A Trip to the Beach

 The weather forecast for Wednesday was good, so we decided to get up at the crack of dawn and drive 2 1/2 hours to the beach.  We chose Bracelet Bay near Swansea in Wales, mainly for the name, but also because we've been to the Gower Peninsula before and it's beautiful, as well as being within a reasonable distance for getting there and back in a day.


 This was our first day out at the beach since the childrens' diagnoses, so we had to put quite a lot more thought into food than in previous years.  Knowing we couldn't just pop into a fast food shop on the way home, we took much more food, and left earlier so we could be home in time for tea.  The beloved DS ciabatta were packed, along with lots of gluten-free snacks and cakes.

 It was a beautiful day, the sun was shining the entire time we were at the beach, and some of us managed to burn, even wearing factor 30!  It was a very rocky beach, with only a little sand once the tide was out, but that meant that it was fairly quiet even though it was only a couple of miles outside of the city.  Even the grumpier members of the family (mentioning no names...) had cheered up by the afternoon, and admitted that they enjoyed themselves.

 We arrived home to a letter from Ruth's consultant.  Her blood tests results were all good news - she is no longer anaemic, she is not iron, folate or B12 deficient.  There is no sign of diabetes or thyroid problems, and most importantly her coeliac anti-bodies have gone right down, and are now 'equivocal'.  A great end to a lovely day.

A Year in Review

 This year has been tough in so many ways.  Getting through it has been somewhat of a triumph.  I'm hoping and praying for an easier year ahead.  I took this photo yesterday to symbolise the hope I have.  Something about a rose bud opening its petals in an almost freezing garden in December spoke to me.

Yesterday it was a year since my Grandma died.  She had been very ill for a long time, and although it was a relief that she was no longer suffering, it was heartbreaking for all of us.  For Ruth and Alex, it was the first time they had lost someone close to them.

This photo of my Grandma and I was taken by my dear friend and wedding photographer Kirsty Wiseman at my wedding in May 2008.  It is one of the most precious to me of all the amazing photos she took that day. 

Then in February this year Alex got sick.  In agonising pain for months, he was convinced he was dying - had me worried I can tell you!  In May I was told I had degenerative arthritis in my wrist which would continue to get worse and was already causing a lot of pain and difficulty in doing things.  However this was eclipsed the following week when we were told that Alex's blood test had been positive for Coeliac Disease. Ruth was screened as a result, and in July we were told her blood test was positive too. A biopsy and endoscopy in August followed for Alex who was immediately told to start a gluten free diet as the damage to his small intestine was so extensive.  In October Ruth had her biopsy and endoscopy and was instructed to start a gluten free diet once the results came back.  Fortunately it was caught much earlier in Ruth, and the damage wasn't anywhere near as bad as with Alex, and she had few symptoms.

It has taken a long time to come to terms with everything, and to get used to the new diet.  But finally I think we're getting there.  I'm feeling positive for the first time in a long time.  Seeing the children doing so well is inspiring.

Just need to get to the bottom of these abdominal pains I'm having, but hoping CT scan on 21st will shed some light on the situation.  Hoping for positive news there too :)

Looking back....

Part of the recovery, not just for Alex, but for us as a family involved looking back at his life to see if there were any clues to how ill he would become, and to see if we could identify when it all started.

When he was in the last year of infants (I think that would have been around 6 years old), all of a sudden his behaviour became very erratic.  He would be hyperactive, almost bouncing off the ceilings, then angry and violent (often towards me as a 'safe' person'), then suicidally depressed.  This went on for months to the point where I'd done everything I could but nothing seemed to help, and I couldn't cope.  I finally admitted defeat (it felt), and went to seek help from the GP.  Of course, describing the individual incidents didn't make much of an impression, and whenever Alex had been to the Drs he had always been pretty well behaved, but did agree to refer us to a child psychologist even though he didn't think it was necessary.  I saw the psychologist a few times, both alone and with Alex.  She helped me analyse everything, and find ways of dealing with his behaviour and working out what the triggers were.  It became apparent that a lot of his mood swings were caused by blood sugar fluctuations, so I spoke to the school and made sure that he took a cereal bar to eat at ,id-morning break, and always took something for him to eat as soon as school finished.  The hyperactivity and violence quickly became control able.  But the depression was a frequent visitor. 

Depression is a hard subject for most adults to discuss and deal with, but when it involves young children, it is almost impossible.  How do you tell someone that your child regularly tells you they want to die, or wish they were dead?  And not just while they're arguing with you, when they're in bed crying at night because they are so deeply unhappy although they don't know why.  Who do you turn to?  In my case, I struggled through, trying to deal with it as best I could, all the while blaming myself.  Did he inherit it from me?  Was I causing it somehow?  Why couldn't I make my child happy?  It's a terrible burden to carry.

When he started in the juniors he started to complain of stomach pains, mostly in the mornings when he got to school.  The teachers and I thought it was because he didn't want to be at school, and the unhappiness was making him have the pains.  I repeatedly approached the teachers for support.  I could see he was struggling with the work, but it hadn't been picked up on.  I asked for him to be tested for dyslexia which runs in the family.  Just as we started to get somewhere we would get fobbed of.  It seemed that because he was quiet, well behaved and not totally failing at school, he was falling through the net.  In year 4 the teacher suggested he have his eyes tested to rule out sight problems.  It turned out that he did need glasses and they seemed to help a little with his confidence.  The teacher he had that year was great.  She could see the potential in him and that he just needed help to raise his confidence in himself.  He started to make progress again, and things seemed to be going well.  He still complained of the stomach pains some mornings, but he seemed happier.

Then came the following school year when he seemed to be constantly ill.  Tonsillitis at the beginning of the school year, a nasty bout of flu before Christmas, tonsillitis again in February followed by the abdominal pains which were so awful he felt like he was dying, and lay on the sofa groaning for a month before finally several months later being diagnosed with coeliac disease and recovering so well it was like a butterfly had finally been able to stretch its wings which had been crushed in a chrysalis of pain.  Yes, strange imagery I know, but its very late and I'm rather tired!

Looking at all of this, it seem to me that the coeilac disease was probably triggered during that last year of infant school when his behaviour deteriorated so badly.  Everything makes sense given the context we now have.  He still has times of depression, but they are nowhere near as severe.  He does have stomach pains, but they don't last long and are not as bad.  The sever constipation he had had for as long as we could remember has pretty much disappeared!  Now the only reason he's taking up the bathroom for an hour at a time is because he's reading a book and lost track of time.

What a difference these few months has made.

Now we wait to see the differences in Ruth.  Her symptoms were thought to have been caused by puberty (stomach pains, irritability, tiredness) until we got her blood test results.  Of course, there's no guarantee that we will see a difference, but I'd like to think she will find school easier again.  After a lifetime of swanning through school at the top of the class, this past 6 months she has found it much harder to concentrate.

Endoscopies, Biopsies and Dietitians Oh My

So last week was super stressful. On Tuesday 2nd August, Alex had an appointment at Birmingham Children's Hospital for his endoscopy and biopsy. We had to leave home at 6am to ensure we made it in time for the 8am appointment. In actual fact we arrived at the hospital at 7.10am, before the staff arrived at the Medical Day Care Unit.

The staff were all wonderful, and Alex had a student nurse called Sabrina looking after him, who was a week away from graduation. He was taken down to theatre and put under General Anaesthetic at 9.30am. He was so good and brave. At 10.10am we were allowed to go with the nurses to recovery to fetch him. And by 10.30am he was eating Rice Crispies! He did so well. At 12.30 the consultant came to speak to us. They'd found duodenal ulcers during the biopsy, so had taken biopsies from there, the stomach and gullet as well as further into the small intestine. He is sending us a copy of his report once the biopsies have been looked at by the lab. If the ulcers are just caused by coeliac disease, we will carry on seeing Alex's consultant at the local hospital, and they should heal now he's on the gluten free diet. However, if its more complicated we'll be going up to see him at the children's hospital in a couple of weeks. Hoping and praying it is minor as the alternatives are frightening to say the least.

He also said he'd be seeing Ruth there soon when we mentioned that she'd had a positive blood test, so I guess she won't get to miss out on it after all. Probably best for her to get a comprehensive diagnosis though to put her mind at rest.

We saw the dietitian at Worcester on Thursday. She was lovely and very helpful and supportive. She's faxing through a prescription request to the GP so Alex can get some gluten free food asap. We started the gluten free diet that day, and Friday 5th was his first totally gluten free day.

So we're back to waiting again at the moment - for Alex's biopsy report, Ruth's biopsy appointment and Alex's prescription.

And Ruth too!

Well, Alex's consultant thought it would be a good idea for the rest of the family to get tested as there is a greater chance of having it if a close blood relative does. So a month ago, Ruth and I went to the GP and had our blood tests. I phoned every week to see if the results were back, and then 3 1/2 weeks later we got a phone call saying we needed to go in to discuss Ruth's results. So we knew they'd found something. Mine came back clear though, which was a surprise as I do have a lot of the symptoms.

So today we went and saw the GP, and Ruth's blood test came back positive. It was a surprise as she has had no symptoms. Better to find out now before she does though, rather than suffer for months before diagnosis like Alex.

Ruth is 12, and started High School a year ago, so as a more independent person will have to deal with having Coeliac Disease more herself, for example when going out with friends. Alex has an appointment with the dietitian next Thursday which the GP has said Ruth should attend too as she can ask her more about that kine of thing.

Alex has his biopsy at the Children's Hospital next Tuesday. The GP is hoping that because of the family history, she and the consultant can diagnose Ruth without the need for her having the biopsy too. The blood test doesn't give false positives, just false negatives apparently.

Now my husband just has to have his blood test. Potentially I could be the only member of the family who isn't coeliac! But since I do have symptoms I'll probably get gluten-free as well. Since at least half of the family are coeliac I think we'll all eat gluten-free most of the time.

In the beginning.....

Or a brief history of Alex.

Alex was born almost 2 weeks overdue, nearly 10 years ago. He weighed 7lb 8.5oz, so was pretty much average for a boy. For the first few weeks he was putting on weight perfectly fine. Then at baby clinic when he was about 2 months old we discovered he had suddenly stopped gaining weight. He'd gone from just below the 50th percentile, to close to the 2nd. At the time it was thought that I was not making enough milk, or that he was just not feeding properly, so we started supplementing the breast feeds with bottle feeds, and weaning him onto baby rice at 3 months. From this point on, his weight remained fairly stable around the 9th percentile.

His entire life we had people regularly comment on how thin he was. His ribs and other bones were visible, and people would start when we went swimming/on the beach etc. I would often speak to the GP about his weight when we went for a consultation if he was ill, and was always told that some children just are very slim, and that he would fill out when he was older. His father was very thin as a child, so it was thought Alex's thinness was genetic. He usually had a lot of energy, and enjoyed karate, football with friends and skateboarding.

He often seemed to suffer from bouts of depression, which didn't seem right for a small child. He didn't find school easy, and it took us asking from the beginning of year 3 to the end of year 5 to get an assessment.

Alex tended to get ill quite often. Not serious things, but a lot of coughs, colds, and regular bouts of tonsillitis which made him really ill.

At the beginning of February 2011 he was really ill with a particularly nasty case of tonsillitis. He had to have a week off school and antibiotics. The day before he was due to return to school, just as he seemed so much better and almost back to his normal self, he started to experience terrible abdominal pains. These left him crying and moaning doubled over on the settee. We went to the GP who diagnosed Mesenteric Adenitis - an inflammation of the glands under the abdominal muscles, which although painful would go away by itself within 10 days. After 10 days Alex was still in constant pain, groaning the entire time he was awake. He didn't leave the sofa for 2 weeks (other than to use the bathroom) - not even to play on the xbox360 which he loves so much.

Back to the GP we went. He was stumped, and contacted the hospital who said Alex should be admitted for investigations. A whole raft of blood and urine tests were done, which showed nothing. He had his abdomen x-rayed, but this only showed a stomach shadow. One consultant thought it was appendicitis, but the surgeon examined him and said it wasn't. So we stayed over night, Alex with a drip in his arm, and waited for more doctors to see him in the morning.

Doctors rounds in the morning, and Alex's bed was surrounded by lots of junior doctors and students as well as a lovely consultant. The consultant was wonderful. Knew exactly what to say to put Alex at his ease. He thought that Alex was severely constipated from being dehydrated during the tonsillitis, and prescribed an enema and medication to get his bowels into a regular pattern.

Alex was discharged that evening after the successful enema, and with a big box of Laxido powder. The Laxido sorted out his bowels, but the pain although lessened never went away completely. So back we went to the GP (a different one this time) who thought it might be stress related, and gave Alex medication for stomach migraines. All through this episode, we have faced constant implications that the pain was either in Alex's head, that it was caused by stress, or somehow by my worrying! Well, we finished the bottle of migraine medicine but it didn't help at all. Alex was back at school by this time, doing as much as he could. The school were aware of the situation, and were pretty supportive. In total Alex was off school for almost the entire month of February, first with tonsillitis then with the abdominal pains.

After the migraine medicine did nothing at all, we went back to the GP again. This time we saw the first GP again. He decided to refer Alex to the paediatric clinic as an outpatient. Of course this being the NHS it took 2 months between seeing the GP and seeing the consultant.

We were very happy to discover the consultant Alex was seeing was the one who'd been so nice at the hospital. He even remembered Alex (it had been 3 months since he'd seen him), and that while he'd been in hospital he'd eaten lots of bowls of Cocoa Pops! The consultant told us that if nothing else showed up, abdominal pains are just classed as Irritable Bowl Syndrone, and that it was likely this would be the case with Alex, and that he would be referred to a psychologist to help him deal with it. He wanted to rule a few things out first though, so took bloods to test for coealiac disease, chron's disease and food allergies, as well as sending him for an ultrasound. He reviewed the bloods taken at the hospital and saw that Alex had iron-deficiency anaemia with small red cells, so started him on iron supplements twice a day.

The more I read about coealiac disease, the more things seemed to fit into place, but a month later we still had not got the appointment for the ultrasound through, and as we hadn't heard about the blood test results, we thought they must have all been negative.

Then out of the blue yesterday (Tuesday 21st June 2011), I got a phone call from the consultant Alex has been seeing. He said the test for Coeliac Disease had been positive, and that Alex would need to go to the children's hospital for a biopsy. He's referred Alex to a Dietitian, and said he will be able to get various foods on prescription.

So finally we got somewhere! All those Drs, teachers etc who implied it was in Alex's head couldn't have been more wrong. I am so thankful that we had such a thorough and kind consultant.

The consultant has told us to get tested too, as he thinks what was diagnosed as IBS when I was pregnant with Alex may well be coeliac disease. So my daughter and I are off for the blood test next week.

We have to carry on with wheat until after the biopsy, but the consultant is fairly certain it will be positive. And then everything will change! I am so glad that we have finally got to the bottom of the problem, so we can get him better. I know it won't be easy, but I'm sure we'll all get used to it pretty quickly.

I plan to use this blog to keep track of developments in Alex's diagnosis, and then how we cope with living with Coeliac Disease. It will be a good place to share recipe ideas too. Alex is a very fussy eater anyway, and we're all vegetarians so added complications!

If anyone has any websites or books they can recommend, that would be great! Would love to hear from other coeliac parents too :)