Mine is an interesting and "late in life" journey.

First, a little background.  I'm the youngest of four girls (by 15 years - whoops!) in my family.  I was diagnosed coeliac at the ripe old age of 56.

After suffering from long Covid in 2021, I felt tired, lethargic and generally unwell. There was no particular symptom I could name.  My doctor did various blood tests, nothing glaringly obvious was amiss. Iron was slightly low (I'll elaborate later) but nothing alarming.

My favourite treat at a cafe had always been a scone. About the same time,I noticed that after having any scone or gluten-laden treat, my stomach felt like I had swallowed a "brick." I had no vomiting, diarrhea, or any other typical signs. If anything, I used to joke about my "sluggish bowels."

Moving forward to 2024; I went to my GP with menopause issues and she suggested HRT. She said before prescribing, she would do blood tests and check my blood pressure.  Feeling generally okay, I consented.  Ironically, my blood pressure was high.  Blood tests showed I was neutropenic, meaning I had a very low white blood cell count and virtually no immunity. Initially, this was put down to my having long COVID, a recent virus may be? Repeat bloods in three months, we ordered.

Three months down the track, my white cell count was even lower.  How did I feel?  Pretty much the same as before.

Feeling frustrated, I asked my GP to test me for coeliac disease, as I had researched that an autoimmune disease can cause neutropenia. She frowned and asked why.  Here the history begins.  My Mother was diagnosed with coeliac disease at 75. Yes, 75.  When anyone in our family had a blood test, it normally showed low iron levels.  This was considered "just generic" and no big issue.  My mother had suffered for years with what is commonly called reflux. There was some indication that the issue could be coming from her gallbladder. Mum was eventually put on the waiting list for a gastroscopy. When this was done, the surgeon came straight out and told her she had coeliac disease, judging by what he had seen, but biopsies would confirm that.

My eldest sister then reviewed her health and asked for tests. At the age of 52, the diagnosis confirmed coeliac disease.  My second sister had health issues too, the worst of them being dermatitis herpetiformis. After years of visiting dermatologists, she, too, was diagnosed at the age of 50.  My third sister, though not officially diagnosed, has health issues that warranted experimenting with a gluten-free diet.

Meanwhile, I sailed along blissfully ignorant, until at the age of 56, and after pushing for tests (why is it so difficult?) was confirmed coeliac.

I have three adult children. Two are fine, but one has recently been diagnosed after suffering from dermatitis herpetiformis.

All things considered, I cope fairly well after a year into this journey.  The things I find most frustrating are eating out and "spare of the moment" social gatherings. I can now laugh about the looks I get occasionally when I say I'm gluten-free/coeliac.  I do not have anything contagious!  I guess ignorance is bliss.

I'm grateful for the support from Coeliac New Zealand, and also for the fact that my health can (largely) be controlled by what I eat.

Article provided by Debbie Thompson, Christchurch