- muscle soreness and stiffness
- tender skin
- bloating and unexplained weight loss/gain
- fatigue/lack of energy
- racing heart (over 100 bpm at rest)
- irritability, sadness and other mood swings
I only stumbled on the link with grains by accident: I was trying to lose weight, and I’d noticed that I tended to retain water after eating bread. So I cut out wheat for a few days to see if it made a difference. Not only did I immediately shed about 2kg, but the symptoms I had been experiencing since the birth of my son suddenly improved. It took a lot longer to extend this link to other grains and pulses, but I eventually did this with the help of some excellent books such as Melissa Diane Smith’s Going Against the Grain.
But still, these books seem focussed on a digestive link with grain-sensitivity, while I believe that my sensitivity is linked to my “true” allergy to grains, pollens and grasses. Since childhood I have suffered a range of sensitivities which mostly manifested as “allergic rhinitis” – sneezing, watery eyes, wheezing chest, streaming nose. I particularly reacted to seasonal pollens and grasses, but also to cigarette smoke, cats, petrol fumes, fresh newsprint, freshly unwrapped plastics and (tragically) red wine. After a night out with my friends at university, drinking in a smoke-filled pub, I felt like I had a heavy cold, and I could barely speak. But these reactions were manageable, and I put up with them when it suited me. I also became a vegetarian at university, and ate a diet based almost entirely on sandwiches, pasta and cheese.
Despite these allergies, I would say that my health was pretty good up until the birth of my second child. I struggled to feel well during my pregnancy, but put this down to almost constant “morning sickness” (which should be called progesterone poisoning), and a massive weight gain due to the fact that eating was the only thing that repressed my nausea. Soon after my son was born I caught a low-grade virus which I couldn’t seem to shake: I remember looking at my baby when he was three months old, and thinking “You have never known me when I wasn’t ill!”. I felt weak and bloated and lethargic for at least a year after the birth, but I assumed that was because I was an older Mum (39) experiencing lack of sleep and the demands of two children for the first time. But as time passed I actually started to feel worse. Some days I needed to sleep in the afternoon, and I couldn’t imagine dancing or swimming or doing anything that required bursts of energy. I was still carrying an extra 10kg or so of weight, and despite trying to eat the way I had before I became pregnant, nothing seemed to shift it.
The most frustrating thing was the unpredictability of the symptoms. Some days I felt quite well, almost “normal”, but on others I was desperately unwell, sometimes in tears, relying on painkillers to ease my sore skin and muscle soreness. I went to my GP and was referred to a consultant rheumatologist, but had to wait two months for an appointment. The doctor said that I would be checked for conditions such as fybromyalgia and rheumatoid arthritis, but also for chronic fatigue syndrome. I looked up chronic fatigue/ME on the internet, and my heart sank: I seemed to have many of the symptoms, and it sounded like a brutal condition, unpredictable and difficult to treat. Only a small percentage of patients ever made a full recovery.
In the meantime, as well as feeling very low about my health at that time, I was just as frustrated about my weight, and the fact that I couldn’t seem to shift the post-baby pounds. I had read that wheat could contribute to bloating, so I stopped eating it for a few days. The effect was instantaneous: I immediately dropped about 2 kg, and I felt my symptoms ease considerably. I rushed back to my doctor to let her know that I had found a connection with wheat, and she offered to have me tested for coeliac disease. I wasn’t surprised when the test came back negative, because although I know that not all coeliacs experience digestive symptoms, coeliac disease is caused by the interaction between gluten proteins and the lining of the stomach/bowel, and I had never had any problems with nausea, digestive pain, bowel movements, or anything else to indicate a problem in that area. All my symptoms were “inflammatory” in nature, like having a bad flu.
So instead I invested in a “York Test” blood screening, thinking that it would pinpoint the exact foods which were causing my problems. I sent off a sample of my blood and waited eagerly for the results. When they finally arrived, they were inexplicable: apparently I had no reaction whatsoever to gluten, or any of the grains or pulses included in the test. However, I was highly reactive to egg whites, and also needed to avoid dairy and tuna! For a few weeks I carefully avoided the whole list – all grains and pulses, dairy and eggs, nearly driving my family mad and ruining a holiday in France in the process – until I decided that I should focus on how I felt, and leave the more theoretical sensitivities for another time!
Finally, the time came to see the consultant rheumatologist. By this time I had been avoiding wheat for several weeks, and felt considerably better. I explained this to him, expecting a sceptical reaction. Instead, he was sympathetic. He said that he saw innumerable people with unexplained muscle soreness and stiffness, and many simply lived with the symptoms for the whole of their lives. If I had found something that helped, then I should stick with it. The only general advice he could give me was to supplement vitamin D, as it helped some people. But based on my current symptoms, he wasn’t able to diagnose me with anything specific, certainly nothing recognised by conventional medicine.
Over the next few months I kept a food diary, and searched for patterns in my reactions. I also tried to research what was going on, but it was difficult, as most books were focussed on gluten, rather than grains generally. Melissa Diane Smith’s Going Against the Grain was a notable exception, and helped me to consider my reaction to pulses, which I wouldn’t have otherwise included.
I also kept “rebelling” against the situation, treating my situation like a weight loss diet rather than an illness. On my daughter’s birthday I decided to have a chunk of cake, because “it wouldn’t hurt to have one slice”. It took me three days to recover! It was like I had to constantly remind myself that the reaction was real, and not some food fad, with every reminder taking the form of several days of feeling sick and disabled. And the longer I went without my trigger foods, the bigger my reaction when I ate them. In a way, learning to choose my health over other priorities (short-term pleasure, politeness, not wanting to stand out) has been the biggest challenge of all.
Today, I stick to the foods I can eat 95% of the time, and I feel well about 90% of the time. Why the gap? That’s part of the purpose of this blog, to explore the unexplored parts of this illness, and put the final pieces of the puzzle into place.