As always, I need to start this post with it’s not cancer! Although I never thought it was (this time), so I was a bit taken aback by this one. I’m also finding it interesting to observe my reactions – both emotionally and physically.
Several years ago (well before cancer) I noticed that I was getting blisters on my hands. These blisters would come up from inside – they were not pressure blisters. My family doc in Ottawa told me they were just pressure blisters, I knew they were not. At one point, after Scott had moved to California, I came to associate the blisters with eating kale. Interestingly, I have no idea now if they are actually kale related … so maybe I can eat kale? I’ll have to try it out again.
My dermatologists (plural, cause I see more than one) recommended that when I have active blisters, I should come in and have one of them biopsied. After several attempts – usually the blisters would pop or go away before I could manage an appointment – I managed to both have blisters and have a dermatologist appointment. My dermatologist took one look, and said what he thought it was, gave me some meds to treat it, but we also decided to do a biopsy. I wanted to be certain what I was dealing with.
That was almost two weeks ago. The first sample came back negative. Then the full biopsy came back, again negative for what they thought, but instead it came back with “The histologic findings raise the possibility of an autoimmune bullous disease, including dermatitis herpetiformis or linear IgA bullous dermatosis.” Fortunately, I didn’t Google any of that. The dermatologist phoned me and talked to me before releasing the test results so I knew what it meant. He commented that it wasn’t what he thought, but that it did show signs of a possible gluten allergy. My response involved a four letter word that shouldn’t be repeated in public. You see, my father has celiac disease. So I have an idea what it means.
The next step was to do a blood test. This one came back even more certain “This specimen was positive for IgA antibody to tissue transglutaminase (TTG) at a high level. Anti-TTG is a specific marker of celiac disease and this result makes this diagnosis very likely.” According to the lab test website (https://labtestsonline.org/understanding/analytes/celiac-disease/tab/test/), a positive test is presumptive of celiac disease. I was hesitant to believe the blood test, as my many year old research indicated that it is diagnosed with a biopsy of the small intestine. It turns out this latest blood test was only added to the protocol in 2013 – so my older research isn’t relevant. You still need to do the biopsy to have a definitive diagnosis. It turns out that the current blood test, although not a definitive diagnosis, is a pretty clear indicator (if positive – the problem with it is the high level of false negative). The Mayo Clinic has a nice image that details the Steps for Diagnosis Celiac Disease. You’ll note that my next step is a biopsy.
I did, however, read that if I have dermatitis herpetiformis (these would be the blisters on my hands, and possibly the ones on my elbows), then a skin biopsy can be used as a diagnostic measure. If I’m reading things right, this might mean that I can be diagnosed with a skin biopsy rather then needing the small intestine one.
Now I am in wait mode. I have been referred to a gastroenterologist (GI doc). I’ve been looking various things up on the Internet. The more I read the angrier I get. I guess I’ve moved through the initial phase of denial (that was me after the first test result, until I received the second test result).
Unlike cancer, this process does not appear to move quickly. At the moment, the soonest appointment I can get with a celiac specialist is mid-October – but I’m hoping to find a way to move that up a bit. I need to get a better grasp on how this might affect the hormone therapy that I need in order to reduce my risk of breast cancer recurrence.
If it ain’t one thing, it’s another …
But I’m trying really hard to be strong and healthy … crossing my fingers that removing gluten from my diet makes me stronger and healthier!