I have suffered for years with gluten/wheat intolerance but never came up positive with the Coeliac antibody test. I don't have the "standard" Coeliac symptoms of diarrhoea and weight loss, I'm more the other way plus weight gain but I do get stomach distention and sickness etc.
I was referred to a consultant at our local hospital and all he seemed to be bothered about was whether I had diarrhoea or not. I've worked with others who have auto immune disease and allergies for a few years now so I do have a a bit of experience myself and although I'm not an expert, I feel I've more knowledge than a lay person!.
The consultant told me that the only way I could be tested to see if I was Coeliac was (and as you all probably know) to eat gluten for 6-weeks and have an endoscopy.
I reminded him that I had come up negative for the antibody test and asked that if my endoscopy came back negative what would that mean. He told me that they would just class me as having IBS!!!! I told him that what he was saying was equivalent to stating that I had cancer but that he didn't know what kind!! (sorry, I know for some that analogy might be a step too far but it's the only one I could come back with as I felt so incensed!).
I did ask about non Coeliac gluten sensitivity and I even showed him an article I'd brought along with me about it but he totally poo pooed it!
I broke into tears when I left the hospital - I've not eaten wheat since 2001 and gluten since 2011 and I couldn't bear to go back to eating something which would make me very very sick! I have a son aged 7, a husband, a business and a life for goodness sake!
I rang my nutritionist and asked her if there was any other option - she said that I could have the Coeliac Gene test but I would have to pay for it. At least it might confirm a few things for me without having the endoscopy.
I tested positive for the gene and due to the fact that my 7 year old has been presenting the same symptoms as me for nearly a year now and in fact, he's had problems with wheat/gluten for 2-3 years we also had him tested and he came up positive for the Coeliac gene.
Thing is, my father in law is a scientist and my sister in law is a doctor and they think that me and my husband are talking rubbish when we say we're taking gluten/wheat out of our son's diet.
My father in law trawled the internet for a few hours for scientific papers disproving the links between the Coeliac gene and Coeliac disease. We had a huge row about it at the weekend before he did this but now he's done a bit of research and probably talked to my sister in law (the doctor) he thinks he knows everything about the condition.
What kills me is that he has no idea what it is like to live with something like this and especially when neither myself or our son has been "Medically" diagnosed.
I know that we could possibly have Non-Coeliac gluten intolerance or I could just have misdiagnosed Coeliac disease but I have the gene so what the hell does that mean - I need to know what you guys out there think? What have you come across? Is there research proving the gene link to Coeliac disease and if so where can I find it? What does it mean for my son - he's having symptoms at this age so does that mean the chances of him developing it are higher or could he already have it but that it's undiagnosed?
It seems that the testing regime for Coeliac disease is so narrow that they are missing out loads of us anyway!
Do I have to go through the endoscopy after all - I mean, I'm not eating gluten or wheat but in order for people to take my son seriously maybe I need to have it?
I've also been told by the school dinner provider Chartwells that I will need a letter from my GP in order for them to provide a gluten free lunch as he has hot dinners at the moment! The GP isn't that good either - I had to really push just to get a referral to a consultant so she's highly unlikely to send a letter when it's not been "medically proven"
Our son is already eating a low gluten diet at home as we don't eat any here at all - the only place he eats gluten really is at school.
If anyone has got any research they can point me to so that I can prove to these disbelievers that there is more to this condition than what is currently medically available to prove!!!
Sorry for the long post but I feel really desperate about this!