Retrying Gluten

Mmm gluten for breakfast!
At half term, we took the three children camping in France. It was a seven hour drive from Calais to the campsite (although with stops it took us ten), and we stayed in the Dordogne region for 7 warm and wonderful nights.

I’ve been gluten free fairly consistently since I was diagnosed as coeliac in 2014. I relaxed things a bit after having baby F, and then in France, I relaxed things a lot. An awful lot. You know how it is in France – lovely croissants, lovely baguettes, lovely madeleines, lovely everything glutenful and lovely… mmmm.

So we had a very laid back holiday and I ate lots. And I felt fine! Which was great. But then when we got home, two weeks ago, I found myself buying croissants and eating bread again, simply because I had been eating it in France.

And then I started to notice some digestive problems. I don’t know if the bread in France, being mostly freshly made, is just better tolerated by me, or if there is a bit of delay between starting to eat gluten and actually feeling the effects in my body, but about 12 days after getting back I was really uncomfortable, bloated, miserable and in pain. The symptoms kind of crept up on me slowly, getting worse until I felt pretty diabolical. I started to get horrible stomach cramps on top of a sore, bloated stomach and it was only then that it occurred to me that it might be the daily consumption of bread/pastries that was the problem. 

I feel like a bit of an idiot for being so dismissive of what was a massive problem for me in the past. It was especially noticeable when I went running, because although I am carrying a bit of extra weight around my stomach, it started to feel like I had a bag of water strapped to my waist with the way everything was wobbling and sloshing around.

So, I’ve learnt an interesting lesson. Gluten really is absolutely awful for me. It really does make me feel horrible. Obviously I knew all of this, but I had kind of forgotten it. When you watch other people eating it all the time with no obvious problem it becomes easy to convince yourself that it can’t be that bad. But it really is. My body hates it. So I am recommitting to a 100% gluten free diet and hoping that my poor stomach settles down and stops being so uncomfortable.

I have also signed up for a 21 day healthy eating challenge, which is being run by a local nutritionist I met at a business breakfast meeting last month. I am really excited about it! It starts on 3rd July, so I’ll blog about how it goes.

Update: I wrote this over the weekend and I have stopped eating gluten again. I did a run this morning, Flatter stomach, no pain, and I took almost a minute off my current 5km time, bringing it to 33:22. Hurrah!

Well Hello There Wednesday

I’ve popped in for a 10 minute catch up. I’ve read a handful of posts, will scribble this down and then head off again.

Like Mummy Flying Solo I think bullet points are the way forward!

  • Valerie’s Health and Fitness challenge has been awesome. I’ve not touched gluten at all (and never will again, given I found out I was coeliac just before starting). My eczema has completely gone. My heart palpitations have gone. My rosacea around my nose has gone. I even need less sleep. It is incredible. Life-changing in fact.
  • Long time readers will know that I blog completely anonymously – no one knows or follows these posts that I know in real life. Well, I’ve just started a new blog, which is me FOR REAL. One that I am not super-paranoid about others finding out about. I am planning on running my new blog to start generating an income at some point. And I’m also working on an autobiography (delusions of grandeur, ha ha!), that I’m going to promote through that blog. I have finally realised that me is me. I will pop back and share this with you soon.
  • I’ve broken up with some friends. They made me feel bad about myself such a lot and in the end, I realised I was done with seeing them. We all met up once a week as a mums group and I decided my time was up. I texted and explained in a diplomatic but honest way and just like that I was out. And I feel so good about it.
  • I have an appointment next week to check up on my 6cm cyst. I finally stopped bleeding 67 days after my miscarriage, and since then all has been quiet. I am hoping that the cyst has resolved as I am very reluctant to opt for surgery. We will see next Wednesday.
  • That’s about it. Life is good. And I feel good about life.

I miss you all, but will be blogging less frequently here, I think. At least for the moment.

I have been away before and returned in force, so never say never ūüėČ

Much love, Rx

Gluten Free in May

Super quick update as things are busy busy.

I haven’t touched gluten this month and two things:

1) My eczema is gone. GONE!

2) My stomach cramps, tenderness and bloating are gone too.

TOTALLY brilliant.

Just three weeks ago I was waking up at night because my body was itching so much. I was so uncomfortable and miserable. Now the skin is almost completely healed – no redness, no itching – just a little bit of dryness left if you run your hand across it.

Incredible.

As for giving up sugar as well…

I’m sitting here drinking a hot chocolate, so a big fat fail on that one. Ha!

We’re off on hols next week, then it’s half term, so it may be June before I’m back properly.

Keep up the good work challengers!

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.

Gluten and Sugar Free Challenge

health-and-fitness

After some thought – and the gathering of willpower – I have decided to take part in Valerie’s Health and Fitness Challenge¬†during the month of May. See her post for how to join in!

During May my challenge is to be gluten-free and to avoid all sugar (including fruit sugar).

Why?

This month, when I tried to do 30 days of being vegan, although I still ate lots of fruit and veg, the increase in carbs (specifically gluten, I suspect), gave me horrendous bloating, stomach aches and even pain by the end of three weeks. Not only that but my eczema got itchier and redder, and I found sleeping through the night became almost impossible. The last few days were a pretty miserable experience.

I have mentioned my previous suspicions of Coeliac Disease, which was officially ruled out despite a positive home test, so I was already thinking along the lines of going gluten free as a trial when the wonderful Rachael of Mummy Flying Solo mentioned a book called Grain Brain to me (by David Perlmutter MD).

Wow. I read this book cover to cover in a few days. It is essentially a fairly primal approach to eating (for those unfamiliar with primal or paleo it’s based on lots of veg, with meat, fish and eggs for protein, sparing dairy and fruit, and no grains). I’ve used a lot of primal recipes over the last 18 months as I have long suspected an issue with gluten, so it’s something I’m already comfortable with. This book, combined with my recent experience of eating a lot of grains has motivated me to completely cut them out for the month. I tried going gluten free once before and lasted just 11 days. A few days after I started eating wheat again I suffered a chemical pregnancy. Coincidence? Who knows.

This time I’ll be following along with lots of other May challengers and hopefully we can all support each other to get through the month with our new resolutions intact!

In addition to going gluten-free I’m also cutting out all sugar (including fruit sugar). This is specifically to see if being gluten and sugar free helps my skin, and it’s a long overdue experiment (despite heading towards 40 at breakneck speed I still suffer from spots and pimples, not to mention eczema on my body and small patches of rosacea around my nose and lips).

I have a few exceptions to the no-sugar policy: xylitol, stevia, raisins and honey are ok in small amounts.

No particular reason for choosing these other than I have them in the house and they will be my go-to products in the event of cravings.

So, the issues I’ll be hoping to see an improvement on, and will be tracking in my posts are:

  1. My skin
  2. My bloating
  3. My belly fat (I am a classic apple shape Рthe unhealthiest kind to be!)
  4. My eczema
  5. My sleep

I’ll be blogging at the end of each weekend (realistically it will probably be Monday, or even Tuesday morning for me), along with everyone else on the challenge.

Good luck all!

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