PecanBread.com - Treating Autism with the Specific Carbohydrate Diet

Reread the book and you'll see Elaine has a chapter devoted to what's "legal" to eat and what's not. None of the foods listed under headings such as NOT ALLOWED means you should avoid them under all circumstances.

BUT, and this is an important "but" ... if you read the book carefully, you'll learn that what is OK for people who have been on the diet for 1 year is not OK for folks who have been on it for 6mos.. And newbies should not think it is OK for them to jump quickly into eating foods that are OK for people who have been on the SCD diet for 3mo.

We all have to start out with the diet for beginners ... and usually we find it helpful to return to this very simple list of foods when we're having a flare. After the first few days, personal experience should be the guide as to what can and can't be eaten at this stage, i.e., what makes for more, rather than fewer symptoms. Some people are allergic to foods that others can tolerate well. Some people are sicker than others when they start the diet.

Sometimes when people on strong medications such as Prednisone begin to taper off, they find they have to take it easy on some foods that had once been OK.

The SCD diet isn't an easy one to follow. It requires patience and careful observation.

But nearly everyone on it seems to agree: The SCD diet is WELL WORTH THE TIME AND EFFORT it takes to follow it

INITIAL BAD REACTIONS TO THE DIET

These reactions may include a worsening of behavior,GI symptoms,and moods.Some children experience an increase in the size of their belly.There might also be an increase of "stimming", hyperactivity or aggression.This is an indication that the diet is beginning to work and there is a "die off" reaction.

FAQ about initial reactions to the diet.

Q:If my child does not get bad initial reactions to the diet ,will he still get results with this diet?

A:Many children show no initial reaction and also get great results.Some children show immediate GOOD results, every child is different.

Q:My child is GFCFSF and sugar free;will my child also get bad initial reactions to the diet?

A:Yes,it is possible because there is plenty of food for the gut bugs in rice and potatoes.

Q:What can I do to make my child feel better?

A:1)Give lots of love. On Kevin's bad days, I did keep reminding myself that I was now filling his little body with nothing but highly nutritious foods. I knew that the diet could not possibly hurt him, like other supplements and things we had tried before. I like the thought of something "not hurting" even if it doesn't "help" right away. There was no guilt in giving him good things. Another thought I had, is that I made a concerted effort to shower Kevin with love and attention and nothing but positive feedback. Our whole family went overboard with positive interaction with Kevin even when we wanted to give him away :) I spent weeks just telling him how special and great he is, how happy I am that I had a little boy just like him, how I would not trade him for any other on our block or the whole world, etc., etc. Believe me, there were days, when I meant exactly the opposite, but he seems to thrive and bloom with good food and good love.Millie

2)Activated Charcoal for a brief time.Do not take it during meal times.

3)Some have found that epsom salts baths can also relieve some sypmtoms of die-off. Here is a saved message regarding this:
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.

Here is an explanation:

www.enzymestuff.com/epsomsalts.htm

Karen.

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Below are reports from SCD list members about the initial reactions to the diet

From Patricia:

The initial reaction to the diet can be frightening - a sickly, cranky, tired child.

From the LI list

There seem to be a lot of people concerned about some of the symptoms of withdrawl on beginning this diet. IE; weightloss, headaches, more "d" or "c", fatigue, dizziness, and so on. I have been on SCD since March 02 and seen plenty of testimonies that after a few weeks (sometimes sooner) that these symptoms disappear.

Personally, the first 3 weeks were the most difficult for me. YES, I felt AWFUL fatigue. If there was any way I could have hired a maid and put my feet up and slept during this time I would have! I also felt a little mad at times...that gut - brain connection. And headaches! my gosh! But I had to grunt it out, triple time in the kitchen, homeschooling, nursing a toddler, and worrying about my daughter's gut troubles, let alone my own. Doesn't really seem so bad when I list it here, but subjectively it was the worst time I have ever gone through! I stuck to it, with several people encouraging me to be patient (after all we didn't get this way over night). AND a big thanks to all the people here that encouraged me!

So PLEEEEASE be patient and DOOOO stick to it. If you are able to take some time off from work to rest during this initial start up phase then do and don't feel guilty.

Also, don't think you can ease into the diet. It won't work. It really won't. Get through the first few miserable weeks and get on with feeling better. You will feel better eventually!

And don't worry about weight. It WILL stablize because your body will be able to actually USE the food you are eating.

I will keep you all in prayer.

Ann IBS, SCD Mar 02

Hang in there.... you are still in the very early stages. Recovery doesn't come overnight. The crabbiness and whining is to be expected as the bad guys are dying off. His system is still in the process of balancing and stabilizing, so don't worry yet that there is something wrong with his metabolism. After a long time of not being able to properly absorb nutrients, he's probably just making up for lost time. You'll get through this. You're doing great.

Patti, mom to Katera, age 6, SCD 3.5 months> From Catherine

When starting out on the SCDiet it's a good idea to go slow, to see if any foods are a problem, which could lead to "negative reactions." But I do feel that there's die-off on the SCDiet. When I started my two boys on the SCDiet last summer I went on it too, to keep them company. They were fairly cranky around days 7-10 which I attributed to die-off, but interestingly I had the worst die-off reaction! I spent day 8 in misery with muscle aches and nausea, and I consider myself to be a healthy person with no apparent intestinal problems! That experience is actually what convinced me that the SCDiet was working, and gave me the impetus to keep us all legal. And really, for my children, that was quite gentle die-off compared to what some of the anti-fungals have done. BTW, the symptoms of die-off can be ameliorated with activated charcoal. My experience is that if it's die-off then behavior stops about 1-2 hours after giving the charcoal.

Is there a bad initial reaction upon starting the diet?

(from Elaine)

Getting back to the first week or so on SCD: it often happens that things look a bit worse and what frightens many Moms and Dads is that the color of the stool can become bizarre shades of green and yellow. This color change is a good sign: bacterial metabolism is CHANGING. The change is affecting the bile salts and, therefore, the color change. (Elaine)

From Jo

Children just starting out on the SCD may have an unusual appetite. The yeast in their bodies is no longer being fed with carbohydrates and sugars so they'll be craving high carbohydrates foods initially. (Jo)

From: [email protected] Date: Mon Jan 13, 2003 11:57 am Subject: Re: [ElainesChildren] are you sure there's no 3 month flare?

I am new to this list, so I was unaware that ASD kids did not have a flare up. I have an exception though. I started my son, who was seven at the time, on the SCD on Nov. 1. He immediately started eating the new foods and loving everything. I could not fill him up, and am still having a problem getting him full! However, we were concerned that perhaps he was getting sick when we started seeing regressive behavior less than a week after starting the diet. For 2 months it was horrible. He lost all of his spontaneous requests, became completely prompt dependent for dressing, eating, in his aba programs, etc. Very weak sounding verbals. He would cry whenever his therapists, who he loves, would come to the house. Worst of all, he became severly impacted. The doctors actually thought we might have to resort to manual disimpaction. He was only going by means of an enema. However, I am thrilled to report that 2 months later we have him back and better than ever. He is so much more connected than he ever was before. We still have a long way to go with him, but I can only believe that this was due to the diet.

Julie A

Are SCDers Fanatics?

When I first joined SCD,I thought it was a great diet,but a little fanatical.Then I read "Fast Food Nation".The book explains how most manufactured food loses its flavor and needs to be changed artificially to be tasty.I really recommend that you take it out of the library and read the chapters about food manufacturing.

Most people who start SCD feel they do not need to go all the way.They do the diet 99% and feel a lot better.Soon they start to trust its experts and one day they try to be 100% compliant.They then experience the Magic of SCD.There is such a difference between 99% and 100% compliance.(Unfortunately a few people with extreme conditions do not get any results unless they are 100% compliant.)

I did not notice that I had turned into a fanatic,but my older son did.

One day my son went to the Super market to get Tropicana orange juice. He found a brand of OJ that had the brand name Florida Natural,it said it had no sugar and best of all it was on sale so of course my son bought it.Even the brand name implied it was natural.I disagreed and my son declared that I was a fanatic. Luckily my son has hyper taste and after tasting the OJ he declared it had added sugar.He has since stopped calling me a fanatic.

Manufacturers need to add extra sugar in case they get a bitter crop.

JEN

Jen young recovered a child with extreme GI issues and Autism.She had a lot of difficulties at first but she did not give up.She constantly asked for help.

JEN Just take it slow. We did the basic diet for a longgggg time. We are still only adding new veggies and meat slooowwwllly. I even use alternative meats while his leaky gut damages (ostrich, guinea fowl). I'm not sure why it helps him, but he had trouble with chicken and beef and I knew these meats were easy to digest. We also do Talipia as it is pure and farm-raised. I am a little paranoid, but I've been to h**l and back and I guess that it is a well earned paranoia! :)

FROM COLLEEN Food allergies are difficult to identify with my son because he reacts to so many different foods and hidden ingredients.This is true for anyone with compromised digestion.

FROM JEN Observation of behavior alone is not easy. It's hard to tell with physical symptoms because he always has some type of GI symptom. Then YOU'VE NOT ONLY COME TO THE RIGHT PLACE, BUT THE ONLY PLACE! Let me tell you Karin, my son had trouble with every carb on the market. Rice, potato,buckwheat, quinoa--I thought I was insane until I documented his behavior,stools, etc. and analyzed the results! He also reacted to maltodextrin,sugars in general....you name it. I was determined to ignore autistic specialists and find a scientific explanation for his trouble. This diet explains it to a T. Our kids have bowel disorders and leaky guts, first and foremost and autism second, I believe. Elaine is the only one I trust in healing the gut.

FROM COLLEEN I can also do more food allergy (transdermal skin pricks)testing on him but was just curious if anyone had into this allergy type of problem.

JEN I agree with Colleen here. One skin test said Colin was allergic to everything. The next said he wasn't--but to the entire environment. The CAP RAST said, no environment but just egg and casein. SIGH. My son has yeast and a leaky gut and these allergists don't know beans about that...

FROM JEN Also, we know he's very allergic to peaches and I think that almonds are in the same family as peaches (plum family). My son was "allergic" to most fruits too. THIS IS IMPOSSIBLE I BELIEVE! My son tolerates fruits now, but we are holding off as his gut is so damaged and his yeast is so severe. He is just not ready, but everyone is different. Some on this list eat fruit right away, some wait. You have to listen to your son's gut and not a test.

FROM COLLEEN If I do avoid almonds, what other types of flours can he have?

JEN If you are talking about grain bread - absolutely, positively not.Elaine likes to say that you can't serve two masters. This is a diet that only works when followed 100%. Little "cheats" will feed the bad bacteria living in your son's gut, and continue the cycle. Rotation diets can be helpful when trying to pinpoint food reactions, but the SCD is much more comprehensive than that. Please read the book again, and again if necessary.Colin still can't tolerate the almond flour, or the bean flour (worse!) or any nut flour period. That doesn't mean he is allergic, just not healed enough yet to digest breads. I know it sounds like tough love, but I decided I'd rather give my son meats and veggies now and be militant for a while so he can re-gain strength and then get to the "fun" stuff.He is now healthy, gaining height and weight, and coming back to us!! Last year he was echolalic only (repeated everything), and did self-stim, the whole nine-yards. Since this diet, minus the baked goods, dairy and most fruit, he has no autistic behaviors left. He is almost caught up in speech and he is now testing a year in advance in some areas--he doesn't even fit the ADD diagnosis. We have some setbacks (we had an "applesause" setback, a probiotic dilemna, and trouble with the vitamin), but we always go back to our set foods and re-coup. His stools are healthy and 1-2 per day. He does pretend play, is social, and is so hungry I can barely keep up with him.

FROM COLLEEN It explains very well in lay terms how and why the diet works, and why it must be followed to the letter in order to be effective.Would bean and potato type flours cause an increase in constipation and gas?

JEN POTATO IS THE ENEMY. I know I am Irish, and I used to live on potatoes,soy,and sugar (my son took after me)---but please*** don't give any potatoes!!My son had horrible reactions to that "autistic" potato milk junk and I kept arguing with the man that it made my son sick! No wonder, it is impossible for my son to break down and also has carageenan in it to boot.Re=Read the book BTVC again and again and again...also, the bean flour gave my son gas and pain and he has been on the diet since APRIL! It sounds like tough love I know. But close your eyes and imagine how you felt when you had stool trouble/diar. Then imagine being a child and living with it every day!They didn't get sick over night, don't expect them to heal over night either.This is my inspiration.

FROM JEN Many of us took months to see real changes, and because you have only just started and don't really understand how it works yet, you've probably been making mistakes without knowing it. It takes a while to get the hang of it.I know it's hard to see your child struggling, but you really must be patient, and you must be very diligent about following the diet *completely*.

AMEN! I made mistakes. I gave Colin a probiotic with inulin in it (a no no),I gave him seeds the first month (A NO NO!!), and raw veggies were so bad I thought he had an ulcer...I gave him seeds with sugar on it my mistake (he had to be restrained) and I also once did cashew flour which is so harsh.Oh, and I noticed the biggest difference when I cut out the baked goods and sugar (we are now even switching to water only with occasionally freshly squeezed juice). This is not breaking the rules. Elaine told us what we can eat but didn't say we had to eat ALL foods the first few months. Each person is different. It is what NOT to eat that is the most critical. Plus, once we caught on to the diet (end of April), we noticed Colin'ssensitivites to environmental molds, scents, smoke, perfume, you name it! We also started an anti-fungal and are still searching for the perfect one.Also, do the probiotics at one point.[pure acidophilus from http://customprobiotics.com/]

If you can't do the yoghurt you must get your good bacteria somewhere!!! My son is a miracle and we did this ALL through food and not through supplements. Only now are we adding conservative vitamins like cal/magn., C, etc. and the ones Elaine recommends on page 48 for chilren.

My son was previously diagnoised first with PDD and then Autism in Jan. He is now almost 100% fine, and is going to go to a regular class next year. He has no autistic behavior left! Yes, the vaccines are horrid aren't they? We avoid them. You know I know it is so scary, and you always want to know how this happened and why. My son's may have been from his GI difficulities with the ROTA virus, plus so many antibiotics, plus mecury issues. Regardless, this diet is helping him. My advice to you is for this child is: stay 100% on this diet. Also, add foods slowly. Introduce one food at a time carefully so you truely have a baseline on what foods his gut is ready for. Also, read Elaine's book until you understand so well you can quote it in your sleep! This understanding will steel your will against others who may try to influence this period of healing. My son is still not ready for the almond flour, but yours may be. It all depends on the stage of healing he is in. I do recommend you do the basic diet and the yoghurt if possible. We do the goat's milk yoghurt. Unless someone has a true breathing problem or allergic reaction to the cow's milk products (for yoghurt and cheese), I would go for it. If you do goat's or sheep's cheese instead, make sure it is aged 6 months or more, to stay legal and low lactose. My son does great on Goat's gouda. The GFCF folk had me terrified of dairy. So insane.

I would try the honey cautiously. My son had oral yeast at first so we didn't do much fruit or honey for most of the first 4 months. We also tried anti-fungals. I think if we had done the yoghurt sooner, we would not have needed to. He can now tolerate the honey and yoghurt fine. Also, please be cautious of raw veggies and fruits at first. I used to feel sorry for Colin and give in to him since he was so little and deprived of so many sweets! But it just delayed his healing. The best advice I can give any one with a child with GI troubles and developmental delays--is stand up for your child's gut. So many will criticize you and call this diet "restricted." It is merely their way of thinking that is narrow and restricted. Healing is serious business, and don't let anyone get in your way of it. I certainly don't.

Dairy Free SCD

Most children with ASD can do well with dairy free SCD.When our first list began most of us, parents of ASD children, were implementing Dairy Free SCD.We were thrilled with the results.We changed to "Goat SCD" because we got even faster results.However,there is a small subgroup of ASD children who require the yogurt to improve.

A mother just emailed me and told me that many of the new parents are confused about the dairy. Here is a solution:do dairy free SCD until you are more comfortable with SCD. Here is a copy of an old post from our lists:
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<< I know that there is absolutely no way to add any casein back into my sons' diets. Is this going to negatively impact the results we might see by using the SCD? >>

Hi Jody,

Keep him on the diet!! We have been on SCD without casein for five months with wonderful results, GI, behaviorally, socially, and language boost. We are thinking of reintroducing casein because I am wondering if it was ever part of the problem. I would like to get him on some yogurt because I think it would be very beneficial to his gut issues.

Alison B.
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You can read more about SCD dairy and ASD:

http://www.pecanbread.com/goatyogurt_autism.shtml

A SCD cookbook with mostly dairy free recipes:

There are more than 150 recipes in the book.The dairy recipes are in a separate section; only about 12 recipes contain dairy. According to the rules of SCD you are advised to wait about 3 months before eating bean products. A few of the recipes in this book call for bean flour ;so you MUST substitute another nut flour for the bean flour.

My kids love the recipes that I made from this book. My daughter stopped complaining about the diet after I got inspired by it. The name of the book is: SCD WITH TASTE AND TRADITION Tel/Fax :845 356 3504

There are also dairy free recipes on:

http://www.scdrecipe.com

http://www.pecanbread.com/recipes.shtml

General Tips for Dairy Free SCD Baking:

http://www.pecanbread.com/cookingtips.shtml#diaryfree

A mother who used Dairy Free SCD wrote about the miraculous recovery of her daughter from autism:

http://hometown.aol.com/hopeforautism33/myhomepage/index.html

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