Is there a way of getting an official diagnosis of coeliac without eating gluten for six weeks and then getting a stomach biopsy?

My husband became ill about six years ago following flu. He had all the symptoms of coeliac disease (though we didn't know what it was). This continued for two whole years while his GP did lung function test, heart test, colonoscopy and found nothing. The GP suggested his loss of breath was due to age! My husband was not taken seriously at all. Then one night I wondered if it might be coeliac. We checked symptoms on the net and my husband could tick every box. We immediately cut out gluten and within 24 hours he felt better. A few weeks later, he went back to the GP and said he'd discovered the problem. The GP was not very helpful but sent him for a blood test. He was found to be seriously low on B12. However, he said he could not diagnose him as being coeliac without my husband eating gluten again for six weeks and then having a stomach biopsy. Of course, there was not way my husband could face being ill again just for the diagnosis. Is there another way?

12 Replies

oldestnewest
  • It does appear to be possible to get a diagnosis on blood tests alone:

    cureceliacdisease.org/wp-co...

    Although the ESPGHAN Diagnostic Criteria have been designed for children, they probably apply to adults too.

    However, the eating gluten thing may still apply to the blood tests.

  • i had a blood test and my ttg( at least i think thats what its called) came back positive....i was offered a scope but i wimped out after 2 weeks back on gluten cos i felt like death warmed up... but my doctor understood and i go for blood tests every 12 weeks as my calcium, d3 and b12 were low....now 10 months on my calcium is in the low normal range and my d3 has risen to 45 so still low there and my b12 is still on the low side..........i'm one of the lucky ones that has a understanding doctor...but your husband will need blood tests to monitor is vit levels.....

  • My husband's GP is a complete waste of space. He is not understanding, treated my husband for two years as if he was making things up, and insisted the only way to class him as coeliac was to have a biopsy. I know of others who have not had a biopsy who are classed as coeliac, hence my question. My husband's GP has not monitored his vitamin levels; in fact he's not been tested since his initial blood test after WE discovered what was wrong. I think a return visit to the GP is overdue. I think he needs to request vitamin tests and to explore other options than going back on gluten. He unwittingly ate something last week that probably contained gluten (though we were told there was nothing in the meal that did) and was ill with diarrhoea and a tender stomach for 24 hours. There is no way he would entertain eating gluten just for an official diagnosis.

  • Is it possible to change your GP? or get a referral to a Gastroenterologist

  • Now that's a good idea!

  • Generally the 'Gold Standard' is that people need a blood test (whilst they are still consuming gluten) to test for anti-bodies to it if this is positive then they will be required to have the endoscopy + bowel biopsy. On the plus side this means that people can be certain that when they are making a radical lifestyle change it is actually accurate and worth while doing so versus people who self diagnose due to frustration with their GP. Although the gluten free challenge isn't nice it's currently the mainstream way of testing coeliac patients to ensure they are eating gluten before tests. Many pre diagnosed coeliacs find that if they eat 2 slices of bread a day and pasta at least once a week they will still generate enough antibodies for a positive test. If you're unhappy with the GP it's worth having a frank discussion with he/ her or simply ask to see another GP at the practice. Most GPs will not refer patients to secondary care i.e. gastros until they have enough cause to do so especially now budgets in the NHS are becoming tighter than ever before.

  • My husband reacts strongly to the minutest amount of gluten, so two slices of bread a day would have him running to the loo with diarrhoea all day and night. No way. I know he will not go this route.

  • Hi

    I'd still demand a referral to a Gastro specialist, so they can still check him out. My Doctor like yours took ages to catch up with my diagnosis, but still referred me even after I'd given up gluten - I think it was because they didn't know what else to suggest & they knew I wouldn't give in easily! I had been off gluten & dairy for 5 mths before the TTGA blood test with the gastro specialist - it was still positive, so they referred me for an Endoscopy, which took another 4 months to come thru. She understood that I wouldn't go back onto gluten for the test & said she wanted to check that there wasn't any other damage. She said that she was in no doubt that I was a Coeliac & even if it came back negative it would be classed as 'Coeliac without histology'. The results are back & cos the next appt with the gastro chapess is not for another 2 months (!!), after nagging they gave me the results over the phone via my GP - they are negative thankfully. It will be interesting to see if her stance is still the same when I have my appt at the end of Jan, whereby I may ask for some vitamin tests.

    If I was you, nag for a referral & don't accept no as an answer, you need to check the level of damage & to make sure nothing else is going on for peace of mind. I personally wdn't go back onto gluten for the tests either, it may mean the tests are inconclusive, but you already know he has a problem with gluten & so have your answer as the results will be the same - ie no gluten! But you need to get the other vitamin tests done etc via the specialist. Keep jumpiung up & down if that's the only way to get him tested. One day, the GP's will catch up with everything.

    ps - my breathing/coughing has got hugely better - this was def down to gluten & coming off it was the best thing I have done. - Good luck as you are now on the track to recovery!

  • Thank you! Yes, I think you absolutely right that we need to ask for a referral. Will make an appointment in early January and follow this through. Thank you everyone for your input and advice - it's great to have a community of people to confer with :-)

  • Hi I have just experienced the most traumatic two years following my 12 yr old son's diagnosis with coeliac disease which I diagnosed. I had to fight for a blood test by the GP as he did not present with the 'typical' symptoms. I was then given no advice by the GP other than he would refer my son to a gastro specialist. He should have said say on gluten until the endoscopy to ensure a positive result. But as my son was so ill I immediately eliminated gluten from his diet. I had read how some people had felt really well after only a few days. The opposite happened. My son experienced something called 'gluten withdrawal' which was so severe, it is likened to coming off heroine due to the chemical reactions taking place in the body. Whilst trying to deal with this on a day to day basis, researching for help and info we had no acknowledgement from the medical profession about his symptoms or what was happening. We got all our facts from the on-line community. I was then told to put him back on a limited about of gluten each day by the gastro specialist after 6 weeks of withdrawal. This resulted in just as much pain and the symptoms my son experienced were awful. We had to wait 3 months for the endoscopy. We now know he is highly sensitive and a crumb of bread is enough for him to experience intolerable pain for a minimum of two hours and symptoms lasting up to 10 days afterwards. If he eats a dish that is free from gluten but experiences problems then we know it is due to cross contamination which he again is highly sensitive to. This could be from the utensils used, the prepping area or the cook unintentionally contaminating the food. He also experienced the breathing difficulties you and other posts mention, this was not even acknowledged - only as anxiety, which unfortunately he now suffers with due to the trauma and lack of support he has received. On a positive note his villi returned to normal after 6 months of going gluten free but he is still struggling with his whole body healing and vitamin/mineral deficiency is a big issue so make sure you have regular bloods done to monitor this. I have since read advice by Dr O'Bryan at thedr.com who says you should never go back on gluten once you have eliminated it from your diet, even to get a positive test result - like the other post says you know what is making you ill. Best wishes with your husbands health and I am now involved voluntarily with an health org locally to try and raise awareness of the diversity of this condition.

  • I'm in a similar situation - i have to make myself ill and go sick from work to tick NHS boxes to get a diagnosis.

    Their own blunders mean i was misdiagnosed for 7 years with IBS. As usual, no one is accountable. Saw a private professor out of desperation and he diagnosed coeliac. NHS refused to accept it as i don't have the tga antibodies. They failed to do an Iga deficiency test which they should have done on negative tga.

    NHS refuses to offer prescriptions or referral to gastro as i clearly need a biopsy for a definitive diagnosis.

    Also have low calcium and everything else due to absorption issues. Been left to deal with it myself. NHS gp thinks all problems solved simply by not eating gluten - not joining the dots between coeliac and my other diseases.

    Now one specialist - who i saw in relation to thyroid issues, has recommended duodenal biopsies - as has my NHS surgeon who is due to remove a polyp up my back passage (connected to coeliac?) so maybe i'll finally get the biopsies

    HOWEVER, the professor - who i rate highly, tells me i have to eat gluten at least 5 days prior and the biopsy may still not show the damage to my intestine because it will have started healing.

    Just one of many examples on NHS incompetence that causes taxpayers like me a world of misery and inconvenience

  • Grrrr! It just is not right this box-ticking exercise.

You may also like...