Day 2/30: Myers Way

I thought I’d blog about something else for a change. I’ve just started a new “gut healing” protocol that will apparently make me feel amazing. From the book:

By the end of the first week you should be feeling energised, focused and clear. Your mood will likely improve as your ability to concentrate expands. Your skin will begin to glow. (No kidding – that’s what happens when you ease the inflammation that has been plaguing your system.)

The science in the book is comprehensive and explained very clearly, so I’m willing to place my trust in this doctor. Well, to be honest, I feel so utterly crap I’d do pretty much anything. No dairy? Makes me nauseous anyway. No sugar? Makes me nauseous anyway. No caffeine? Oh come on, I haven’t touched it in months, give me more of a challenge! ūüėČ

So, here I am on day 2. 

It’s probably easier to explain what I can eat: veg, organic meat/fish, fruit, and some spices. That’s it. No seeds, nuts, nightshade veg, grains, legumes, or anything else really.

And you know what? a) it’s really easy to stick to any diet when you have severe morning sickness because eating is no longer about pleasure, and b) I have discovered a desperate, all-consuming addiction to baked squash and baked sweet potato. In fact, carrots are pretty high on my must-have list, as are mangos. I don’t think it’s coincidental that all these foods are bright yellow/orange. They taste heavenly when I eat them, so I think my body is somehow in need of extra betacarotene. I even cooked another sweet potato after dinner, before I went to bed last night, because the thought of eating it was too much temptation. It was like vegetable ice-cream.

So, I’m on a lower prednisolone dose this morning and feeling really tired, plus I’ve got a horrible headache which I suspect is sugar-withdrawal as I must have eaten 100 bounty bars in the last few weeks. I feel like I’m moving through mud. I know this is going to be the worst week. After this I will:

  • Be re-activating my adrenals again after the steroids
  • Be on the other side of the morning sickness hill
  • Be a week into the Myers Way and all good things are going to happen, as quoted above.

Right? 

Yes. I cannot feel any worse and remain on my feet each day. It’s all going to be great very, very soon…

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!

Coeliac Disease Home Testing

coeliac

18 months ago, I bought a home blood test for Ceoliac Disease. The test result (positive) is pictured above.

I bought this test two months after my first miscarriage (when trying for baby no.3). I was suffering (and occasionally still do) from digestive complaints – wind, massive bloating, cramps and (TMI) even two occasions of leaking a bit of poo (how horrible!!!!! I can’t even believe I’ve written that down!!!!!).

Anyway, seeing the positive result, I went straight to the doctor and they ordered me a blood test.

Which came back negative.

I was stunned. Not only do I have many of the symptoms, but coeliac disease tends to run in families. My mother has suffered from IBS for years (she has never been tested, but coeliac is often mistaken for IBS) along with a whole host of other immune issues. And her mother suffered osteoporosis (which can be a result of coeliac disease).

Not only that, but coeliac disease is often linked to recurrent miscarriages. My count stands at seven (at no point has anyone suggested coeliac disease might be worth investigating, nor did the doctor I saw think it was relevant).

In fact, my doctor didn’t even want to see me – the receptionist gave me the results and said there was no need to come in and see her.

I guess my digestive problems weren’t considered serious enough to warrant any further action.

What did I do?

I cut right down (but not completely out) on gluten products. We switched pasta out of our meals (we used to eat a lot of it) and included more rice and potatoes. I cut down on bread.

I felt better.

And that’s how things have been for 18 months.

Eating vegan has prompted an increase in gluten and my skin and eczema are now really bad (could be the dark chocolate). I’m full of wind (could be the extra beans) I’m bloated as hell (could be my big ovarian cyst). I just feel so crappy all the time (no, that’s not a medical term, sadly).

But now I’m wondering again.

Why was the home test positive and the doctors test negative?

Is the home test just rubbish?

I’ve read as many reviews as I can on the home tests – many people have got a positive home test and gone on to get a positive test at the doctors.

What is happening in my case?

Why the discrepancy?

I decided to do some research.

The coeliac test I originally used is this one. It tests for:

  • IgA antibodies to tTG (ATA IgA)
  • IgG antibodies to tTG (ATA IgG)

ATA IgA is almost certainly an indicator of coeliac disease. However, coeliacs can be deficient in IgA and produce excessive IgG. The problem is, IgG is not as definitively linked to an immune response to gluten (as far as I understand).

So I was testing for two variables in one test. And I don’t know which was positive.

Maybe my blood test at the doctor only checked IgA?

The doctor is closed for the weekend, so I went out and bought a test for IgA only, so see what the result would be:

coeliac2

Negative!!

So I have no IgA antibodies to tTG.

Logic therefore dictates that I tested positive to IgG antibodies in the first test. This may also explain why the doctors test was negative (to be confirmed).

Next step:

Why would I have raised IgG?

Two possibilities:

  • I am a coeliac with IgA deficiency
  • I am a coeliac with normal IgA levels (some people have a positive biopsy despite a normal blood test)
  • I am not a coeliac. My body is producing an immune response to some other condition or issue (I have long suspected an immune issue, as I mentioned in the antihistamine protocol)

IgA Deficiency

From Medscape: Immunoglobulin A deficiency (IgAD) is defined as an undetectable serum IgA level. In the past, this was usually confirmed with the low-level radial immunodiffusion method (lower limit of detection is 50 mg/mL [5 mg/dL]). However, this test is rarely done in current practice, and results are usually reported as < 0.07 g/L or < 0.05 g/L.

And from coeliac.org.uk: When the laboratory is measuring your antibody level they should also check your total serum IgA to detect IgA deficiency. If you are IgA deficient your GP will need to test you differently for the condition.

So I need access to my blood test results from 18 months ago. That will have to wait until next week.

If I cannot obtain any further confirmation via my doctors, I will try an elimination diet and subsequent gluten challenge.

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