Blood test alone diagnosis: from Lyn on 2007-04-03
I became very ill about a year ago, and after being dismissed several times by my doctor as having a 'bad tummy bug' I went investigating on the net and found out about coeliac disease. Two weeks later the blood tests I had forced my doctor to do came back showing I had very high levels of whatever it is that shows coeliac. As I was fed up of spending half my life on the loo, my dietician and I agreed I start a gluten free diet.
That was a year ago and I have never felt so well in my whole life. I've had less other illnesses too, like colds, and am now pretty much used to being gluten free. The only annoyance is trying to eat out, as most restuarants sadly still think gluten free is a crazy fad thing, but awareness is getting better. And I do still miss big BLT baguettes!
I have one problem though - I'm not properly diagnosed. My doctors, I have been to three now, refuse to acknowledge the blood test result and are insisting I eat gluten for six weeks to have an endoscopy. I have told them this will make me ill and asked them how I'm expected to live a normal life if I'm ill every time I eat, but they have told me its something I have to deal with. I find this quite frankly ridiculous. I am 21, 5'5" tall and only weigh 8 stone, so am technically underweight as it is. Having my food shoot through me for six weeks is likely to land me in hospital on a drip. But no, still the specialists want me to do it.
Please can someone advise me if there is a way around it. I can't go through that again, it ruined my work and social life and made me feel so unwell and depressed. The blood test results are still sitting there a year on, and it is obvious to anyone that since being gluten free I have been fine. Has anyone else experienced this problem, and if so, what did they do about it?
Blood test alone diagnosis: from Sarah on 2008-01-20
It is so reassuring to hear of someone else in my position. My advice (after experiencing the same problem with my doctors) is to ignore them!!! You don't need the biopsy to confirm your illness, if you are feeling 100\% better like I am and you are happy to follow a strict gluten free diet for the rest of your life; then why put yourself through the pain?
I have changed my doctors twice and have finally found a doctor who is willing to prescribe me gluten free food without the additional tests.
I hope this helps; we must fight against the arrogance of these "general practioners" who quite frankly don't have a clue what it's like to deal with this condition
Blood test alone diagnosis: from Andrew Peake on 2008-01-28
My blood test showed I had not got coeliac disease. My GP put me on a gluton, wheat and dairy free diet. He diagnosed gluton intolerance. My symtoms have now stopped after being on this diet for about 3 months. He now wants me to reintroduce gluton. Howevr, I am reluctant to do this as I was poorly for about a year and dont wish to go there again. What shoud I do. My GP has been supportive but hsa not relly said how I should go about this. Any ideas would be apprecited.
Blood test alone diagnosis: from Alison Thomas on 2008-04-18
I had the same problem im afraid and in the end just I had to do it. On the plus side whilst it did make me ill again, it does mean you will be able to start getting food on prescription.
At the time this was a big deal for me, however now with the amount of food available in supermarkets etc. its probably not as much of an incentive.
Its such a shame that some doctors are not more aware of testing for ceoliac as then you could have had the biosy straight after the blood test!
I got diagnosed at 9 and was really anemic and skinny with a such a huge bloated stomach that nothing would fit me, i even got sent along to a psycologist as they though i was secretly bulemic even though, as my mother correctly pointed out i ate everything put in front of me! It was a good couple of years and dozens of doctors before i was finally diagnosed.
I would reccomend that you get all your family to have the blood test, its quite likely that within your close relatives someone else will have it too, even ifthey are not suffering severe symtoms
Blood test alone diagnosis: from Heather Angel on 2008-05-30
You have do have a choice. My eight-year-old diabetic daughter's CD was picked up through routine screening (blood test). We were advised that the next stage would be to confirm the diagnosis with a biopsy. We politely declined this offer and she is now on a gluten free diet. Who is the "proper diagnosis" for? You seem to be very clear about what is happening. Why do you ned a label? If were you, I would keep looking for a more sympathetic doctor
Blood test alone diagnosis: from Patsea on 2009-06-06
I have that problem, but my doctor accepted it after he just calls me gluten intolerant instead of celiac. The main reason for the test is to persuade people they have to do a difficult diet to stay well. You are already persuaded
Blood test alone diagnosis: from Michele on 2009-11-24
I had the same blood test as you, with the same result ,and have since had a biopsy of the lower intestine too. The biopsy is complete confirmation for a coeliac as they can see under a microscope any damage done to the villi, caused by coeliac disease.
As I am still waiting for my results, I asked the doctor who did the biopsy how accurate the blood test for coeliac is, (in the hope that maybe I wasn't coeliac after all), and he told me that the blood test is 90\% accurate, and that the biopsy is to be completely sure that you have it before you need to go on this restrictive diet for the rest of your life.
Hope this helps, take care
Blood test alone diagnosis: from Kirsten on 2010-06-13
I was diagnosed with coeliac disease about 1 month ago. My simple blood test had come back 'within normal range', but a second blood test (a more detailed one) came back 'positive for coeliac'. My doctor gave me info and I was able to get some prescriptions. I feel so much better, am not running to the loo immediately after a meal or several times a day, I have more energy and am not bloated anymore. I, too, felt very blue all the time, but just put it down to the depressing weather over winter.
However, last week I received a letter from the gastro-guy... and they want to carry out an endoscopy in 7 weeks... and have stated that I must have a wheat filled diet until then... but i really don't want to feel that unwell again. I have made an appointment with my doc for a week on Monday to see if it is really necessary. Some folks have mentioned that the endoscopy is more conclusive and, in the past, were what many people needed to be convinced that they had coeliac disease. Based on the improvements that I have felt over the last month, I don't need further convincing.. but perhaps the doctor needs that confirmation from the test. I am not sure whther it will affect my ability to claim food on prescription?
I would rather that time was spent refering me to a dietician rather than to the day-surgery at the local infirmary.
I'll let you know what my doc says
Blood test alone diagnosis: from periclesp on 2010-06-29
I have a similar situation. My doctor has told me that without eating glutens, blood tests will not be able to confirm Celiacs by detecting their antibodies. Well, I don't need any formal diagnosis of Celiac's disease to know that abstenance from glutens has improved my health dramatically. So you have to make the choice. If you need a formal diagnosis, bite the bullet and eat in a way that makes your condition obvious. But it seems you already know that you and glutens don't agree, so there is another choice. Forget the doctors and keep eating in a way that suits you. Just one man's opinion
Blood test alone diagnosis: from Gill on 2010-10-14
Hello Lyn,you are not alone. I have now seen 4 doctors who still disbelieve the symptoms -like yours. I kept food diary for 3 months, living solely on mash potato and jelly. My mouth was so full of ulcers I could not chew or even do basic dental care. That had to take a back seat.Once on a gluten free diet I have , again like you, flourished. I am more energetic ,sleep better and swim often.
Yes I lost weight but its settled some now.
I did the blood test -nothing conclusive showed. but sure as heck I am NOT going back onto it so they can have a poke down my throat.
I absolute desperation I saw a lady GP. According to her ,I am suffering with depression and gave me tranquilisers. Of course I am. so would she be, not eating anything in 3 months except instant mash and jelly.
I despair. because I am nor "diagnosed " I cant get the gf prescription food despite being on free scripts!Neither am I eligable to join the UK coeliac group.
So I eat seldom and sparsely, in order to keep my overheads down. I have found a supermarket which sells 4 ciabatta g/f rolls.They are positivly nice. A wee bit claggy around the teeth after eating, but at least they are soft.
I now eat fruit and veg,slowly coming back to "human" food again.Just beware of breaded ham slices in a ham salad and gravy on a roast meal. they both caught me out.
Best of luck