I lost two babies in shattering miscarriages... all because I was allergic to gluten
By
Lisa Buckingham
Last updated at 10:16 AM on 28th April 2009
Cured: After two miscarriages,
Janet Hewitt suffered stomach upsets and chronic
exhaustion. A gluten-free diet solved her problems
When Janet and Andrew Hewitt started trying for a family, they thought it would happen easily - they were both fit and apparently healthy. So when, after 18 months, Janet still hadn't managed to conceive, they began to wonder if something was wrong and underwent fertility tests.
'But everything came back normal, so we were sent away and told to keep trying,' recalls Janet.
Janet conceived six months later, but the couple's joy was short-lived as she soon started bleeding; a scan showed the foetus had died.
'I was devastated,' she says. 'There were a lot of tears, but we started trying again immediately to help us get over it.'
After four months Janet was pregnant once more. 'I was nervous this time around and booked myself in for an early scan at seven weeks,' she says.
Once again it was bad news - the foetus had stopped developing.
'I was so upset, but oddly a little less so than the first time because I had steeled myself for bad news. Andrew and I then decided that if a third attempt was unsuccessful, we would stop trying and perhaps consider adoption or fostering. The miscarriages were emotionally too painful and I didn't want to go down the IVF route as I found the idea very stressful.'
Janet, then 40, and Andrew, 34, were sent for more tests, but they all came back clear. 'We were told to just keep trying as there was no medical reason for the miscarriages.'
Six months later, Janet became pregnant for the third
time. 'I was overjoyed, but the stress of the two
miscarriages meant I was terrified something would go wrong
again. I had an early scan at seven weeks to check
everything was OK.'
It was, and her son Alex was born in July 2004 after a
trouble-free pregnancy.
Yet not long afterwards Janet began to have chronic stomach upsets. 'It felt like food poisoning, though there was no reason for it; I also had chronic diarrhoea. This would happen about once a month and last 24 to 48 hours. My stomach would bloat right out and sound like a coffee machine gurgling.'
Within weeks she also lost 2st, going from a size 14 to
10. She also felt tired all the time. 'I'm 5ft 3in, and at
7st 7lb I looked too thin. My GP diagnosed anaemia. I was
given iron supplements and told to eat plenty of iron-rich
foods, such as red meat, but it made no difference.'
My stomach sounded like a coffee machine gurgling
After the birth of her second child, Tom, three years ago, Janet was still suffering the stomach upsets; she was also underweight and chronically exhausted, more than the other mothers she knew.
'If I wanted to do anything in the afternoon with the kids, I'd have to rest in the morning,' she recalls. 'I had to get the shopping delivered because I couldn't muster energy for the supermarket, and I was very irritable with a vile temper.
'My husband wondered what on earth was happening to me.
Whenever the stomach upsets came, I couldn't be away from
the loo for more than a few minutes, which is tough when
you're looking after two small boys.'
Every month she went back to her GP for more blood tests, which showed she was still anaemic despite taking the iron tablets. 'The doctors just kept saying anaemia can sometimes last after pregnancy, and I'd soon be back to normal. They had no explanation for the stomach upsets.
'One suggested a stomach ulcer, but then changed their mind and said they would probably just go away. It was very frustrating. Eventually a friend suggested I tried cutting out dairy products, which aggravate stomach problems. It helped a little, and I told my doctor this.'
Finally, three years after first experiencing symptoms, Janet was told it might be food intolerance or giardia (a parasite that causes stomach upsets and weight loss). Her doctor gave her a blood test and sent her to a consultant gastroenterologist.
The specialist said that, in fact, all her symptoms - including, possibly, her miscarriages - were down to coeliac disease.
This is an immune system disorder caused when gluten (a protein found in grains such as wheat, rye, barley and oats) triggers abnormal reactions in the gut, leading to inflammation and tissue damage.
Symptoms include digestive problems such as bloating,
abdominal pain, diarrhoea or constipation and heartburn.
However, these are not always present.
It was such a relief to know I wasn't just falling to bits
Coeliac disease can cause many other problems, including weight loss, tiredness, headaches and defective tooth enamel, as well as iron, calcium and vitamin B12 deficiency - damage to the gut lining means you don't properly absorb vitamins and minerals.
This is thought to possibly explain other symptoms linked to the disease such as recurrent mouth ulcers, infertility, osteoporosis, recurrent miscarriage, joint or bone pain and neuropathy (numbness and tingling in the hands and feet).
Unlike food allergies, coeliac disease develops over a long period. Misdiagnosis is common - patients are often treated for indigestion or irritable bowel syndrome, for instance. The average time it takes to receive the correct diagnosis is 13 years, according to charity Coeliac UK, which is launching an awareness campaign next month.
There are 125,000 coeliacs in the UK but research suggests just 12 per cent of those who have the disease have been diagnosed; this means half a million of us don't realise we have it.
'The problem is that it often causes symptoms not specific to the bowel, such as lethargy and weight loss,' says Peter Howdle, professor of clinical medicine at Leeds Medical School and chair of the charity's advisory council. 'This means other options, such as chronic fatigue and depression, are explored long before anyone thinks of coeliac disease.
'Some people suffer no symptoms at all. Left untreated, as well as causing osteoporosis, it can occasionally affect fertility. I'd say if anyone is having problems with conceiving or recurrent miscarriage, it could be worth mentioning coeliac disease. It's only a slight risk, but it's there all the same.'
The disease, which sufferers are born with, most commonly appears either in early childhood, when a baby is weaned on to solids, or in the 40-to-60 age group - it's thought stressful events may trigger symptoms. 'My doctor said I'd had the disease all my life, but that the stress of my dad's death soon after having Alex might have triggered the obvious symptoms,' says Janet.
Coeliac disease can run in families, though most people,
including Janet, have no family history.
I wish I'd been more pushy
with my doctors
The good news is that, once it is diagnosed, the disease is easily treated by cutting out all gluten from your diet. 'I had a biopsy to confirm the diagnosis then immediately cut out all gluten on the advice of my doctor,' says Janet. 'The results were miraculous. Within months, I'd gained weight, the anaemia disappeared, I got my energy back and the stomach upsets never happened again. It was like getting my life back.
'It was such a relief to know I actually had something wrong with me and wasn't just falling to bits. I just wish I'd been diagnosed earlier, as it would have made a real difference - particularly as I now know my miscarriages may have been linked to the disease. After meeting others with coeliac disease, however, I realise I was relatively lucky.'
Even though the gut can be badly damaged by the disease, it regenerates once gluten is eliminated from the diet. 'Your gut can be back to normal and perfectly healthy within a few months,' says Professor Howdle. 'However, you'll always have the disease, so can never eat gluten again, even once you feel well.'
Last year, scientists announced that a new drug, called AT-1001, could help protect the gut against attack from gluten. Trials of the drug are under way. It is hoped it will mean patients will not need to be as strict about gluten elimination. Australian researchers are also testing a vaccine to 'retrain' a patient's immune system to tolerate the protein.
Yet the key problem remains misdiagnosis. If you suspect you have the disease, ask your doctor for the simple blood test that picks up the antibodies it produces. Self-diagnosis is a risk because people end up cutting out important food groups inappropriately, further compromising health.
'It's very important not to cut out gluten before you're tested as it can affect the results, too,' says Professor Howdle. 'And don't even cut it out after you get a positive blood test as it will affect the results of the biopsy that provides a definite diagnosis.
'Only after the biopsy can you eliminate gluten and, even then, it's important to see a dietitian as gluten can be hidden in foods such as stock cubes and chocolate.
'The blood test to detect coeliac disease is only 90 per cent accurate and can sometimes be negative even when you may have the disease, so if you continue to feel ill, seek further investigation with a biopsy.'
Janet says: 'I wish I'd been more pushy with my doctors, but I trusted them when they said I'd get better. Still, I'm not resentful of the disease - it's not the hardest thing to cut out gluten, although I do miss Yorkshire puddings. The miscarriages were truly awful, but, thankfully, I have my two lovely boys and I'm so happy to be feeling well again.'
* For more information, visit Coeliac UK at www.coeliac.org.uk or call 0870 444 8804