Autism Treatment Center of America Forum

[for_dennis]

Hello, Son-Rise Friends!

I am the mother of a 13 year old PDD-NOS son, who also has epilepsy. We are considering starting the GFCF diet, but I have a few questions first.

1) Can this diet be done in "part" or should we do it 100% in order for it to be most effective?
2) Can enzymes be used in place of the diet and be just as effective?
3) How do I chose which one?
4) Should the child be tested for allergies first?
5) Will his epilpesy meds need to be taken into account? (he is on a lot of them!)

I realize these are fairly basic questions. My son is 100% healthy, no allergies/GI troubles/sleeping problems or anything at all. He is also 5' 9" and about 130 lbs., and will be able to kick a fit over the changes in diet if he wants to!! We also have 3 other kids, ages 15, 11 & 10, which will make it a bit harder to implement the diet. I am trying to get my attitude sorted out, to make it go as smoothly as possible, but if anyone has advice or answers to these questions, it sure will help!!

Many thanks! TRACY

[amanzo4jc]

Hi Tracey,

We started our son Liam at 18 months on the GFCF diet (he is now 22 months) due to signs of autism....We began this journey by first getting a Defeat Autism Now (DAN) doctor for our son, which you can find by going to the Autism Research Institute's website at http://www.autism.com and clicking on 'list of clinicians' on the right hand side. Some states do not have DAN doctors yet, but hopefully you can find one relatively close. We had about a 3 month wait for an initial appointment here in Cincinnati, OH. Our DAN doctor wanted us to complete several tests first (stool, urine and blood) to check for intolerances, hidden food sensitivities, excess yeast in the intestines and parasites. She sent us a huge box of testing tools and paperwork. We did the urine and stool collections at home (oh so fun!) and FED-EXed them to the Great Plains Laboratory. I took Liam to the local Children's hospital twice with a lab sheet from the DAN doctor to get eight different blood tests, and once with a vial to send to a laboratory called Alletes in Maine that checks for hidden food allergies. Then at our first DAN appointment (which occurred two months after we started the diet), we discussed all the results and I was given a huge binder of information. Liam did have intolerances to gluten and casein (very high to casein, actually) and a whole additional set of hidden food sensitivities (soy, rice, almond, almost every nut, green pea, watermelon, tomato, etc!). He also had excess yeast but no parasites.

We started the GFCF diet a few months before our first appointment actually after I spent several weeks learning about it and substitutes on-line. You must do the diet 100% to truly be effective. Of course I was giving him brown rice pasta and bread products and almond milk almost daily which may have caused the additional sensitivities because you have to actually rotate the protein substitutes you provide. So if possible, I recommend tests FIRST, then diet changes. At the appointment the doctor recommended our son also take an enzyme with meals to help digest food (he takes Enzyme-Complete DDP-IV II with Isogest from Kirkman's), but I don't think this is a replacement for the diet's benefits. Are you familiar with the medical research reporting that some children on the spectrum develop leaky guts due to yeast imbalances, and peptides (partially digested proteins) of casein and gluten enter the blood stream and bond with neuro-receptors in the brain? You may want to get your son tested for yeast and parasites as well but your DAN doctor would know what to order based on the information you provide. Our son takes several additional vitamin supplements to build up his immune system as well as Nystatin, a yeast medicine, to kill the excess yeast. The DAN doctor and dietitian were VERY helpful and explained a lot to us as well as provided written information to help us understand the leading research and be successful with Liam's diet.

Our insurance (Blue Cross/Blue Shield) did cover some of Liam's initial tests (we payed $300 out of $1500), but not the hidden food allergy test ($220), initial DAN appointment ($350), initial dietitian appointment ($100), Nystatin ($50/month) or Supplements (about $250/month). Your insurance may cover more - and most DAN doctors provide forms to submit to the company. If you cannot afford these avenues at this time, you can try the basic GFCF diet and still have tests done later to find out if your child has sensitivities to casein, gluten or other foods because the body retains antibodies up to two years. You may want to find a way to afford testing though since he is on other medications for epilepsy and you'd want to make sure a DAN doctor knew that and could offer appropriate medical feedback. BTW - Liam's pediatrician is willing to be 'educated' about the DAN movement but was very skeptical at first. I showed her his test reports and she became more supportive. Be prepared for this if you want to include your son's pediatrician in on anything you do with a DAN doctor. Because it is a relatively new approach to see autism in part as a neurological and medical condition, some doctors are quick to dismiss the newest research and stick more with the 'genetic and behavioral' description of autism or spectrum disorders they learned in med school.

I MUST SAY I noticed differences the first week Liam was on the diet.....his eye contact drastically improved. A few weeks later he brought a toy to me for the first time. Now four months later, he seems to keep growing in social development, eye contact, attention span and enjoyment. (I attend my first Son-rise Start-up here in a few days and can't wait!) He used to have a lot of stomach pain, loose stool and crying spells before the diet, but now I believe he just feels better overall. We have his first follow up appointment here in September, so additional tests may be necessary to see how his body is progressing.

Because Liam was so young it was easy to change his diet (that's why I jumped on it). He doesn't care that he and his sister eat different things (at least not yet!). There are many good websites and products available that I think your son would enjoy if you decide he'd benefit from the diet. Your other children might even like these products and actually if you just make things more from scratch (grandma's way) you avoid a lot of gluten anyway! I can give you my favorite websites if you would like at some point in time and tips I have learned along the way. Who knows, maybe if you get him tested he may have no need for the diet and you can have peace of mind knowing you are not leaving a stone unturned when it comes to helping your child. =) Hope this was helpful and not too overwhelming!

Blessings to you,
Autumn in OH, mom of Liam (22 months) and Mycah (3 1/2)

[for_dennis]

Thanks, Autumn.

Sounds like you are quite the pro!!

This certainly answers some of my questions. I still have reservations, given Den's age and the ages of our other kids. Being a high functioning kid, we aren't looking at a very severe case of autism, and as I said, he has no health issues - that we can detect right now!! The other thing to take into account is the cost, as we are on pretty limited budget. I think I will see how the program goes as we get into it fully (the focus room is still under construction) and then decide.

Again, thanks for the pointers. Have fun and learn a lot at the Start-Up ... it is an amazing experience!!

Tracy

[amanzo4jc]

Thanks, Tracey !!!!

[for_dennis]

No, I think the thanks goes to those who share their experiences. We are new at this, even tho' Dennis is 13. Up til now, it's been all epilepsy for us!! That is the other thing to consider ... we are currently going thru testing for potential brain surgery, and "fun" things like that!!

Good luck and wishes for you and your family -
Tracy

[Suki]

Hi Tracy,
Just caught up with your message - 6 months later! Perhaps my story will help.

My son is also high-functioning (Asperger's) and we have 3 other children, so the concept of changing the whole family's diet seemed overwhelmingly impossible. I sat with the idea for well over a year after I heard about it, wanting to try the gfcf diet, but not knowing how. Eventually I found a book, advertised on line, called "The Kid-Friendly ADHD & Autism Cookbook", not too expensive, so that's where I started to find out more. It has a good introduction, with information about a range of possible diets you might choose to try, devised on the basis of different beliefs about the impact of different foods on autism. That and the recipe range gave me confidence to think it was possible.

The first job for me was to sell the idea to my son. I finally felt ready a year into his Son-Rise Program. I tried out a few of the recipes for things similar to food he already liked and tried those on him without telling him. A month later, I talked to him about the fact that diet might help him and suggested we try casein-free for a month. He went along with it. To help him, I offered to join him, since I felt I couldn't ask him to do something I wasn't prepared to do. So, that was how we started. The next step was to take out gluten. I used the same kind of process to introduce it, and we saw significant changes in his flexibility and brain "availability" after just a week.

Amusingly, when the diet was more established, a few months later, I commented to him that the dairy removal didn't seem to make much difference, and he contradicted me, telling me that the "stomach pains stopped"! He had never told me he had stomach pains before. We have now been on the diet for 15 months and have become quite used to adapting meals, though I am certainly doing more baking and cooking, as home-baked products are usually far more nutritious than store-bought, and you can add extra nutrients in some places.

I don't know the answer to your questions about epilepsy. I would recommend you research that for yourself. My son's diet is quite restricted, but that is largely by his choice. It is certainly far healthier than the way he was eating before we made the change, and he looks healthier.

My reading of that first book led me on to read other books about nutrition, some just about healthy ways of eating, which has impacted on our whole family's diet. I gained some confidence that I could be the best expert for my family's diet. (I also lost a few excess pounds in weight myself along the way, without trying!) Previous consultations with a dietician had yielded no help with encouraging my son to eat more healthily, and no confidence or knowledge of the latest research into the gfcf and other similar diets. So we have gone it alone. Just remember, there is no reason to assume that dairy protein or wheat have to be a part of a healthy diet. So much of what we hear about diet and healthy eating is filtered through media fed by the food processing industry. Good plain food is perfectly healthy.

Inform yourself as much as you can and have the confidence to put your beliefs into practice.

With all good wishes,
Suki

[for_dennis]

Thanks for your input Suki - it has given me a new outlook on the gfcf diet. Right now we are getting over brain surgery for the epilepsy, but I'll see where things wind up once we are well past that & perhaps then try the gfcf diet.

Thanks again! TRACY