Some advice please...should I get re-tested for Coeliac Disease?

Hi all,

So I’m fairly new to this site and this is my first post but I’m after a bit of advice please.

I’ve been gluten free for several years now; I initially cut out it out because I could tell I was intolerant to it. I have had the blood test done for CD, however my GP failed to tell me (and in my naivety) that I had to have gluten in my system for the test to be accurate, so obviously it came back negative.

After reading on this site (and others) into CD a bit more, I’ve been debating having the test done again to find out for definite if its CD or if I’m just wheat/gluten intolerant.

So I took the plunge and ate some wheat… it completely knocked me out! I had to take time off work because I felt so bad. I only had some measly breadcrumbs, but I haven’t felt that bad in so long! I’m back at work now (a couple of days later) but still feeling rough – headaches, tiredness, stomach pains, mouth ulcers, etc.

So the point of my question is - is it worth feeling that bad and eating gluten for six weeks at least once a day to have the blood test again? Or should I just continue excluding gluten as I have been?

Your opinions are much appreciated.

N1k17a x

Oops - maybe should have posted as a question not a blog!

26 Replies

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  • Don't do it. I got sent straight to gastro and they persuaded me to do a gluten challenge. I was ill for months after and for what?! I get bread on prescription that's it. I had managed three years of going solo before succumbering to the gastro team just for them to confirm what I already knew. Xxx

  • Hi,

    I agree dont do it, its really not worth it. I had to do it for almost 4 months before being diagnosed and was one of the worst experiences of my life. Nowadays there isnt really much to gain from being diagnosed. And the prescription stuff is not that nice and some of it has wheat starch in, which they say shouldnt affect you but really.

    If you've already been doing it for so long I cant see much point in having a doctor confirm it while physically poisoning yourself for their benefit.

    Hope it helps xx

  • I ate gluten free for several years, like you, and then an allergist wanted me to have the gastro team test me for Celiac Disease. I was told I would have to eat gluten for 6 to 8 weeks and then have the tests done. I knew, like you, that it would make me unbearably sick, so I declined. The gastroenterologist decided to do the DNA testing to rule out the possibility of me having CD, but I did have the genetic marker. He tried to talk me into the gluten challenge and tests again, but I continued to refuse. Gluten makes me deathly ill ... I don't care why... I won't ever eat it again. I'm happy with my decision and have no regrets. I don't need another diagnosis... some people need to know and I respect that. I'm just happy the way I am: living a gluten free lifestyle.

  • Just tell them you have been eating gluten. Blood markers might still be elevated. If they are, they will do the biopsy. If they are not, perhaps you can still convince them to do the biopsy. If you really have CD, then biopsy will surely confirm villous atrophy. Even if you have been GF for several years, your villi will probably not have recovered to 100%.

  • Not really accurate . If you have been gluten free for a few years your villi will be greatly recovered, that is assuming you are coeliac. If wheat intolerant villi should be ok anyway.

  • I agree with some of these comments = don't do it. My Doctor refused prescription foods for me unless I ate gluten for 6 weeks and have a 2nd blood test, I expained to her that I would buy the gf foods rather than eat gluten. I was glutened last week and I think its the worst feeling ever. Bed and warm water helped after four days but to eat gluten just to confirm what you already know would be foolish,

  • I'm in the same boat. Unless you have an economic need to access the prescription food you're better off not doing it. A sympathetic GP will be happy to put on your notes that you are non-coeliac gluten intolerant, you can still ask for GF everywhere and you can tell people you're coeliac if it saves explanations. If your GP is hopeless you won't benefit from diagnosis anyway as they won't say or do anything you cannot work out for yourself! Finally if you have private health cover it's cheaper not to be "officially" coeliac, you don't have to declare a personal dietary preference do you?

  • Hi, I had all blood tests and genetic markers done last year and all were negative,continued to feel really rough so had endoscopy and biopsy showed villous atrophy. Had a follow up biopsy and villi back to normal. Advised to start eating gluten again and for 4 months I was really well but then I suddenly felt like I had been hit with a sledge hammer! Another biopsy indicated that I had abnormal villi ,so back to square one and gluten free. Don't go off you gluten free diet ,it's just not worth feeling so ill ! I have been diagnosed with gluten sensitive enteropathy it's just a name at the end of the day. X

  • Thank you all so much for your comments. I think I'll stay GF as I am then. If the prescription bread is anything like some of GF free breads you can get, I wouldn't have it anyway (not a huge fan!) And if that is the only benefit to being diagnosed I guess it's not worth it at all.

    Thank you again. Here's to a happy (non-diagnosed) GF life!! xx

  • Hi

    I am also new to this site. I am in the middle of being diagnosed, and I too have been told I have to do a gluten challenge next time I see the consultant. I am in two minds as even after just 2 months gluten free I can really feel the difference.

    Dartmoorguerilla please can you elaborate on your comment about private healthcare, as I am seeing a consultant through bupa.

    Many thanks

    Alison

  • I am a confirmed coeliac from the age of 13, some 71 years ago and have coeliac cousins, but my local PCT stopped prescribing gluten free unless one has a recent diagnosis. Because of chronic allergies I have to take daily doses of antihistamines, so the hospital said to eat white bread and pasta for just two weeks and stop taking the antihistamines at the same time. THREE MONTHS LATER, I ended up as an emergency patient in hospital, where I was told I had severe gastritis.

    My reaction to the gluten for that short time had done the damage and also triggered, as it does a bad reaction to DAIRY products too!

    TODAY, MY GP WROTE TO SAY GLUTEN FREE PRESCRIPTIONS HAD BEEN STOPPED FOR FRESH BREAD AND EVERYTHING ELSE APART FROM "HALF BAKED ROLLS" (no comment) STANDARD BREAD (whatever that is) and BREAD MIX.

    The new NHS Commissioning Group has done this! Have they themselves ever tried to bake and eat this sort of bread? I think not!

    So look out, your prescriptions are in jeopardy now, so get in touch with your MP and demand that these CCGs try out their restricted prescriptions in order to make fair decisions

  • My 14 year old son is currently faced with this dilemma. He's been looking and feeling so well since giving up gluten a few months ago. Now he's been told to start eating it again so that they can do an endoscopy but he just can't face it.

  • While I understand your dilemma - I certainly wouldn't be able to eat gluten again for that long, a diagnosis isn't only about getting food on prescription, you also have yearly blood tests to check your antibody levels & to see how your villi is healing plus a dexa bone scan to check the density of your bones for osteoporosis. Also to check you are absorbing calcium properly & to check your B12 & iron levels.

  • Yes I agree with Valw, I just been diagnosed three week ago and before I'd been dipping in and out of gluten for years and feeling really ill, taking ingestion tablets non stop. Never really knowing for sure what was making me feel so ill but it as when I went to give blood it changed for me. They would'nt take my blood and when I explained how I felt to the nurse and all the ingestion tablets i'd been taking she said you can't go on like this you've got to get to sorted!

    Wasn't a great experience getting diagnosed but now I know for sure what's was making me ill . I've found outt my Iron levels are low, I've got a problem with my thyriod, but still waiting for my bone test and still waiting to see a dietition!

  • Hi Alison (Ajt02), what I meant about health insurance is that your cover gets more expensive for every confirmed diagnosis of every condition you have. So if your condition is like coeliac i.e. something you "manage" as opposed to something you "get treated for", it's cheaper to not officially know. Then you don't have to declare it.

    Same goes for life cover and travel insurance, they all get more expensive if you are diagnosed with stuff. So unless you need the food prescriptions... no benefit to being "official".

  • P.S. a good responsible GP will do your bloods and dexa without an endoscopy-based diagnosis.

  • I was wondering about this, my doctor was quite happy to send me away telling me I probably have gluten sensitivity seeing as I'm better when gluten free , so I hope I can go back in a year and ask for a blood teat to check everything's ok, I don't see she not. But who knows?

  • * I don't see why not

  • Thanks DartmoorGuerrilla, I hadn't thought of things like that!

  • I have just done a gluten challenge to get a formal diagnosis after 6 yrs gluten free and healthy. It wasn't pleasant but I approached it with a bucket list of gluten containing foods i wanted to try one last time which made it much more bearable - and at some points, fun. I scheduled some extra days holiday from work during the challenge, and chose a month with bank holidays to give me maximum opportunity to rest and recover.

    Now I have a diagnosis I know that I will get supplements as necessary and dexa scans so am unlikely to develop osteoporosis which in turn should improve my quality of life as i get older. For me, I am happy to have traded short term illness for a long term monitored and managed health condition.

  • Please tell me, how long did you eat gluten before being tested and how much gluten per day did you eat? My gastro. just told me I can be tested without a challenge despite the fact I've been off gluten for a year...I'm like what? time for a new gastro.

  • I'm presently doing a gluten challenge. Three servings a day for a month, then blood draw. Eleven days in and I feel like crap! Intense low gut pain, body aches, headache. I'm looking forward to going gluten-free again but am trying to indulge on those things I've missed. I'm sick of having mystery illness and want to confirm or rule out once and for all. Anyone know if I should continue to stay off antihistamines while on this challenge? Thx!

  • Once you get diagnosed you should get treated differently and have specific annual tests and visits to a dietician. So if you don't go the diagnosis route then you need to make sure that you get your annual bloods and DEXA scan done. Also if you have kids with suspected CD then a diagnosis helps get their problems taken more seriously.

  • (Sorry for delayed response)

    Thank you everyone for your comments. Well, I'm back in two minds again about retesting! Whilst I do feel better and healthier for being on a GF diet, I guess I just don't know what else is going on inside my body. I guess the best thing now would be to just bite the bullet and discuss it all with my GP again.

    Katethebake - a bucket list of gluten foods is a great idea thanks!

    I will have to start planning what month I would be able to take time off work to recover!

    Thanks again xx

  • Yes. I would agree that this is the best way forward. Although some commenters will say that the test is not accurate, if you are an adult, it is very well possible that your villi has not fully recovered even after a long period of GF diet.

    celiacdisease.about.com/od/...

    More than four out of five of those celiacs experienced what doctors call a "clinical response" to the diet — in other words, their celiac disease symptoms got better or disappeared entirely. But after two years, their biopsies showed that only about one-third had intestinal villi that had recovered fully. After five years, about two-thirds had fully recovered intestinal villi.

  • I am now 25, I haven't eaten gluten for about 6 years (although I did 'cheat' quite a bit in the beginning !!)

    I will go to the GP prepared this time after the "fob-off" last time and discuss it all, especially before I go anywhere near gluten again ! x

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