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  • Dr. Rodney Ford M.D.
    Dr. Rodney Ford M.D.

    "I Got my Little Boy Back" Says Mom

    Reviewed and edited by a celiac disease expert.

      Journal of Gluten Sensitivity Summer 2016 Issue


    Celiac.com 07/15/2016 - This week I have noticed many blogs/articles claiming that the only illness that can be caused by gluten is celiac disease. Yes, they state that celiac disease alone needs a gluten-free diet. I totally disagree with this distorted out-of-date viewpoint. There are tens of millions of non-celiac people who testify that gluten causes them significant harm. It is my suspicion that the wheat lobby is cranking up these anti-gluten-free messages as a way of stopping wheat sales from slumping. Why else promote such a barrage of misinformation?

    As if to counter such negative press, I got this email last week:

    "Dear Dr Ford, since we had our appointment I have taken George off gluten and have noticed a huge difference in his behaviour. George is now a much more sociable and loveable little boy. He has manners, he shares and he will say sorry if he has done something wrong. Obviously he is still a 4 year old boy so I have to expect some behaviour issues and sibling rivalry. Thank you so much for giving me my little boy back."

    By way of explanation, George was aggressive and having difficulty learning, he was easily distractible and he was always fighting with his sister. His parents saw him as being a naughty boy, however he was displaying severe ADHD behaviours. They wondered if he might need some medication and were exploring psychological help for their family.

    However, as I have seen a lot of behaviour-disturbed children get completely better off gluten. So I tested him for celiac disease (this was negative), I then recommended a strict gluten-free trial for three months. As you have read, his parents say that there has been a dramatic change, and now see him as a "sociable and loveable little boy" – in just a few weeks!

    To me this is clear evidence that gluten can cause significant inflammatory damage to our nerves and brains. George was displaying ADHD behaviours, triggered by gluten. It is a pity that those who are ridiculing the gluten-free diet movement are attempting to deny children like George the knowledge of healing on a gluten free diet.

    Evidence points to the nervous system as the prime site of gluten damage. This theory is attractive because it gives a unifying answer that explains the following conundrums:

    • a mechanism of the non-gut symptoms of celiac disease;
    • the behaviour disturbances caused by gluten reactions;
    • the psychiatric and personality disorders provoked by gluten;
    • the multitude of neurological symptoms;
    • the autonomic nervous system disturbances (often seen in people with celiac disease);
    • why such small amounts of gluten can cause such major reactions by the amplification effect of the nervous system (not dependent on any gut damage);
    • why gluten can create such a diverse range of symptoms. Because any agent that causes widespread neurological harm (think of multiple sclerosis and Syphilis) can generate almost any array of symptoms.

    Nerve and brain damage from gluten can also explain why celiac patients with extensive gut damage can be asymptomatic. The histological gut damage in celiac disease is not mediated through this neurologic system: it is caused by local toxicity to the bowel in susceptible people. If these people are not highly sensitized to gluten, then they may not experience any symptoms mediated through neural networks.

    I got mad and grumpy
    I would also like to tell you about Nick. When he was 8 years old he wrote his story down for me:

    "My name is Nick and I am eight and a half years old. I had a problem when I had gluten, so my mum found Doctor Ford to help me. He helped me get off gluten. When I tasted the first chocolate biscuit it tasted weird but now I'm getting used to it. I had troubles when I was on gluten. Every day I got mad with myself and sometimes with others. I didn't want to be mad. I was grumpy."

    I had dizzy spells
    I also had dizzy spells every day and I didn't feel well. They thought that I had a heart problem when I was 8. I went to the doctor and to the hospital lots and lots as they were trying to figure out what was wrong with me. I wasn't very well. When I was on gluten I had sore tummies at least twice a week.

    I am off gluten and I have more energy
    Now I am on a gluten-free diet. When I'm off gluten, I still sometimes have dizzy spells – but not usually. You might lose weight when you first start go gluten-free because you are getting used to it.

    At school I found I had to get off gluten, as I couldn't sit still on the mat. I now have got more energy to run. I can sprint now. I can sleep better too. I used to not have enough energy but now I have enough energy to sprint around the cross-country. I've achieved in my spelling now and I'm much better at school. My Doctor Ford is a nice man because he talks nicely. Tons of people need to go and see him.

    Gluten-free helps your attitude
    Please come to our diet because it helps you breath better, it helps your attitude change. It makes you be stronger. Me and my brother used to fight a lot when I was on gluten but we like one another now. I liked gluten foods but I can't have it as it's not good for me.
    In my family we have got a dog and four humans – Jordan, Dad, Mum and me. We are all gluten-free but my dad doesn't have to be gluten-free. It's unfair when my dad eats gluten and it makes me feel hungry.

    The food can be nice
    Our gingerbread bakery bakes us nice food. When I found out I was allowed to have a gluten-free birthday cake I was very happy. We go to Gingerbreads once a week. I buy chocolate chip biscuits they taste delicious. World come and be gluten-free as it makes me delighted! I love people that make yummy gluten-free foods.

    My brother says that being on a gluten-free diet is like being in China with no noodles. He finds it hard and says he just wants to be normal. I say he will get used to it.
    Nick

    Nick's mum adds:
    Prior to going gluten-free Nick had the following list of symptoms:

    • Rashes
    • Sore tummy and runny poos
    • Very irritable
    • Very tired – slept more than 12 hours
    • Poor memory and learning hard work
    • Behaviour problems – got very angry with others
    • Bad hay fever and asthma
    • Intolerant to dairy
    • Dizzy spells for 6 months and not feeling well
    • Very fussy eater.

    The good news is that of today (six months later), he is not having a lot of these symptoms and he is a much nicer person all around. He can now have dairy products again."

    Mum
    The implication of gluten causing neurologic network damage is immense. With estimates that at least one in 10 people are affected by gluten, the health impact in enormous. Understanding the components of the gluten syndrome is important for the health of the global community.

    Written in the spirit of cooperation and knowledge sharing. You can read many more patient stories in my book "Gluten-Related Disorder: Sick? Tired? Grumpy?" http://www.GlutenRelatedDisorder.com 


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    Guest Oonagh Williams

    Posted

    I totally agree with Dr. Ford. As a trained chef with celiac disease (no stomach symptoms) and a national speaker and writer on food for gluten free and other food allergy diets, I see so many people that have found various 'disorders' (I hate saying diseases) improve or disappear on a GFD. My cross contamination reaction still is arthritis/flu like joint pains, used to also be female problems. I look at family members with ms, fibromyalgia, infertility and have to wonder if it is all gluten related. I have now 5 friends with diabetes that when they eat gluten-free carbs rather than wheat carbs their numbers are better. One friend with Parkinsons that I asked to try a GFD and he feels so much better.

     

    Based in NH and with top celiac disease doctors from Mass General, Beth Israel and Harvard Medical School, they tell us at conferences that basically they are learning more about celiac disease and GFD all the time. No longer is it just stomach reaction that doctors will rarely see in their lifetime!!! Unfortunately you still have doctors that think they know it all and won't even consider testing for celiac disease since you don't present with what they think are classic symptoms, add in media hype and celebrity stupidity - Bon Appetit recently had interview with Zoe Saladna who says her family is 80% gluten free but Italian husband won't give up his bread and pasta - this is what causes the problems we all face.

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    I am another example of that. Been gluten free seven years. I accidentally ate a whole wheat wrap and it my irritability episode was almost deadly, my memory failed me like a very old person. Negative for celiac but have two genes that code for gluten sensitivity. All my medical problems (+/- 20) went away once gluten free. Wish for better research and more understanding.

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    can I please have permission to use young Nick's analogy that he say's his little brother Jordan came up with?

    "My brother says that being on a gluten-free diet is like being in China with no noodles. He finds it hard and says he just wants to be normal. I say he will get used to it.
    Nick"

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  • About Me

    Dr. Rodney Ford is a Pediatric Gastroenterologist. He was Professor of Pediatrics at the Christchurch School of Medicine. He runs the Children's Gastroenterology and Allergy Clinic in New Zealand. He has written a series of 7 books on gluten (www.DrRodneyFord.com). His main theory is that symptoms from gluten reactions arise from brain and nerve damage. His latest book is "The Gluten Syndrome" which encapsulates current ideas and concepts of gluten and the harm that it does.

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