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"I Got my Little Boy Back" Says Mom

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 I totally disagree with this distorted out-of-date viewpoint.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."

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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 

Celiac.com welcomes your comments below (registration is NOT required).





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2 Responses:

 
Oonagh Williams
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said this on
18 Jul 2016 8:34:18 AM PDT
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 GF 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 CD doctors from Mass General, Beth Israel and Harvard Medical School, they tell us at conferences that basically they are learning more about CD 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 CD 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.

 
Miguel Rosado
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said this on
18 Jul 2016 11:41:34 AM PDT
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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I believe the talk around this forum is that cheerios are not gluten free enough for people with celiac at this time. I don't know if anything has changed on that and when their lawyer calls me I'll quickly delete this. haha

Could be we generally say get off of dairy for a few months when going gluten free. The part of the intestines that produce the enzymes, and help break down dairy are associated with the tips of the villi, which are the most damaged if not gone in celiacs. THIS is why most of us end up with a lactose intolerance early on. And most can introduce it later after healing. As to her symptoms with it there was a bunch of research about dairy permeated the gut and causing neurological issues in a autism study I was looking at years ago. And there have been other studies about damaged intestines and how the hormones in milk can easier effect ones body. Personally I also have a huge grudge against dairy on a personal level as it is not natural to suck on a cows tits and drink the stuff, nor your dogs, nor a rabbits......I mean come on even Human Breast milk you would find odd to drink as an adult right? Back in the past dairy was a great way to get calories and fats when there was famine, etc around I mean it is meant to make a calf grow into a 500+lb cow. But on a genetic and hormonal level it is not really for human consumption and now days the whole corporate BS propaganda push and dairy farms shove that oh its healthy stuff down your throat. There are plenty of dairy free options for everything feel free to message me if you need help finding anything I have been dairy free for over a decade.

The full celiac panel checks TTG IGA and IGG, DGP IGA and IGG, IGA, EMA as Jmg stated above. Your test included TTG IGA and IGA. If your IGA was low, a low on TTG IGA would be inconclusive. But your IGA is fine. A high on any one test is a positive for celiac and should lead to an endoscopy for confirmation. So I'd get tested for TTG IGG, DGP IGA and IGG and EMA since there are symptoms. Warning I'm not a doc.

I did a gluten challenge for my endoscopy and requested a second blood test after my follow up with the consultant. I never did see those results but my GP said no celiac was indicated: Which left me gluten free for life, that wasn't an option after the challenge, but with a less satisfactory diagnosis, one by omission rather than the definitive 'you're celiac' one I was expecting. Yes! I have been 'properly' glutened on a couple of occasions but on several more I've detected a change or a reaction based on what could only have been trace amounts. NCGS is as yet poorly understood but patients tend to have more neuro symptoms than digestive. That's definitely been my experience, although it was only after going gluten free that I realised quite how many digestive symptoms I had just been living with as 'normal'. Close friends and family get the full explanation. 'I have an auto immune disease similar to 'coeliac etc.' If they stay awake long enough I'll tell them about the less than perfect testing process I went through or the Columbia Med research and the possibility of a blood test soon. They can see the difference between me on gluten and off it so they understand its not all in my head* If I'm ordering food in a restauarant or asking questions about food prep etc I will often just self declare as coeliac - people are aware of that and understand those requests are medical rather than fad diet based. I don't have any problem doing this, I'm not going to claim that and then cheat on dessert for instance and to be honest I expect once the research is complete the two conditions may wind up alongside others as different faces of the same coin. In the meantime I safeguard my health and avoid getting into a detailed conversation about genuine gluten sensitivity versus faux hipster posturing! *apart from the bits which are in my head

I originally had it on my face and scalp. (22 years ago) First biopsy with dermatologist came back as folliculitis. Then when I had a new outbreak on my upper back, she was able to remove a nice clean blister and we got the diagnosis of DH. She started me on Dapsone (100mg/day) and gluten free diet. Now I take 25-50 mg/day. My understanding at the time was that DH was the skin version of Celiac. Did a lot of research on my own. I met Dr. Peter Green at a Gluten free Vendors Fair and he said that a diagnosis of DH IS a diagnosis of Celiac, even if no other symptoms. So I stay gluten-free