Hi everyone, I'm new on here, I'm just wondering how accurate the test for coeliac is? After years of suffering bloating, constipation, diarrhoea and feeling generally unwell the doctor did some bloods and I have deficiencies in B12 (had the loading dose) Folate, iron and extremely low vitamin D3. All now being addressed by my GP. Had Thyroid and Coeliac tested, came back as 'no further action' for Thyroid, Coeliac as negative. GP has decided to send the gastro doc, could it still be Coeliac? Or is the blood test 100% reliable? Thanks for reading, any replies welcome!
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This is the advise given by Coeliac UK about negative blood tests & where you are still displaying symptoms of coeliacs......
"Negative blood test results
It’s possible to have a negative blood test and still have coeliac disease. If you weren't eating gluten at the time of your blood test, you may have received an inaccurate result.
If you have ongoing symptoms that suggest coeliac disease but have had a negative blood test, ask your GP to check to see if you have been tested for IgA deficiency.
Some people with coeliac disease do not make the usual coeliac disease antibodies. This is called IgA deficiency. When the laboratory is measuring your antibody level they should also check your total serum IgA to detect IgA deficiency. If you are IgA deficient the following tests should be considered:
Immunoglobulin G (IgG) EMA
IgG deamidated gliadin peptide (DGP)
If you have tested negative for coeliac disease, particularly if you have Type 1 diabetes or you are a close relative of someone with coeliac disease, it is important to note that coeliac disease may present with a wide range of symptoms and you should consult with your GP if any symptoms arise or persist."
In any event, I am impressed that your GP has done all the b12/vitd tests as well & is still referring you to a gastro specialist, sounds as if you have a good GP as he is still taking everythng seriously.
Remember too that there is ncgs ie non coeliac gluten sensitivity & is just as problematic as coeliacs disease & again this is another possibility for you.
After seeing the gastro chap, I suspect you will then give up gluten to see if that helps to clear up your symptoms.
Thanks for responding, I suppose on paper my GP seems okay, but in reality these tests have been done in dribs and drabs, I initially went with a mouth full of ulcers. My blood results show macrocytic anaemia as well as all the deficiencies, something isn't right. Maybe clutching at straws with coeliac but I want answers, sick of feeling like an old women at 42! Think the endoscopy referral came after I told him my father, unfortunately, had stomach cancer aged 52.
Yes, think I may have avoided gluten before the test as I feel so awful when I do eat it. I don't think I feel as bad as some people on here, after reading some of the posts, so yes maybe gluten sensitivity is the cause.
Hi I don't think the first blood test is reliable as my understanding of it is that it only tests one of the bodies antibodies. From what I have read the body produces different antibodies in response to antigens entering the body (like gluten). There are 5 antibodies IgG, IgA, IgM, IgE, IgD. From what I gather the first blood test measures IgA levels in a person to give them an indication of whether they might be coeliac. However, not all bodies are the same and some people produce different antibodies in response to gluten. Therefore, many people are finding they get a false negative.
I got a negative as did my mother after testing because my daughter has Coeliac's Disease. However, we decided to go gluten-free due to ongoing symptoms and both of us have felt enormous benefit and can no longer eat even tiny amounts of gluten without having strong reaction. I have never gone down the route of formal testing because I'm not prepared to go six weeks or more eating gluten - given that I now get crippling stomach pain, itchy hive like skin rash, severe migraine when I eat it.
I'm sure you will get plenty of responses where people tell you they tested negative at first and then had to pursue a diagnosis with further blood tests and stomach biopsy test.
Hope that helps.
Thanks, yes it seems that a lot of these initial blood tests are unreliable, that's why I thought posting on here would maybe give me more of an insight. Thyroid test, doesn't tell the doctor much unless you have the full test, intrinsic factor for Pernicious anaemia, only 50%reliable!
I won't rule out Coeliac yet, then! Thanks again.
From my family experience, symptoms can sure indicate likely coeliac but the only way to be certain is to have a biopsy. If the nutrients are not being absorbed the small intestine biopsy will show it. Out family has many with coeliac. My mom found out when she was 70. Out of my six siblings there of us have it and many nieces and nephews and all 3 of my kids.
Good luck and it's not hard to follow diet
Thanks for responding, yes, it seems that I definitely have an absorption problem. No one else in the family suffers, saying that, my mum and her sister never eat bread or pasta. They only seem to eat tuna or salmon steaks with salad! You'll never, ever catch them with a bacon butty! I know my father had stomach problems most of his life but celiac was never diagnosed before he died of stomach/oesophagal cancer ten years ago.
Is it always inherited? At least with you and nearly the whole family having it, there would be less chance of eating any gluten at family gatherings! With our family, it's been milk and dairy intolerance, you need eyes in the back of your head during Christmas, chocolate everywhere, and some people just don't understand!
Inheritance is the key but there are other illnesses and particularly parasites that mimic coeliac disease (I'm always rattling on about this as I've known people contract giardia intestinalis).
Your father's stomach/oesophagal cancer could have been due to many things, most notably smoking and drinking alcohol, processed meats, being obese, h-pylori infection and industrial chemicals. Coeliac disease's trigger is gluten related.
Yes I know it is gluten related but he had all sorts of digestive problems over the years, dairy intolerance as a child (unheard of back then) didn't drink or smoke wasn't over weight or worked with chems, autoimmune disorders increase the chance of stomach cancer. As I said didn't get chance to be diagnosed with anything else, he died just before his 53rd birthday.
Is it a small intestine biopsy? I've only had large bowel camera?
Yes, upper endoscopy - ie small intestine. It's a different set of cells completely in the bowel.
Thats a shame, I had an endoscopy but they didn't go that far as I had a major panic attack and they had to abort. When I had the colonoscopy to me the villi looked extremely flat, bowel was very smooth and shiny but they just said there's no ulcers or reason for bleeding just hemmaroids and that's from going like up to twelve times a day!
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