I started this blog as an outlet to describe ‘links’ in my life that are (or that I believe are) connected to years of undiagnosed celiac, to finally getting tested and diagnosed, and to the gluten free diet itself – thus – the creation of my personal ‘Celiac Chain Link Fence.'
As so many of us know, the longer a person goes without diagnosis and a gluten free diet, the more likely he/she is to develop other autoimmune diseases. I was born in 1960 – diagnosed in 2000 – and had many many issues in between those years that I connect to undiagnosed celiac. One of those ‘red flags’ (with information currently available to the medical community), was hypothyroidism, which I was finally diagnosed with in 1984. And who knows how long I suffered with symptoms of hypothyroidism before even that was discovered.
I had my first child in 1983. It was a little earlier than we planned, (we had no money). But she was greatly wanted (I had dreamed of having kids from my earliest of memories). We made it work, naturally. The odd thing was, the “IBS” that I had recently developed over the few years prior to getting pregnant, disappeared. My energy and overall well being improved greatly. Being pregnant seemed to improve the way I felt. Years later, when looking back, I had 4 very clear times in my life when this kind of sense of ‘well-being’ (and weight) increased to a more appropriate level: my late teens, my first 2 pregnancies, and when I was diagnosed with celiac and went gluten free. I have often wondered if there is some sort of “hormonal remission” of sorts (for a lack of my own medical answers or definitions).
Hmmm…. Talk about a long way of getting to the whole “thyroid” connection, lol. Anyway, I breastfed my new baby for nearly the first year. For months after quitting, however, the milk continued. Then came examples of the incredible waste of time, money, and unnecessary fears that come with tests to find ‘simple’ answers. Blood tests for a pituitary tumor – or was it scans? Or was it both? I honestly can’t remember. But it did take some time and tests until ‘they’ tested my thyroid and discovered I had hypothyroidism. A daily pill to level things – and the milk production stopped – and other things improved – as I remember, most connected hormonally.
I remember thinking this was the reason for other issues I struggled with: fatigue, bruising, very dry skin, inability to gain weight, although hypothyroidism generally results in weight gain, not loss. Comments from doctors along the way suggested it ‘odd’ that I was so thin, but no one had an answer or suggestion for a possible answer. Of course, I eventually discovered I had another issue to blame – celiac. But that discovery didn't come until many years later.
Between the thyroid concerns and the osteoporosis, the whole “brain tumor” connection surfaced again – and yes, I went through more tests, scans and fears as I had been put through several years before. The time – the incredible waste of time (and money!) – when just one simple blood test (followed by a simple upper endoscopy for an intestinal biopsy) would have provided the answers.
Guess what happened once I went gluten free? Not only did I amaze the doctors by gaining nearly 15% bone density in the first year, but my thyroid medication continuously needed to be decreased until finally cut in half – and now – even less than that. Was I not absorbing the medication? Was my “little voice” correct? Hell yes it was!
Celiac. “Simple” test. Gluten Free diet – Simple “cure.” (of course, gluten free doesn't "cure" celiac, but it cured the symptoms brought on by my body's rebellion to gluten.)
Years (and years and years) of various health issues, when all that was needed was a blood test, and endoscopy, and a gluten free diet.