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Autism Diet Help

The Specific Carbohydrate Diet (SCD) has helped my autistic son for over three years now. He is six and a half years old and is now free of his gastrointestinal problems.. and also many behavioral symptoms of autism which had bothered him –and those around him–prior to the diet.

Diet and its effect on autistic children has been in the news lately. But when I put my little boy on this diet just after his third birthday, diets were not very popular for these kids. And certainly not one as challenging as the SCD. (You can learn all about the Specific Carbohydrate Diet in Elaine Gottschall’s book, “Breaking the Vicious Cycle”.)  The woman is my hero.

Basically, the diet is free of not only dairy and gluten, but it’s free of all grains. (In a gluten free diet, you may eat grains like potato, rice and corn, but not on the SCD). It is free of all sugars and sweeteners except for honey. There can be no artificial colors, dyes, flavors, preservatives, additives. Most fruits and vegetables are allowed as are most meats. Nuts and eggs are allowed if there is no allergy. Some people do a limited dairy version of this diet, though many autistic children do not tolerate that version–at least initially.  These are just some highlights of the diet. Please see the “BTVC” book for complete details and recipes.

ANYONE CONSIDERING ANY DIET FOR THEIR CHILD SHOULD SPEAK TO THEIR CHILD’S DOCTOR BEFORE STARTING AND GET THE DOCTOR’S APPROVAL AND SUPERVISION. This blog is not meant to give medical advice and the moderator is not responsible for any injuries or damages claimed by anyone reading this blog. Your posting on this blog constitutes your understanding and acceptance of this disclaimer.

(Don’t you just hate that lawyer language?) But it is necessary these days…

Seriously, you need a doctor on board for this journey. Look for a DAN (Defeat Autism Now) doctor or a chiropractor who specializes in treating children with autism, as most pediatricians will not be supportive or knowledgeable about dietary interventions. Properly supervised vitamin supplementation is necessary.

At first, it seemed the only thing on the “acceptable food” list was freakin’ cardboard. But I took a leap of faith and committed to a 4 week trial.  Change was noticeable within only days.  And I really saw a dramatic change within the first 30 days. That is where the motivation to continue came from. That, and the realization that foods that may be digestible by other children are like poison to mine because his body converts them into dangerous and harmful compounds. 

As a woman who has “fat” clothes and “thin” clothes that go back as far as the 80’s, I’ll be honest with you…diets suck. And the only thing worse than being on one yourself, is putting your child on one. Especially one that is so restrictive, so expensive, so time-consuming…and makes your child stand out from his peers in yet another way. 

No, it’s not easy. But, God, is it rewarding.

So, in an effort to encourage dialogue and support for parents of children on the Specific Carbohydrate Diet, I offer this “Autism Diet Help” section of StimTalk.

If you have any questions or comments about healing your child through diet, please post them in the comments right here on this page and I’ll try to help you. So will others.  (SCD moms are hard to find. We’re a tight-knit group of generous souls, because our diet is harder to implement … due to its restrictiveness… than the other more popular GFCF diet.)

Comments»

1. mommy2kyler - November 30, 2008

Hi, I’ve just found your blog and it’s great. My son is 17 months and somewhere on the spectrum. We have a DAN! doctor and have been GFCF for almost 3 months. We’re on numerous supplements and about to implement the Methyl B-12 shots. My son does not have any words and BARELY any babble. I’m dying for him to say Momma! He had four words and lost them at about 13 months. He’s never really been the same since. Anyway, we’re going to start the SCD at the first of the year. I’m waiting because we’ll be travelling for the holidays…which should be a *joy* all by itself! I’d love to know where you find recipes and what type of lunches you make for your child. I’ve ordered the book BTVC and should get it next week. But, I’m really looking for more advice, support, etc. Thank you so much and keep posting! You can find me at http://kylerthetoddler.wordpress.com/

Take care!

2. hopeauthority - December 1, 2008

Hi Kyler’s mom!

First, congratulations on being so far ahead of the game! You have an early diagnosis and have already started dietary interventions! I am very impressed and you should be very proud. Your son’s future will be brighter simply because you are taking early action.

I won’t pull any punches here. SCD is serious. It takes a major commitment on your part in terms of time spent planning and making everything your son eats. As you will see when you read the “Bible”, BTVC, the diet must be adhered to “fanatically”, in order for it to work. It takes the most dedicated person to implement this diet. You don’t give in on holidays and birthday parties. You find SCD legal substitutions instead. You view the illegal foods as poison because if your child can’t digest it, it harms him.

The earlier you start a diet like this, the better. You wil have fewer or no bad habits to break. Your son will not know what McDonalds tastes like, so his heart will not break. You will have less resistance initially, but as he ages, he will be curious about the foods of his peers in school.

It is hard at first, but it does get easier. Then it becomes second nature. Tell yourself you are going to try it for 30 days. Its easier to get through the first 30 days if you do that. If you tell yourself its forever, you may not make it through that first month at all. You will know by then whether it’s working. Having a child on the spectrum is always stressful, but try to implement this diet at a time when you can focus on it without many additional stresses or demand on your time. And if someone else is a caretaker for your child, insist on their compliance with the diet when he’s in their care.

It is so rewarding when you see the difference it makes in your child. And that is where you get your strength to go on.

There are recipes to get you started right in the book BTVC. I recommend following them initially until you are comfortable with the program. There are also many resources in that book for sources of recipes and bulk order nut flours. Read BTVC. Then read it again. My copy has fallen apart over the years. Go slowly through the parts that are scientific, as they are important, too. And ask your DAN doc to rule out any egg allergies so you know whether you need to use egg substitutes.

Since my son’s been on SCD for over 3 years, I have gotten comfortable adapting some of my own family recipes so that they comply with SCD. Maybe I’ll put out a cookbook of my own next year!

But I am getting ahead of you. Keep things simple for the start of the program. Everything you need is in BTVC for now…except the support and some reassurance, which you can get here. One of the earliest foods I gave my son on SCD was a homemade chicken soup. Its still his favorite. It has no grain (no noodles or rice), but he loves the chicken and veggies, and its so soothing.

I make chicken cutlets/nuggets using a ‘breadcrumb” of nut flour seasoned with sea salt, pepper, and parsley flakes. He likes grilled chicken or baked too. Hamburgers, no bun. Homemade bread with nut butters instead of grain. Turkey sandwiches. Fake fluff with peanut butter–his favorite lunch.

I highly recommend you keep a food journal too. And track behaviors in it too. That way you can see what foods he may be reacting negatively to…sometimes the reaction doesn’t show itself until the next day…or later.

Also, sometimes a food may be legal on SCD, but still not agree with your son. For instance, my son does not tolerate foods high in salicylates/phenols such as blueberries, strawberries, peppers, almonds, etc. Those are all legal on SCD (though not initially). It took me a long time to realize that too much of those foods made a big difference in behavior. Once eliminated…BINGO…big gains.

So I don’t want to overwhelm you and as you can see, I can talk forever about it. Read the book. Enjoy the holidays. Check in with any questions…anytime. That’s why I am here. Good luck.

3. mommy2kyler - December 2, 2008

Thank you SOOOO much for the info and advice! I will follow BTVC because I am determined to help my son. I don’t know if it is the answer but I’ll never know until I try. We did the food allergy test with his DAN! doctor and surprisingly, the only two foods to show any intolerance were soy and gluten. I’m suspicious though of a few others such as certain nuts, eggs, and corn. His cheeks turn red from something and I’m trying my hardest to figure it out!

So, your son reacts to almonds? How did you figure that out? I give Kyler almond milk about every other day. I’m trying to decide which nut is the least offensive for him.

Thanks again, I really appreciate it!

4. hopeauthority - December 2, 2008

I’m smiling because you sound like me about three years ago! I love your determination to try this to see if it’ll help your son. I hope it does.
The way I figured out the almond thing with my son was after I’d had him on SCD for quite awhile. I felt like we were in a rut and I wanted to get more inventive with his foods, but stay SCD. I’d had the phenol/salicylate worry knocking around in the back of my mind for awhile, but didn’t want to acknowledge it because it’d mean taking away so much of what my son loved.
Then one day, I really looked into the list of the high P/S foods and it hit me. Some of the top offenders were things he ate daily. When I removed them all, I saw better behaviors. I took them all away for about a year before reintroducing any…and then only sparingly. They are reserved for special occasion treats mostly…and I give them with an enzyme designed specifically to help digest p/s foods. (Note: BTVC does not require enzymes because the foods are easily digestable by most people.) Some people use them, some don’t. Others, like me, only with p/s foods.
If I had to recommend a nut, I’d recommend pecan flour or, if no reaction to p/s, then almond. Or cashew. Hate to break it to you, but the almond milk you’re buying will have to go when you start SCD…I’ll let the book explain why.
You’re smart to watch for the red cheeks…they are a major red flag for an allergy of some sort (food or environmental). So are dark eye circles.

5. Tehreem - February 6, 2010

I am a mother of 3 andhalf year old autistic son. pls guide me for his diet. He simply loves milk and yougart. What should i do???/ i am so despressed and tensed.

hopeauthority - February 10, 2010

I completely understand what you’re feeling and sympathize.

My little boy, who I refer to as “Fabio” here, has been on special diets since he first turned three. First it was 5 months of gluten-free, casein-free (GFCF), then I switched him over to the more restrictive Specific Carbohydrate Diet (SCD), which we have followed religiously ever since 8/05. But I will stress that it is not easy to do, and it is not inexpensive. However, I have learned that it is the only choice for my son.

He improved much more when we removed all grain from his diet with SCD (in GF, you can eat some grains like corn, potato and rice). Language came more freely, though still slowly.
He always had bowel issues, having never had a formed stool, and it took about a year and a half on SCD before his gut healed enough for his stools to be formed regularly…literally 10 days before his scheduled endoscopy/colonoscopy. For me, I put him on this diet primarily to heal his gut and if it helped with the autism, that’d be a bonus. Well, for him, it has done both.

I always caution people to have their child evaluated by a doctor before going on any diet, especially since nutritional and other supplements may be needed, and your child should be monitored. Most pediatricians are not that knowledgable about these diets. You should look for a practice that has DAN (Defeat Autism Now) doctor or chiropractor with knowledge of autistic kids and their diets. I also took my son to an allergist/immunologist/pediatrician before I began the diet and had him do labwork and other testing confirming that he had allergies/sensitivities to certain foods.

I believe that if a diet is right for a child, you will start to see some positive signs within a month of implementing it, provided you don’t cheat. It is not easy to make these changes, but it is far easier to do it when they are little. That way they will not remember eating any other way. The first two weeks were especially hard since my son (and many others) experienced symptoms similar to what drug addicts go through in withdrawl. If there are intestinal organisms dying off because you are depriving them off the foods they require to live, it isn’t pretty. But think of it as proof that you are on the right track. And it will pass.

I also believe that when a child “loves” one or 2 items noticeably more than other foods, and craves them to a level that seems excessive, it’s probably that item that will be the culprit. In your case, dairy/casein. In mine, it was bread. By the time I turned back from the fridge with the bologna, the slices of bread I’d had out had been snatched away and devoured!

Another sign that your child may have allergies, whether to a food, or something environmental, is what is called “allergic shiners”. They are black or purplish-red bags under the eyes. And the other sign would be rosy, red cheeks. Once I put my son on the diet, those things disappeared. But looking back on old photos, I see them. Wish I’d known…

So, putting your son on a diet is a great idea as long as you have a medical professional on board to insure that his nutritional needs are met through supplementation. I personally feel that there are no risks to these diets (other than having an allergic reaction to a permitted food like nuts or eggs) since it’s not drug therapy. It’s wholesome food, free of dyes and colors. Most of it is in such simple form so that it is easy to digest for even the most inflammed gut. Then as you heal, you advance to other foods.

While I believe the SCD is best for my son, it is the most restrictive and has fewer trained medical professionals to help you. That’s because, while its been widely used for IBS and Crohn’s and celiac for over 50 years, it’s only been linked to autism for less than 10..so it was really new to autism when we started it. If it is too overwhelming, please consider GF/CF as there may be enough benefits seen from that change in diet that…over time…you may then be motivated to move on the SCD. That’s what I did.

And come back and let me know what you’re doing! You will need support. You can do this!

6. Jennifer - December 21, 2011

This is hard, my son is autistic and been on gfcf diet for 5 years he is going to be 11 soon. We havebeen on scd for 5 days. Yesterday he had pink cheeks and he has always had dark circles under his eys. I want to cry. He is only eating about 6 foods because of his gag reflex on texture. If the pink cheeks meen an intolerance to a food, where do I start, what food to remove, I feel like I’m starving him. Help!

hopeauthority - December 30, 2011

Jennifer, I’m sorry I was away when your comment came in. I hope things are a bit better. First, a big congrats on 5 years of gfcf. Diets are so hard to stick with. SCD does not come with much public support or understanding and its easy to feel isolated. You should have the book Breaking the Vicious Cycle by Elaine Gottschall as its the bible of SCD. I highly recommend the group pecanbread on yahoo as its moderated by women with years of experience in SCD implementation and is often flooded with questions from newbies, though sometimes some of the commentors can be annoying and judgmental. DOn’t worry about your son eating only 6 foods. Many young kids eat 6 foods, but they are often eating 6 questionable or bad foods like hot dogs, pizza, chicken nuggets and mac and cheese. If you get 6 good foods in him, its ok. I highly recommend the support and supervision of a knowledgable doctor, like a DAN (defeat autism now) doc or chiro/wellness doc, naturopath or nutritionist who believes in SCD. Your son may need supplements.
An allergist may be able to help you figure out if he’s allergic to a food (sometimes the red cheeks and circles come from environmental allergies). I found that at the start of scd after gfcf, we had removed most worrisome foods with scd, but I kept a food journal anyway and learned that some of the foods legal on scd were still not ok with my son. For example bananas, blueberries, strawberries and anything high in phenols and salicylates. I was devastated, feeling that its so unfair that such a limiting diet as scd was made harder by his inability to handle these otherwise scd-legal foods. You may want to google phenols and salicylates for foods that are high and avoid them, and see if that helps. Also remember, its hard for the body sometimes to adjust initially to scd, like an addict in withdrawl. If he is going to improve on scd, you will probably know in 30 days or less, so look at it a week at a time so its not overwhelming. My son eats tons of nuts flour products (not almond…high saliclyates) and eggs, which are two food groups famous for allergies. If your son can’t do eggs, you’d need an egg-free scd. If he can’t do nuts, scd is less doable as that knocks out every baked cake-like item and leaves you with fruits, veggies and meat only.
I know its not much consolation, but you are doing a great job even trying to do scd for him. Really. So few moms are willing to make such a sacrifice. Please try to stick out the 30 days. Its always hardest in the beginning. Let me know how you’re doing and do check out pecanbread, too. Good luck!

7. thesweetpeas - April 4, 2012

It looks like you need a 2012 comment! My family has been GF since August 2011 and immediately saw improvement. I think my husband, son, and two SILs are all celiac. More recently we have also been dairy free and my husband’s stomach aches are completely gone, my son’s behavior is improved, ad my daughter’s eczema went away! But I have known there was still something missing. I am always very slow to take away more but it is most certainly the phenols and salicylates issue. After reading everything here, the only way to continue feeding my three year old son is without any of these foods.

Everything I search on him leads me to sites for autism healing and similar spectrum disorders. He has never been diagnosed and when I’ve voiced concerns the doctor told me he was fine. Since having my daughter, I can now see so clearly their differences ad it is very frustrating to have to figure things out on my own. I am so thankful for the Internet and people like you! Maybe he is so mild that he never will be diagnosed but I know that he needs improved health. Maybe it is just all related to his celiac disease. I may never know! But we are on the road to a healthier, happier boy! And my husband is pretty happy to be pain free too!

So my questions are: what do you use for cooking oils and salad dressing oil? I see that the two I use (coconut and olive) are on the high side of the salicylates? And you mentioned your son also has trouble with bananas but those are low in salicylates according to the list I looked at. Do you know what it is about them that can’t be digested properly? I hate that my son can’t handle them because e would live on them! Well, he would live on everything that hurts him which makes it so so hard. And also, how do three year olds make the adjustment when they are so picky and only want the food that hurts? Some of the time that food is breast milk and even then, if I ate something that hurt him, he becomes obsessive and screams for it. The rest of the time he is fine with his one time a day. Any advice would be wonderful!

hopeauthority - February 20, 2013

Oh my Gosh, Sweet Peas! So sorry I was so busy working overtime and then of course you know the demands of a diet…so sorry I failed you! I’ll try to be better. I hope you are well.

My niece is celiac and even when she does GF faithfully, she still feels bad, I suspect from all the dairy she eats. As you saw, further improvements once dairy was taken away often occur. My son was GFCF for 6 mos before we switched to SCD. while salicylates cause him some trouble, and may be a factor in your son’s behavior issues, it could also be an number of things. Best way to know is a medical check, but if you want to try an elimination diet, take away the high salicylate foods for awhile and then add one back at a time very slowly and watch for reactions. I’ve done this often, reintroducing a problem food maybe once or twice a year to see if he can handle it now. But only change that one thing at a time and wait at least 4 days before trying something else since sometimes you don;t see the reaction until a day or 2 later. I use canola oil and olive oil, coconut oil and palm oil (Spectrum brand—looks like solid tub of crisco). My guess on the bananas with my son is that, even though I wait until they are rather brown (and the sugars are more broken down), that there is still too much sugar in them for him. He is on the Specific Carbohydrate diet, and while he can have…specific…carbs, and can have fruit, the starchy fruits like bananas don’t sit well with him.

Let me know how you’re doing.~tracey

8. Ayesha - October 22, 2012

thanks for all the supporting tips.I had no clue what so ever!! I believed everything was ok to eat as long as it was in moderation.
My 6yr old son has always had plenty of fresh fruit and veg but has recently in the last 6 months or so developed a sweet tooth for cakes sweets etc.He has not formally been diagnosed with SCD but it has been indicated by his SALT that he may be on the Autistic spectrum.I think I should start with cutting down some of these foods so rather than stop at once.And can anybody tell me if bread can be made using nut flour?

hopeauthority - February 20, 2013

Hi Ayesha: Sorry I didn’t get back to you sooner. I was away from the blog. When I put my son on a special diet, I was advised by an allergist to do a total elimination diet (removing all of the common allegens at once) for about 3-4 weeks and then gradually add back one item, wait at least 4 days to see if it’s tolerated (physically and behaviorally) and then add another, and so on. that’s the best way to know what item is the problem. At least that’s what our doctor said. Yes, bread can be made with nut flour and with nut butters. I like The Grain Free Gourmet cookbook’s ALmond Butter Bread (I make with cashew butter) and for a nut flour recipe, I’ve made Weston’s White Bread from the Cooking to Heal Little Tummies cookbook. There are many more SCD cookbooks now and several Paleo/Primal cookbooks which often include SCD recipes or recipes close to SCD that require one little substitution. Good luck!~Tracey

9. Rita - November 10, 2012

Hi. My son is 3 1/2 years old. He was diagnosed ASD in June. We had an IgG blood test done and it showed wheat, gluten, eggs, and yeast, and candida high. I read the book “Gut And Psychology Syndrome” and tried the GAPS diet. We only made it 4 days, then I switched to SCD (just from reading it on pecanbread.com), because we could have a burger and not just SOUP! I gradually just went to GF/CF. His teachers and therapist and I have seen amazing results, he is talking and understanding so much now! But, he has always had mushy stools and now that I have more information I have been thinking about diet alot more. I am waiting on BTVC book to come in so I have not read it. I am currently trying the Intro diet of SCD again with my son. A few questions, how long do I need to stay on each stage? Do I have to wait for a solid stool before I move on to the next one? What type of reaction should I look for if something doesn’t set well, since he already has mushy stools? Should I try eggs even though they were high on IgG? And, any suggestions for what to send for breakfast at preschool. Thanks for the encouragement, because I know I did not stick with it long enough before.
Rita

hopeauthority - February 20, 2013

Rita: I am so sorry I wasn’t on the blog back when you wrote. I hope your boy is thriving by now on SCD. It’s so great you are doing this for him at a young age. Trust me, it gets easier and is worth it. I promise. As for the stools, my son didn’t have a formed stool until he was on SCD for 18 months…thats how badly damaged his gut was and how long it took for him to heal, so we personally didn’t follow the stages religiously (and there wasn’t a push for that back when we started SCD in 2005). It was still pretty new to the autism community back then, though it had been healing guts of GI patients for decades. My son has always done eggs, but if you feel you can do SCD without it initially, it wouldn’t hurt. There’s also another therapy you might be interested in called NAET. It’s an allergy elimination therapy that I’ve done with my son. Google it and see if there’s a local provider near you. I did see improvements in my son after doing it, and the treatments were about $40 each. I was skeptical (most people are) but for us it worked well and we saw some improvements. As for breakfast, will they reheat his food? Maybe SCD pancakes or waffles with some honey syrup? Good luck. Let me know how he’s doing.~Tracey

10. most americans - November 24, 2012

I rarely drop remarks, however I browsed a few of the comments on Autism Diet Help StimTalk.

I actually do have 2 questions for you if it’s okay. Could it be simply me or does it look like a few of the comments come across like they are left by brain dead people? 😛 And, if you are posting on additional social sites, I’d like to keep up with
everything new you have to post. Could you make a list of every one of all your
social community pages like your Facebook page, twitter feed,
or linkedin profile?

hopeauthority - February 20, 2013

Hi Monique: Thanks for the kinds words. Sorry I didn’t respond sooner but I’ve been away from this blog. Anyway, sometimes the comments of spammers get through despite my best efforts and those are probably the comments you’re talking about! LOL. While I do have a presence on some social media sites, I keep them separate from the blog for reasons related mostly to my children’s safety and privacy. But my most uncensored stuff is really found here. Now to get back to a regular presence! Thanks again for stopping by!~Tracey

11. karl cameron - December 10, 2012

Hi my sons kai is going threw the process of getting a diagnosis and is already 3 years old and will now only eat chips, sausage, bread and butter, ravioli, and also drinks milk all the things I hear are not good for him.how Wii I be able to change is diet as he will not touch most foods they mainly have to be dry and will not use a knife and fork.and is always constipated and tired.please can you give me your advice

hopeauthority - February 20, 2013

karl: please forgive me for not being around when you wrote. i hope kai is doing well. what worked for my son (also at the age of 3 then) was a total elimination diet under medical advice of an allergist who specialized in autistic kids. Removed all common allergens from diet for 3-4 weeks, then re-introduced one for 4 days and if no reaction, then another for 4 days, etc. For him , the reactions were very clear. Its not easy to do this but its so much harder to do it later once Kai is in school and wants to eat what everyone else is. If you start early, there’s still challenges at school, but the routine will be ingrained in him by then. If the constipation is related to his diet, you’ll see improvement as his gut heals. Some see improvement right away, and while I saw positive behavioral signs, and the loss of the red cheeks and dark eye circles quickly, he didn’t have a formed stool until 18 months on the diet! That’s how bad his gut was damaged. My little guy used to bend over a tiny chair because his belly hurt and he was tired from not getting enough nutrition from his food. I really believe in medical supervision for diets, including necessary supplements to replace vitamins and minerals a child isn’t getting from his diet. I’ve been doing this religiously for 8 years and am so happy I did. Let me know how Kai is doing. Good Luck!~Tracey

12. sandra - April 4, 2013

Hi my son is 3 and would not eat anything apart from crisps and fresh milk pls help how do I get the diet pls show me the procedure thanks

hopeauthority - April 4, 2013

Hi Sandra: The best recommendation I have is to get and read a copy of “Breaking the Vicious Cycle” by Elaine Gotschall which is considered to be the “authority” and first stop when considering starting The Specific Carbohydrate Diet (SCD). You should also have your son’s pediatrician and/or a nutritionist or other medical authority who has knowledge about these restrictive diets guide you before starting any kind of diet as your son may need other supplements or vitamins. Many allergists or DAN doctors or developmental pediatricians or gastroenterologists have knowledge in this area. Once you’ve done those two things, you’ll be on your way and ready to get extra support from bloggers who’ve been there. Good luck. It’s not easy, but I think it’s worth it.

13. Erin - September 21, 2013

Hi Tracey!

Really good information on your blog. Your sons situation sounds much like ours. We’ve had him on the GFCSF diet since he was 3. He is six now, and like you said, while his language did improve from him being non-verbal to saying more words, as well as his focus and eye contact, other things stayed the same or got worse. Stimming seemed to have it’s ugly moments, as well as behaviors. And the biggest issue for him of all is his gut. Constipation, cramping and then bouts with terrible diarrhea. We have a great bio med doctor who specializes in autism and is a big heal the gut, heal the mind thinker. We’ve had testing done, and there are no food allergies present after 3 years on the GF diet. There are not any significant inflammatory markers showing and he tested negative for celiac and Crohns. So, where do we go from here? Poor kid is on about 12 different supplements as well as nystation for a yeast overgrowth in his gut. Also have given him MB12 injections for over a year now. Still…he hasn’t had a solid BM his ENTIRE six years of life. He is still not going on the toilet, and I think this is due to his discomfort and inability to eliminate properly. I’ve been thinking about trying the SCD and see if it helps? I’ve been researching day and night since he was diagnosed at 2 years of age, and I figure we could give it a shot. We also tried the GAPS diet six months ago, but I admit…the bone broth was an epic failure. Although, it seems the SCD may be similar? I’m willing to try anything. Our son is so bright, happy and smart! I just know there is that one “thing” that puzzle piece I need to find to give him that clarity he can’t seem to find. He feels so bad so much of the time. I think he’s learned to live with it and that makes me sad. And being semi-verbal he can’t even tell me how bad he feels. That’s when we see those negative behaviors…the screechy screams and the stims. Just want to help him any way I can. Again, thanks so much for your blog. I’m waiting to get my copy of Elanie’s book. I sincerely hope your son is doing well today!

Sincerely,

Erin

hopeauthority - September 21, 2013

Hi Erin:

So glad you wrote. It took 18 months on dairy-free SCD for my son to have the first formed stool of his life. And its been that way ever since. thank god. I did GFCF for about 5 mos before switching to SCD and did notice more changes from SCD. The good news is that today there are many more recipe books out there. I highly recommend a new book (I have no financial interest in it) called Against All Grain by Danielle Walker. The SCD is very similar to todays trendy Paleo/Primal diets and you can probably adapt many of the non-SCD recipes pretty easily. I love Against All Grain.

I’m sure you have a good probiotic in that arsenal of supplements, but if not, I’d add one. I also have done NAET (allergy elimination program) which I admit sounds a bit hokey when you look into it, but I saw some gains from that as well. We also saw big gains from doing HBOT (hyperbaric oxygen therapy) back when he was in kindergarten/1st grade and now again as we speak (6th grade). But your issue is the stool so I bet going totally grain free, as opposed to just gluten free, could be the answer. It’s not easy at first, but then it becomes second nature. The phase of them wanting to “steal” others’ foods is tough, but it passes. i just kept telling my son that particular food “will hurt your belly”.

Let me know how SCD goes. And stick with it because it took a year and a half before he healed enough to have a formed stool. Good luck!!! And let me know if I can help. Tracey

14. Erin - September 21, 2013

Oops…I spelled Elaine’s name wrong. Should have been wearing my reading glasses while I was typing. ha ha. 🙂

hopeauthority - September 21, 2013

LOL

15. Becca - December 9, 2013

Hi, I just saw this blog and kept reading. I have a son who turned 2 in august and is in the process of being “diagnosed”.. Now he has had a horrible diet and everyone does everything for him, so it doesn’t help our situation. I recently out him on a gluten free diet. Went and bought a ton of stuff he likes- all gluten free. I haven’t started a dairy free as well bc I just don’t know what I would feed him! He is also on a multivitamin daily. Unfortunately I do not have a DAN doctor. The one In town doesn’t take our insurance and the next closest retired 😦 my doctor said to go ahead and try it. So I pretty much bought anything i knew he would eat that was gluten free. Today is only the third day and he has popped up with red cheeks! The only difference is I have him hamburger meat.. And egg. I made homemade meatballs.. This is so frustrating. But because of his horrible eating habits I know this will help him.

hopeauthority - April 29, 2014

Becca I am so sorry I missed this post! I can only imagine that you have either given up in frustration or have stuck it out an triumphed by now. The basic approach to a new diet, though hard, is to eliminate all possible allergens at once for 2-3 weeks and then to add one at a time back every 4 days or so and chart it all and watch for physical or behavioral changes. The meat was not likely the cause, but egg is a problem for many. If you used breadcrumbs in those meatballs, it could have been that…hidden gluten or grain. Please stick with it or try again. It gets easier. You should know in a month if diet is making a change, and the beginning is hard because they often suffer a withdrawl like an addict. Then they get better. Ask your doctor if he can have a probiotic each morning (OTC) not a drug to help gut health. Sometimes gluten free is not enough and you need to go grain free. The paleo diet is very much like the SCD diet we follow and is so close taht I highly recommend trying some of those cookbooks. I love Against All Grain by Danielle Walker and she has a blog with recipes too. Good luck.

16. Becca - May 1, 2014

Hey no problem! We have been gluten free casein free and dye free for two months now! He is making wonderful strides. He has had some infractions and it shows me how much the gluten attributes to his stimming! He is doing great and going to see a DAN doctor this month! I hope to see even more improvements! Thanks!

hopeauthority - June 3, 2014

Becca, let me know how the DAN doctor visit went. What testing did he/she do and what supplements or other treatments were recommended? We’ve done so many, I’d love to hear what you’re doing.

Becca - June 4, 2014

We actually postponed the appointment because my pediatrician has been doing tests for us. I am conversing with her about Lyme induced autism bc he was showing huge improvements when he was on a zpak for an ear infection. Until then i am putting him on collidal silver and cats claw.

17. Loki's Mama - May 13, 2014

My son is soon 5 years old and has never had a solid bowel movement in this entire life, he is bread obsessed! That is all he wants but I can see the damage it is doing to his system, his bowel movements are acidic and burn him, he constantly has a bloated gassy belly and has very dark circles under his eyes. I worry for him, in Sweden you can not restrict gluten or dairy from your child’s diet at school or daycare without an allergy diagnose, but the procedure is extensive and will traumatize him. I feel so upset. My heart is breaking.

hopeauthority - June 3, 2014

My son was bread obsessed too. Its like an addict. For me, thinking about gluten and dairy as poison helped me find the strength to face the many obstacles to implementing a special and restricted diet, everything from my son’s objections to the eye-rolling school system and family and friends. It took a year and a half of fanatical adherence to the SCD for my son to have his first formed stool. I don’t mean to make it sound easy, but I’d get that allergy diagnosis regardless of the procedure. It can’t be worse than the pain he is living in. It may be the first step toward a seriously better life. If not, then make him bread from no gluten options and give him nondairy milk like almond milk or coconut milk if he has no nut allegies, and maybe no one needs to know you are even restricting him. Just say he can only eat food from home. You need to save him. You can do this.

18. Sindu - June 3, 2014

Thanks for your site hope…. It helps a lot. Becca I would like to keep in touch with you. My case is very similar to you. My son turned 3 on Nov 2013. He was diagnosed 2 months ago and I started GFCF. I sow few quick changes. Stool frequency changed from 8-10 per day into 1-2 per day. But his attention/verbal/some other behaviors not changed. He use to bend over couch or pillow and push against it. I would like to share information with you.

hopeauthority - June 3, 2014

Sindu: After about 5 mos on GFCF, I switched my son to SCD and saw bigger gains. And it was great when the bending over the chair finally stopped. heart-breaking… Do you have a DAN doctor? If not, you should. They are great and can help with supplements.

Sindu - March 17, 2015

Thanks for the reply. I am so sorry I lost this site until now. when I posted it in June 2014 my son was just diagnosed I was not in a better mood. I was wondering what to do. After 10 months I have more courage now. We did GFCFSF for 10 months. He still is non verbal. Only change I see ithe decreasing of BM frequency. Still has loos stool. We are with a DAN for 8 months (probiotics,vitamin/mineral,D3, B12 shots,broccoli seed capsuals, 5MTHF, glutathion infusins now and then, blood tests etc…)
I am going to start scd for him. I am waiting until he speak one word !!!!!

hopeauthority - March 17, 2015

Hi Sindu! I think it’s wonderful that, despite the shock of diagnosis, you had it together enough to do a diet and all the other things you’ve tried since then. SCD will be much easier since you are already used to GFCFSF. It took almost exactly a year and a half before my son’s stool firmed up so keep the faith. There’s a lot of gut damage in there and it takes ages to heal to the point you’ll see stool normalcy. That word will come. Then more. I really believe that. Especially since you are doing all the DAN stuff. It’s hard early on to believe it will get better, but looking back on my eleven years experience, I can say it does. My boy just turned 13 this week! Can’t believe it!

19. Becca - June 4, 2014

Sure! My email is hamerr100@Gmail.com
Have seen improvements once he got on elecare. It was used as a pediasure. He started signing and verbalizing more. Bc he doesn’t eat fruits and veggies. So he was lacking so much nutrition.

20. Stephanie - May 23, 2015

Hi-thanks for writing this. I’m about to embark on SCD with my daughter. We are already GF/CF. Part of my/her motivation is a return to cheese and hopefully our other sensitive food and GF grains. Are you able to reintroduce someday?

hopeauthority - April 10, 2016

Hi Stephanie: So sorry this somehow went to spam and I didn’t get a notification. I never reintroduced dairy or grain and am on 11 years of SCD now. I do on occasion reintroduce SCD legal foods that he can’t tolerate to see if he can now, with mixed results. But haven’t yet done grains or dairy. I think I read in Breaking the Vicious Cycle (but it may have been elsewhere) that farmer’s cheese and aged extra sharp cheddar would be the better cheese choices if you were going to have them. Since its been awhile, how did reintroducing go with your girl?


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