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Getting Worse on SCD

I am new to the forum and the mother of a 23 year old who has had Crohn's for 22 years. We've been through it all and I won't get too much into the details here, but basicly he has inflammation of his entire large intestine (and it is not UC because he has had two flares in his small intestine), most of the medications make him worse, he has had no surgeries, and the only drug that really worked long term was Cipro. We found out recently he can't take any of the biologics and since he moved home to finish his last year of college, it seemed like the right time to try the Specific Carbohydrate Diet. I am very well read about the diet and knowledgeable about many of the recipe sights. My son is presently on an antibiotic for sever acne (doxycycline), he was unable to take Acutane - just another drug he can't tolerate. He takes no other drugs from the gastro at present. Can't find one he tolerates.

So we started the diet and things seemed to go well at first. He did have flu like symptoms and a runny nose which seemed okay (he took some epsom salt baths). By day three, his diarrhea had become all water and day four there was bright red blood and alot of gas. He has lost 8 lbs so far and has been on it eight days. He is going to the bathroom about 10-12 times a day about double what he usually does. I did not initially stop the doxycyclline because when his acne improved a about 6 months ago and we tried to stop, he became much worse - terrible gas and watery diarrhea. He has a real issue with milk too and milk products and hasn't had any for 16 years. I planned to start the diet and after the intro stage to stop the antibiotics. He normally takes probiotics from his naturopathic doctor, but because they have FOS which is not legal, I stopped them for a few days, since he was still on the antibiotic I thought it would be okay. I was going to try and find a safe probiotic for him that had no FOS and no milk products that might make him worse. We were still going to try the yoghurt a little later.

I think the food passing through him so quickly is irritating his intestines, rather than a bacteria die off at this stage. It could also be that bad bacteria or C. difficile has gotten hold, but I don't think so. I don't know whether to forge on or stop and get his weight back up and try again. We are both so enthusiastic about the diet and feel it might work for him because alot of his issues seemed to be bacteria related. He is presently at Stage 1 of diet. He normally eats whatever he wants (but very healthy) and never has a problem - fried eggs, apples with skin, peanut butter. Getting him enough calories is starting to be an issue and he is tiring of the butternut squash and carrot purees. I would like to try the nut flour muffins or something else more substantial so he doesn't lose interest and can provide something more substantial to eat so he doesn't lose more weight.

By the way, he is 6'5'' and normally weighs 190 lbs (which constantly baffles most doctors when they see how much inflammation there is in his intestines). He only has a little pain when he uses the bathroom. Otherwise leads a pretty normal life, hasn't missed a day of college classes, works out etc. But we know he can't continue like this with the inflammation the way it is.

I have looked all over the internet but can't really find much about people who had trouble like this with the diet. I know this is very individual for each person who tries the diet, but if anyone has thoughts or had experiences like this I would look forward to hearing from you. My son will see his naturopathic doctor in a week and he can tell us alot about what is going on with him once he tests him. He is more familiar with GAPS, but knows quite a bit about SCD. This doctor has helped him so much over the years, but even his remedies are not working as well as they used to.
I do not eat the specific carbohydrate diet. I eat a paleo diet, but from my understanding the two are similar to each other. When I began avoiding wheat and other grains I recall eating many other foods high in fiber, vegetables and fruits. And that made me really, really sick for awhile. it took me a bit to figure out what was going wrong.

i think what happened is my inflamed colon couldn't handle the fiber. It is not possible for me to eat carrots or a handful of blueberries for example. Well, I say that, I can eat some blueberries for a day or two, but by the 3rd day I'll be in serious trouble. I know that many will say that fiber is good for the digestive system, but to see an alternative view on the problems fiber can cause thought Dr. Eades had a nice write up.

Hope that helps, and best to your son! Agree, being that ill would be stressful on his college work. It certainly was on me.

"A cautionary tale of mucus fore and aft"


Oh, and not to over do it with articles, but recall seeing this study piece about paleo eating helping with reducing ache. I've read that is one of the reasons why paleo has become popular with many is the nice looking skin some develop.

"Got acne? Go primal"

I hope your son is improving,
The stages of SCD are designed to give the intestines a bit of space to heal before introducing more foods.
the stages - http://pecanbread.com/p/how/stages.html
some recipes - http://www.scdandme.com/stage-1/

Stress is always going to have an enormous effect on our intestines and IBD, so some measures to reduce that will be as important as diet (meditation, exercise, massage, tai chi, etc

If he is having problems then maybe there is something still in his diet that is an issue?
All packaged foods are suspect, there may be an ingredient/additive that you missed,

It might be eggs or nuts, some foods are problems until intestinal permeability returns to normal

I started with SCD but moved to Paleo and as i healed went to paleo 2.0
Best Wishes
Getting Worse on Scd

Thank you Beach and Hugh for your helpful remarks! I haven't replied sooner because I have been cooking nonstop and don't have much time for anything else, but I am getting the hang of it. My son is doing better and his weight has stabilized at an 8 lb. loss so far - I realize that for him right now getting enough calories is very important. This is one time his 6'5'' body is at disadvantage because of the amount of calories he needs to maintain his weight.

We are still very committed to the diet and you are right that there were a few illegals (in his supplements and also maybe eating eggs for breakfast and too much fruit.) I am definitely going to do more research into the Paleo Diet and the other websites you recommended. When my son first became ill 22 years ago, there was so little info out there and now it is just amazing what you can find on the web!

Thanks again!!
Hey Gardengal, I am also new to the SCD diet (day 20 for me). I have Crohn's in my large intestine and sound a lot like your son (regular weight, pretty active and no surgeries). At first I did drop some weight...I'm not 100%sure how much but I'd guess around 4-5 lbs. But it does come back.

I also had some watery stool at first with cramping but that has calmed down considerably. Right now I'm only experiencing mucus and bright red blood on the side of my stool (which I suspect is because I've got a really bad hemorrhoid internally which I plan to discuss with my doctor at my next appointment).

I noticed that almond flour was harsh on my stomach at first, as was the SCD yogurt (I'm not sure your son is eating it). I had to ease into the yogurt and I'm still not using a lot of almond flour as it causes bloating. For me including lactose free cheeses has been wonderful (I haven't eaten cheese for almost 10 years). I've also had some pleasant side effects of the diet like a decrease in 'seasonal allergies' and increased mental clarity.

I just wanted to let you know how my experience has been in hopes to ease you (and your son's) worries. Please let us know how he goes with the diet.


Crohnsforum Science Advisor
Is your son eating the SCD yogurt?

Also, has he had food allergy testing done?

I am going to be direct but please do not take it the advice as being 'non-supportive' or non-understanding.. I am here to help but just want to limit my time on the advice boards because there is really good threads going on the 'SCD support' side of things..

First.. You really need to get a handle with the SCD diet. You cannot mix it up to your own flavour to suit 'likes'.. This defeats the puprose of the diet and it will not accomplish the results desired. You must be strict with the diet and at MINIMUM.. 3 - 4 weeks MUST pass on being strict to really give a true evaluation if the diet will work for your son. This diet had healed THOUSANDS of people with various forms of IBD and other diseases such as autism.. Your son must learn he is eating the food to get healthy, NOT cause he likes it.. With this attitude, the results will come and they will drive the incentive afterwards.. (+ hes has you to cook - lucky man!!!) haha :)

A quick overview of your previous posts.. It sounds like your son is battling heavy bacteria issues since it is the antibiotics that are helping him out solely! This is great news!!! Do you know your son's acne is possibly 'allergic' reactions to the food he currently eats?? Adding accutane to this problem is FUELING the fire!!!! Accutane is being linked to IBD because it eats your gut lining!! Who is your DR.!!?? Geebus..

LOOK AT THIS LINK: (from the CCFA to boot!!!)


MY recommendations:

1. Get your son off the accutane. The diet will take care of his acne, I'm sure of it!
2. The naturopath is probably feeding your son 'slippery elm' etc.. Guess what.. If you have a heavy bacterial issue to begin (which sounds like your son has - Fungus).. Slippery elm is gonna be devoured by the BAD guys first!!!
3. NO dairy (no cheese, milk, SCD yogurt) This IMPORTANT when inflammation is present.
4. Continue with the CIPRO / FLAGYL combo..
5. Follow steps 1 - 4 and have your son eat strictly puree veggies, proteins.. EVERY MEAL (All the SCD legals) He should be eating 6 times a day minimum!! He's 6 '5!! I'm 5'9 and I weigh 192lbs and I'm under 9% body fat.. I eat 6 times a day minimum!!

I'm sorry for being so direct.. Its just unfortunate to see how diets are being mixed all over the place but results are expected overnight..

I know you guys can do it.. I had the EXACT same problem as your son at the very beginning... Don't listen to Dr.s who say they can pinpoint flares to the area of the bowel!! They are full of !&^@!! Your boy sounds like he has it in the colon strictly and this diet will do wonders! Good Luck! :)
Almond flour is only to be tried when the 'D' is at a minimum or non-existent.. Ensure it is flour, no tiny chunks of nut etc... This idea goes hand in hand for fruits with seeds.. They will bother your gut if it is inflammed, thats why they need to be avoided when heavy inflammation is present..
Thanks Caldotis, Judith and Gstar for the helpful comments! Yes, I realize now that we added the nut flour muffins way too soon (and we did not get the flour as lump free as I would have liked either - we will practice making that for later hopefully.) We have gone back to square one on the diet eating just hamburger patties, chicken, fish, and all of the following (all pureed) -carrots, yellow squash, zuchini squash, butternut squash. Also apple and pear sauce and lots of chicken and beef bone broth. No eggs, dairy and for now he has stopped the grape juice and grape juice jello to see if that is what is giving him problems. No scd yoghurt for now because of all his milk issues, but is taking scdophilis for a probiotic.

To answer your question Judith -Yes, we had him allergy tested by two different methods last summer. They both came up with the same results - he is allergic to wheat and gluten, milk, soy and to a lesser extent egg. After we removed these from his diet we noticed considerable improvement, especially with gas. His acne got a whole lot better too, but when we tried to stop the doxycycline for the acne, the gas immediately returned as well as watery diarrhea. Had to put him back on the doxycyline.

He saw his naturopahtic doctor this week who is very enthusiastic he try to continue with the diet. We addressed the slippery elm issue too as there was a small amount in one of his remedies.

Gstar -thanks for the your post. Yes we were definitely doing some things wrong and we see that now. He is trying to eat more meals a day to get those calories up.

He is still worse than when he started the diet (now has watery diarrhea, more bright red blood and going more often (Now unable to sleep through night). Don't really understand this because the foods should not be irritating. Three weeks ago he ate raw carrots and apples for lunch before he started the diet and no visible blood and going less often. But he is enthusiastic to continue with it longer.

If anyone has any other thoughts, would appreciate hearing form you.

Thanks again!
Hi Gardendal,

No worries.. Hopefully its all about people helping each other on this site and I know that is my intention when I can! :)

I strongly suggest doing the Cipro / Flagyl combo.. Its a powerful 1-2 combo that combats even protzoa's type of pathogens.. Tetracyclines don't even come close in comparison to strength. If your son has pus in his stool, why Dr.s aren't suggesting this.. Wow.. You really need a new one. Sorry to be frank..

Thanks for your reply. My son was on Cipro all as a teenager, it worked like a miracle pill for him (the only times he ever stopped a flare in its tracks was the first time he stopped drinking milk and those years he took Cipro) It was great because he could take it for 2-3 weeks then stop and often not have another flare for 6 month to a year. The first time he took it the flare stopped with the initial pill, the next time it took 2 pills and the next time 3. It finally stopped working altogether about 5 years ago. I always felt the bacteria might be mutating and that is why it stopped working, I know alot of Crohn's medicine can do this over time. Flagyl does not work at all for him (he was on it two different times)and gets lots of blood when he takes it. He does not have pus or mucus normally.

We just started seeing a GI who is the head of Gastroenterology at Cedars-Sinai here in L.A. (One of the best in U.S. for Crohns) He's also doing some very interesting research on Crohns's. Just met him once so far, but impressed especially when he was very open to the other holistic therapies we had been using. Looking forward to seeing how it goes with him.
Sorry. I cannot help with this thread. Good luck Gardnegal, I wish you the best with your your new specialist. I never heard of 1 pill that could resolve a flare, I'm dumbfounded by that.
Hi Gardengal..

Your son's case has my wheels turning still.. Sorry. I promise this will be the last feedback from me on this subject. I have a feeling that your Naturopath could be supplementing anti-candida and possibly liver support products?? I just want to forewarn you that naturopaths do NOT do liver enzyme testing, so how do they really know if the liver is an issue?? They guess. And guessing without data is shooting in the dark and when your taking many other medications, 'interactions' can occur between 'herbal' and 'medical' remedies.. For example: Your slippery elm would cancel out anything that was taken at the same with it cause it does a great job of coating the gut making absorption almost impossible. Therefore interfering with the 'expected' results of some modifications.. As for the anti-candida.. Again.. If your son HASN'T been specifically diagnosed with Candida Albicans as the mainsource of bacterial overgrowth, these types of products are a waste of time for people with IBD, who are battling flares that are going on for weeks, months, etc.. That is why I suggested the Flagyl / Cipro combo because its the strongest known and will do the best job of cleaning everything. That's why its key to be strict with the diet and ensure ONLY the 'good' guys will survive in the end. And this could take a considerable amount of time (months, even a year or close to 2 yrs) BUT.. You will have a balance system in the end! The blood reference from your previous post could be from many things.. A hemmie, open ulcers (which will heal over time) but the pus is DEFINITELY infection and that needs to be resolved.. I certianly hope the accutane is being stopped also. As long as there is no anaphalytic reaction occurring with the Flagyl, it needs to be used. Definitely get liver enzyme values checked before and after, so you can see for yourself what the products are doing.. Dr.'S are paid to understand 'baselines' which need to be supported with lab work values.. How can you improve if you don't where you are starting from! And.. That should be communicated to ALL naturopaths too who are prescribing on 'assumptions'!! Too muchj guess work in that field, and too many stories of miracle treatments also!

Sorry for the novel.. But I hope other people read the posts and help them question their treatment protocols. We MUST be our own advocates and we must become educated where we can question medical professionals. Too many times are we lumped into the 'group' instead of being treated as an 'individual'..