--YOU KNOW YOU KNEAD IT--

Category: Coeliac

I am the ABSORBER

Blood tests, six months after being told to kiss sourdough goodbye, indicate the HEALING, the HEALING! As in – I am now absorbing iron, zinc, magnesium, B12 and all the other sundry important things. Woot, woot! I was looking quite smug as the doctor related all this to me, until he said:

“Well, your coeliac screening results are still abnormal…but they are much better than they were!!”

Basically on the scale of blerg (otherwise known as immunoserology), I was over 100 at diagnosis (Small Z was 128). Over six months this has dropped to 48. Below 20 is normal. So that is still progress…just not a complete reversal of years of damage, miracle-style. T-glutaminase has dropped from 10 to below five – which IS normal.

I am using this post for my own future reference so forgive the medical detailing – my ALP (alkaline phosphatase levels that were high for three years before anyone thought to check why) have normalised. This is a big deal for me, as I had to spend a long week or so at the start of the year while they established that it wasn’t because of anything super-nasty. *shudder* There is nothing fun about having an upper abdominal ultrasound, saying goodbye and then having them chase you as you’re about to leave the waiting room because they “need to check a few more things.”

It was timely that M sent me a link last night to an article about one family’s experience travelling to Italy with their eleven year old daughter who has coeliac disease. If you can’t be bothered following the link, these are the salient points:

Italian children are tested for coeliac as part of normal health screenings before the age of six, we learned. Those with coeliac disease receive a €140 monthly stipend to cover the additional cost of food, as well as extra holiday time.

The Associazione Italiana Celiachia publishes a restaurant guide and provides annual reports for the Italian Parliament.

Gluten-free food is considered medicine for coeliacs so, like painkillers or antibiotic ointment, it’s stocked in pharmacies. Labelling is comprehensive; if it passes the European Union’s strict standards, it’s labelled senza glutine. Grocery stores tend to have sections for gluten-free, as well as extensive gluten-free pasta selections.

I would NEVER have thought that Italy, of all places, would be so coeliac-savvy. Right now, I want to relocate – or at least spend a considerable time anchored there, eating my way through the gelato and GF pizza.

State of Decay. Mother of the Year.

Can you see the cameras flashing? The banner behind me that says ‘PARENT #FAIL OF THE YEAR’? It is I – destroyer of dentine and decayer of enamel. Welcome to my land of despair.

I took the Smalls to the dentist for a check-up. Basically Small Z went back in the seat, opened her mouth, a light was shone in and I shrieked,

“What the hell is THAT?!”

The polite and ever-smiling dentist informed me it was a tooth with quite a bit of decay – and could he x-ray her please, to check another suspect area?

I wrestled briefly with myself over radiation issues versus a child with a mouth full of blackened stumps, and acquiesced. Leaving Small Z trapped like a bug under a lead apron, we all stepped into the corridor for a moment. Zap. The other suspect area was NOT a hole (small mercies – I was looking for all kinds of small mercies) but, the first one was a PROBLEM. It was a baby tooth (YAY!) but it was one that doesn’t come out until around the age of ten or so…

Smiling Dentist broke it down for me. She could have the tooth filled and would probably require a crown – a stainless steel crown (WTF? Where did the precious metal thing go? What happened to gold? The stockmarket price on it is low, but obviously not low enough…)…OR…the tooth could be extracted, which would mean an appointment with an orthodontist after the fact as she might need a ‘spacer’ inserted to keep the gap open for the adult tooth. I blanched, as Small Z looked from me – the protector (and yet decayer) of her teeth – to Smiling Dentist, Tooth Hero and Owner of the Moving Chair and Big Light.

/…tangent: I have dentophobia. This dates to the age of ten, when it was decided that I needed braces. I had one of those fang upper incisors that had savaged its way through my gum – which looked awesome when I curled my lip like Billy Idol – who was just about to enter the charts. However, it was not considered a good look for the future. Thus, four teeth had to be pulled out to make room for fang-taming and brace application. They did it in two sittings. My memory is full of the dentist wrestling perfectly good teeth out of my mouth – and they didn’t want to leave. There were cracking noises, lots of jerking movements and at one point it seemed that he was almost kneeling on me to get maximum traction. Cue: blood, trauma and extensive cotton wadding. Even then I boggled at what had been done to me in the name of a straight smile. No kid of mine…etc. etc. /tangent

The Smiling Dentist began to look rather strained, because my eyes had rolled back in my head at the word ‘extracted’.

“Ahhh…which is the least traumatic option?”

“Well, she’ll be in the chair for much longer if we go for the filling and crown. The extraction [I steadied myself] would be pretty quick. I would say we should extract it.”

“Um.” I did actually shudder. “Can you look at Small DB while I just think about it a bit?”

I didn’t really get time to think about it, because they flipped Small DB back on the chair… No holes, but serious issues – the enamel on her back teeth is shot. Enamel hypoplasia.

“Enamel hypoplasia is typically caused by malnutrition, illness, infection or fever during tooth formation.”

Crap. Small Z also has some of this. The Smiling Dentist asked if they had had antibiotics a lot as babies. Neither of them has had antibiotics. I asked whether he had heard about the correlation between coeliac disease and problems with dental enamel. He hadn’t. We made an appointment for an extraction for next month, and left.

In previous reading I was sure I had seen links between coeliac disease and dental problems. I came home and found this. The other reason for my new title ‘Decayer of Children’? We have never used (grab on to your chair) we have never used toothpaste with fluoride in it. Why? Three reasons:
1) I didn’t want them swallowing fluoride toothpaste when they were tiny
2) There is a whole lot of gross stuff in normal toothpaste that I think everyone would be better avoiding – stuff like triclosan and SLS
3) I figured they would get a reasonable amount of fluoride from our drinking water

I don’t believe that the State of Decay was caused completely by the lack of fluoride toothpaste. In Small Z’s case I feel like I can definitely attribute some of the issue to coeliac disease. Small DB? I’m not sure – she hasn’t been tested for coeliac disease, but she did have a few instances where she had prolonged periods of fever when she was two or younger. Her teeth are on the edge of being a bit disastrous.

The Smalls are almost a junk-food free zone. They have a lollipop now and again. They have cake occasionally. They do eat quite a bit of fruit (yes, that is also sugar). But OMG, compared to many other kids I am acquainted with – they are DEPRIVED when it comes to sweets. I don’t allow juice (more sugar) – so they get milk, water or smoothies.

Nevertheless, I am now wishing that I had let them brush their teeth with chemical sodden, advertisement laden low-fluoride toothpaste – because if I had? Their teeth would either be better than they are, or not – but it wouldn’t be so directly my fault. 🙁

In the afternoon after the dentist appointment, Small Z complained that the tooth was hurting when she ate. There was no way she was going to last a month until the next appointment. I secured a cancellation at the same place, the following day. Smiling Dentist was not available, so she was to see someone else. I told M to turn up and say she had a toothache, and to get a second opinion. I handed the entire situation over to him, as I was a mess and incapable of rational thought.

THANK GOD!! While I sweated at work wondering what was being done to Small Z, M talked to the very savvy female dentist. He pinned her down and said,

“If this was your kid? What would YOU do?”

There was some prevaricating, but she eventually said that Small Z should have a filling and then the stainless steel crown. If it didn’t work, we’d be back where we started – then extraction might be an option. So that’s what they did. Savvy Dentist said that Small Z was the best kid patient she had ever had – very calm, and lots of questions. Small Z reported that the needle to numb her tooth hurt quite a lot, far worse than a blood test – but she had coped.

Little Metal Mouth is fine. I am recovering. We have low-fluoride toothpaste full of foaming agents, new toothbrushes, lashings of dental floss – we are brushing twice day (previously it was just at night) and I am trying to cover the coeliac angle by supplementing the Smalls with liquid Vitamin D – which in moderation can’t hurt, and will hopefully help. Coeliac disease stops you absorbing vitamins and minerals – which is why it leads to bone density issues – teeth are bones. And you can’t absorb calcium to make strong bones, UNLESS you have Vitamin D.

The End. I hope so.

 

And yes, I will post a picture of Metal Mouth when I can…

Downfall of the Glutard

Despite the fact that I busted my arse packing all the food for our six nights away in the caravan, I got glutened. In a Big Fat Gluteny way. What is REALLY annoying is that I don’t know how it happened. I did buy three Vietnamese spring rolls to eat at the main stage of the folk festival one day – they were supposedly gluten free. I did let other people share our hommus dip – but I was sure we were all using gluten free crackers. Whatever it was, I think it must have been a LOT, because it has pretty much laid waste to the past two weeks…

This was my first big glutening 🙁 It began as it had on another minor occasion – with desperate unquenchable thirst. All of my skin was like a desert. My lips cracked. I got three coldsores. Brain fog. And then the mood stuff hit me. I can’t even. Like the pinnacle of the worst PMS – I had no tether. The poor Smalls. I did screaming, I did throwing, I did prolonged sobbing. I felt like some crazy person was inhabiting my body 🙁

There is good evidence now that the gut and the psyche are inextricably linked, so really, the whole episode should not have been a surprise, but… WOAH! It was so extreme. And topped off by debilitating first-trimesterish fatigue. I have been drinking coffee regularly, because tea was just not cutting it. Coffee hasn’t done much either though, and just makes me feel more dehydrated than ever.

So it has really knocked me around for just under three weeks. It’s a bloody good lesson in becoming more vigilant, if just for the sanity of my own little family 🙁 I have cried at work, I have cried at the chemist, I have cried with Small DB patting me gently. I have made both Smalls cry by being a really horrible parent – and that too is more fuel for my gluten vigilance. I don’t want this to happen again. Ever.

Have I mentioned that once it is possible to buy a handheld spectrometer, I will move hell and high water to get one? How amazing would it be to laser what is on your plate and find out if the food is contaminated? There is such a huge level of trust involved in buying food – both at cafes and for home use. I buy through a co-op and get stuff like bulk buckwheat flour, cacao, tapioca – and I have been told they are all gluten free – but to know unequivocally would just take the pressure off. Sometimes it just feels like I am blind and hopeful. I don’t know if any of that stuff might have tiny contaminations that are doing me (and Small Z) damage.

And while we’re on the subject, I have been giving Small DB gluten every day. Quite honestly, she has been under the weather the whole time. I am so worried that she HAS coeliac disease and that I am poisoning her little body. On the other hand, I feel like I need a definitive answer, and so she needs to ingest it every day for at least a month in order to have the blood tests. Gah to it all.

One year clear

–An update to mark both Coeliac Awareness Week 2015 and my first year of being coeliac–

Bone density. Two years ago I had a bone density scan. My GP suggested it in conjunction with other unrelated investigations. She thought it would be wise, in view of my low iron, low every-bloody-thing… all attributed to breast-feeding. The scan showed osteopaenia (the precursor to osteoporosis). So that sucked. What sucked even more was that it wasn’t for another YEAR that I was diagnosed with Coeliac disease – losing me 12 months of potential improvement. Because in that year I kept eating gluten and thus not absorbing any calcium, vitamin D, iron, etc… Frustrating.

Now that we are living back in the same area we were when Small Z was born, I am closer to the GP I found at that time. She’s a super-straightforward lady – and usually that is something I love about her, but today – not so much. I was already feeling a bit down, because I knew that she wouldn’t have called me in unless my recent bone density scans sucked.

“No!” she said, when I turned up – having scavenged a cancelled appointment – dragging two scruffy Smalls with me. “Actually there has been a little improvement – mostly in the spine – not so much in the hip.”

I explained that I’d only really had a year to work on it, and she asked me about my diet. I told her I’d gone off dairy on January 1st for a month in an effort to find out why I STILL felt crap after the November Glutening Disaster. I had discovered that quinoa and coffee were the problem…eventually.

She looked at me hard. “I need to make it very clear to you. You do not stick to your diet, you don’t make eating properly your priority, you will DIE EARLY. That is an actual statistic. You can’t do things like cut out dairy.”

I nodded mutely, and felt Small Z start to shake beside me. I found my voice.

“We are all coeliac.”

“Sorry?”

“All three of us here – we’re all coeliac. So could you please explain to Zoe exactly what you just said? Because she’s really upset.”

She looked a little contrite and pulled her chair around so she was right in front of Small Z. She talked right to her.

“What I’m saying is true. If people with coeliac disease eat gluten, they will die earlier than those who stick to their proper diet. Is your house gluten free?”

We all nodded.

“Do you ever ‘cheat’ and eat gluten?”

Much head shaking.

“Well, because you and your sister have been diagnosed so early and you stick to your diet, your life expectancy will be just the same as anyone else who doesn’t have coeliac disease.”

Small Z wiped her tears and her nose and I felt so angry about this stupid thing that my genes passed on to her. I felt angry that the doctor had been an insensitive twat. But I was also glad she laid it out there. She went on to tell me that the crucial time for kids with coeliac disease is in their teenage years and early twenties, when they feel bulletproof and don’t want any restrictions.

I understand that. And I will understand if the Smalls feel that way – but not about their diet. Because then, as well as feeling immortal, they will have to also be incredibly stupid. I fondly hope that with all the knowledge available to them, and almost their whole life being gluten free, they will smoke a few ciggies, try a few drugs and remain gluten bloody free. Best case scenario – a vaccine will have been developed by then, and we won’t have to be vigilant anymore.

Coeliac disease - Australia

If you have a first degree relative with coeliac disease, you need to be tested for it too.


Fatal error: Uncaught Error: Call to undefined function lovecraft_archive_navigation() in /home/eegmlncw/public_html/wordpress/wp-content/themes/lovecraft/archive.php:49 Stack trace: #0 /home/eegmlncw/public_html/wordpress/wp-includes/template-loader.php(106): include() #1 /home/eegmlncw/public_html/wordpress/wp-blog-header.php(19): require_once('/home/eegmlncw/...') #2 /home/eegmlncw/public_html/index.php(17): require('/home/eegmlncw/...') #3 {main} thrown in /home/eegmlncw/public_html/wordpress/wp-content/themes/lovecraft/archive.php on line 49