My Story

I know this is a new blog, its a new blog because I’m just recently diagnosed with celiac. At the beginning I thought I was far more prepared to handle this disease, than I am, for a few reasons 1) I know people with the disease, so I leaned some gluten-free recipes and knew all about the biochemistry and consequences of the disease long before I found out about my condition 2) I had been on a gluten-free diet for 4 months about 5 years ago, recommended by my naturopath to clear out my system — I figured out what products contained gluten really fast, and never really went back to eating huge quantities of bread (although I still enjoyed it) 3) I strongly suspected I had the disease for months, but nobody would listen!

I’ve suspected that I might be a celiac myself since last spring when I developed a rash. I thought ‘hey, this doesn’t look like eczema and after searching the internet and finding a lovely photo of dermatitis herpetiformis said the following: “Aw, Crap.” At the time I was just wrapping up my MSc. so I went to the University’s Health Services. The doctor I saw didn’t like it when students “self-diagnosed” and told me it was eczema without actually looking carefully at the water blisters. I don’t consider research on the internet, followed a visit to the doctor for an actual diagnoses to be self-diagnoses. Its only self-diagnosis if I started telling everyone I had celiac without proof.

Anyway, I graduated and because of the doctor shortage in the Kitchener-Waterloo area, I ended up with a family doctor near Toronto. This guy was recommended to me by a friend who had been seeing him since she was a child. Let me tell you about this doctor: he must have reached the age of retirement about 25 years ago. And along with his old-age came very out of date doctoring practises and the inability to actually listen to patients. He had that “I’m a doctor, what do you know?” attitude. Again, I was told my rash was eczema.

Finally I convinced my partner, who grew up in the KW area to beg and plead with his doctor to let me be his patient and tell him about how horrible my current family doctor was, and how I had to drive 70 km (uh… I guess that is about 45 mi? I’m just roughly guessing) to see a doctor. Being a nice guy that doctor let me see him.

It is now October 2007. The new doctor, somebody who actually listens and LOOKS CLOSELY at a damn rash said something along the lines of “Oh snap! I’ve never seen a rash like this one before!” and sent me to a dermatologist.

Because of the doctor shortage, it wasn’t until the beginning of December 2007 when I saw a dermatologist who said “Oh yeah, that looks like dermatitis herpetiformis, lets do some blood work and a biopsy”

So I had the blood test, the biopsy and then immediately started a gluten-free diet. I hadn’t gotten the results back yet but I just knew that is what it had to be. From my experience with a gluten-free diet in the past, I knew I simply felt better (and lost A LOT of weight) when I was gluten-free.

So on Monday, January 14 2008, more than a year after the rash first appeared and I first started to complain to doctors, I finally got a positive confirmation for celiac. Nobody would believe me because I didn’t have the ‘typical’ celiac symptoms. So, none of the following things spiked on these doctors radars:

  1. I had chronic skin condition with a characteristic pattern of lesions, combined with intense itching and burning sensations and tiny blisters in the middle.
  2. The rash was symmetrically distributed and affected the ‘common’ areas (the elbows, knees, back of the neck, scalp, the upper back, and the buttocks).
  3. Most people with DH have little or no bowel complaints, and if they do they are atypical (not diarrhoea)
  4. I had chronic and unexplained bloatedness combined with severe and chronic constipation
  5. I had been seeing a neurologist for 2 and a half year for unexplained tingling sensations down the left side of my body. Three MRIs, an ultrasound of my heart, an electrocardiogram, a holter device, an encephalogram, and very expensive tests for thyroid problems, genetic abnormalities, lupus (and if you watch House MD you’ll know that its never lupus — ha ha, little joke, I know it could have been lupus and that was scary), metabolite and other chemical imbalances for the possibility of seizures came back 100 normal. She couldn’t find anything wrong with me! Celiac disease explains the tingliness. Damn it!

Now, I’m not blaming my current doctor for not knowing about DH — he did admit to never seeing a rash quite like the one I had before and did send me to the dermatologist. Which is what I expect! Family doctors cannot possibly know the details about every disease, but they can refer people to people who specialize. I saw my family doctor again yesterday and he said ‘you are now, officially my only patient with celiac. I’ve gotta do some reading, here, let me send you to a dietitian. Again, this is what I expect a family doctor to do! When I mentioned that 1in 100 or 133 people (whatever the current stat actually is) have the disease and he has 2000 patients he said: “I can’t do anything until somebody comes in and complains about symptoms. If they don’t tell me, I can’t do anything for them”. Its so true. Although I have a feeling he’s going to be re-evaluating some of his IBD patients.

The other two doctors – completely useless. And the neurologist really has to learn to look at something simple like a bread allergy before she sends somebody for tests not covered by the provincial health plan.

Now, at the beginning of this post I mentioned that (and I quote): “I thought I was far more prepared to handle this disease, than I am”. Its true. The reality that I can never eat a Ruben sandwich again struck home last night after my fifth attempt at making gluten-free bread. I can’t stand gluten-free bread. I love rye bread. You can keep your white bread, but a nice pumpernickel rye? Damn. I’m going to try another recipe today. Hopefully I won’t be throwing out that loaf as well. And yes, I am using tested recipes exactly as they are stated in the cookbooks. I just don’t like what the final products tastes like! I suppose I’m picky. Anyway, I’m going to go sulk for awhile while I flip through the recipe books one more time.

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