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Diet Didn't Work?

Most child benefits from specialized attention to the food and nutrition they receive.

According to parents and autism groups, diet intervention is helpful in 85% of children.  This is an amazing success rate… with very little downside.   If you are one of those families who feel diet “didn’t work” for them, there may be reasons for that.  I encourage families to explore, learn, and give diet another try.

The top two reasons I have found that diet has not helped is because 1) the diet was not done completely or for long enough, or 2) there was something else in the diet or environment interfering with the positive results you would otherwise be seeing.

All special diets, particularly the GFCF (gluten-free and casein-free) diet (when gluten and dairy are a problem), most often need to be done without any infractions. Small infractions can interfere with the overall success.  I find people either inadvertently add hidden sources or misunderstand the important of infractions.   This means the complete elimination of dairy including butter, no infractions from the teacher or grandma, and no wheat-based cake at a birthday party.  Additionally, the diet needs to be done for long enough for the gluten and casein to get out of the body, a minimum of 3-6 months or longer.  Many families benefit from trying the diet again with a commitment to 100% compliance for 6 months.

Second, sometimes a food remains in the diet that is problematic or new food is substituted in that is also a problem.  These other foods can mask the benefits that would otherwise be seen on the diet.  A very good example of this is children that have a sensitivity to phenols/salicylates (in apples and grapes and other fruits).  When gluten and casein are removed, the child may have some improvements that are subtle, but the phenols creating hyperactivity or aggression mask the subtle benefits of the diet. In fact, sometimes, these other foods are added in greater quantity than before—so the child seems “worse” on the new diet.  It’s beneficial to consider multiple diet strategies and food reactions, when nourishing hope.  After all, you’re discerning what your child needs.

With the great results often reported from parents, it’s worth trying diet again.

 

10 Comments

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  1. Stacey March 11, 2011 at 12:37 am #

    This is so true Julie. I didn’t see much change in my son on the GFCF Diet. We had some improvement but no amazing changes like I was reading in the Autism recovery books. Then I discovered Phenols.. Well detoxing these from his diet was interesting but worth everything! The day he was over it was the day our lives did a 180… The GFCF diet is still a very important part of his diet as we have tested this, only to get great set backs in his progress. It was only until we took out the phenols was this possible.. It is truly inspiring the information I have gotten from Julies book and from all the information on this site. Thanks so much xx Stacey and Xavier

  2. Tracey McKoy June 1, 2011 at 9:45 pm #

    This is very interesting. We have been doing GF/CF for years with mainly positive results. It definitely helps our son but we still see marked hyperactivity and we are beginning to see increased aggression as he is entering early stages of puberty. I have always felt that diet is key in behavior and brain function. We are guilty of allowing minimal amounts of casein on occasion. My son is also “addicted” to apples, applesauce etc..I will have to investigate the possibility of phenol sensitivity – very interesting. Since he is on a limited diet I have always allowed him the freedom to munch as many apples as he likes and/or bananas. I think it is important to not only look at gluten and casein but the other diet offenders as well likes sugars, phenols and colorings to name a few. It is true, you have to be 100% committed to GF/CF for optimal results. I believe our kids are very sensitive individuals so even tiny amounts of offending foods add up to be major reactions.

    Tracey

  3. Tina June 15, 2011 at 9:15 pm #

    While I truly believe that diet is a necessary foundation to begin walking the path towards recovery, I can also see now how easy it is to get hung up on the dietary intervention to the exclusion of other therapies. Our son was a non responder to the GFCFSF so we began SCD and did this strictly for a year. While SCD, we experimented with removing phenols, and implementing low oxalates, removing IgG sensitive foods. While no doubt our son was healthy, growing and filling out nicely, many of his autism symptoms were not being resolved, including loose stools and bloated belly. We from there moved on to Body Ecology Diet and tried to implement many of their principles – adding fermented foods and coconut kefir, removing as many sugars as possible, trying to add more veggies. This seemed to help our sons digestion and his distended belly was starting to normalize as were his stools. The BED diet has been wonderful and I continue to research the possibility of our son needed much higher doses of probiotics.

    However, through all this, we were doing other therapies as well (HBOT, MB12, supplementation). We just recently began chelation therapy through the Andy Cutler Protocol, and we are starting to finally hear our son say a few words, tantrum less, and his mood is greatly improving. I would say that even though diet is a big part, removing heavy metals has been a bigger part of our son’s recovery. We just wish that we had began this a year ago instead of focusing so much of our attention on the diet as it is very easy to become side tracked by this (especially since the diets are so very time consuming).

  4. Renee June 16, 2011 at 6:57 pm #

    Julie,

    Thanks for all of the great info. Our dd has been on Feingold for over 3 years and GFCF for almost 2 years. We saw a lot of improvement on Feingold, but even more with GFCF. Our allergist who recommended she be tested for gluten sensitivity warned us that when gluten is affecting the nervous system (as evidenced by her behavior and learning difficulties), it would probably take a year before we would see major improvements. She was absolutely right. One year after starting GF, our dd’s reading suddenly started improving, and within about 6 months, she went from two grades levels behind to two grade levels ahead. It’s so important that parents be committed to long-term, 100% compliance. I think that knowing all of the science behind what’s happening helps parents to stay the course.

    Renee

  5. Terri Pierman December 10, 2012 at 12:29 pm #

    Glad to see so many sticking with their commitment to their children and the diet. It is so easy to use time and the children’s protest as an excuse. I believe that the small “cheats” can cause very long term effects and that it takes a very long time to get the effects of eating gluten, in particular, out of the body. Thank you for writing this encouraging article!

  6. Alison Taylor February 14, 2013 at 9:26 am #

    Hi Julie,
    Do you have any information on removing MSG from the diet as I am thinking this may be the cause for us as strict SCD for two years did not improve things for us.

    • Julie Matthews February 14, 2013 at 10:47 pm #

      Hi Alison, MSG often causes a reaction and even free glutamate sometimes can be a problem for my clients. In my book “Nourishing Hope for Autism” I do talk about glutamates and MSG, and various diet options.

  7. Kimberlee Brozovich June 7, 2013 at 9:28 am #

    An allergist/immunologist can provide expert medical advice and treatment in the evaluation and management of people with allergic diseases, asthma and immune problems (see above for types of patients seen). This includes the ability to perform and interpret allergy testing, expertise in treating complex allergic diseases and asthma, as well as the ability to prescribe allergen immunotherapy (allergy shots).

  8. eamonn omalley November 17, 2013 at 5:39 pm #

    Hi julie my son has been on gfcf diet for 5 weeks and he was making improvements in first week but he got really ill and has now regressed and is worse than ever .we have stuck with the diet but now we are hearing about phenols and wondering what will be left to eat with these taken out too , we are from uk and are getting no help at all from any proffesionals as there seems to be no support in the uk as in u.s ……..any help or advice would be most appreciated

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  1. Dairy infraction | Youtoobelong - September 24, 2012

    […] Diet Didn’t Work? | Nourishing HopeAll of the autism diets, particularly the GFCF diet, needs to be done 100%–no infractions, period. This means the complete elimination of dairy including butter, … […]

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