright song “Cigarettes and chocolate milk” all about craving the dark things that are bad for us (I think his included some heroine maybe, too). So, this is not a lecture at all… but feeling good is the best thing ever.
        I still have gluten free oat cookies with coconut sugar and lots of butter once a week and I make almond milk chai every morning… so I guess it’s just about new rituals. And for me drinking coffee made me somehow feel like I was normal – so really for me it’s about changing my perception. I am not normal because I have a stupid autoimmune disease.
        All the best!
        Allison

  4. RobOctober 1, 2013 at 4:05 pm #

    Rachel I know what you mean about temptation with those oreos! What gets me is when I I have a hankering for some PB&J. That is what usually breaks my diet :(

    Once I finished my pred. my flare came storming back. What got it under control was rowasa and asocal hd. It’s been a week now and it is so amazing to me how the colon remembers how to do its old job after I went years of not passing anything but blood and mucus and rabbit bms.

    • Kim M
      KimOctober 1, 2013 at 5:12 pm #

      Those cravings are awful aren’t they? I have been trying so hard, from going to having bread everyday, 3 times a day (that’s my weakness) to having none at all. Sometimes all the protein makes me nauseous, but the bread and snacks is probably what got me where I am.
      Your lucky yours is under control Rob, Im almost there with just the SCD. Im gonna keep plugging along, but this, by far, is the most challenging thing I think I have had to do in quite some time.

  5. LizOctober 2, 2013 at 7:14 am #

    I haven’t tried the SCD yet, but I’ve read the book and I’m wondering if your rash and all is related to “die-off” as well as an intolerance for nuts? If you’re experiencing die off, the balance of bacteria/fungus(yeast)/toxins gets all out of wack for a bit, and i would imagine that could cause rashes… Just a thought. Good luck!

    • Kim M
      KimOctober 2, 2013 at 10:39 am #

      Thanks Liz,
      By “die off”, do you mean releasing what you mentioned above out of the body? If so then yes, that’s what I was thinking and I think Ido have a sensitivity to peanuts, but I am staying away from nuts for a while. The rash pops up as small eraser head size itchy spots and then goes away only to appear somewhere else. Its very odd to me but ill take the little nuisance with how much better I am feeling since starting the SCD. I have, so far, had great luck with it, but my body definitely reminds me if I have had something I shouldn’t have. I immediately get gassy. So I guess its also helping me learn what my body should/should not have.

  6. LindaOctober 2, 2013 at 7:34 am #

    Kim,
    I have begun making yogurt at home, using coconut milk, along with a package of Knox plain gelatin and a starter from my previous batch of yogurt. It turns out almost like Greek yogurt, is ever-so-slightly sweet, dairy free and absolutely delicious. I have a one quart yogurt maker and between both my husband and me, we go through two quarts a week. Because the yogurt maker is the quart size (instead of individual ramekins), I have to cook it for 12 hours. If you aren’t using a yogurt maker, try letting it set up for a little longer, before refrigerating. I am also on the SCD diet and find when I stray from the diet for even a bite, I pay the consequences with a flare-up, so I am trying to stay as close to the diet as possible. My husband has no dietary problems, so we are at opposite ends of the food spectrum, but I insist that he eat the yogurt daily. I am also diabetic, so I am doomed to dry skin. I use Neutrogena hand cream before bedtime, along with an ordinary hand lotion after each wash of my hands, which works very well for me. The Neutrogena was originally developed for cold Nordic life.

    • Kim MOctober 3, 2013 at 10:54 am #

      Thanks Linda,
      I didn’t think of using coconut milk for the yogurt. Can you get it al any normal grocery store. I will definitely try that. I have a yogurt machine also but it does have the individual ramicans and it still requires a 12 hr cook time :(. I have been trying to follow the SCD very closely. I had a grilled chicken caesar salad last night. It only had lettuce, chicken tomatoes and some Parmesan cheese and I made the dressing but it upset my stomach and went through me within an hr. I have never had that happen before and now this morning I am flaring again with blood and I’m pretty weak also. Having trouble eating anything at all now but drinking plenty.
      I am also diabetic and diet controlled but my skin is so dry also and the rashes make it worse. I may need to try the Neutrogena cream. Thank you and Stay well !

      • LindaOctober 3, 2013 at 12:49 pm #

        Kim,

        I am unable to enjoy lettuce or tomatoes. Like you, they run straight through me. Sometimes, the lettuce and the tomatoes look like they have not even been digested, much like corn. I always enjoyed a green salad with my own dressing, but now I am unable to eat them. I am stuck with carrot salad and cole slaw, which, for some reason, do not bother me as much as the lettuce and the tomato.

        You could definitely use the yogurt. Sometimes, if I am eating a high fiber meal, I eat a small bowl of the plain yogurt first, then eat. Also, a tsp of apple cider vinegar with mother, slightly warmed in 1/2 cup of water and 1 tsp. of your favorite sweetener, will work wonders, along with the yogurt, BEFORE a meal, especially if it is high fiber.

        You can purchase the coconut milk at the grocery store, unless you want it organic and in safe containers. I get mine at Publix and occasionally at the health food store. At this point in my life, I am more interested in the good benefits of the yogurt, than in the bad benefits of non-organic coconut milk.

        I hope you are over your bad experience and feeling good again. Best of luck!

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