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Positive Blood Test Results

ClaireE

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ClaireE Newbie
ClaireE
Posted

Hello all. I have been told today from my doctor that a I have a positive blood test for Coeliac. I have been anemic for 4 months and a repeat blood test last week showed that after taking iron tablets since diagnosis my levels are still very low, my nanna had Coeliac Disease and my mum suggested that I should have a test to rule it out as it can be hereiditary.

I am just confused now as I have been referred to the hospital to see the consultant and have an endoscopy and gut biopsy but the doctor said that even tho I have tested positive it doesn't mean further tests will confirm I have celiac disease, when I asked her to explain how this can be the case, she didn't really answer so wonder if anyone could offer any further advice especially as the waiting list to see the consultant is 3-4 months.

Thanks in advice

Claire

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gf4life Enthusiast
gf4life
Posted

No matter what your doctor says you will need the gluten free diet, since you are having a reaction to gluten, that is why the tests were positive. But do NOT start the gluten free diet until after the endoscopy/gut biopsy. Yes, I realise that this means 3-4 months of suffering, but if you eat gluten free for even a few days before the test it can alter the results and be a false negative on the biopsy. I'm sorry that you have to wait so long, but please stick to eating gluten for now.

Ursa Major Collaborator
Ursa Major
Posted

For myself, I had no intentions of eating gluten another HOUR after figuring out it was what was making me so sick. Good dietary response along with a positive blood test also confirms celiac disease. Biopsies are only accurate if they are taken from a damaged area. If the damaged parts of your bowel are missed, you'll end up with a false negative. Biopsies can only confirm celiac disease, but negative biopsies still don't rule it out.

The problem comes when doctors will tell a patient that they can definitely not have celiac disease when their biopsies are negative, and tell them they can eat whatever they want.

It is entirely your choice if you really want to keep suffering for another three or four months to have a test which may or may not confirm what you already know, or skip the biopsy and just try the gluten-free diet to see if it helps.

Anemia is one of the most common symptoms of celiac disease. Your positive blood test, along with the anemia and family members being officially diagnosed with celiac disease should really be enough evidence that you have celiac disease. Your doctor obviously isn't very knowledgeable about celiac disease, as she thinks the blood test means nothing without a positive biopsy.

Anyway, you need to make up your own mind on what to do. Personally, I wouldn't want to suffer for the whole summer, knowing how to get well.

ClaireE Newbie
ClaireE
Posted
  • Author

Thank you for your replies. I have only been researching Celiac since yesterday and luckily came across this forum which already has given me a lot of advice and information. I am sure in time it will prove to be invaluable.

Hopefully the biopsy will not prove negative as will be even more confusing and I can progress to see a dietician and try a gluten free lifestyle.

Claire

JessieFree Apprentice
JessieFree
Posted

Hello I know how you feel I am almost in that same position. I went to my family physician with stomach problems she had me do a sonogram when she couldn't find anything she sent me to a gastro specialist who had me do a upper endoscopy. The biopsy was positive for celiac and I have all the systems but he sent me to get a bloodtest to confirm it anyway. Then he said that even if the blood test is negative I may still have it and either way I have to get a dietrition and go on the gluten free diet for 3 months. If I get better I have it if not I have to have more tests. Isn't the biopsy and symptoms enough? I just want a yes or no answer. I don't see paying a dietitian and going through 3 months gluten free when that may not even be the cause. But since you have a family history of it and blood test is positive I'd think it's pretty safe to say you have it.

Hello all. I have been told today from my doctor that a I have a positive blood test for Coeliac. I have been anemic for 4 months and a repeat blood test last week showed that after taking iron tablets since diagnosis my levels are still very low, my nanna had Coeliac Disease and my mum suggested that I should have a test to rule it out as it can be hereiditary.

I am just confused now as I have been referred to the hospital to see the consultant and have an endoscopy and gut biopsy but the doctor said that even tho I have tested positive it doesn't mean further tests will confirm I have celiac disease, when I asked her to explain how this can be the case, she didn't really answer so wonder if anyone could offer any further advice especially as the waiting list to see the consultant is 3-4 months.

Thanks in advice

Claire

ClaireE Newbie
ClaireE
Posted
  • Author

I just want to know either way now and can't believe the NHS's waiting list times, unfortunately cannot afford to pay to go private. I would love to give a gluten free diet a trial but the doctor advised me to keep the same diet going as this will effect the test results but I am entrigued to know if it would make a difference as I feel so tired all the time at the moment.

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