Diagnosis

You Will Never Guess What is Associated with Gluten Sensitivity

This is a guest post by Julia Wiesniewski, who lives gluten free to help with her fibromyalgia.

If you are reading this blog, then likely you or a loved one has gluten sensitivity. Chances are, though, that you are unaware of all the different kinds of health conditions that are associated with gluten sensitivity and celiac disease. Here is a list of conditions and disorders that you may not have realized are associated with a gluten sensitivity or allergy.

  1. Blood deficiencies.
    An inability to absorb gluten is associated with a deficiency in many vitamins and minerals in the blood. You need to visit your doctor to take a blood test and determine if you need to start a supplemental regimen. The deficiencies range from Vitamin A to Zinc.
  2. Addison’s Disease.
    People with celiac disease are 11x more likely to develop Addison’s Disease according to a Swedish study. Addison’s disease is when the adrenal glands don’t produce enough hormones causing symptoms similar to IBS, which brings me to my next point.
  3. Irritable Bowel Syndrome.
    Symptoms of IBS include bloating, abdominal pain, constipation and diarrhea. If you experience discomfort often during the month, you should see your doctor to see if IBS is responsible.
  4. Fibromyalgia.
    IBS is found in 30-70% of fibromyalgia patients. Fibromyalgia can have many symptoms that range from chronic pain and fatigue to episodes of extreme pain. There are many support groups, such as the FMS Community, that help those suffering from this illness find support.
  5. Arthritis.
    Anti-connective tissue antibodies are found in increased numbers in patients with celiac disease. Arthritis is becoming more and more manageable with new drugs on the market.

As with any kind of diet or disease that affects the nutrients you receive from food, there can be widespread effects throughout your body. Don’t let this list scare you into thinking that you have any of these conditions. Talk to your doctor about your concerns in terms of your health and s/he will help you.

Lastly, living gluten-free can be a very manageable lifestyle. You don’t have to give up all your favorite foods like bread or pasta. You can buy a gluten free bread maker, gluten free flour or gluten free pasta. There are many of us living without gluten and our community can provide a lot of support.

Thanks Julia!

Julia Wisniewski has been living with Fibromyalgia her whole life. She blogs for Bready, the gluten free bread machine company, about her experiences with FM and living without gluten for GF communities. In her free time, she likes to read and her guilty pleasure is reality TV.

Diagnosed Doctor Supports Coeliac Petition

Dr Chris Steele at 10 Downing StDr Chris Steele handed in a petition to 10 Downing Street today, calling on the UK Government to help improve the diagnosis of coeliac disease – a condition with which he has just been diagnosed.

8,783 people (yes, including me – did you sign?) are asking the Government to find the half-million people in the UK at risk from undiagnosed coeliac disease by introducing a target for diagnosis to the GP contract. The idea is that setting targets changes behaviour (just as in any management situation) so if GPs have to list how many people they’ve diagnosed this year, they will actively be looking for the disease.

I’m not sure whether the idea is that they get paid on results, as they used to in some cases for vaccinations (and may still, for all I know), but that really doesn’t matter for the individual who is diagnosed

It is estimated that 1 in 100 people in the UK have coeliac disease, but that only 1 in 8 have been diagnosed. As you probably know, untreated coeliac disease can lead to infertility, multiple miscarriages, osteoporosis and bowel cancer – and the treatment is a gluten free diet.

Dr Chris Steele MBE is one of our television doctors (on This Morning, which I catch at my hairdressers every six weeks or so – I do remember that he was ill at some point before Christmas), and has been Ambassador of the charity for the last three years. He says:

“I have supported the need to raise awareness of diagnosing coeliac disease for many years but never thought that I would be diagnosed myself! It is a condition often over looked and misdiagnosed by GPs, which has resulted in half a million people in the UK currently undiagnosed. Consequently, people are suffering unnecessarily for many years which can also lead to an increase risk of osteoporosis and bowel cancer. There is also the possible increase cost to NHS caused through undiagnosis, by ongoing repeat visits by patients to their GP, and we also know of people having unnecessary operations such as gall bladder removal when a simple blood test could start the road to diagnosis; so I urge the Government to include a target for coeliac disease into the Quality and Outcomes Framework”

I think that finding those people who are as yet unaware that they have coeliac disease has got to be a good thing – as has speeding up the time to diagnosis. Targets are always difficult things to set, as people tend to act to fulfil the targets, so you have to be sure you have the right ones. However, this one seems straightforward enough, assuming that the funds will be there to cover an additional 500,000 biopsies and blood tests.

What do you think?

Image Credit: Chantal Richards

Glad to be coeliac: osteoporosis, the hidden threat

dairy-productsWe caught the end of a programme on Radio 4 this afternoon, while driving, which caught my daughter’s attention. “Like me!” she said, when the speaker revealed that she’d been diagnosed with coeliac disease.

The programme was actually about new treatments for ostoporosis, but – helpfully – the risks of developing osteoporosis as a result of undiagnosed coeliac disease were clearly stated.

Luckily, the woman speaking on the radio had been diagnosed with coeliac disease, and as a result, was automatically sent for a bone scan, which caught the osteoporosis. She’d never broken a bone and had no idea she had osteoporosis. As a result, she was delighted to have been diagnosed as coeliac!

The problem with undiagnosed coeliac disease is that valuable nutrients are not being absorbed, with the resulting damage to bone. Coeliacs who’ve been gluten free for long enough will in most cases be absorbing these nutrients again, because the lining of their small intestine will have healed. My daughter’s risk of bone damage is minimal – she’s had years to rebuild her bone strength. But there it is: one very good reason not to cheat. As if you needed any more reasons…

If you’ve recently been diagnosed as coeliac, and you’ve not had a bone scan to check for osteoporosis, then perhaps you should ask for one. As well as remembering to eat calcium and do some exercise!

If you’re interested in the osteoporosis programme, you can find it on the BBC website at the moment, and it will probably be there for a while longer: http://www.bbc.co.uk/programmes/b00q3gjn.

Also available via the BBC site is the FRAX risk assessment tool to assess the probability that you’ll suffer a broken bone in the next decade, based on gender, BMI and medical history. Definitely worth a look.

Coeliac disease, diagnosis and petitions

signatureIf you’re a UK citizen, and are concerned about those people who have undiagnosed coeliac disease, then please consider signing the petition now available via the 10 Downing Street site.

It is asking ‘the Prime Minister to find the half million people in the UK at risk of serious damage to their health from undiagnosed coeliac disease by including a target for diagnosis in the Quality and Outcomes Framework of the GP contract’.

You know what they say: you get what you measure. If doctors have a target to meet, then they might have testing for coeliac disease higher up on their agenda … it works for infant vaccinations!

Signing the petition is easy. You do it online, here:

http://petitions.number10.gov.uk/coeliacdisease/

Then they’ll send you an email to confirm that you are a real person; click the link in the email and you’re done.

Go on – and have a look at the other petitions online while you’re there. Interesting!

Have you got Steatorrhoea?

If you’ve got it, you’ll know. Believe me, you’ll know, even if you don’t know what it is called. And if you’re here looking for help with this symptom – welcome!

Anyone reading this over their breakfast, look away now. Better, come back later, when you’ve finished.

steatorrhoea - colours I have known

You may remember that some time ago I posted a picture of the Bristol stool chart. (This is in fact one of the most popular pages of this site.) I was impressed when the doctor pulled this chart out, so that I could point to the product most like that of my one-year-old daughter, before she was diagnosed. OK, I can’t resist it … here’s the image again.

But I do remember thinking at the time, that what he also needed was the equivalent of a paint chart. When I was asked what colour were her stools, I resorted to looking around the room to find something that was the approximate colour. Turned out to be the fireplace. Look at the left hand end of this bar of colour …

steatorrhoea - colours I have known

Yes – very pale, and very distinctive! But I think there’s probably a range – I’ve seen stools anywhere along this range of colours before diagnosis. After diagnosis, then the colour range has been much closer to that of the Bristol stool chart.

So what was it?

This is steatorrhoea, which is an excess of fat in faeces.

The stool may float due to trapped air. It is also pale in colour (see my paint chart!), and there may be drops of oil visible in the toilet pan after flushing.

The reference documents say it may be foul-smelling. In my experience it has an extremely strong, very distinctive and vile smell. ‘Foul-smelling’ is a very mild description …

Steatorrhoea is a classic symptom of coeliac disease. It’s not the only one, and you can have coeliac disease without this symptom, but if you have it, you should get checked out by a doctor.

Apparently, in coeliac disease the level of fat excreted is usually between 25 and 30 g per day. In case you were wondering, the normal level is about 9 g per day. And checking the level of fat in the stool is, indeed, one of the screening tests that can be run.

We dutifully collected a stool sample to be sent off to the lab all those years ago, but it must have been quite obvious from the moment I pointed at the very pale beige of the fireplace, that something wasn’t right.

OK, you can go back to your breakfast now …