Difficulties starting the diet – Mom ?

Mom Becky’s son is having difficulties starting the SCD Diet.  Please see below what she wrote and respond with your comments and advice.  Thanks!

Mom Becky wrote:

We just started the diet three days ago.   My son has UC and 2 weeks ago reached a peak in a flare that started brewing a couple of months ago.  He is on prednisone now as well as Lialda and Canasa.  Anyway, 2 weeks ago we went on a strict diet of yogurt, rice, chicken, applesauce and bananas.  He was seeming to do well in coming out of the flare.  Then three days ago we started the SCD.  The first day on it, he needed to use the bathroom more often, and a little bit of blood starting showing up again.  By the end of the second day, and this morning he was having more frequent bowel movements and quite a bit more blood.     He is almost 6 foot tall, and has lost so much weight that he is down to 125 pounds.  I am afraid to keep moving forward on the diet for fear he will continue to get worse and loose even more weight.   Has anyone else had this experience or anything similar?
My thoughts:

I have reposted numerous past posts on this topic and hope that these will help!  If you are just starting the diet please go to the “Getting Started” section and “Mom Questions” and read past posts.  I believe these will help you alot.

From being on the SCD Diet and learning from various resources, my first thoughts are about the rice diet he was on.  One of the worst things I have learned are grains.  I learned this after investigating about rice around the one year mark for my son.  He had been on the SCD Diet for one year and we decided to try a few things and see if he could add them back.  Rice was the first thing we tried.  He had sores on his behind and hurt so bad he missed school for a week because he could not sit down.  He laid around all week on his stomach because his behind hurt so bad.  Another quick advice ALOT of children have had is with bananas at the start of the diet.  Please make sure they are VERY ripe!  And some cannot tolerate them at all at the beginning of the diet.

Please be sure to read over the three reposts I did today.  I know it sounds scary with the “dying off” stage and everyone’s “dying off” stage length of time will be different.  My son’s lasted about 3 months. But he was not that sick.  It did get very scary with all of the blood and him having gotten worse at first, but it was worth it!  My son has been on the diet 3 years next month and he is symptom free AND medication free as long as he is strict on the diet!!!

You mentioned your concern about his weight.  I will go back and look for a post on this topic as well from a question from a mom and repost it.  I spoke with Lucy from Lucy’s Kitchen about this topic.  Lucy actually knew Elaine who wrote the “Breaking The Viscious Cycle” book.  Lucy told me to tell moms NOT to worry so much about your child’s weight!  You should be concentrating on their health and how they feel.  The weight will come.  My son was skinny and had lost some weight, but was nothing compared to many I have talked to.  A few moms I know of here from the blog will confess to this advice.  Concentrate on sticking to the diet “strictly” and BE PATIENT.  Your child, on his own time, will start feeling better and getting better.  You can start looking at posts and websites then looking how to add calories and protein to their diet. and adding weight then.  Your goal here is to get them healthier and feeling better.  My son has gained 15 pounds this year!

Please let me know if you have any further questions!  I hope other moms respond and leave their advice.  And you can always email me your number to scddiet4kids@gmail.com if you would like to talk.  GOOD LUCK!  It DOES get easier!!!

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Dying Off Stage – Repost from 9/2011

The “dying off stage” can be very hard!  Please do not get discouraged!

I would describe this stage as the body getting rid of all of the bad bacteria and starting to heal.  This is a trying time.  You are spending all of your time and efforts making sure your child is getting all of the legal foods, which is not easy, and it appears that they are not getting much better, but worse.  Please prepare for this and know what to expect.  Be strong, and do not give up!  No one knows when or how long the “dying off stage” will last.  With each child it will be different.  One child it was only two weeks before they were symptom free, for my son it was two months.  But hopefully, you will have seen some days of improvement to give you the strength and hope to push through this trying time and continue with the diet!

I have copied and pasted information regarding the “dying off stage” on the SCD Diet that I have found online.  I hope that some of this will help you through understanding this rough time.  Please let me know if you find any other information that would be beneficial to add to the website as well.  Thank you.

How can I tell tell the difference between die-off symptoms and an intolerance to a new food?

One indicator is the length of time the symptoms persist. Most die-off symptoms last less than three weeks. Some report that if a negative behavior is due to die-off, the behavior stops or improves about one to two hours after giving activated charcoal.

If you think a particular food is possibly bothering your child, you can certainly remove it for a short while and see if things change. If the symptoms abate, you may have found the culprit. Re-introducing the food a little later is a way to verify this.

If your instincts tell you it’s die-off… then ramp up epsom salts baths and/or the charcoal supplements and see if that helps.

During the detoxification period your child’s body has to process the waste products of dying gut pathogens. Children will need plenty of fluids, rest, patience and support… just as when sick with the flu.

Parents frequently report that they are seeing some positive changes (in attention, behavior, etc.) at the same time, usually a clear sign that the other negative symptoms are due to die-off. If the die-off symptoms last longer than a month or are severe, please seek help from a SCD counselor.

Die-off symptoms and food sensitivities are two separate things… but it can be difficult to tell one from the other.

Try not to worry; you are making progress. Soon the symptoms of die-off will lessen or stop, and the picture will be a lot clearer.

You may be able to reintroduce some of the foods that you had pulled when mistakenly thinking they were not being tolerated .

Why do the die off reactions occur?
The same toxins the gut pathogens have been giving off all along, which drive the kids into their world of autism… are all being released now, all at ONCE, as these bad guys bite the dust. Hopefully, you can think of it that way… it’s not your child…. it’s like your child’s possessed by these bad guys who are DESPERATE to survive and are driving your child crazy.

They WANT TO SURVIVE…. so they are sending your child messages to GO GET FOOD. Meaning, they want their Nutrigrain bars and their sugary cookies and all the other stuff that they’ve been thriving on all this time. They KNOW they will DIE if they don’t get it…. so they are willing to go to desperate measures to influence their “host”…. and break down your will to defeat them. This is a life or death struggle for them and they mean to win. You must make up your mind that your plan is to erradicate them from your child’s body once and for all….. and determine you won’t give in to them!

How to decrease the severity of temporary initial symptoms.

Gradually decrease the amount of starches and sugar at least a week before starting

Do not use antifungals at the same time as the beginning of SCD

Take a chelation break if you are doing chelation.

List of possible die off temporary symptoms

Most children will not have these symptoms.

        Flu Like Symptoms 
  • nausea and on rare occasions vomit.
  • dizziness
  • achy joints and back
  • change in bowels (diarrhea or constipation)
  • strange skin rashes
  • runny nose and funny cough
  • headaches
  • behavior changes/irritability/tantrums/short tempered
  • sleep disturbances
Things you can do to make it more tolerable:
  • Epsom Salt soaks in a warm tub
  • Activated Charcoal Capsules (http://www.morethanalive.com/Activated-Charcoal-Powder) for a brief time. Do not take it during meal times.
  • Slowing down the introduction of enzymes (some call this the “low and slow” method).
  • Going slower in the introduction of the SCD probiotics and yogurt. You should wait before introducing these if you have a strong die off symptoms (www.pecanbread.comhas ideas on introducing this yogurt)
  • Following the directions in Chapter 9 and 10 in the introductions of foods.  .

Directions for doing the Epsom Salt baths:

Start with 1 cup of salts in waist deep water and soak for at least 20 minutes. If this is tolerated go up to 2 cups of salts per bath. If it is not well tolerated (hyperness, irritability, whining), cut the dose to 1/2 a cup. or less until you get to a point it is tolerated. It indicates the person is detoxing too fast.