Is there a test?

Is there a test to diagnose coeliac when I am gluten free?

I have been gluten free for several years and get a very bad reaction if I get the slightest amount of gluten. The Gastroenterologist tells me I'm not coeliac because the blood tests don't show it (Yes - I have explained I can't eat any gluten so it won't show up).

I'm again getting more stomach problems which are being investigated but I believe will come back to a bacterial infection in the small intestine, as I've had this before - but the symptoms this time are far worse.

The gastroenterologist doesn't want to keep me on his books - this is the third time I've been referred, and the waiting is terrible. I don't seem to be taken seriously because I'm not diagnosed.

I'm about to have a CT scan of the upper abdomen - will that show coeliac?

16 Replies

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  • Hi purplehaze,

    Unfortunately all the Coeliac tests that I'm aware of, require you to be consuming gluten.

    As you're probably already aware, Coeliac Disease is an autoimmune condition. If you're not consuming gluten, then your immune system has no need to produce the antibodies which show up in the blood test; nor will be as likely to show any damage to the intestinal lining, especially as you've been gluten-free for such a long time.

    Have you considered the possibility of having secondary food intolerances in addition to gluten?

    Good luck figuring it all out.

  • Yes I can't tolerate much dairy, although I can have a very small amount without too much problem.

    I have a very plain diet - meat and veg, very little spice.I can't tolerate foods like cucumber, iceburg lettuce, raw onion and some of the gluten-free foods - Genius does not suit me at all.

    All of this doesn't help me to lose weight at all because I can eat gf salty crisps and gf chocolate biscuits, while at the moment with my present symptoms I can't now eat cereals or porridge or toast for breakfast without severe pain.

  • Wow - and I thought my diet was crazy!

  • Hi purple

    Poor you! Guidelines say you should consume gluten daily for 6 weeks before having blood tests but there are some people who have normal bloods but endoscopy shows cd. This happened to my son.

    To find out if you have cd I think you will have to eat gluten for 6 weeks and have the tests again but the trouble is not only will you be ill but you may also wait a while for an endoscopy if your bloods are positive.

    Interesting that you struggle with dairy as that goes hand in hand with CD.

    If the medics won't help I would be tempted to try the autoimmune approach.

    Www.the paleomom.com

    This is a way of life which aims to settle autoimmune diseases.

    No grains ( not even rice/corn)

    No dairy

    No nuts

    No legumes eg lentils

    No deadly nightshades eg potatoes.

    I'm doing it to help my Rheumatoid Disease and tummy problems and I feel much better, sleep better.

    Good luck!

  • So having cut ALL of those items out what is your daily diet?

  • Ha ha good question.

    Meat, fish, poultry, fruit, veg, this morning I am having bacon and fried kale with black tea. For lunch I will have soup then a banana. For tea I am having salmon salad with sweet potato roasted in olive oil.

  • Why ,when the blood tests and even endoscopies are not 100% reliable are people required to make themselves ill to be" diagnosed". after they have stopped eating gluten and are feeling well.

    Its all crazy, especially as the gut is further damaged the more one eats gluten.

    I know its supposed to protect people from being on a gluten free diet when they don't have to be, but surely in this day and age there should be a test.

    Many allergy tests are eating tests, why not for coeliac?

    I sometimes do not understand and I think I would just decide not to have a definitive diagnosis, thats a personal opinion and not a recommendation. but I could not bear to feel so ill again.

  • The key is Venetia not to stop eating gluten. When my son was suffering and the paediatric gastroenterologist wasn't sure what was going on with him I asked her if we should try him off gluten and she very firmly said no. Unfortunately some gps do suggest it not knowing that the antibodies will go if you don't eat gluten.

  • I hate to say it but I understand where your Gastroenterologist is coming from, you appear to be asking for a diagnosis for a condition which is absent due to your GF diet. As others have said you MUST be consuming gluten for the damage to be done to your gut and for the antibodies to show in your blood results.

    As far as I am aware the ONLY tools for diagnosis are blood tests/endoscopy/colonoscopy - normally biopsies are taken during the latter two but in my personal experience you would not normally get the latter on the NHS if the bloods are negative.

    As you are gluten free and it obviously has helped you to be so then it seems to me that your current symptoms are not connected. It could be you are eating something else causing you issues - I was diagnosed with IBS a year after my CD diagnosis which meant that once again my diet had to be adjusted to eliminate those other foods known to cause IBS.

    I see others have given you advice on what to eliminate from your diet - perhaps you could do that then slowly reintroduce them one by one to see which if any of them are causing your issues. For instance, I cannot, like many other Coeliac's, eat GF porridge oats because I react to them very quickly so I do not eat any GF products which have oats in them (ie Nairns).

    Whatever you do, I hope you get a solution soon that helps your symptoms improve or disappear altogether :)

  • I would suggest you are being taken seriously but not in the way you think. It is possible it is something other than coeliac disease making you ill. CT scans cost a fortune to do - you don't just get sent for one, they're looking for something else (or confirming a diagnosis). The scan won't diagnose coeliac disease, but if you are gluten free then gluten isn't the culprit making you ill. Treat the two as separate.

    If you've got a bacterial infection then get that sorted too.

  • Have ur dr thought about gluten sensitivity disorder since ur celiac test is negative ! U can just be gluten sensitive !

    Potato , lettuce , lentil , Apple , pears, wheat , pasta , cheese , Ted meat ,sugary diet naturally causes discomfort and bloats for everyone some people can tolerate some won't ..

    Good luck

  • There are lots of things your symptoms could be. Candida, allergies, ibs. Do you take a probiotic? Helpful especially if you are having antibiotics. I get a gluten/dairy/yeast/soya free one from Holland and barrat called Asidophilus plus .

  • Thank you for all your comments. Hopefully the CT scan will show something on Friday

  • Hi purplehaze

    I was convinced I was coeliac despite negative blood tests and endoscopy, then allergy blood tests by an consultant immunologist showed I had a wheat allergy. I had some very similar symptoms to CD sufferers including spots which I thought were dermatitis herpetiformis. I consider myself very lucky to have been diagnosed although I keep having flare ups from things like glucose syrup and dextrose when I take a chance with a gluten free but not wheat free product. is it possible it could be an allergy with you?

    All the best Rosered

  • I am really careful what I eat - I am gluten free completely. It seems that some days I can have my breakfast cereal or porridge and then other days I can't - this is recent. Which makes me think it's the bacterial infection of the small intestine problem that I've previously had. It just seems much worse this time around. Hopefully the CT scan will show up what it is and then I can adjust diet yet again.

    Thank you for your concern

  • Yes I had a blood test for lots of different types of food. I have the name of the test I think, if I can find it I will let you know. One of my worst and quickest symptoms is oesophageal pain which is caused by the allergy and is like heartburn. When I last had a tiny amount of wheat a number of months ago I was taking gaviscon every couple of hours day and night. A couple of days ago one square of tesco dark chocolate which was made in a normal factory, but had no wheat or wheat derivatives was enough to start it off, now though when I try something new I am very wary, have a small amount until I am convinced things are ok. I guess the line must have been used previously for a proct with some wheat element in.

    Do you have hives or skin problems at all?

    I hope you feel better soon, once you know what is the problem you can really do something about it.

    Rose

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