Coeliac Disease, Miscarriage, and Me

Today I went back to the doctors to go over the blood test results from my Coeliac test 20 months ago.

Well.

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.

Repeated miscarriages

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.

But.

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.

Pills

I dropped DS1 off at preschool and walked up to the doctors this morning (passing a heavily pregnant woman on the way, of course).

The doctor is running late (he always runs late), and in the waiting room next to me is a mother with four beautiful children, aged around 3 to 11. A little old lady comments on what a lovely family she has. I try not to stare at them. I refuse to think about anything that might change my mind.

I promise myself I won’t cry when I go in. I try all my usual tactics. I pretend I am a Russian with deep emotions who never gives away what she is thinking (yup, I really do this. I have no idea why I have to be a Russian, I just perceive them as being brave). I imagine a lead box inside my brain that is cold and empty on the inside. No emotion. Nothing. I have done all my crying.

The doctor finally calls me in and after a bit of chit chat about my 100% normal hospital results, I say the words I’ve been planning. I ask him for the contraceptive pill. And he looks at me with sympathy and says, You don’t want to think about it any more. You want a break. Yes I understand that completely.

And I cry.

And then he hugs me!

My doctor gets up and comes over and puts his arms around me.

It’s a little awkward. But I’m grateful for his compassion.

He prints off a prescription without any questions. And before I leave, just as we are saying goodbye, he tells me he thinks I am making a good decision.

I feel sadness and relief as I walk out.

I go to the chemist to pick up my prescription, and guess who comes in to queue behind me?

The woman with the four impossibly beautiful children. Two girls, two boys. Her gorgeous children tug at my heart.

After a few minutes the pharmacist calls my name and holds a paper bag in front of me. She asks me if I have any questions.

Is this how it was meant to end?
Why couldn’t I have another baby?
Is there really no possibility it will happen?
Why I am suddenly infertile?
Am I doing the right thing? 

I shake my head, take the bag from her, and I walk home in the cold autumn sunshine.

Two Weeks Today

And I get my test results back from the hospital.

13dpo today, AF due tomorrow and this morning’s test was negative. I knew it was – I have been symptom-free this month so was pretty certain nothing was happening. And these days I don’t really expect anything to happen. My hope has been crushed over the course of the last 15 months.

So, my results.

You know what? I’m kind of hoping I go in there and the doctor tells me I have some chromosomal abnormality and that having had two children already has defied the odds. Then I can come home and be grateful and happy and just STOP thinking about getting pregnant again.

If there is something wrong with me, it kind of gives me a reason to stop. Because I can’t find a good enough one of my own.

I’d probably be happier in the short-term, but what about 10 years on. Will I look back and think I was a complete idiot for not trying longer?

I have a friend’s baby shower to attend in 12 days, which I have been dreading. I knew fate would never give me a BFP before it arrived, so maybe that’s why I am so unsurprised that this month is negative.

I’ve been thinking as much as possible about all the reasons to stop. There are lots. We did this debate back in early 2012 before deciding to start trying, so I’ve already covered every reason 50 times.

There is a whole life out there for me to live, and I’m know I am infinitely lucky and blessed to have the family I have. Having two children under two, with no support from family, was hard work, and it has continued to be hard work, but a lot of the time now it is not as all-consuming, exhausting and debilitating as it once was.

My boys are growing fast and a whole new horizon is in view with endless possibilities for activities and adventures for us all.

Throw a newborn into that picture and it looks a little different.

I always wanted really close age gaps, so I’ve missed the boat for the three I wanted within four years.

I’m rambling. I don’t even really know what to write.

It’s raining here, I’m feeling miserable, conflicted, full of self-doubt, and I hate it.

I like to have purpose, to be moving, planning, creating, building, learning, experiencing, loving life.

But I’m just stuck at a desolate junction and I’ve been here too long now.

Whatever I do, whatever happens, whatever decisions I do or don’t make, I want to live life successfully.

I want life to be full of love, happiness and adventure.

The thing is, I can think that way, but when it gets to ovulation time, can I make the decision NOT to try? Can I ignore that egg and say No, I’m done with that now.

I have a feeling I will just lie there crying in the dark.

Moving On – How?

I’ve been doing a lot of thinking about moving on from trying for a third baby.

I’ve been wondering if maybe that isn’t the path I was supposed to take.

Maybe I already have my whole family here and trying for another is just a distraction from enjoying them.

TTC (trying to conceive) is affecting my whole life.

I have a group of mummy friends who I am starting to dread meeting up with (one has a newborn and another has a baby due in September). The talk of pregnancy and babies, which seems to have been non-stop since I had my miscarriage last August is getting me down more and more. The two that aren’t pregnant, or recently pregnant, are happy that their families are complete, so love talking baby and birth. I just feel like the inadequate one in the corner 🙁

Ovulation signs, potential pregnancy symptoms, the monthly red tide of doom, it all occupies almost every waking thought and it is getting me down.

It is DS2’s birthday next month. He will be 2 and it will be exactly one year since the day we had to cancel his 1st birthday party because I was in the hospital trying not to bleed to death.

I feel anxious and apprehensive about upcoming family visits for reasons I can’t really explain. I feel protective and defensive and like I want to keep DS2 all to myself and for no one to visit us or bring presents 🙁

I feel like a great, big, fat, failure of a woman that my body has been unable to sustain a pregnancy this time around.

How do you move on from this?

How do women decide that they are going to end their TTC journey?

How??

Part of me thinks I should stop seeing my mummy friends because it is making me miserable, make the commitment to leave all this TTC stuff behind, set up another blog with a less niche title, find another project/job/plan to focus on and MOVE ON.

Get my life back.

And then part of me thinks about how I will feel when I am 80 (if I live that long), probably sitting in a community care home, looking back on my life. Will I wish then that I had carried on trying no matter what?

At least when you have a broken heart, you have to just deal with getting over it.

When you stop TTC because it isn’t working, you have to make the decision to stop AND get over your own decision.

It’s shit.

And at 8dpo I’m pretty certain a fat lot of nothing is happening this month. No feelings at all that I might be pregnant. No symptoms to convince me. Nothing to make me think I have anything ahead except self-torture and misery.

I need a plan, but I feel totally paralysed by the enormity of it all right now.

All I know is that I am not happy.

TTC Confessions

I always get so maudlin around ovulation.

I’m supposed to be sorting through the last of all my sentimental crap, but I’m just not feeling any motivation to do anything other than ponder the lack of a pregnancy in my life.

I’ve seen 3 BFPs from forum and blogger companions this last week and it is fantastic for them (and they really have had the longest and roughest of rides, so in a weird way it’s easier for me to be happy for them than for my own real life friends who get pregnant as soon as they start trying and then spend all their time moaning about how shite they feel… yes I am horrible, no I can’t help it, yes I was exactly the same when I got pregnant without really trying), but it just makes me long to see that BFP on my own pee stick.

There must be some hormonal reason why I always feel so crap at this time, which is just plain stupid. I mean, how can I possibly muster the enthusiasm for sex when I am miserable and fed up?

Aargh, I’m just so grumpy and moping, I don’t even like being with myself at the moment.

Even my next door neighbour is bloody pregnant and I feel like some kind of MI5 agent, trying to time leaving the house so I won’t have to talk to her or her husband about how it’s going.

Oh lordy, I can’t believe I even wrote that.

One day I would really like to have sex again like I did in my twenties. The excitement, the freedom, the thrill of oh-my-god-I-hope-I-don’t-get-pregnant.

I will be glad when all this baby-making stuff is out of the way and I can actually retrain myself to do it out of sheer lust (rather than out of sheer lust for a baby).

Oh hold on, I’m married. Does lust return once the TTC sex is done with? Someone tell me it does.

Hah. You can tell ovulation is imminent by the fact that I am so preoccupied with the idea of sex.

I’m going now, before I say something we’ll both regret in the morning.

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