92.Can blood tests be wrong Moderated discussion and help for gluten free, coeliac, celiac, wheat allergies or intolerance, Cookery and recipes

Can blood tests be wrong: from Stuart Young on 2005-04-08

p

Can blood tests be wrong: from Stuart Young on 2005-04-08

I started having very bad stomach cramps almost 2 years ago. At first it was only cramps, but after about 7 months I started getting really sick all the time, at first i thought it was the flu, but it would come every week. It would be like this, 4 days sick, 3 days get better, than 4 days sick again, over and over and over. I was always tired, very sore muscles, tingly legs, and sore throut. Are those symptoms of Ceolic? My doctor has done tests after tests, and i've seen specialists. Awhile ago, my doctor brought up the idea of me having Ceolic, but couldnt find the blood test do to it. He eventually found the test, and I guess it was negative. Recently i've started going on a gluten free diet and have notice some good changes. Is it possible that the test wasn;t accurate? or am i barking up the wrong tree? Thank you for your imput

Can blood tests be wrong: from Peter on 2005-04-09

The blood tests are not 100\% conclusive, for the individual, but for testing large numbers of people are very useful. Perhaps 98\% - but the 2\% adds up to a large number of people.
A reaction to wheat in the diet is not always a response to the same antigen that the blood test is for.

The coeliac condition has been defined as when the villi in the small intestine have been damaged and can this damage can be detected in a biopsy - but repeat biopsies in some patients have shown that the flattened mucosa may not always be apparent.

So it is possible that you have an adverse reaction to gluten in the diet -but not necessarily so. Other types of food can also cause adverse reactions.

I would suggest that you keep a detailed diary of everything that you eat and of any symptoms. Eat as wide a variety of natural foods as possible, but not the same thing every day. Try and avoid manufactured foods as these have so many ingredients mixed together that they won't help you decide what is causing the problem.
You could also try alternating weeks with no gluten at all, with weeks with a normal diet.
If you do have a reaction to somthing in your diet you may notice a periodicity in your symptoms that corresponds to when you eat that type of food.

Do beware that eating somthing that you react to after excluding it for a period can result in a shock reaction in a few cases. Always consult with your medical doctor.

Peter

Can blood tests be wrong: from Elisabeth on 2005-05-07

My mother has coeliac. It was suggested I get tested as I have many of the symptons, esp. tiredness, stomach pains, diarrhea. Years ago the test was negative. Now it shows too high amounts of iron. My doctor said that the reading was really high and that this is very bad. Can this reading be a sign of coeliac? My doctor is going to do further tests, plus a biopsy. The biopsy will still be months away though.

Elisabeth.

Can blood tests be wrong: from Peter on 2005-05-07

It is possible to have iron overload and the coeliac condition, but this is unusual..
Blood tests for coeliac can occasionaly be wrong, more so several years ago.
It is importnat NOT to start a gluten free diet before a biopsy as this can prevent proper diagnosis.

An abstract of a paper below

Title Coeliac disease and hereditary haemochromatosis association and implications.
Source Eur J Gastroenterol Hepatol (European journal of gastroenterology & hepatology.) 2004 Feb; 16(2) 235-7
Additional Info England
Standard No ISSN 0954-691X; NLM Unique Journal Identifier 9000874
Language English
Abstract Coeliac disease and hereditary haemochromatosis are genetic disorders paradoxically associated with altered intestinal absorption of iron. Hereditary haemochromatosis is the most common autosomal recessive disease in the Caucasian population and is characterised by an iron overload state. Coeliac disease, or gluten sensitive enteropathy, on the other hand is frequently associated with iron deficiency anaemia. We report the cases of two patients who developed both coeliac disease and hereditary haemochromatosis. We review the literature of this rare association and examine how the clinical presentation is modified by their co-existence and the potential genetic linkage of these two disorders.

Can blood tests be wrong: from Nicole on 2005-08-20

There is more than one blood test for celiac disease, and different countries and even different doctors read the reasults differently. Go back to the doctor and ask for the full results 'numbers' he got back. If it is more than 10 in Europe you would be considered 'celiac' but in Australia it had to be about 30 for most doctors to even think gluten might be a problem. I heard of one doctor who was angry at a patient who stoped eating gluten who's test came back at 80.

Find a doctor who cares!
Nicole

Can blood tests be wrong: from Peter on 2006-02-05

It certainly sounds as though your problem may be diet related. If it is diet related, then gluten is the most likely culprit.
It would not do any harm to go on to a completely gluten-free diet for several months and reassess your health. A lot of canned soups will contain gluten.

Look at the what you can eat, and what you must not eat sections.
make sure you eat a varied diet.

Peter

Can blood tests be wrong: from Margaret Riding on 2006-04-20

I was diagnoses as coeliac about ten years ago and a few years later had the children screened with a blood test. Unusually Two of the children showed up as having one antiboby each present. The youngest the IGA? and the other another +ve indicator but I was told that usually these go together and that one indicator is not sufficient. The child with a+ve IGA went on to have a biopsy which was inconclusive. The hemotologist told me that the child presenting with another indicator meant that protiens were escaping from the gut -probably due to tummy bug. He is 21yrs now and finds that he tires easily and wonders if he may be coeliac. Should I put both on gluten free diets despite being told not too.

Margaret

Can blood tests be wrong: from Peter on 2006-04-20

There are some medical researchers who argue strongly that the blood test are not sufficiently accurate. In your case, where you are definitely coeliac, and the children show symptoms, I would definitely try them on a completely gluten-free diet -say for a year in the first instance.

If at the end of the year there is no clear difference, then you know that it was not the case, but if the children's health improves markedly then you will have done them a very good turn.

Can blood tests be wrong: from Paul Wakefield on 2006-04-25

Whilst there are many doctors in the world who are very good at what they do, they still only 'practise' medicine. This disease has only been recognized for a relatively short amount of time for what it is, on the whole having been collectively associated with all the ailments which can come as part of it (over/under active thyroid, asthma, bone disease, anemia etc etc).

My daughter Stephanie, then aged 2 had a lump on her stomach which appeared to be an abdominal hernia. On consultation with several doctors at the local hospital and several blood tests, they determined that she had a lump of fat or muscle and that it would go away. On top of this she had failed to put on any weight and was always ill, refusing any food.

For 3 months this continued, and instead of getting better she actually started to lose weight and we were assigned to a dietician to help her eat better. As I pointed out this was of no use as she was actually NOT eating. We still were getting nowhere so I decide to take things into my own hands and spent days doing research, dubiously at first, over the web for similar symptoms. And then I found it - Coeliac Disease. I read all the symptoms and alarm bells sounded and certain phrases and words sprang out at me. For from what I read not only did Stephanie appear to have it, but also my eldest daughter (then 5), myself and my Mother - although at varying degrees.

I immediately asked for consultation with a doctor and was astonished to find that she had already asked for a blood test for Coeliac and that it had come back negative. I couldn't believe it, as I was so sure that she had got it. But then I found a very useful site at an American research institution which told me that all current blood tests for this disease were only 95-97\% accurate and that in some cases could give false negative results at one stage even though the patient did have the disease. Armed with this new information I decided to push to get my daughter checked again, and reluctantly 10 MONTHS LATER, we were told we had an appointment with a consultant at the hospital.

Thinking the fight was over and that we finally going find out, we were astonshed to find no less than 5 consultants in the room and we had to battle again.They explained that the blood test was the first step (the second step was a biopsy) and that as she had proved negative there was no further reason to proceed. Eventually they conceeded to give Stephanie another blood test.

This time I was ready however. I had read that for the tests to work she had to have eaten wheat in her diet and that if she was ill the results would be affected as cells produced to counteract any infection would cause a negative result (a different type of blood test is 'supposed' to detect this). We prevented her from catching infections and gave her food she wanted that contained any amount of gluten rather than trying to keep to a nutritional diet - this obviously meant sweets and snacks.

The result was that she was diagnosed with Coeliac and when we went back to the hospital (1 consultant this time) they bent over backwards to help us and we were given a date for a biopsy within a week, of which this also proved positive. I know I have prattled on here, but I feel angry that we should have had to fight every part of the way to get to this decision.

It has been two months now since my daughter last had wheat, and she is a different person.No longer withdrawn, lethargic or lacking confidence, her face a healthy pink rather than deathly white, and most importantly no longer complaining of tummy pains. I have also put my eldest daughter and myself on the diet too, and my wife has noticed dramatic changes.

To all those with children - only you know your children, don't be led into believing there is nothing wrong when you can quite easily see that there is. Don't be afraid of fighting for a second or third opinion if the doctor says there is nothing wrong.

If you still get nowhere, and you are determined there is still something wrong, put them on a three month wheat-free diet and record everything eaten. There are books that can be purchased from Coeliac(Celiac) societies that tell you of the food that can be eaten, and those that have to be avoided - but use your own judgement as some still list items with wheat containing ingredients (i.e. monosodium glutomate) and can give you back the symtoms for upto five days. With Stephanie we noticed an improvement after 4 weeks, but I felt an improvement after only two weeks suggesting that there are different levels of intolerence.

This diet sheet can then be used as a measure by doctors/dieticians. After this three month period, at least if the doctor wants to do another test the shock of going back onto wheat won't be so bad for their system.