My current thoughts on SCD

[Charleigh]

I feel like I left you all hanging

I think SCD is great. My varied approach (looked more like Whole 30 by the time I was done with it, lol) worked wonders for E's symptoms. It is a very, very difficult diet to follow, particularly for a kid. Also, particularly for us since we had to be even more restrictive than SCD (no beef, no dairy at all, no peanuts, etc). E was doing great until we introduced potatoes. It was a small addition and I have no idea if this addition is what caused E to flare? I can't say that E flared while on SCD since we did add potatoes. E is too new to this to have a "track record". We are feeling our way along as we go. E did have a short round of prednisone to get him over the flare, but we have not opted for meds beyond that. We are still trying to use diet to help keep E under control. I wish I could say that Paleo/SCD/Whole 30/GAPS is a magic bullet. I really don't know? I have seen enough positive in it that we will continue to explore this route. What that will look like, I don't know?

 

[rollinstone]

I think you're doing the right thing sticking to the diet, but just watch closely as I'm sure you will, I was reluctant to start maintenance meds after my 1st rd of pred, I thought id be fine on 100% SCD but it lead to me being on pred for 8 months so plz be wary

 

[Beach]

Fantastic to read that E is doing better once again! Hope that continues.

All speculation but I've read recently that tobacco is known to have a negative effect upon CD. Potatoes and tobacco are related in that they come from the same genus family - solanaceae. Hard to say of course.

 

[maile]

My daughter was diagnosed with Crohns at 17 yrs. old. What really worked was an elemental diet. The SCD diet supposedly tries to emulate an elemental diet by having what you take in, absorbed in the small intestine....thus starving the bacteria in the large intestine. But it also gives the intestines time to heal. She also took Flagyl at this time and 6MP. Before the elemental diet her stool calprotectin was over 700, now it's normal. She drank 5 glasses of 15 oz. Elecare a day. I blended w/ice to be more palatable. I covered the glass cup with saran wrap so she would not smell it, and stuck a straw in it. It has to be a complete liquid diet for at least 3 weeks....no cheating. I blended vanilla with plain flavor because the vanilla alone is very sweet. I really believe it made a world of difference. I have to tell you though, it really depressed her having to do this...but now she could not be happier. I would drop off her drinks to her during lunch at school and she would drink it in the car. Her stools are now formed, SED and CRP normal, small capsule and MRE normal. Also, because she was on an elemental diet, she did not have to take steroids.....that's what they say about an all liquid diet....it allows the mucosa to heal without using steroids. It's an alternative to using steroids. I read a book by Prof. Hunter. But my daughter's GI also recommended the elemental diet as soon as she was diagnosed with Crohns. She said in many countries it's used as the first line of therapy. I told my daughter that if her Crohns ever comes back, go straight to an all liquid amino based diet...and I'm not talking about Ensure. I think Ensure uses simple sugar. Every thing has to be broken down for immediate absorption in the gut.

 

[Amy2]

It really does seem to be a "magic bullet" for my daughter. After 8 years on the diet, she is not strict about everything...she LOVES potatoes and bread and eats them a few times a week, but if she over does it, she becomes symtomatic. On the diet, she has been symptom and drug-free. It's really as if she does not even have Crohn's. She has tuns of energy and feels perfect.

My son has been 100% strict, no cheats and he still has mild symptoms. He has not gained weight in some time, so we have asked the dr to write a prescription for Peptamen (even though it is not SCD legal). Our insurance will cover it if it's 51% + of his diet so he's going to add 4 or 5 drinks per day.

 

[Beach]

interesting, that's something Dr. Hunter has observed - if one is able to control their CD with diet, after 5 to 10 years often times the disease "burns out". Patients find they are able to eat whatever they want, or nearly any food can be consumed with few issue. He isn't sure why this is, but has a few speculations in his book.

Good luck with the paptamen.

I've seen a few of Dr. Hunter's followers in the UK using elemental 028 as a liquid diet.

 

[Charleigh]

I would love for E to try elemental. My doctor learned about it after he spoke with a research doctor at Chapel Hill about LDN (because we were hoping to try LDN). The research doctor is very excited about elemental/enteral. The problem is my insurance will not cover it because I can technically get it from the pharmacy without a scrip (or so they say). It would cost like $1500+ a month out of pocket and we just don't have that

 

[Charleigh]

I think you're doing the right thing sticking to the diet, but just watch closely as I'm sure you will, I was reluctant to start maintenance meds after my 1st rd of pred, I thought id be fine on 100% SCD but it lead to me being on pred for 8 months so plz be wary

I am very wary. We are scheduled to see a research doctor at Chapel Hill to talk about maintenance options. E's doctor is only prescribing Imuran or 6-MP and we just aren't ready for that :/

 

[Beach]

I would love for E to try elemental. My doctor learned about it after he spoke with a research doctor at Chapel Hill about LDN (because we were hoping to try LDN). The research doctor is very excited about elemental/enteral. The problem is my insurance will not cover it because I can technically get it from the pharmacy without a scrip (or so they say). It would cost like $1500+ a month out of pocket and we just don't have that

That's a shame that the elemental drinks cost so much. Did you ask the doctor or researcher if there is/are equivalents at an affordable price?

I used to work in the food industry. We did some work that crossed over into the pharmaceutical field. For example one product I recall was a gelatin drink for arthritis. The firm wanted to sell the gelatin product through hospitals and pharmacies. If that happened the drink could be sold for around 5 times the price of what was sold off shelves. A study ended up being a bust (to many people stopped taking the product during the study time period), and so they just stuck with selling their product to stores.

You can see similar with prescription fish oil, vitamin D, niacin. One write up about prescription pharmacy fish oil. Prescription fish oil can cost up to $900 a month, while similar store bought is $30.

"No more Lovaza"

http://blog.trackyourplaque.com/2010/07/no-more-lovaza.html

I was looking to find an ingredient list for the elemental drinks, but only could find that they are made largely from whey. From what I remember whey is considered a waste product. Recall even seeing a mention on this in the news recently.

"Toxic waste from Greek yogurt poses danger to waterways"

http://www.foxnews.com/health/2013/05/29/toxic-waste-from-greek-yogurt-poses-danger-to-waterways/

Anyway, good luck, hope you find something that is helpful and affordable.

 

[Amy2]

I would love for E to try elemental. My doctor learned about it after he spoke with a research doctor at Chapel Hill about LDN (because we were hoping to try LDN). The research doctor is very excited about elemental/enteral. The problem is my insurance will not cover it because I can technically get it from the pharmacy without a scrip (or so they say). It would cost like $1500+ a month out of pocket and we just don't have that

Our insurance said they wouldn't cover it at all, at first, but we kept fighting them (thanks to advice we got here!) and now they are going to cover it 100%.
(United Healthcare). I think we were told no 4 times, then yes, then we haven't decided yet, then yes again, then we got a check. Crazy!!!

 

[maile]

Charleigh, I bought mine on Amazon. Good luck.

 

[maile]

Charleigh, I have 6 cases of Elecare that I was going to donate to my daughter's GI to give to someone who needs it. You can have them if you want, no charge. You would just need to pay for the shipping. The boxes weigh 18 lb. total. It expires though in October 2013. I live in California. Tomorrow is her appointment with her GI and I was going to give it to her then. If you want them, you need to tell me today.

 

[hugh]

I feel like I left you all hanging
I think SCD is great. My varied approach (looked more like Whole 30 by the time I was done with it, lol) worked wonders for E's symptoms. It is a very, very difficult diet to follow, particularly for a kid. Also, particularly for us since we had to be even more restrictive than SCD (no beef, no dairy at all, no peanuts, etc). E was doing great until we introduced potatoes.

Why people with Crohn's disease should eliminate potatoes from their diet
A study published in Digestive Diseases and Sciences confirms the results of a previous study published in the journal Inflammatory Bowel Disorders: the consumption of potato glycoalkaloids adversely affects intestinal permeability.
http://www.helium.com/items/1802193-crohns-disease-and-potatoes-in-diet

Try the white rice....
good luck

 

[helena101]

I know elemental is very expensive. But it is very unlikely E would have to be on it exclusively for more than a month. So its 1,500$ total, minus the cost of food. Its not an ongoing expense. Still, I hope you are successful without needing to resort to EN. So glad to hear E is doing better.

 

[Dragonfly11]

Hello, I am new to this forum, and the "world" of IBS....I had been experiencing diarrhea and abdominal swelling on and off for many months, so I decided to try SCD. The first week, I felt a little better, and the diarrhea started tapering off. BUT, starting on day 10, my stomach BALLOONED painfully with trapped gas, I became exhausted, developed "brain fog" and a nagging pressure in my lower abdomen. I feel AWFUL, worse than ever before! BUT, my diarrhea has stopped, and I've been having formed, brown bowel movements twice a day. I'm on day 15. I haven't done the homemade yogurt yet. Could all this still be die off? I DO feel hungover! As is I'm detoxing. I even have that white, yucky coating on my tongue. What do you think??

 

[hugh]

Hi Dragonfly,
It could be just die-off, but only you can make the decision about whether or not you are doing ok or need to change things.
There may be other things happening in your gut too.

Remember that on SCD you have to replace the carbs with Fats (good fats -animal, coconut, olive oil, avocado) to get the energy that you need.

there may still be things in your diet that do not agree with you so lean towards paleo (real food, not processed .)

the yougurt does not agree with everyone, but fermented foods can be beneficial.
Some report more tolerance of Kefir than yougurt, or use sheep/goat milk instead of cow.
Ther are other probiotics you can make - water kefir, combutcha, pickles and sourkraut

 

[Dragonfly11]

Hello Hugh,
thanks for your reply. I started taking a kefir in coconut water (Inner Eco) yesterday. My abdomen seems a little less swollen. I'm going to continue with it.
I have been eating lots of healthy fats and zero processed foods (I hardly ate any to begin with)
thanks again for your response. wish me luck! starting to get demoralized.