| Celiac Disease Is Poorly Diagnosed |
23 March 2008 |
Gluten - the protein with teeth
Gluten is called the protein with teeth for good reason. In Celiacs gluten actually attacks the lining of the intestine causing tissue damage, bloating, flatulence, abdominal cramping and diarrhea. Gluten is found in wheat, rye, barley and oats. The only answer is a gluten-free diet, which brings relief that is immediate and dramatic.
(Could you be gluten-sensitive? Check your symptoms against those for food intolerance: Symptoms Matrix)
About 100,000 Australians have Celiac Disease, but the reality is many don't know about it. Undiagnosed Celiacs (thought to be the majority) suffer their symptoms chronically or long-term. A direct result is that nutrients like iron are not absorbed properly. See Gluten sensitivity
However, the human body is amazing. Even with this continuous stress it still manages to allow us to operate normally. That is until we get sick from a bad bout of flu or other infection.
Then the long term damage may show up. The most common indicator is low iron or anemia. That's why many Celiacs are not diagnosed until later in life. The body's ability to counter the constant assault on the gut lining diminishes with age.
Notoriously difficult to diagnose
Traditionally Celiac Disease is typified by iron deficiency, weight loss, failure to thrive in children, and gastro-intestinal distress: severe flatulence, nausea, chronic diarrhea, bloating and Irritable Bowel Syndrome.
However some undiagnosed Celiacs have chronic symptoms like fatigue, anaemia, osteoporosis, depression and infertility - none of which is especially suggestive of a disorder of the gut (1).
Celiac Disease has now been classified to exist as four different types: typical, atypical, latent and potential.
Research has shown that Celiac Disease is difficult to diagnose because symptoms are not standard. Another indicator is Irritable Bowel Syndrome and is now significantly associated with CD.
Even doctors and health professionals agree that Celiac Disease is poorly diagnosed. There are Celiacs who show no outward symptoms but who test positive (2) using long-accepted blood testing methods.
And there are other Celiacs whose combination of symptoms does not suggest a gastro-intestinal disorder. So they are not screened for CD. For the sufferer and medical practitioner alike CD is tricky to nail down.
Greater awareness leads to better understanding
As with all things, heightened awareness leads to better appreciation. Celiac Disease and its treatment - the Gluten-free diet is increasingly in the media - a good thing for two reasons.
- The disease and its impact on lifestyle are becoming better understood
- Those observing a gluten-free diet are enjoying access to a wider range of foods as manufacturers and retailers become educated.
However the research which forms today's knowledge of CD is not entrenched. Even as recently as 1993 medical opinion on Celiac Disease was not clear cut. The case study below is interesting because the diagnosis eluded doctors for ten years.
Case Study
According to a sufferer published in The Lancet, Celiac Disease is "Tricky to find, hard to treat and impossible to cure" (3). Even with attentive medical care Susanna Lohiniemi's Celiac Disease went undiagnosed for more than a decade.
Her symptoms were flu-like (headache, muscular aches), she was always exhausted, had mild iron deficiency, irregular menstruation, slight hair loss, flatulence and nausea. Her doctors did not suspect CD.
This was despite her mother being treated successfully for dermatitis herpetiformis (an alternative form of Celiac Disease) by having a gluten-free diet.
Her results for the usual blood serum tests were negative so doctors thought her unlikely to be Celiac. Susanna's account goes on:
" . . . for a patient with Celiac Disease to be slightly overweight and in good physical condition wasn't typical, they said. I miscarried twice in one year. It happens, they explained." She was eventually diagnosed via a biopsy ordered by a locum doctor who became curious and reviewed her file. The ensuing treatment of a gluten-free diet brought immediate relief from symptoms (3 weeks) and a whole new life: no longer tired and the headaches disappeared. She went on to have two children via uncomplicated and successful pregnancies.
The question is not: How many undiagnosed Celiacs are out there? But rather:
How many people suffering headaches, nausea, iron deficiency, muscular aches and pains, with a history of infertility or miscarriage have considered the possibility of Celiac Disease?Remember - for great tips and info on Food Intolerance sign up for our weekly newsletter - it's free!
References
- 1. An inappropriate immune response. Sollid, Ludvig M. and Knut E. Lundin: Lancet Volume 358, Supplement 1, 2001.
- 2. Association of adult coeliac disease with Irritable Bowel Syndrome: a case-control study in patients fulfilling ROME II criteria referred to secondary care. Sanders et al. Lancet 2001; Volume 358: 1504 -1508.
- 3. Tricky to find, hard to treat, impossible to cure. Susanna Lohiniemi: Lancet Volume 358, Supplement 1, 2001.
More information
Symptoms Matrix (must register first)
The Tuesday Club.
Author: Deborah Manners B.Sc.(Hons) Dip.Ed. is not a medical or healthcare professional. Ms Manners has multiple food intolerances and presents information from the point of view of the consumer.
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Date modified: 23 March 2008
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