Doctors: Learn to Diagnose Celiac Disease!

Once a rare and virtually unknown disease in the U.S. celiac disease, or gluten intolerance, has become fairly well known and understood. Even better, there are many resources available for dealing with it, including many foods that are gluten-free as well as lactose-free. The lactose-free foods part is necessary because celiac disease destroys the villi, the tiny projections on the insides of the intestines where the lactase enzyme is made.

I've covered this topic in several recent posts, including Gluten-Free, Casein-Free (GFCF) Diet Helps Autistic Children, The Gluten-Free Restaurant Awareness Program (GFRAP), and New Gluten-Free, Casein-Free Diet Cookbook.

Apparently, celiac disease, or as they spell it coeliac disease, is not as well known in the U.K.

It's absolutely chilling to read Family's battle to have disease diagnosed by Lucia Clifford on the Warwick Today website.

To see her now, Summer Wareing is like any other active five-year-old.

She began to suffer with the symptoms of coeliac disease, but doctors put her ill health down to a reaction to her recent MMR booster.

Summer continued to suffer with severe diarrhoea and her condition was so bad, her mum Ruth took her to the doctor every couple of weeks. She was told to stop being 'neurotic' and that children pick up all manor of bugs.

As the weeks passed, the three-year old was losing more and more weight and had her tummy had become extremely bloated.

Ruth, of Burton Green, said: "After one particularly bad night, I took Summer to our local A and E department where the doctor just laughed and said: "It's the weekend, what do you want me to do about it?"

...

Out of sheer desperation, they turned to private medical care. However, even this was not straightforward and the family had to persist before Summer finally had a blood test for coeliac disease.

When the results came back positive, her family were just relieved to finally have an answer, a diagnosis. However, unfortunately they couldn't begin to help their daughter by starting her on a gluten-free diet until she had had a biopsy to confirm the diagnosis. By the time biopsy was performed, Summer had no villi left in her intestines, which had led to an intolerance to lactose and she weighed less than when she was 18 months old.

Ruth added: "Trying to feed her on a gluten-free diet was a nightmare, she had become so afraid of food, all she knew was that when she ate her tummy hurt. Her doctors told me she was becoming a fussy eater and that we were making her worse because we were being sympathetic to her."

Eventually Summer did begin to trust again and did begin to eat but it wasn't easy trying to find gluten-free foods, while also omitting milk (due to her lactose intolerance), that would entice a three-year old.

Now five years old, Summer is thriving and according to her mum 'has way too much energy'.

It's hard to know whether this is an indictment of Britain's National Health Service (NHS), or just a general lack of knowledge among U.K. doctors.

Either way, the government doesn't come out very well.

People diagnosed with coeliac disease can be prescribed an NHS prescription for basic food including bread, pasta and flour.

Due to current funding considerations within the NHS, some PCTs have sought to restrict or stop prescriptions for gluten-free foods. Due to the comparatively high cost of gluten-free food for many people on lower incomes the prescriptions are essential to ensure they maintain a healthy diet. Coeliac UK has opposed measures to restrict prescriptions where it effects staple foods.

Coeliac UK is "the charity for people with coeliac disease and dermatitis herpetiformis*." Looks to be lots of good information and lists of gluten-free food on the site.

And try to make doctors aware of the problem so that no future Summers are so dark and stormy.


*"Dermatitis Herpetiformis (DH) is an important associated disorder or complication of celiac disease which is manifested in the form of a skin rash. There is strong evidence that the changes in the intestinal mucosa and the immunologic findings in the majority of patients diagnosed with DH are identical with those found in celiac disease. Gluten has been found to have a close relationship with this skin rash. DH is often referred to as "celiac disease of the skin" while CD is referred to as "celiac disease of the gut."
from the Celiac Sprue Association.