I was wheat/rye free in 1990, then returned to wheat on and off until 2001, then was dx’d as gluten intolerant due to undigested gluten related proteins in my urine, then in 2011 had an IgA coeliac test which was negative and a bowel biopsy that was negative for coeliac and an IgE blood test that showed allergy to wheat. I went wheat free in 2010.

I developed progressive peripheral polyneuropathy since 2010 and especially since chemo in 2011. Peripheral neuropathy effects sensory, autonomic and motor nerves. My sensory neuropathies started with numb and tingling hands and feet, then incredibly painful stiff feet, then stiff and then clawed hands, then electric like stabbing in my toes, then surging pain in my arms, shooting pains up the back of my scalp then very sore to touch, burning mouth syndrome, then numbness and tingling on one side of my face and finally sore, burning, stinging skin in my armpit that made even the sheet feet painful.

My autonomic neuropathies began with central apnea and hypoventilation which culminated in sleep studies and a VPAP machine that takes over my breathing each night. I’d had episodes of orthostatic hypotension, pre-syncope, tachycardia, arrhythmia, muscle spasms, blurred vision, bowel issues since my teens but none of those worried me too much until chemo. Then it went wildly out of control adding urinary retention, gastroparesis, hypo/hyperthermia to the mix. After chemo it got fairly managed but the hypoventilation and central apnea remained.

My motor neuropathies started around 2010 with one leg or the other collapsing when I tried to get up from sitting on the floor. I laughed it off. But by 2012 my legs kept buckling, first now and then, then by 2013 it was common if I’d been sitting for 30-60 minutes that it would be hard to walk when I stood. I began to get buzzing up and down my legs and then began to fall up the steps. When I got back up and fell again, I knew this wasn’t ‘in my head’. I found I couldn’t get up off the floor like I used to, that I had to use my hands much more, that I struggled to climb up on the benchtop as I once could so easily, that when coming up steps with something in my arms, I struggled to raise my feet. Then one day I had been standing at the computer (I have a ‘standing desk’ due to lumber spinal stenosis) and went to go to the living room. My legs went tingly and like jelly and I could barely walk. Then sensation surged back into them and they were like lead and a heaviness I have never felt in my life. I made it to the living room and then I learned what motor neuropathy was.

We explored all the reasons I might have this, why it was progressing, why it seemed to respond to a degree when I took Prednisolone or NSAIDs or very high levels of omega 3s as an antiinflammatory.

One conclusion was collagen degeneration (in a context of estrogen blockers due to breast cancer since Dec 2011) associated with Ehlers Danlos Syndrome causing exposed peripheral nerves. Another was 7 months of Haemophilus I’d had in 2009-2010, the effects of chemo, the Herpes Simplex 1 virus which may have then further damaged peripheral nerves. Since Dec my peripheral neuropathy worsened and I developed a ‘virus’ with nausea, headache, malaise, fatigue, vertigo. I wondered if my cancer was back, especially when peripheral neuropathy now effected my armpit where I’d had a sentinel node out.

I’d always had constipation, all my life. But now my gut was getting more gassy but I figured that was part of the autonomic neuropathy. I was having some burning sensations when going to the toilet. I told myself I must have eaten something wrong without knowing. I kept eating oats, barley, rye, spelt, more and more than I ever did. I got more run down and when it came to gas it was sulphur city, as if I’d eaten something bad. But I couldn’t have. I hadn’t had anything I was allergic to. Then Chris kept saying “what about coeliac?” I insisted I didn’t have coeliac. Couldn’t have it. I’d been tested for it, given the all clear. But was that reliable?

30% of relatives on my paternal grandmother’s side have coeliac or gluten intolerance. I’m IgA deficient. The test for coeliac is an IgA blood test and those with IgA deficiency as standard have false negatives on this test. The bowel biopsy should be done when the person is still having gluten. When I had the biopsy I had been off gluten for almost ten years. They found no damage. Of course, having been off gluten for 10 years why should they. But people believe what they want to believe, what’s convenient to believe, what’s more delicious to believe… I went back onto gluten.

IgA deficiency is 10-15 times higher incidence in people with coeliac even though only 3-5% of people with coeliac have IgA deficiency. Like diabetes, untreated coeliac is one of the most common causes of progressive peripheral neuropathy. Guess who is returning to gluten free?

I have IgE allergies to wheat, soy, peanut and an idiopathic allergy to casein, and am salicylate intolerant and immune deficient so can’t fight Candida so that also means no/low sugar. So I despair at dietary restrictions and am not looking forward to returning to being GF. But its better than being sick, and progressively so, and its better than joining my relatives in an early death from bowel cancer. And Chris and I are good exploratory cooks. So we’ll embrace it again as our adventure.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.