Am I a coeliac?

Hi, this probably sounds random.

I started a gluten free diet about 10 years ago because I was bloated, tired, stomach cramps, anaemic, suffered terrible migraines and alternated between terrible diarrhea and constipation. A few years ago my sons doctor said I should be tested for coeliac disease and that before I had any blood tests I should be eating normal levels of wheat / gluten in my diet. So I went and talked to my GP. He said he'd give me a blood test and that I DID NOT need to eat any gluten... so I didn't. The test... IgA I think.... came back and said I didn't have coeliacs. After reading quite a few articles it seems that the advice I received from my GP might not be accurate, can anyone advise me? As I manage my own diet, I still get problems, but I am mostly ok but some of what I have read is rather worrying.

Thank you :-)

14 Replies

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  • Sounds like your doctor is misinformed. The blood test measures the TTG Iga antibodies that are produced when a coeliac consumes gluten. The antibody level goes down to the normal range after following a gluten free diet for a while.

    So as you've not been eating gluten, the blood test is going to be negative whether you are a coeliac or not.

    Pretty shocking that your GP didn't know this!

  • Thank you for answering so quickly.... I think I will go and see a different GP and see if I can get any further! Trouble is my GP is great for other problems, so it feels disloyal to challenge him.

    Another question, is there anywhere I can get reliable or 'official' information that I could take to my GP?

  • For reliable "official" information. Try the Coeliac UK site. Here is their link to a PDF which covers the testing and states that you must consume gluten before the test:

    coeliac.org.uk/sites/files/...

    Also, this is the NICE clinical evidence site that doctors use:

    cks.nhs.uk/coeliac_disease#...

    Click on "How to Test" and you will see that it says:

    "Confirm that the person has eaten gluten-containing foods (with wheat, barley, or rye as an ingredient) at least twice every day over the last 6 weeks."

  • Try Coeliacs Uk site.

  • Even if you see a different doctor, your tests will still be negatve unless you go back to eating products that contain gluten. There are also some flaws with all the tests as there appears to be a different antibody that also shows a sensitivity to gluten, I think it is Ige. Unfortunately I can't remember where i read this.

    I tested negative because I had cut out gluten, but I don't need a lable from a doctor, I just listen to my body. I wish you every sucuccess in your investigation .

  • I agree with badhareday and if you want a diagnosis you will need to consume gluten. I was wheat free for a long time not knowing I was coeliac, so was consuming gluten.. At least with all the information you have these days it is easier to be completely gluten free.

    I did get badly pressured into a gluten challenge and endo after having positive antibodies but had started a proper GF diet after a dermatitis herpetiformis diagnosis and I haven't felt well since. As I haven't had any benefit from a 'proper diagnosis' I wouldn't do that again.

  • Have to agree with the others - nearly three years ago now, I had an attack of what I now know to be Collagenous Colitis (a side effect of coeliac disease) - whilst waiting to see the specialist, I homed in on Wheat / Gluten as the source of my problem and eliminated it from my diet.

    I have Vit B12 and Folic acid deficiencies, CC, the colonoscopy has shown signs of coeliac nearly 2 years after removing gluten from my diet, but the specialist StILL will not confirm it unless I go back to eaten a gluten based diet.

    Not a hope in hells chance I'm afraid - accidentally eating it can trigger a CC attack (usual duration about 12 weeks) not to mention the agonising pain, griping etc

    Now waiting for a DNA test - but have to agree with the others - sometimes, you have to listen to your body.

  • Agree you should get tested properly. If you can handle it (and I know some coeliacs can) eat a slice of bread or equivalent every day. The tests you need are IgA EMA, IgA tTGA, and because you may also be IgA deficient, IgG EMA and IgG tTGA. Ask your doc to have a look at patient.co.uk, (my doc uses this website, he probably does too). It tells you/ him what symptoms, tests etc relate to coeliac.

    If you find you can't handle the bread (about 6 weeks is long enough for the test) eat as much as you can and have the tests. If you are really, really sensitive then the antibodies may show up anyway.

    Good luck.

  • Agree with the others and had a similar situation myself. Self diagnosed 8 years ago and have been GF since. I thought I ought to go to the doctor but 2 years of grief and arguments ensued when they wanted me to do a gluten challenge, which I refused as it would have hospitalised me.

    In the end went private and got a diagnosis. However it has not benefitted me in any way as my local PCT have restricted what's on prescription, I do not get any annual checks from the doctors and I know more about CD than they do!

    So my advice would be if you are feeling OK and you don't get any other symptoms, stick with the diet and think seriously about what benefit you would get from going to a doctor.

  • Sorry to hear of your plight. You do need to eat food with gluten in before you go for the blood test, perhaps after Christmas, give yourself at least 6 weeks on a normal diet and the go to the doctors and ask for another blood test.

  • I'm sorry you're having problems; you should have the test after eating gluten for several weeks, if it shows positive, you should then be referred to a gastroenterology clinic where you should have a biopsy which is the only conclusive test. When you know for certain, you can make informed choices about what you eat & it gets rid of the nagging uncertainty. I was ill for a long time & recovered very quickly on a GF diet, I suffer if I cheat! Good luck,

    Jenny

  • I had the same issue but I was terrible ill the first 2 days of eating gluten after not eating it for 2 years so I didn't get tested in the end as I felt absolutely dreadful and didn't feel it was worth it. That reaction alone proved to me I was allergic to wheat.

  • Thank you for the fantastic and supportive response. I am overwhelmed.

    I will check out the websites you've suggested and I will go and have a chat with a different GP. I am most concerned about the associated health issues, and whether my children will be affected.

    The thought of eating gluten products for six weeks is horrifying..... so I'm not sure I will go down the official diagnosis route.

    Good luck with all your battles, this is a rotten condition but at least it is manageable and it is great that there are supportive groups like this for us.

  • It is true that an accurate diagnosis cannot be confirmed unless you are eating a gluten diet. Really, who wants to do that, when we know what the outcome is!

    IgA is Immunoglobulin A, an antibody that protects all the mucus membranes in your body. If you are deficient in IgA, you are more likely to have allergic reactions or autoimmune diseases but not necessarily. It is a lottery and not always easily ascertained. Best to be aware and play it safe if your IgA level are below normal.

    IgE is the immunoglobulin that is tested to detect allergic reactions.

    IgG is immunogammaglobulin - this is the body's main army, protecting all areas.

    The biopsy tests for areas of non-existent (dead) villi. This test is not always accurate whether you are on a gluten free diet or not. It depends on how far along the coelic disease has progressed.

    You could just be gluten intolerant, which in itself causes enough pain to quit eating any form of gluten forever!

    Personally: my IgA is non-existent, my IgG higher than normal, the IgE tests did detect a reaction to gluten but I refused the biopsy, as I would have had to consume gluten for 2 - 3 weeks, and thus cannot be confirmed a true coeliac. As such I cannot claim any gluten free purchases on my income tax form. For the amount of processed foods I do eat and the percentage the government returns to you at tax time ... it amounts to approx. $20.00 CAD, refunded to me per year. Not really worth my while!

    Good Luck to you!

    De

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