My stupid experiment

I did something stupid and risky. Very stupid and very risky and sadly very necessary and this is my confession about what I did. But before I tell you about that let me first tell you about my son.

Liam is 8 and isn’t well. He has a diagnosis of autism, but this doesn’t adequately describe his symptoms. Not only does share the typical characteristics of someone with ASD, but he also has crippling anxiety, sensory issues, balance and coordination problems, terrible life-changing amnesia to the extent that he can’t remember family members, suffers with almost zero concentration, has frequent headaches and is often unwell with a mild fever but never develops any actual illness. Last year he regressed academically and is now behind where he was when he was 7. Most worrying though perhaps is that he now appears to be having brief absent seizures.

As far as I can see he is suffering with a cognitive decline due to some kind of brain injury, but I’ve been told time and again that all these things are ‘often seen in autistic children’ and that I need to learn ‘to accept the diagnosis’ as if I’m the problem and refusing to accept he’s got a serious brain illness is somehow making it worse! I keep telling everyone, doctors, psychologists, teachers, the local education authority, the occupational therapist, the speech and language therapist, and everyone involved in his care that he has a gluten related disorder. I’m practically screaming it, and with good reason, because when I was severely psychotic and diagnosed with Bipolar 1 and bordering on schizoaffective disorder and told I needed electroshock therapy, my psychiatrist kept stating that the cognitive decline, migraine and other symptoms were somehow ok if I ‘accepted the diagnosis’ and that they were ‘frequently seen with bipolar’ and that maybe I should see an actual doctor and ‘get some headache pills’. But these doctors and specialists are focussed on providing an allopathic solution to shape my son into something that might be productive one day, but this worry about what a child will become tomorrow is at the expense that we forget that he is someone today.

You see there’s truth in the saying ‘it is easier to build strong children than to repair broken men’, because I didn’t have Bipolar 1, or schizoaffective disorder. I didn’t need meds or electroshock therapy. I needed AIP and the strictest gluten free diet imaginable because I have gluten encephalopathy, an autoimmune disease where anti-gliadin antibodies were destroying my brain tissue. If I’d eaten a gluten free diet as a child I’d never have got sick and never suffered years of hell as a result.

I have learned from my doctor, the incredible Professor Marios Hadjivassiliou, that I am more sensitive to gluten than someone with celiac disease. That just a single pinhead of the stuff can trigger a relapse, and that a gluten free diet alone sometimes doesn’t help because its almost impossible to avoid gluten as cross-contamination is so common and many people with schizophrenia never fully recover precisely for this reason. It’s only in studies where patients in locked wards where gluten has been removed under strictly controlled conditions do we witness a miraculous recovery.

This is why AIP helped me so much, because it eliminated gluten from my diet to an extreme not possible when eating processed crap that contains gluten in amounts at under 12ppm. This amount is safe for celiac but not for people like me. I also have learned through experimentation that I will describe below that if my body is inflamed with a crappy diet of other grains, dairy and sugar that my reaction to gluten is considerably worse.

Professor Hadjivassiliou believes my son may have the same condition as me, and it’s a no brainer as far as I can see – it’s hereditary, his symptoms correlate, evidence exists showing that some cases of autism respond well to a gluten free diet and we’ve witnessed a miraculous transformation in his father (me) on a gluten free diet. The problem is my wife. She is half-hearted about putting Liam on a gluten free diet because he doesn’t like it, it’s hard to do and it means she can’t take him out for sausage and chips or buy him a cake to placate him when he’s having a bad day. She also doesn’t fully believe that gluten is my only issue and that perhaps there’s something else going on which is why I must eat this ‘crazy diet’ called AIP. The best we’ve therefore managed is a ‘gluten reduced’ diet which he followed for 3 months. It did net some positive results in that he stopped getting ill as much, his balance improved a lot and there were no seizures and no headaches. You’d think this unbelievable result would have convinced her and the doctors and therapists, but because he was still ‘autistic’ and ridiculous government backed ‘scientific studies’ (in quotes because they clearly are not scientific) showed that that gluten free diets never work and that NHS guidelines actually prohibit doctors from suggesting it as a treatment, I found my argument to put him on a completely gluten free diet falling on deaf ears.

It was as if my recovery was a one-off, and that no one else, even someone with 50% of my DNA, could have the same illness or share a recovery like mine. My wife wants to wait for blood tests, but the only test my GP will offer is to test for celiac which he doesn’t have and neither do I and I have always tested negative for it. Professor Hadjivassiliou has also said the gold standard for testing is how a patient responds to a long-term gluten free diet as the blood tests for the neurological symptoms are still being developed and often inaccurate. I felt like I had no options.

So, this leads me onto my stupid and risky experiment. In the face of extreme opposition to the notion that my son has gluten encephalopathy I decided I needed to prove to my wife and everyone else that the only issue I have is with gluten and therefore he likely does too, and that he must follow a healthy and strictly gluten free diet to help him heal. You may have seen a previous post about my trip to New York, a fantastic trip and my first overseas travel for many years. It was while I was there I concocted a plan to demonstrate that my main issue is with gluten and nothing else. New York has several dedicated gluten free restaurants, so I made the decision to temporarily suspend my 18 months on AIP and transition to a gluten-free only diet, albeit a healthy one that didn’t contain any foods ‘safe for celiac’ that still contained trace amounts of gluten. I continued this diet for 4 weeks once I got home. Three things happened on this diet:

  • I didn’t develop any brain symptoms at all.
  • My other autoimmune diseases started to flare up, psoriasis and joint pain in particular – the zonulin and leaky gut pathology at work
  • I got fat very fast!

But then things turned sour. In August I had to go back to the US for a conference where I got stuck in conference centre and completely reliant on the hotel catering for a week. On day three of the conference I mentioned to a waiter as normal that I required a strictly gluten free diet and he explained that he could bring a salad without the cheese…

It turns out that some of the staff thought gluten came from cows and I was therefore being contaminated pretty much daily.

For the next three weeks I had frequent migraine, brain fog, hallucinations, sleep disturbances, depression, elevated moods, concentration issues, extreme fatigue and I felt generally very unwell. I’m of course following full AIP again and I’m recovering fast, although I suspect it will take 6 months to bounce back to where I was before I started this whole stupid experiment. However, there are two positives to take away from this:

Firstly, is that Prof Hadjivassiliou was fascinated to learn that my symptoms when exposed to gluten were considerably worse when I was eating a standard diet than the few accidental exposures I had when on AIP. It explains why AIP helped me recover so much quicker than other patients and perhaps it might form part of a treatment plan for others in the future.

Secondly, it convinced my wife and his school that Liam must go on the strictest gluten free diet possible and perhaps even transition onto AIP in the future! My wife saw what this experiment did to me and finally she believes it. So, on 25 August Liam ate his last gluten and hasn’t been exposed to even a breadcrumb since. That was almost four weeks ago and today we met his school teacher today for a progress report. He’s learned more in the past two weeks than he did in the last 12 months! He seems brighter and happier; his balance is better, he doesn’t look ill and there have been no seizures or headaches. As a result, they’ve agreed to ban gluten from his classroom and will let me send in my special homemade Instant Pot vegetable sauces for him to have at lunch!

Yes, it’s early days but finally I have convinced the right people to undertake this gluten free diet for him as a long-term proposition. His autism may remain, it’s developmental after all, and we may only see changes over many years of adherence to this new lifestyle, but I am convinced he will see drastic improvements in his other symptoms if we avoid anything that can trigger anti-gliadin antibodies. Perhaps when he’s older he’ll choose to follow AIP, but for now this is the best start I can manage. I put myself through a risky and stupid experiment, but I believe in Liam as I know he’s not a typical child with autism. Children live up to what you believe of them and I believe he has great potential if he can just find happiness in good health.

And before you judge me for my stupid and risky experiment please consider what the former Indian president and freedom fighter A.P.J. Abdul Kalam once said: “Let us sacrifice our today so that our children can have a better tomorrow.”

I’d do it again in a heartbeat.