Thursday, November 29, 2012

Celiac or Gluten Sensitivity?

This morning I woke up a few minutes early and hopped on my laptop from the warm comfort of my extra blanketted bed while waiting for son to wake up.  I decided to check out the Canadian Celiac Associations website.  I know, not likely a common destination at such and early hour.  I was impressed.  There is some great information on there. Everything from info about cross contamination, what to eat and what not to eat, defining celiac disease and gluten sensitivity, recipes, and locating local support groups.  The division between gluten sensitivity and celiac caught my eye and got me thinking.   

  Image Source:

"Celiac disease is a medical condition in which the absorptive surface of the small intestine is damaged by a substance called gluten. This results in an inability of the body to absorb nutrients: protein, fat, carbohydrates, vitamins and minerals, which are necessary for good health.
Although statistics are not readily available, it is estimated that 1 in 133 persons in Canada are affected by celiac disease.
A wide range of symptoms may be present. Symptoms may appear together or singularly in children or adults. In general, the symptoms of untreated celiac disease indicate the presence of malabsorption due to the damaged small intestine.
Gluten is a protein found in wheat, rye, triticale, barley. In the case of wheat, gliadin has been isolated as the toxic fraction. It is the gluten in the flour that helps bread and other baked goods bind and prevents crumbling. This feature has made gluten widely used in the production of many processed and packaged foods.
At present there is no cure, but celiac disease is readily treated by following the gluten-free diet."

"Gluten sensitivity is a term that is applied interchangeably with intolerance. In one sense, and individual who has celiac disease is actually gluten "sensitive". However, the term should be used to describe patients who can get a variety of symptoms when they eat gluten and feel better on a gluten-free diet but do not have celiac disease.
It is best to refer this condition as “non-celiac gluten sensitivity”. There is no mediation by IgE and TTG antibody is not present. The biopsy is normal and there is no damage to the intestine.
Common symptoms of gluten sensitivity include abdominal pain similar to irritable bowel syndrome, fatigue, headaches and paresthesia (tingling of the extremities). There is also a possibility that a subgroup of patients with psychiatric disorders like schizophrenia might be affected by gluten sensitivity.
The phenomenon of gluten sensitivity is being researched. The prevalence of this condition is not well known as there is no diagnostic test available and individuals often diagnose themselves. It is also not clear if this is a permanent problem or whether some may outgrow this over time."

While very similar in nature, they have been defined as separate conditions.  If you've been following my blog you will know that I have never been medically diagnosed with Celiac disease.  I went off gluten as a result of someone's advice to see how it made me feel, and I have never looked back.  I hesitated at first to call myself a celiac sufferer, but soon realized that nobody takes it seriously unless it has a name - and I needed people to take this seriously. Knowing that I would need to reintroduce gluten to my diet for several weeks (6 I believe) to get an accurate result from tests, I have decided that the agony and disfunction it would cause me is not worth it to have the diagosis for something I feel I already know.  But I wondered, when reading these two definitions above, if I had stepped on anybody's toes and participated in a faux-pas by indicating I have celiac without ever having a test to confirm it. To be fair to myself, I have read through each definition carefully and still feel that I have celiac disease, but nothing could possibly make it worth it for me to ingest another morsel of gluten in my life.

If I could go back in time, I would have the test before going off gluten.  That is the one word of adice I would give for someone contemplating the possibility of having celiac disease or gluten sensitivity.  Because the thought of having the test now after becoming gluten free and feeling the positive results to my health is like torture, and yet I'd love to know for sure.  

So, I offer my apology to anyone I might offend by indicating I have celiac without having the medical documentation to support it. 

1 comment:

Anonymous said...

From frequenting Celiac blogs, I know that people have gone through years of suffering, and REPEATED testing, only to find out down the road that in fact, they do have Celiac, when they were told they didn't. The blood test has been documented as having a poor efficacy rate. When my son't ped. insisted we pay for the blood test, she also was upfront about how ineffective the test was. She suggested that he have an endoscopy done at a later date. Of course, this is not very effective either.
I think that there is more to this disorder than meets the eye, and this includes testing. Although I have read that the gene testing is most effective.
Do not apologise. If someone wants to wear their diagnosis like a badge of honour - they are welcome to it. The fact that you don't have that certificate, should never diminish the physical symptoms experienced. In my opinion, positive test results or not, we are all in the same boat, and I doubt anybody would feel that you stepped on toes.