The Gluten Challenge Fiasco

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Rejected stamp on wheat

Gluten-free eating is sometimes seen as a fad.

But if you have celiac disease or what’s now termed non-celiac gluten sensitivity, gluten-free eating is an absolute necessity.

Both conditions involve unpleasant and sometimes very dangerous reactions to gluten, a protein that occurs in wheat and several other grains. In sensitive individuals gluten can affect and damage the gut, the brain, the skin, and many other organs. It can cause autoimmune diseases you never want to hear about.

The Gluten Summit is Now On

As I write a global GLUTEN SUMMIT is taking place. You can listen to experts in the field from around the world giving the latest advice on how to manage a gluten-free diet, the ramifications of gluten sensitivity, and details of the most up-to-date research.

One of the summit’s aims is to disseminate information to the medical profession because medical practice tends to be years, and sometimes decades, behind the research.

It also aims to help the huge numbers of people who are affected by gluten-related diseases. Celiac disease is estimated to affect between 1 in 70 to 1 in 100 persons, of which only about 1 in 8 are diagnosed. It has risen five-fold since the 1970s. Non-celiac gluten sensitivity is a newly recognised condition that affects a much larger proportion of the population and on which little research has been done.

Testing for Gluten Sensitivity

The tests most often used for gluten sensitivity and celiac disease are outdated and can be inaccurate. This explains why so many people are slipping through the cracks. Bu new tests are being developed and it’s now possible to test for a broader spectrum of gluten reactions.

The traditional method to test for celiac is a blood test to see if there are raised antibody levels to parts of the gluten protein. If they were, an internal examination and biopsies of the intestinal lining (to check for damage) used to be the gold standard for confirming diagnosis.

The Fly in the Ointment

BUT the test results will be inaccurate unless you’re eating gluten.

This is a major problem because many people self-diagnose a gluten issue and stop eating gluten without realising they might have a serious disease.

Then they might be tested and show normal antibody levels, and no intestinal damage. Which leaves the question open, and the possibility of being told that it’s okay to keep eating gluten.

The Gluten Challenge – Don’t Do It!

To remedy this problem doctors prescribe a gluten challenge – eating a gluten-rich diet for a period of 3, 6, or 8 weeks, or even 3 months (the recommendations differ because it’s still not certain what period of time is sufficient for an accurate test result).

THIS IS DANGEROUS.

In fact the recommendations are beginning to change because of the potential damage that can be done to the patient’s health.

My Personal Gluten Challenge Fiasco

In my case, I worked out incidentally that gluten gave me stomach aches. I was on a mostly gluten-free diet for a year before mentioning it to my doctor. It didn’t occur to me that I might have celiac disease – something I had heard of but thought was a rare condition. And when my doctor insisted I do a gluten challenge, I was alarmed. I said, but it will make me sick! I was told it was very, very important to be tested for celiac and this was the only way to do it – eat the equivalent of four slices of wheat bread daily for three weeks.

I decided to get it over with.

Six days later, after six days of stomach pain, extraordinary abdominal distension, terrible fatigue and finally, nausea, I bailed out. I felt as if I was poisoning myself.

Seven weeks later, I’m still not recovered. I developed severely painful gastritis and oesophagitis (inflammation of the lining – like gravel rash, bathed in acid!). I’ve had multiple doctors’ appointments, a gastroscopy, two ambulance call-outs, two emergency hospital visits, weeks of sleeping propped up because I can’t lie down, and constant stomach pain and queasiness. It’s cost me a bomb. I have a shelf of stomach-oriented medicines and supplements like you would not believe. None of which were necessary before the so-called challenge.

My test results were negative for celiac, as expected (a 6-day gluten challenge is too short) but my specialist says it’s an academic question – the issue is gluten and I must stay off it, celiac or non-celiac.

The moral of the story is – if you think you have gluten-related issues, get the tests done before you go gluten-free. Be very, very careful about any gluten challenge. And check out theglutensummit.com for the latest info.

Merridy Pugh

Merridy Pugh is an editor and writer based in Hobart. She loves books, sun and tropical fish.

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