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| Can blood tests be wrong
| Posted by Stuart Young
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p
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| Can blood tests be wrong
| Posted by Stuart Young
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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
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| Can blood tests be wrong
| Posted by Peter
|
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
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| Can blood tests be wrong
| Posted by Elisabeth
|
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.
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| Can blood tests be wrong
| Posted by Peter
|
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.
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| Can blood tests be wrong
| Posted by Nicole
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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
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| Is It Possible
| Posted by CICI
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I first started having my symptoms in Feb. 05, it started out with a sence of fullness, then came the diarreah, pain and vomitting. Many test later showed a blockage in the lower intestines. 2 surgeries later and 3 different gastro dr.'s I still don't know why I have a blockage and what is actually wrong with me. My mother recentlty was reading information on celiac disease and decided to start me on a gluten free diet. I started to feel somewhat better and decided to ask my dr to do celiac test which I am still waiting on the results. I always felt better when I was hospilized and put on IV and fluids . Then once I came home and started my regular diet mostly canned sou[, pasta and rice I would get sick all over again.
If anybody can relate to what I am going through please let me hear from you.
CIci
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| Can blood tests be wrong
| Posted by Peter
|
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
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| Can blood tests be wrong
| Posted by Margaret Riding
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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
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| Can blood tests be wrong
| Posted by Peter
|
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.
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| Can blood tests be wrong
| Posted by Paul Wakefield
|
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.
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| Can blood tests be wrong
| Posted by Noeleen
|
Hey I'm just wondering I went to the doctor I have been sick for a few years now catching alot of infections from kidneys to flus to Bronchitis infections, I have some kind of infection every month, this year has been the worst ever!
I've spent most of the year fatigued and really feeling out of sorts. I went to the Doctor last September when I first felt sick I had a really bad flu and I started to break out in rashes like hives. Since then I have been getting hives and taking anti-histomines prescribed by my Doctor. I had a blood test in February in hospital I had to go in I got really bad pains in my chest and numbness in my arm I found it really sore to breath but I got all checks done and they said my heart was fine and my 6 blood tests were clear.
I had my blood tests done agian 4 weeks ago and it came back with low Iron levels around 11.3 the nurse said it wasn't by much and I had high Cholesterlo at 5.1 I'm 29 and slender she also said this wasn't to worry about. After that test I got another blood test to test me for vitamin B12 deficiency and folic acid and coeliac test. After 2 weeks, today I got the results back that my vitamin b12 was normal and the coeliac test was under 12. The nurse asked the doctor and he told me to come back again in 3 months for another blood test.
I'm very frustrated as she gave me no information what to do. Do I stop eating gluten free products for the 3 months or do I keep eating as normal until then. I'd really appreciate advise on this. They are not forthcoming with information and I don't understand what's normal and what says I'm Coeliac. I've been suffering also with constipation for around two years and I am attending the hopital next month for a colonoscopy. I also have been suffering with haemoroids with blood every so often but not much and can be sore.
I hope this makes sense!!
I'm from Ireland and live in Ireland are the screening tests different is under 12 bad? I would just like to know if I am coeliac or what's wrong with me.
Can anyone help on this?
Noeleen
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| Can blood tests be wrong
| Posted by Peter
|
You need to discuss this with your doctor.
Work out what questions you want answered and make another appointment to see your doctor. Explain that you need to know what he is testing for, and what the tests might indicate. Ask for the tests to be explained to you. Ask if you should consider changing your diet.
there are several tests that can be used to help diagnose the coeliac condition, so without knowing which test the figures convey very little information.
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| Can blood tests be wrong
| Posted by Noeleen
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Thanks for the advise Peter much appreciated.
Noeleen
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| Can blood tests be wrong
| Posted by Mary Jones
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My GP has just informed me that Coeliac tests are done in 2 parts and only if the first is postive do they follow through with with the second part. My first stage positive for the antigens but I dont really understand what this means- can you enlighten me - GP says it is likely I have Coeliac - my sister has for 9 years
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| Can blood tests be wrong
| Posted by Peter
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The test is for antigens which your body would produce if mounting an immune response to gluten. If these are detected it confirms that your body is doing this. That your sister has already been diagnosed as Coeliac greatly increases the chances that you also suffer this condition.
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| Can blood tests be wrong
| Posted by Shelley
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Ive just had the blood tests done for Celiac disease and am awaiting the result. I have decided, though, that I will eat a gluten free diet no matter what the results are. If I improve--I have all the symptoms, and have had them for years--then I'll know gluten is the culprit.
I have been eating gluten free for only 3 days, but I am not bloating up like I always used to. While I approach this massive change to my diet with more than a little apprehension, I am willing to do whatever I have to do to get better.
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| Can blood tests be wrong
| Posted by Roxann
|
Here's my question/ story:
I've been an undiagnosed Celiac sufferer for 4 years. My mother is also an "undiagnosed Celiac" but we both have responded extremely well to going gluten-free. I am now the proud parent of a 9 month old daughter and want to officially know if I have Celiac's (she will remain gluten-free until 1 yr or older).
But I still haven't felt "good" (low energy, frequent bowel changes, mood swings, gassy/ farty) and recently have discovered that wheat/ gluten has been slipping into my diet (used Johnny's seasoned salt, raspberry flavored Emergen-C) for months. Had one blood test ~3 1/2 years ago but came back negative. My new doctor wants to test me with a few blood tests again.
Should I go ahead with these blood tests? I've read that I should have been eating ~4 slices of bread daily prior to testing for 3 months?
Is it worth it to go ahead with these blood tests now? Don't think I'd ever be able to go back to eating wheat/ gluten full-time for 3 months.
Thanks for any advice.
Roxann
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| Can blood tests be wrong
| Posted by Suvajra
|
My father has been diagnosed as celiac. I had stomach problems for years and recognised I was probably celiac too. I cut out all gluten and felt an immediate change - within one day no flatulence. I've been on a Gluten free diet for over two years now.
My doctor doesn't believe I am celiac and to prove it he gave me a single blood test which came back with a negative result. I understand from all your posts I needed to be on a gluten inclusive diet to show an antibody reaction.
Three questions.
1. How long should I be on a wheat diet before re-testing?
2. Which blood tests should I request?
3. Where can I find the relevant literature to give my doctor showing him that a blood test on a gluten free diet will show a negative result?
Suvajra
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| Can blood tests be wrong
| Posted by Peter
|
This first paper is very much to the point.
Tursi A ; Brandimarte G ; Giorgetti GM
Affiliation: Department of Emergency, "L. Bonomo" Hospital, Andria, Italy. antotursi@tiscali.it
Title: Lack of usefulness of anti-transglutaminase antibodies in assessing histologic recovery after gluten-free diet in celiac disease.
Source: Journal of clinical gastroenterology (J Clin Gastroenterol) 2003 Nov-Dec; 37(5): 387-91
Additional Info: United States
Standard No: ISSN: 0192-0790 (Print); 1539-2031 (Electronic); NLM Unique Journal Identifier: 7910017
Language: English
Abstract: Gluten-free diet (GFD) plays a key role in the treatment of celiac disease (CD), but it is difficult to evaluate the effect of GFD on the improvement of villous architecture using sensitive, non-invasive tests. Aim of this study is to evaluate anti-transglutaminase (tTG) antibodies in the follow-up of CD to detect histologic recovery. We studied 42 consecutive patients with CD. In all the patients anti-tTG antibodies (evaluated by the enzyme linked immunosorbent assay method) and EGDscopy with multiple bioptic samples before GFD and then 6, 12, and 18 months after GFD were evaluated. For comparison, a sorbitol H2-breath test (H2-BT) and anti-endomysium (EMA) antibodies test were carried out concomitantly. Anti-tTG results were positive in 36 of 42 patients before GFD (80.95\%), while they were positive in 11 of 34 (32.35\%), 1 of 17 (5.88\%), and 0 of 6 (0\%) of patients with a persistence in histologic lesions 6, 12, and 18 months of GFD respectively, without any correlation with persistence of histologic lesions (P = NS). Also EMA failed to show correlation with improvement of histologic lesions. They were positive in 31 of 42 patients before GFD (73.80\%), while they were positive in 18 of 34 (52.94\%), 3 of 17 (17.64\%), and 0 of 6 (0\%) cases 6, 12, and 18 months of GFD respectively (P = NS). Regarding sorbitol H2-BT, it was positive in 40 of 42 (95.24\%) patients before GFD, while it was positive in 31 of 34 (91.17\%), 13 of 17 (76.47\%), and 4 of 6 (50\%) of patients with a persistence in histologic lesions 6, 12, and then 18 months after GFD starting (see Fig. 2, infra). So, anti-tTG and EMA were ineffective in assessing the histologic recovery at each follow-up visit (P = NS), while sorbitol H2-BT seems more effective than anti-tTG and EMA in this field (P < 0.0001 sorbitol H2-BT versus anti-tTG and versus EMA at 18 months after gluten withdrawal). Thirty-eight of 42 (90.47\%) patients adhered to a strict GFD. Four patients were found to have occasional dietary transgression, and in all we noted a progressive decreasing of anti-tTG after 6 months of GFD and negative anti-tTG after 12 months of GFD, but sorbitol H2-BT persisted being positive during the entire follow-up. Intestinal damage persisted during the follow-up, despite anti-tTG and EMA negativity, and worsened in the presence of dietary lapses. Anti-tTG does not seem effective to assess histologic recovery in the follow-up of celiac patients after they have started GFD due to its poor correlation with histologic damage.
McGowan KE ; Lyon ME ; Loken SD ; Butzner JD
Affiliation: Department of Pediatrics, Calgary Laboratory Services, University of Calgary, Calgary, Alberta, Canada.
Title: Celiac disease: are endomysial antibody test results being used appropriately?
Source: Clinical chemistry (Clin Chem) 2007 Oct; 53(10): 1775-81
Additional Info: United States
Standard No: ISSN: 0009-9147 (Print); 1530-8561 (Electronic); NLM Unique Journal Identifier: 9421549
Language: English
Abstract: BACKGROUND: The aim of this study was to retrospectively examine how positive IgA-endomysial antibody (EMA) test results for celiac disease were being interpreted and acted on by physicians in the Calgary Health Region. METHODS: We reviewed consecutive EMA test results, with or without a serum IgA, obtained during a 17-month period. Seropositive tests were cross-referenced to the surgical database to determine the number of patients who underwent intestinal biopsy and the results of the biopsy. We sent questionnaires to the ordering physicians of positive tests with no record of intestinal biopsy. RESULTS: Among 11,716 EMA tests in 9533 patients, 349 results were positive in 313 patients (3\%). Intestinal biopsies were performed in 218 (70\%) of the seropositive patients; 194 of them were diagnostic of celiac disease. Celiac disease was also found in 10 EMA-negative patients. Of the 109 positive tests performed in 95 patients with no subsequent biopsy, 28 had appropriate indications to not perform a biopsy; the most common reason being that the test had been ordered to follow up on a previous biopsy-proven diagnosis of celiac disease (n = 21). For 33 other positive test results without a subsequent biopsy, management appeared to be inappropriate, most commonly (n = 21) because of a recommendation to follow a gluten-free diet despite lack of a tissue diagnosis of celiac disease. For the remaining 48 positive EMA results, administrative issues prevented evaluation (n = 19), the patients refused further evaluation (n = 11), or physician surveys were not returned (n = 18). CONCLUSIONS: Celiac disease affected 2\% of patients, with a similar prevalence in male and female patients. Most positive EMA tests (77\%) were appropriately managed by physicians. Beginning a gluten-free diet without biopsy or failing to follow up on a positive EMA test remain common errors of management
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| Can blood tests be wrong
| Posted by Suvajra
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Peter,
Many thanks for those two papers. The first one should make it quite clear to my GP that a negative result does not necessarily mean I am not celiac.
Thanks,
Suvajra
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| Can blood tests be wrong
| Posted by mandy
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im going through the same thing, my blood tests are coming back negative however the difference now im wheat free is amazing, .
the hospital are carrying on looking into it, however as far as im concerned i will eat wheat free forever now - personal choice.
no more tummy aches, no more desperate dashes to the loo.....
my hands only swell and the blisters only appear whan ive made a mistake....
im no longer tired 24hrs aday....
and the weight is dropping off me weekly....
Im lucky, i can still eat barley, oats and durham wheat, so im just looking on the bright side, that im not full blown ceoliac disease, my heart goes out to the people who are.
It is hard work when im out, cant just pop for a sandwich or pasty, but I guess thats why im losing weight and feeling 100\% better, having to think about what im eating.
my only peice of advice is - if you feel better go with it.
Your body is talking to you and you know when you dont feel well, it doesnt really matter what the doctors say.
They think ive got some skin disorder which is in the ceoliac family. But whatever the result........ im never eating wheat again, its obvious my body doenst want it, so thats that.
Good luck everyone
Mandy
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| Can blood tests be wrong
| Posted by Debra Atkins
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hi there
just read your question and my advice would be to have the blood test again and make sure for the week before that you load up on gluten and wheat products, as without these in your system the blood test doesnt show up any antibodies fighting gluten or wheat.
i suffered for over ten years wirth infection after infection and constant illness, i was mis- diagnosed so many times, when i finally read an article on coeliac and ticked off all the symptoms, i returned to my gp who did the simple blood test. it came back borderline and did not show negative or positive! i then went for a biopsy and the consultant knew straight away that i had coeliac just by looking at my bowel through the camera. so my feeling is that not all blood tests are correct as a borderline result, i could easily have been left to get more and more ill.
now i am fit and have gained weight and even though i take longer to fight infections, i am rarely ill. the tiredness could also be anaemia, i have both pernicious anemia and standard anemia but with regular b12 injections and iron .
tablets i remain well.
Debra
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