Thursday, July 10, 2008

Gluten and Attention Deficit Disorder (ADD)

Here is Cathy's remarkable story of how Jonathan, her eleven year old son, is getting better through diet and behavioral intervention.

My son was diagnosed four years ago, at age 7, with ADHD and ODD (Oppositional Defiance Disorder). He was the third most hyperactive child the doctor had ever seen (this is out of thousands of children). What a blow to me. My son has had many health issues since birth. He is legally blind, was born with an immature stomach and larynx, and seemed to have one problem after another. The quick answer given to us was to get him on medication. They gave me a list of all the ADHD medications available and I researched them, to see which one was the safest. I decided on Concerta, which was one of the newest drugs, and the biggest pro (I thought) was that it would only last in his little body for 12 hours. After that, as the studies showed, there would be no trace. The con to Concerta, as with many ADHD medications, is appetite suppression, but I felt that I could work around that.

After a year on the medication, I started to see that every 8 months or so, my son’s medication needed to be increased, as his body would develop a tolerance to the previous dosage. By the end, his medication was at 54 mg, which was an enormous amount in my eyes.

After a year and a half, I started researching ADHD a little more. My gut was telling me that his ADHD was more environmental, rather than genetic. I did a lot of research, yet there was so little to guide me. I tried an expensive, holistic approach that a certain company recommended, only to see that my son needed to take 6 large supplement capsules at one time, which caused severe abdominal problems. I stopped the supplements immediately, and we were back at the beginning.

Then, about four or five months ago, my boss told me about, a blog that her daughter had started. I eagerly went to the site and devoured everything that was written. The things I read made the light bulb go off in my head. Intolerance to gluten and hyperactivity in ADHD/ADD children were connected.

I took this newfound information to my son and discussed the change he would have to make. He listened intensely to what I had to say and the words that came out of his mouth were heart-wrenching for me; “Mom, I will do it, if it means I can be normal like everyone else.” That was the start of a new era for us. We started out small, making little changes here and there. We went gluten and dairy free. Through this, we found out that my son could tolerate dairy well (although I found I could not). So for him, we focused on being gluten free. He remained on his medication during the process, which took some time. We tried many different products and recipes, made lists of what was good, and what was not. The hardest thing I come up against is his age and lack of vision. For him, texture is a big issue, so we are still searching for a good bread recipe.

We have been 85% gluten free for months now, and the difference is utterly amazing. My husband (the skeptic) is truly amazed that food can cause such a change in the body. Since school ended 2 weeks ago, my son has not taken one Concerta pill. While he has normal 11 year old boy antics, the change in his hyperactivity is amazing.

Before this change (without medication), my son could not sit for 5 minutes or control his urges to aggravate others (part of ODD). He was like a wild monkey stuck in a small cage. With medication, he was quiet, but not in a normal, positive way. He withdrew and could sit in front of a computer, away from all, for hours on end. He had trouble sleeping to the point where we needed to give him melatonin at night to help him fall asleep, and he had terrible nightmares and night terrors. AND after the medication wore off, he was ravenous. He would eat all night until bed, non-stop. What I found out just prior to getting him off of gluten was that he was not thriving. For years we tried to get him to the 50 lb. mark, but he would teeter just below, and his growth in terms of height was….slow. Recently we went to the doctor to talk about the changes that were occurring and to have a checkup. In 8 months he gained 8 pounds and grew almost an inch. To me, that speaks volumes. Right now, without any medication, we have seen a different child. A child I remember who had a sense of humor, and a gleaming smile. He is outgoing, speaks clearly and wants to interact and do things besides sit in front of a computer.

Right now, my son needs a lot of reassurance that he is doing well, and it is reassurance that I have no problem providing. I tell him everyday how proud we are of him and how courageous he is to take this change head on. The one piece of advice I can offer to other parents of ADHD children is that when this change occurs as a result of a new dietary regime, you really need to have a hold on behavior modification. That can come from a program such as The Total Transformation, or behavioral therapy, which I highly recommend. Having structure, rules and consequences, and following through consistently are really important. My child has underdeveloped social skills, and little understanding of social cues. Working on this everyday is key. While he has the summer off, we have the chance to work on them and perfect them without needing to simultaneously focus on school (that would be tough).

This was the best thing we ever stumbled across, and I am forever grateful to the fellow parent who brought this to my attention. She gave me the greatest gift I could ever have, she gave me back my son and for that she will always have a special place in my heart.

See Gluten and ADHD (Part II) to see how Jonathan did after summer vacation.


RDC CCC Mom said...

I'm so glad to have found your site...I am well on my way to becoming the nutrition obsessed mom too! I have 2 boys with Chiari malformations, and thus dev delays, speech delays, sensory issues and some autistic like behaviors. We did metabolic testing and found we were allergic to soy and oats. And have some other imbalances. I am on my way to fixing those imbalances through nutrition and some supplementation. We do fish oil, whole food supp, limited casein (they need probiotics so we do yogurt), and lots of flax. Lots more info on our blog!

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Cannon and Kassie said...

amazing story...thanks for sharing!

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hamptonlady1 said...

Regarding the story about Johnathan and his ADHD and Odd, let me add that he is becoming more social and friendly towards other.
I am Johnathan's grandmother and I am witness to the daily changes I see in him. He is so proud of the way he is trying to contol himself and equally proud of his new way of eating.
I must say the dishes his mother has made a really good and I always look forward to something gluten free to try.
If Johnathan can remain medication free and be able to focus in school my prayers will have been answered.

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Brandyoldfashion said...

I have been trying for years (11 to be exact) to figure out what is wrong with my son Dylan. He is so smart and charming, but just cannot sit still, remember, focus or concentrate. I pulled him out of school this year to home-school him rather than go through another year of doctors and teachers telling me to medicate him. I spent 3 hours today at 2 different stores buying everything for a complete gluten and dairy free diet. Your story gives me hope! I have strength now to follow my gut that this is it and stay strong to keep him on this diet.

Brandy, Illinois

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Bariatric Food Products said...


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Pals courses said...

Hi Friends,

Gluten is the composite of a prolamin and a glutelin, which exist, conjoined with starch, in the endosperm of various grass-related grains. It is a protein composite that appears in foods processed from wheat. Thanks...

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stayathomemyheart said...

Hi there!
We adopted a little boy last year. He was diagnosed with Disruptive Conduct Disorder (I think that's the name) and ADHD. We refused medication until he had been with us over a year (to see if the lifestyle change would calm him down). He did calm down quite a bit with a steady, happy home, but his ADHD symptoms and aggressive behavior had really begun to wear on my husband, myself, and our 3 biological boys. We just got him on Ritalin, 10mg a day. It worked like a charm for 7 days and now doesn't seem to make any difference at all.
I'm on the Internet researching diet options. We did have the whole family gluten free for one month last year and I didn't notice any difference in his symptoms, tho I did not cut out dairy nor food colorings or additives. Do you try to stay away from artificial additives as well as gluten?
I am personally gluten free and feel much better, so it would not be too difficult to include my son on a diet with me (we already do gluten free dinners for the most part, with the whole family).
thanks for telling your story! I'm eager to try this.

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Anonymous said...

I'm wondering if this will work for my son. He is now 7 and was adopted at age 4 (domestic adoption). His ADHD and sensory disorders appear to have been caused by a bio mom who was using some sort of drugs (unconfirmed, but was suspected). He has been taking Adderall since age 6 and it just like the orignal poster, it seems we are increasing his meds about every 6 months. We started out at 5 mg; but quickly realized it wasn't enough; now we are up to 20mg AND a 5 mg of Ritalin midway thru the day and he is able to focus at school but all these constant drug increases worry me. Will a gluten free diet work for this situation?

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Zumba Clemen said...

I am considering gluten-free for my 4 year old son (ADHD) and I noticed in the above article the author says 85% gluten free. So it isn't necessarily "all or nothing". Taking some out can be beneficial?

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Gloria said...
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Gloria said...
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Anonymous said...

My son has Tourette's syndrome which is closely linked to ADHD. There is also a genetic component as my husband has the same diagnosis. We have tried the gluten-free and casein free approach. We have not been 100% free of these products and honestly ,my son who is 13 has been known to sneak "forbidden" foods frequently. When we've stuck to the diet we haven't been able to- without a doubt- see behavioral changes. It's so difficult to know what to blame when we DO see bad behavior- fidgety movement,difficulty with transitions, frustration with any change in set plans, impulsivity, motor running type behavior, ---we always seem to be asking ourselves is it ADHD, is it hormonal influences (like i said he's 13), sensory sensitivities, or finally is it the pizza he snuck on the way home from school yesterday.And sometimes we wonder how much is just typical boy stuff. He has been going to OT for the past two years to address sensory issues...and although there is some improvement. it's fluctuating.

Incidentally his allergy report did reveal a moderate sensitivity to gluten and casein.

Ironically, in the last month when he's been the most diligent with the diet, going to OT twice each week(they increased his mandate) , and swimming 3x each week, we just received reports from 2 teachers that he has been misbehaving in class more frequently than usual.
After all that we're now going to try meds for the first time. i feel we've exhausted many holistic approaches and are now curious to see if he can reach his potential with the addition of meds-concerta btw. i even wonder if he will improve in his behavior just because he won't have to sneak foods and lie to us about doing so.

incidently i do appreciate the relief that many kids experience when they get rid of gluten...i do think that perhaps the scientific community needs to re-think the labeling of the should be a label which truly represents the nature of the problem- maybe allergen specific hyperactivity disorder.

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Nicoleblakeman said...

My 8 yr old was diagnosed with ADHD when he was 5. We started him on a gluten free, organic, dye free, artificial food free diet just before his diagnosis. It makes a HUGE difference in his behavior. He still is on a low dosage of concerta but if he eats gluten his behavior is completely out of control, meds won't help at all. High fructose corn syrup has the same effects on him too. We could never go back!

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amber gori said...

These details are so nice to shared with us and also possible solutions you have got and it is perfect instrument keep it continue.

difference between add and adhd

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Anonymous said...

This is so inspiring to read! thank you for sharing!
I highly recommend "What's Eating Your Child" by Kelly Doorfman.
She has two chapters on ADHD, and talks about food intolerances and behavior in great depth as well as EFA's etc...absolutely worth reading.

Recently we put our son back onto gluten to test if his intolerance is coeliac or non coeliac. After the first month, his behavior deteriorated rapidly. We run the tests this week and I can't wait...if we continued, he would probably be diagnosed with ADHD as he is hyperactive, can't concentrate, and is proving so challenging. This is not his normal self! It's so much worse after a gluten meal, and getting worse the longer we go on.

For some children apparently there may be other sensitivities that affect behavior. I'm keen to exclude soy next (we're already dairy free). I highly recommend reading this book and trying dietary changes...It takes several weeks to get toxins out of our system though.

Just to say, if you go gluten free, it's imp't not to replace gluten with hi GI, hi sugar, processed foods that won't help behavior either (which unfortunately a lot of gluten free foods you buy are). but there are tons of great recipes out there...

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jen davidson said...

To adoptive/foster parents...go to and get Karyn Purvis' book. We do the whole diet thing which is great but there is a bigger piece to the puzzle. This information helps find the ROOT cause of the behavior issues and how to help before doing the medical intervention.

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missylew said...

We have just started on our journey to help our 5 year old daughter. Thank you for sharing your story. She is the most beautiful little girl inside and out. Other children notice her ticks and sort of just tolerate her. Her teacher called her and I quote "crazy". She too figits almost constantly. Her therapist referred us to Childrens Hosp ADD/Adhd clinic. I really don't want to medicate her.I feel that would change who she is. She is a very artistic child and art actually calms her. I've been googling to find as much info as I can. I'm going to try the Gluten free with her. Again thank you for sharing your story.[and for listening to me]

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Anonymous said...

Here is a link where you can access for an exclusive interview with Arjan Kuipers on the increasingly negative effects we see of gluten on children with ADHD and Autism in particular.

Arjan Kuipers is a chiropractic neurologist and has been a practicing clinician for over two decades. He is the founder and chief innovator of Brain Building Company and ADHD & Autism Training, which provides easy-to-use training programs for parents and professionals that are developed to facilitate a positive, lasting change in children with ADHD and autism.

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Sande said...

You could have been talking about my son. He was diagnosed ADHD last spring and has been on meds since. We recently decided to go GF. Reading this really gives me hope. I want my sweet, funny little boy back. I am also glad to see it didn't have to be 100% to notice a difference. THANK YOU!

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Jen Black said...

Look into the Feingold diet. My ADHD son has been on it since August and his aggressive behavior and poor disposition rarely are seen anymore. We are about to eliminate gluten and casein to see if attention and focus continue to improve.

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Anonymous said...

I have a wonderful son who has ADHD and sensory integration problems. It seems his symptoms come in cycles, so I suspect diet might be contributing to his symptoms- that is may be inflamatory-related. Also, medications (we have tried most) are only having a limited effect on his behavior. He simply doesn't fit the textbook ADHD cases, nor does he appear to have any symptoms of celiac other than the ADHD ones. I have been reluctant to try the gluten free way because of the hassle and expense. But it is a last resort. Fingers crossed, we are giving it a try soon. Hoping we won't have to give up gluten completely, but just avoid it. Is that realistic? Also curious how long a gluten-free regimen takes to yield results in ADHD symptoms.

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SReeseDavis said...

I would highly recommend the books Wheat Belly and Brain Grain to read as you opt for a gluten-free diet. They explain it wonderfully and you will see the other added benefits from going gluten-free. Alzheimer's and dementia are also linked to a gluten diet. As far as the expense, it really is not more expensive. Stay away from the commercial boxes of gluten-free processed food. They have other junk you don't need. Just stick to whole food. Eggs, meat, vegetables, fruit, cheese, nuts, coconut oil and olive oil in all your cooking. I have found great success with all my family.

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SReeseDavis said...

You notice a difference in a couple of weeks if you go completely gluten-free. Gluten is addictive so once you go off it, you will not need the "comfort foods" such as bread, pasta, etc. Brain Grain and Wheat Belly have great recipes in them without buying a lot of extra stuff. Real Food is the Mantra!

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