Today I went back to the doctors to go over the blood test results from my Coeliac test 20 months ago.
It turns out that on the four markers they checked, I was out of range for three, but the fourth was normal. The one that was normal was the most important: anti-tissue transglutnase.
I was clinically deficient in calcium and potassium, and I had a very high (way out of normal range) level of serum C reactive protein, which indicates inflammation or infection.
It is commonly accepted in the coeliac community that the antibody test can come back negative if you are IgA deficient, and sometimes even if you are not, and you can still get a positive gut biopsy and be diagnosed as a coeliac.
The doctor that reviewed my results 20 months ago was a stand-in doctor who I saw because my usual doctor was away.
My usual doctor said the following.
- With those results I should have had a repeat test or further investigation
- It was, in all likelihood, a false negative, given my low calcium and potassium levels
- They could do a gut biopsy, but I would have to eat gluten every day for two months beforehand (longer if the NHS waiting list is busy).
- Essentially, he stated that I am almost certainly coeliac, but if I am reluctant to eat gluten going forward the best thing to do is to stay off gluten for six months and then do a dietary challenge.
I came home and my head is all over the place.
Why didn’t I follow up on these results 20 months ago?
Here are some of the symptoms usually associated with coeliac disease (taken from ceoliac.org.uk) that I have experienced:
- severe or occasional diarrhoea, excessive wind and/or constipation – YES
- recurrent stomach pain, cramping or bloating – YES
- anaemia – YES (childhood and pregnancy)
- tiredness and/or headaches – YES
- mouth ulcers – YES
- depression – YES
- infertility – YES
- liver abnormalities – YES (unexplained liver inflammation during illnesses. Tested for hepatitis – all -ve)
- repeated miscarriages – YES
- joint and/or bone pain – YES
- neurological (nerve) problems such as ataxia (poor muscle coordination) and neuropathy (numbness and tingling in the hands and feet) – YES (neuropathy)
Out of this list it doesn’t take a genius to guess which one of these jumps out at me the most.
20 months ago, when the stand-in doctor wrote “Normal, no action” on my file, I’d just suffered my third miscarriage.
AT THAT POINT she could have called me back to try to find out why my other results were so out of line.
AT THAT POINT I would have had the energy for a biopsy, for stuffing my face with gluten. I would have done anything for that third baby.
Today, 20 months, and four more unexplained miscarriages later, my fight is all gone.
I refused the gut biopsy today.
I stopped eating gluten 6 days ago and (I write this with tears filling my eyes), my insomnia is better, my eczema has dried up and softened, my stomach is flatter than it’s been in years, and all my pain and bloating and soreness is gone.
Once you start eating gluten-free your intestine starts to repair and a biopsy will be inconclusive. There is no other definitive test.
Six weeks ago I lost a developmentally and chromosomally normal baby boy. A boy! With no explanation. Sad expressions from doctors and nurses, all unable to explain why my body keeps rejecting babies. 46 days on and I am still bleeding.
Would I have gone through this if the doctor had called for the biopsy 20 months ago?
Would I be sitting here now with a baby on my lap?
It’s almost unbearable to think about. A casual dismissal of some of out range results that could have changed the course of my entire life.
Life goes on, if you’re lucky.
And I am lucky.
My doctor’s advice was to stay off gluten for 6 months. Ha. I will never touch it again.
Could I sustain a pregnancy now?
I don’t know if I even care. I remember the nurse on the ward telling me to never give up. That she had her daughter at 43.
But even while she was saying it I think I knew that I didn’t have any more fight left in me for babies. The increasing age gap, the stress of worrying, the stupid trying and stupid waiting and stupid scheduled sex, and my broken heart: held together with scraps of tape after losing so many pregnancies.
I feel beaten.
And for that I am crying today, even though I think I finally have my answer.