Posted by glutenfr | Posted in News, Science | Posted on 14-11-2011
Tags: coeliac, scientific developments
Gluten free pizza - one of the major food groups for the gluten intolerant.
I know it’s controversial, but we’ve never been tested for coeliac disease. We gave up gluten following an elimination diet that involved removing lots of different things from our diet and then introducing them back in.
Guess what was causing the most trouble? When we quit the gluten, my son’s behavior improved and my eczema completely disappeared.
Doctors don’t like this type of self-diagnosis for good reason. They say it’s really important to exclude Coeliac Disease before you cut out gluten. Also, some people continue on a gluten free diet even though it doesn’t fix their gut symptoms. This stops them from identifying the real source of their ills and unnecessarily deprives them of a nutritious food group.
My justification has been this: we didn’t have any obvious gut symptoms. Also, one of my sister’s sons, who had textbook coeliac symptoms for years, went through all those tests and biopsies only to come up negative. He never did get an explanation for his chronic tummy troubles—and has still never tried a gluten free diet.
But now proposed new guidelines expected to be published early next year aim to broaden the diagnostic criteria of coeliac. The suggestion is that coeliac may be diagnosed even when biopsies show only mild intestinal damage, a move that could potentially double the number of diagnoses.
In this case, a diagnosis would also take into account a person’s symptoms, as well as other evidence such as family history, presence of anaemia, serology blood tests and gene tests.
My feeling is that this may continue to exclude a sub-sector of people who still find they are gluten intolerant. Researchers have found it is possible to be gluten intolerant without testing positive for coeliac.
I asked coeliac researcher and gastroenterologist, Dr Jason Tye-Din whether gluten intolerance is a sign of early coeliac or a different condition altogether. He says though more research is needed, he suspects the latter is more likely. Here’s the low-down on gluten intolerance in his words:
“Findings to date indicate the process is very different to what is happening in coeliac disease in that the immune system is not reacting the same way to the relevant gluten fragments causing coeliac disease. It may be a different process altogether, such as allergy. Hopefully the next few years will uncover more clues. I never diagnose non-coeliac gluten intolerance until coeliac disease has been adequately excluded.”
So maybe it’s time to get that test after all.
Mandy
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I was told to go off gluten by my doctor in January 2010 due to the fact that I have Chronic Fatigue Syndrome. I had to move house in July this year and ended up having to get a new doctor who did loads of blood tests and he told me I was coeliac – apparently it showed in a blood test he’d ordered even though I haven’t had gluten since Jan ’10 apart from being painfully glutenised twice in that period. My daughter was told to go off gluten in November last year as she had coeliac symptoms (sudden intolerance to dairy, hot flushes, dizziness) but hasn’t been tested for it – she loathes having blood tests as she has an extreme phobia of needles so since my diagnosis she is treating hers more seriously and not being a gluten cheater which she thought she could get away with just being gluten intolerant. Hopefully the more of us that are positively identified the more we will show up statistically and with a bit of luck more will be done in our nation for coeliacs.
I totally agree, there needs to be better diagnostic tools. My son has been tested for coeliac and it came back negative. So did I. I had the genetic test, negative. Going gluten free has eased my GI symptoms and his, but has also changed his behaviour, concentration and ability to have fun!! Also, my rheumatiod arthritis has all but gone after a year on gluten free. It is truly amazing. There is still so much to learn and I wish more doctors were willing to learn. My old doctors solution to my problems (and my son’s – who was 2-5 when we saw him) to “take laxatives” for chronic constipation and to take stomach eating anti-inflammatories everyday for my arthritis. I hope testing becomes more inclusive and more thorough. There are so many people I know who have non coeliac gluten intolerance. The current testing is inadequate and it then gives others a chance to judge on the decision to choose to go gluten free. Like its something that we’d readily choose if it didn’t help!!! Great post!!!
I had the biopsy twice, first time there was no damage, second time there was. I think it depends where they take the sample etc which is pretty frustrating!
we’ve had the opposite problem in our family. I had no symptoms but blood tests showed I could have coeliac disease. Biopsy confirmed that I did. Change in diet has done nothing obvious for me. Now husband who is a carrier (but all other blood tests look ok) has been told he needs a biopsy. And he was told to eat more gluten than in his usual diet before hand. Sounds like a con to me. Apart from very obvious cases (my daughter) I think there is a huge grey area in the middle.
Very interesting article! Thanks for posting it. I had ill health all my life, and coeliac disease runs in my family. I had millions of tests, but not a biopsy. No doctor could work out what was wrong with me. Gut trouble, fogginess, joint pain, headaches, skin rashes, extreme fatigue, slight ataxia. In the end my doctor got sick of me and said, just try not eating wheat. After years of ill health I was totally well two days after stopping eating gluten. And yet, no doctor will say I am a ceoliac, as I have not had a biopsy test. If I want to have the biopsy diagnosis, I have to eat gluten, and I can’t afford to get that sick again. So I don’t care, I just don’t eat gluten any more and I am well! The biopsy requirement for a diagnosis is just silly in my case, I reckon.
Thanks for sharing – I think a lot of people are in the same boat…