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.

19 thoughts on “Coeliac Disease, Miscarriage, and Me

  1. Answers are good, Rose. I’m glad you have the information you’ve been looking for – and you can make decisions accordingly.

    As for the crying… lovely, you go right ahead. A good, cleansing, cry may be just the thing you need today.

    Sending hugs.
    xo

    • It totally was. Nothing like a good cry for clearing the dark clouds. I feel as sunny as the day is today. Hopefully yesterday was the end of a long and difficult chapter. Time to move on and repair the damage. Thank you xxx

  2. Doggone it. I’m crying for you here. Things like this, a simple action that could have changed the course make me furious. Had my doc put me on bedrest on a Monday instead of telling me to come back again to check on Friday, my girls might have been carried longer than 26.5 weeks. Maybe one wouldn’t have a heart issue and terrible vision caused by being on Oxygen for 10 weeks. Maybe the other wouldn’t have suffered a belly infection that nearly took her from us. I know doctors aren’t God. They do their best to be as attentive as they can (most times) but dang it… there are so many what-ifs. Praying hard for you today Rose.

    • Thank you – hard to even think about the what ifs isn’t it? Painful. 26.5 weeks is so very early. You are blessed that they pulled through. Maybe bedrest would have changed the course of the future. Maybe I’d be sat here with a toddler. Crazy to think of alternate paths through life… I hope we can both find our peace with the past. X

  3. I think of you so often and really hope that you will find some answers. Particularly after your last m/c I just feel that there should be a reason (a medical one) for your repeated miscarriages. How very frustrating to look back and say “what if” but the silver lining here is that you seem to at least have an answer. I hope having that answer will bring you closer to putting everything you have been through in its place and finding your peace with it. Thinking of you very often and wishing you well. HUGS!

    • Thank you! Feeling much better today after yesterdays tears. Ready to move on and deal with this change. The future’s brighter than it has been for a while. I’m hoping this is the last page of a long and difficult chapter!

    • Thank you Kerry, for having faith in me! Feeling bright as the sunshine this morning after all yesterdays tears. I just want to work on healing my poor body now after years of unwitting abuse x

  4. You know what I think I am in the same boat. I also refused the gut biopsy because I couldn’t stand the thought of two more months on gluten. I’ve been off it for almost a year now and never felt better. My doctor is convinced I’m coeliac too. And I think that my immune system took such a knock from years of gluten abuse that it’s only just sorted itself out. That was enough for me never to touch it again. There are too many coincidences with RPL that a simple switch like this felt doable. Hugs, I totally get it xx

    • Omg, I didn’t realise you had gone gluten free – your history with RPL and immune issues is too much to be a coincidence, surely? My goodness. It makes me alternately sad and relieved to be at this point. I’m so glad to hear you have stayed gluten free and felt better for it. And of course, look where you are now :-). Stay happy and healthy Lisette, always a pleasure to hear from you xxx

  5. Ahh, my heart aches for you. I had a miscarriage last year and would never wish it on anyone. Sending you some positive vibes and hoping you feel better. Please don’t give up on trying, maybe not now, but later on down the line….. hugs from California.

  6. I happened upon your blog and your story is so much like mine. I’m 38, had two healthy, uneventful pregnancies resulting in my daughter and son. I lost my third pregnancy in the 9th week – but didn’t find out until a scan at 12 weeks. I tried unsuccessfully to get pregnant for another 6 months after that miscarriage, to no avail. My OB suggested I see a fertility specialist. Long story short…1.5 years later, 2 egg retrieval processes, 5 embryo transfers (using a total of 8 embryos), and on the very last attempt with the very last frozen embryo, I became pregnant. I am just 4w4d today. You know what we did differently this cycle? My fertility doctor told me to go gluten free for a few months before the transfer – and we also added Benadryl to my medications at the time of transfer. I have my first ultrasound next Tuesday to check for a gestational sac. I have never been tested for celiac disease and at this point would not submit to one as I’d have to consume gluten for months beforehand – -no thank you! Since going off gluten, I have never felt better – I accidentally ingested some a couple of months ago and felt just awful for days afterward. Anyway, I just wanted to let you know you’re not alone in your struggles, and don’t give up! Thinking of you…hugs from New Jersey!

    • My goodness – such a similar experience!! Thank you so much for sharing it with me. I don’t know if we will ever try again… but I do have a strange faith that without gluten it would all be ok. I wish you the very best with your pregnancy – I can well imagine how you must be feeling after what you’ve been through, staring at the unknown months ahead. Hang in there!! And thanks again for sharing – it is personal accounts like yours that give me the strength to carry on X

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