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Is This Coeliac - Worth Getting Tested?

Posted , 6 users are following.

CgButterfly
CgButterfly

Hello. I cut out gluten over 3 years ago on the advice of a friend, as I was constantly tired, and immediately felt so much better. More energy, and I hadn't realised the level of digestive discomfort I'd been living with.

Periodically I experiment with re-introducing gluten for a day or two, to make sure it is gluten I react to. It is. Each time I do this, it seems to get worse.

On Friday night I had pizza and garlic bread.

What scared me this time is that last night I had *severe* abdominal pain - to the point where I just curled up on the sofa - and vomiting. I called 111 but the doctor there thought it was just food poisoning - I am fairly sure it wasn't, it just didn't feel like that, and I hadn't eaten anything likely to result in food poisoning (plus usually the effects can be felt after eating something dodgy within a couple of hours, the pain started early evening).

I never want to have that level of pain again.

Could this be coeliac?

If so, how on earth do people get through 6 weeks of eating gluten before getting tests? I generally couldn't do it. Not only the attack of acute pain and vomiting, but also I'm feeling generally tired and bleurgh, diarrhoea, and so bloated I always get a seat on the bus. How does anyone cope with this? I can't really have been living like this before going gluten-free, can I?

On the other hand, I do feel I need testing. I know coeliac disease has other effects that need monitoring, not being made of money I could do with prescriptions for gf food, and most importantly I would like to be able to get the people who think following a gluten-free diet is just the latest trend to shut up!

1 like, 6 replies

6 Replies

  • marg04364
    marg04364

    Posted

    It does sound like coeliac disease. Although some people have different symptoms to others. So not all coeliacs will have nausea / vomiting. Some don't have diarrhoea.. but have bad rashes on parts or all of their bodies. Many people do not have the small biopsy test to prove it is coeliac disease because of the fact you do need to be having gluten for a few weeks before having the test.

  • claudiabkr
    claudiabkr

    Posted

    It might be coeliac disease, it might not. Unfortunately, both the biopsy on your bowels and the blood tests (there are two that can show if you have the disease) need you to have gluten in your diet in order to yield the correct results.

    Even then, the blood tests may come out negative, since a percentage of sufferers from coeliac disease never actually develop the antibodies that are measured by the blood tests.

    People have different symptoms: some have terrible headaches, some have severe heartburn and abdominal pain as you have described, some have skin rashes, some have diarrhoea, some have a combination of all of these symptoms, and then again some have little to no symptoms at all.

    If you can, do get tested. And regarding the people that may think you are just following a trend, ignore them, you don't owe them any explanations anyway.

    Good luck!

  • Avocado
    Avocado

    Posted

    Butterfly (and others): your experience of vomiting after eating lots of gluten is familiar to people who have been on a gluten-free diet for a long time. But you need to notice one thing: anyone who has had a perfectly gluten-free diet is likely to experience severe symptoms when they suddenly eat lots of gluten-rich food at once!

    So feeling sick after a gluten-rich meal does not necessarily prove you have a celiac disease, but I certainly have it, and those couple of times during these nearly 20 years I have accidentally eaten a whole dish with wheat I have always vomited afterwards. Of course I did not vomit all the time before I was diagnosed. This reaction only comes when you've been on a gluten-free diet for a long while.

    I agree with Claudia that you should get yourself properly diagnosed. If you really have CD, you should not be trying out gluten every now and then, because it may and will do damage to the intestines that takes a long time to heal.

  • osborne
    osborne

    Posted

    cgbutterfly hi, Your intestines will have repaired by now, so at moment test I think would show ok. Should have been tested earlier before going GF. Not sure how coeliac can be tested now. Unfortunate as if truly coeliac some GF food could be had on prescription. Also perhaps you only react to wheat . Can you tolerate oats, rye and barley.
  • belinda71630
    belinda71630

    Posted

    Apparently, if you are gluten Intolerant and you have been eating GF for some time and then eat gluten again your immune system will react even more violently than before. In November 2013 there was a fantastic series of presentations from 29 leading world experts on gluten sensitivity, entitled "The Gluten Summit" available from theglutensummit.com.. It was available free, but is also available to purchase. A short follow-up webinar is currently available but only till 2 Feb. If you're really quick you may be able to register and get free access to 5 of the original presentations. The info presented was amazing - not to be missed for anyone who suspects gluten may be a problem but doesn't know where to go.
  • belinda71630
    belinda71630

    Posted

    Hi Cgbutterfly. My original reply post for you has been delayed as I put in a web address and it has to be scrutinized and approved. I'm afraid you will miss out on the info I gave you as it must be followed up on today. Please do an internet search on "The Gluten Summit" and register for the current webinar. Good Luck.
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