Journey to Diagnosis

For a while I was on a ‘cream donut a day’ diet.  I found some delicious fresh donuts at my local bakery – soft, and sweet and topped with a coffee icing.  Mmmm.  So I ate one a day.  No I wasn’t starving myself and bingeing on the donuts.  No. I was on Doctors orders to eat fat.  So eat fat I did, with much gusto!

That diet was part of my journey to a diagnosis.  October is National Celiac Disease awareness month, and next month is the two year anniversary of receiving the news that I have celiac disease, so I thought it was only fitting to try to put into words the journey that I undertook before hearing that I have this condition.  I apologize now if this turns out to be a rather lengthy post……it was a rather lengthy journey – in fact it took three and half years before I was given a definitive answer to my problems.

Celiac disease is a  disease in which the lining of the small intestine is damaged from eating gluten and other proteins found in wheat, barley, rye, and possibly oats.  The symptoms of celiac disease vary greatly from person to person – my symptoms were most unusual – thus the lengthy journey I had to undertake to get a diagnosis.  Treatment for the disease is the simple part – avoid the bad foods and the stomach heals itself and other symptoms go away….some see that as a life sentence – for me it was an answer and a way to live pain-free.

So here’s my story….

Celiac disease can develop at any time  – from infancy to late adulthood.  We aren’t sure when I first developed it but wonder if it happened when my body was recovering from my second miscarriage, which was just as traumatic for my physical body as it was for my emotional state.  My oldest son was about 18 months old when I got pregnant, but I was severely sick with morning sickness.  I was throwing up all day and every day.  In thirteen weeks I lost eight kilograms  (18 lbs)of weight.  We found out at the baby’s 13 week mark that the baby’s heartbeat was not there – she had not survived past eleven weeks.  The whole ordeal is worth a post in itself – when God grants me the words to write I will share the story.

When I was trying to recover from the miscarriage I developed a really bad case of sinusitis.  I took three courses of antibiotics, the sinusitis symptoms seemed to finally disappear but I was left in really bad pain on one side of my face.

While all that was going on we moved house and I got myself a new Doctor.  I had been getting to know this dear Christian lady through a mutual friend of ours, so when we moved into the neighbourhood where she had her medical practice, it made sense to start seeing her for my medical care.


What happened next was the start of the investigations as to why this pain was persisting in my face.  I saw three different Ear, Nose and Throat Specialists, three different dentists and started trialling various painkillers.  No-one  could give me an answer as to why this pain was happening and none of the drugs worked, like really worked to cut through the pain.  I ended up giving up on the specialists appointments as I got the feeling that they weren’t taking me seriously.  That ain’t good for your self-esteem when you’re already feeling very low because of your low body weight, unexplained infertility with trying to conceive again and also dealing with outside circumstances such as car accidents, moving house, financial struggles etc.  It was a tough time.  A really tough time.  But let me say this as well – as tough as it was – I still had things to smile about – things that brought me joy – but the pain was there – underlying everything else.  Making everything else just that extra bit harder.

We also thought I had endometriosis – we thought that was the reason for the infertility so we scraped together the money to have investigative surgery for that matter.  Nope.  I was so disappointed to be told ‘no, that’s not something you have’.  I just wanted an explanation for that particular pain I was having. I wanted any explanation for why my body was aching in different places.  Why I had trouble falling asleep because of the pain.  Why the tears were never far away.  Now, hindsight is a wonderful thing – we now know that my suspected endometriosis pain was actually a symptom of the celiac disease – it can cause abdominal pain and swelling and also infertility.  Anyway the investigative laparoscopy I had actually helped the baby-making situation and I to everyone’s wonder and delight fell pregnant the following month.  The doctors had said it wouldn’t happen until I had put on more weight – thus the high fat diet I was on – but it must have been God’s timing.  I got pregnant anyway and the very week I got the positive pregnancy test I started to put on weight.  Just like that. I had morning sickness and vomiting like I did with my other pregnancies but I still managed to put on weight and keep it on…something I had struggled to do for months prior to that.

The pregnancy had been so longed for and so eagerly anticipated that it seemed to make my face pain fade away.  It was still there – but was easier to cope with, maybe because I had to cope with the morning sickness and my focus was elsewhere.  Maybe the hormones present in pregnancy helped to mask the pain.

I went on to have my gorgeous baby boy, Luka, and then the face pain seemed to get worse again.  I was limited to what painkillers I could use because of breastfeeding…its amazing what you can cope with when you need to. I was determined to breastfeed for a year and so I did.  Then I weaned Luka straight onto cow’s milk….and promptly went back to my doctor. I needed better painkillers and I needed to get to the bottom of this mystery pain once and for all.

Once again I was put back onto the public health waiting lists, given a high priority  and was seen again by more specialists.  This time I had the whole array of tests possible  including a CT scan and an MRI scan.  Nothing was obvious, nothing was there.  My dear doctor believed me – she could see how long-suffering I was, she could see how weakened my body was from sleepless nights from the pain and she kept trying me on different painkillers.  My next referral was to a pain specialist.  I initially thought the pain specialist was just going to try me on different cocktails of drugs…but no…he was better than that…he was determined to find the root cause of my troubles.  He ordered a full set of blood tests that tested for things like vitamin and mineral levels in my body and also the antibodies for celiac disease. My tests came back negative for those antibodies but I had very bizarre levels of different vitamins and minerals in my body.  In particular my calcium, vitamin D and folate levels were very low.  Unusually low for someone who was eating very sensibly and exercising in the sun regularly. I took supplements and tried yet more painkillers and was sent to a physiotherapist and massage therapist to see if they could help my problem at all.

Nope.  They didn’t help – in fact they sometimes made the pain worse.  Some days the pain was bearable.  Other days the pain was intense – so intense I needed drugs that would cause me to lie down because of the nausea that they caused.  I took sleeping tablets to help me sleep – but they caused zombie like behavior.  If it wasn’t for my two little boys who needed me to get up in the mornings and get out of bed and to actually lead a semi-normal life I am sure I would have given up complete hope. And if it wasn’t for my husband who was so supportive and a couple of good friends who knew my situation and helped me through it, I would have stayed in bed every day, all day.

Finally, as a last attempt to try something, to try anything ,my doctor arranged for me to have a biopsy of my stomach lining.  Things just didn’t make sense – I was eating well – like really well, but whatever weight I had put on in pregnancy just kept dropping off me until I was nearly the lightest weight I had ever been again. Blood tests continued to show imbalances in my vitamin and mineral levels.  So I had the biopsy done, I ‘tolerated the procedure well’ the specialist wrote on my chart. I was just so pleased to have another try at cracking this mystery.  Five days later I was walking my son to school when I received a call on my cell phone from Doc Anna, asking me to come into her office as soon as I could that morning.  She kept an appointment open for me, and when I went in she told me the news – I have celiac disease.  The statistics say that 6% of people whose antibodies appear negative for celiac disease, still have it – for those people it is only diagnosable through an actual biopsy.  I was in that 6%.  After three and a half years of specialists, intense fiery pain and enough different drugs to open my own drugstore, I finally had a reason for my suffering.  I cried in her office like I had many times before – only these were not tears of frustration, pain or self pity, but rather tears of relief. After a celebratory dessert of one last  real tiramisu I changed my diet to be completely gluten free and within three months had weaned myself off all my drugs and was totally pain free.

If you’re wondering why my main symptom for celiac disease was pain on one side of my face when most people have issues with their stomach and bowel…we can only conclude that after having such bad sinusitis this created my vulnerable spot in my body – and that celiac disease affects bones and muscles and joints.

So where was God when I was going through all that?  I didn’t always feel it at the time, but I knew He was right there with me.  He provided me with a doctor who became my advocate. When I didn’t have the energy she fought for me – she persisted in fighting for me to find a reason.  She didn’t dismiss me as a weirdo who was imagining the pain, the response I felt I got from a few of my specialists.  My doctor prayed for me and with me.  She made me feel human, when I certainly didn’t feel normal.  God provided me with my darling husband and couple of real friends who were the shoulders I needed to cry on.  For a number of reasons while I was going through all this pain I kept it a secret from our families.  But my friends and husband were the support that I needed.  When I felt physically unattractive, and as ugly as a duckling my husband still desired me and spoke words of encouragement to me.

Although there were days when I felt like I just could not carry on, somehow I still could.  Somehow I could summon up the energy and place a smile on my face for my boys.  Only God can provide that kind of energy – when your physical resources are just depleted.

On my journey to my diagnosis I cried many tears, but I know that God was collecting them all.  I learnt patience along the way. I learnt to open up to my friends about what I was going through – to lose a little of my stroppy independent ways.  I learnt how to empathise with people who are also going through their own pain journeys – especially when the pain is invisible to others as mine was.  I learnt that God is not always the God of instant answers and instant remedies – there is much to be learnt on the journey.  I learnt that I am loved with an everlasting love by both my spunky hunk and sovereign Lord and that doesn’t change no matter how I look or how I feel.

It was a long journey, but it wasn’t walked alone.  And if you are facing your own long journey – please know that you are not facing your journey alone either.