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I am a New Zealand registered nurse and nutritionist (Grad Cert Sci: nutrition, Massey Univ). I am a Certified Zone Instructor, and have worked teaching Zone diet principles to hundreds of clients over the last 10 years. More recently after finding that eating Paleo food choices was the "icing on the cake" health wise, I have become a Paleo enthusiast and teacher. Follow me on twitter @juliannejtaylor

Non celiac gluten sensitivity – a case study

Non celiac gluten sensitivity is becoming a recognised health condition distinct from celiac disease, but in my observation is not yet recognised by many doctors. This is perhaps because much of the clinical literature is fairly recent.

Many people suffer a range of unexplained health problems, often similar to those suffered by celiac patients, for example gut issues, fatigue, foggy brain, aches and pains, joint inflammation, skin rashes, and associated auto-immune diseases, yet blood tests are negative for celiac disease. Many discover they are gluten sensitive by chance or through diet experimentation.

For example they may switch to a raw/ raw vegan diet (you can’t eat raw wheat), a blood type diet (O in particular),strict Zone diet, low carb diet or a paleo diet, and get resolution of health problems.

This case study was published las year in the British Medical Journal, it is typical of the experiences of many of those who discover they are gluten sensitive. Here are some excerpts, this was written by the patient.

Non-coeliac gluten sensitivity, A patient’s journey. (full text)

Abstract
This patient reflects on his 20 years of unexplained ill-health with multiple symptoms before a chance conversation in an internet chat room led to his initial self diagnosis

“The summer of 1991 was when my problems really began. I had had a severe bout of sickness and diarrhoea on holiday in Corfu. I recovered from the gut infection after I came back from holiday, but my general health continued to deteriorate over the next six to 12 months. Then followed two decades of unexplained ill health with multiple symptoms including weakness, exhaustion, bloating, nausea, indigestion, diarrhoea, skin rashes, ingrown hairs,
cracked skin, joint and muscle pain, anal leakage of undigested fat, oscillating body weight, numbness in my feet and hands, muscle spasms in my legs (especially at night), mood swings, mild depression, and disturbed sleep patterns. These symptoms fluctuated day to day, but the worst by far was a constant intense bladder pain that was eventually diagnosed as incurable and untreatable interstitial cystitis.

Over the next 20 years, I repeatedly told medical professionals that my bladder pain was always much worse when my bowel symptoms were particularly bad and that the two must be linked. Most importantly, I felt strongly that it was caused by something I was eating. In particular, I had noticed that when I had either starved myself for 24 hours or undergone a bowel cleanse before a medical procedure my symptoms seemed to disappear or were
much reduced.
Medical professionals seemed mystified or dismissive and had no explanation. I well remember being told by one consultant that there was nothing that could link bowel symptoms to bladder symptoms or any other symptom I had.

Eventually, after about a decade, I gave up seeking a cure or diagnosis of my illness. … However, in Christmas 2006 I had a severe bout of biliary colic and eventually had my gall bladder removed (yet another condition
I now know may be linked to gluten sensitivity), but my health continued to deteriorate after the operation.

By summer 2008, I was unable to walk up a hill and was gradually becoming house bound. The internet became an important link to the outside world, and I began a desperate search for some clue as to what was wrong with me. A chance
conversation in a chat room forum with someone who had had exactly my symptoms and the suggestion that I try excluding gluten (and lactose) from my diet was how I eventually reached my own initial self diagnosis. The results were dramatic. Within a week of excluding gluten and lactose from my diet, all my symptoms had dramatically improved in just the same way as when I previously starved myself. I wasn’t starving myself now though, I was just not eating gluten and lactose. I felt better and had more energy than I had in decades.

I went to see the consultant who had carried out the gall bladder operation and excitedly told him about my discovery that gluten and lactose were the source of all my health problems and how dramatic had been the results of excluding them from my diet even after a few weeks. He seemed quite uninterested but told me to carry on with the gluten and lactose exclusion diet “if you find it is working for you.”

After experimenting with my diet, I have found that I react severely to even small traces of both gluten and lactose. Accidental exposure to either of them brings all my symptoms back in a matter of hours, and the symptoms take several days
to subside again. I can almost always identify the source of the accidental exposure, and it happens very rarely now as my experience and knowledge of my condition and food ingredients
have increased.

Despite the success with my exclusion diet, it wasn’t until early 2012 that I finally got a proper diagnosis of my condition. After a chance internet search, I found medical research papers on gluten sensitivity and intolerance written by Dr Kamran Rostami. I have a degree in biochemistry, and those papers were a revelation…..

As a result of my conversations with Dr Rostami, I strongly suspect that my problems with gluten really began long before 1991 and that the gut infection I had on holiday was simply a trigger that made my gut more permeable to gluten (and lactose) and eventually caused the emergence of more severe symptoms. Looking back, it is clear to me that I exhibited early signs of gluten intolerance and sensitivity in my childhood. I weighed under 6 stone (38 kg) when I was 12 years old. In 1991 I weighed about 11 st 7 lb (73 kg), but after my symptoms started, my weight fell to under 11 st (70 kg) and I felt very weak. Then my weight ballooned up to 13 st 7 lb (86 kg) after my gall bladder was removed in 2008. Finally, after I had excluded gluten, it fell to 11 st 4 lb over a few months, where it remains today. To be honest, the most important issue with my weight is that it can easily rise 4-7 lb (2-3 kg) overnight if I accidentally eat gluten, as I fill up with fluid when my immune system goes into overdrive.

I had mild depression throughout my teenage years, was small and underweight, and went through puberty later than the other boys in my class at school. I also used to gorge on bread, cakes, and biscuits, but I was always thin despite the thousands of calories I was eating. I have read that it is common for people to be addicted to the foodstuff that does them most harm. That was certainly true in my case. Paradoxically, as the son of a farmer and growing up on a farm, I used to help my father grow wheat, and he was paid a higher price by merchants if he could grow wheat with high levels of gluten for bread and biscuit making. Like my father, I used to chew the wheat grains at harvest time to check for hardness as we decided when to harvest the crop. Every year I got itchy bleeding rashes on my ankles and elbows that went away as soon as harvest finished. Now I know why.”

 

If you have a raft of unexplained health problems, I recommend you try a paleo or gluten free diet. If you do – prior to starting I suggest you do get a blood test to see for celiac disease.

Non Celiac Gluten sensitivity has a growing body of research and articles, this from a PubMed search:

http://www.ncbi.nlm.nih.gov/pubmed/?term=Non-celiac+gluten+sensitivity

 

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2 Responses to “Non celiac gluten sensitivity – a case study”

  1. Honora #

    EnteroLab.com can do HLA-DQ molecular gene analysis to show whether one has the alleles for coeliac or gluten sensitivity. This is actually done by the American Red Cross and involves mailing over a ‘cotton-bud’ swab they send over to you which you swipe around the inside of your cheek. EnteroLab interpret the results though.

    July 3, 2013 at 8:58 pm Reply
  2. Honora #

    I was talking to a gastroenterologist last week about non celiac gluten sensitivity. He says what it is is a FODMAP type thing where the body is reacting to fructans in the wheat i.e. the saccharide polymers of fructose (fructans) rather than the wheat protein. I’m surmising it may be a gut biome thing if this is the case. He didn’t seem to know about the specific typing of HLA DQ2 and DQ8 typing that I detailed above courtesy of enterolab.com. It sounded as though he’d heard of Dr Kenneth Fine and wasn’t dismissive as these guys often so usually are. I told him my results indicated I had the typing for NCGS inherited from each parent.

    February 17, 2014 at 10:52 pm Reply

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