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If you suspect coeliac disease or gluten intolerance but don't eat gluten, would you start to eat it again to be tested?

(15 Posts)
RattieOfCatan Wed 06-Jul-16 13:42:05

I have been ill since I was a child, various things that left me convinced that I had fibromyalgia. After years of begging to be listened to, I (finally) got referred to the local CFS clinic but have been told I've not got that, they recommended to my doctor that I be referred for further investigation into a fibromyalgia diagnosis, among other things, but doctor is refusing to refer me to anything hmm (though I relocate in September so will pursue further then).

However, in desperation 3 or 4 years ago, after being ignored and fobbed off by numerous doctors for years, I gave up eating gluten as a friend kept suggesting to try it. I did, not thinking that it would work at all, and my symptoms got a bit better within weeks (some, like my bladder and brain fog, within days) and within a few months I was much much better though still had these issues to an extent. I have eaten gluten occasionally since but now i know my reaction to it I only ever have it very occasionally and only in small amounts when I knew I'm home the next day and can deal with the aftermath (headache, feeling hungover, bowel issues, fogginess, etc) I also have things with traces of gluten in but again, it's limited and I don't react very badly to that as long as it's not regular.

Ihave been tested for gluten intolerance as part of the CFS referral process and it came back negative, but this was over a year after I had given it up. It has since occurred to me from looking at the symptoms that my symptoms could, to a massive extent, be a gluten intolerance or coeliac disease, rather than gluten being a trigger for what I still think is fibromyalgia, which is what I've always assumed.

I noW know that in order to get an accurate reading I'd need to start eating gluten again for a certain amount of time before having the tests done. But that would mean the symptoms coming back horribly for that time and probably by the end of a 6 week period I would be struggling again. I'm currently pregnant so definitely not planning to do it now or any time early in baby's life, but DH and I are considering whether I should get tested properly next year when we'll have a lot of practical family support available if I get ill again for that short period.

I'm so fed up of people being dicks about me not eating gluten and being quizzed publicly and loudly by family members about why I'm joining in a fad and being so ridiculous. It is a separate issue (my family don't believe that I have anything wrong with me so my not eating gluten because it affects my state of health is bullshit to them) but if I have got coeliac disease or a bonfide gluten intolerance it would make life so much fucking easier to have both family believe me and a doctor believe me. I'm so fed up of being painted as a fucking hypochondriac when I know that something is actually wrong! But is it really worth the symptoms coming back just to check that?!

schilke Wed 06-Jul-16 13:53:33

No. Ds2 (16) been gluten free since age of 5. GP suggested as he has bloating, tummy aches etc.. Magical improvement. Put him back on gluten at age of 9 for coeliac test. Test came back negative. Doc said he must just be sensitive to gluten. Been gf since then. I know negative coeliac tests are common when you are actually positive for it, so he could have coeliac and just not know.

Meanwhile dh has had stomach issues since a teen. 3 years ago he gave up gluten. Huge improvement - no dashing to the loo, stomach aches gone and lost a stone in weight. No way dh would go back on gluten for the test. If anyone questions dh is happy to give them tmi!

RattieOfCatan Wed 06-Jul-16 14:03:07

I usually am happy to go full blown tmi as it pisses them off but the biggest improvements for me havent been bowel related, it's been the rest of the symptoms so it doesn't gross them out so much! [Grin] Which is why I never thought that I could be gluten intolerance or coeliac disease to start with. It also doesn't help last time I was inquisitioned over the buffet table angry I did end it by stating that I would refuse to discuss my bowel and bladder habits over food but it shouldn't get to that point, especially from somebody whose youngest is coeliac!

Interesting to see you say that some tests are negative despite actually being coeliac, thats not reassuring!

PollyPerky Wed 06-Jul-16 15:28:26

The biggest issue for you seems to be the attitude of your family and friends. Just bat them away! Loads of people have genuine food intolerances and although some people are just jumping on the bandwagon that doesn't mean others don't have real issues.

As you will know, coeliac is an auto immune disorder and intolerance is just that- more of a low grade allergy. Coeliac does long term damage to the gut and the only real way to diagnose is a biopsy of the intestines to look for this. Blood tests can be negative for people with low level coeliac.

I think you should stick with the status quo. I've been gluten-free for over 20 years due to intolerance that affected my bowels and bladder. I can tolerate a small amount eg a slice of cake very occasionally or a small piece of quiche- but all my bread is gluten free, don't eat pizza, pasta is gluten free etc etc. Cakes etc are home made with gluten free flour.

Personally, I'd not risk making my symptoms worse by eating enough to be tested. If it's a positive test then you have to go back to eating no gluten, if it's negative it might be a false negative so you are still in the same position! You have to ask yourself what the benefit is- if any- of having a 'real' diagnosis. Is it to convince other people?

Comeonmommy Wed 06-Jul-16 15:51:43

I have Fibro and CFS and gluten doesn't trigger Fibro - you have it pretty much 24/7

As part of the fibro though you do have IBS which can be triggered by gluten. I have been tested for gluten intolerance and was told I had to start eating gluten or the test would show a false negative. I am not intolerant to gluten it turns out - will continue to try to work out what triggers my IBS.

SomedayMyPrinceWillCome Wed 06-Jul-16 15:59:48

My mother is in a very similar situation to you OP. She has decided that the pain & symptoms associated with eating gluten again in order to get a diagnosis are simply not worth it. She eats gluten free & remains well but has decided not to pursue a coeliac diagnosis

CaroleService Wed 06-Jul-16 16:13:01

Nothing would make me eat gluten knowingly. Nearly 40 years on, I remember the pain and other symptoms too well to risk it.

RattieOfCatan Wed 06-Jul-16 17:12:20

Just a quick response, I am still ill, but significantly better since giving up gluten, which is what I mean by it triggering fibro. I am still pursuing that diagnosis but giving up gluten made me go from having no life and struggling with day to day activities to being able to cope with the symptoms I have and them lessening significantly, the only thing that had gotten worse since giving up gluten is the joint pain which has spread rather than getting worse on an individual joint basis.

RattieOfCatan Wed 06-Jul-16 18:46:49

I think that the only other 'real' benefit would be just knowing that I have a partial answer. Having had issues for 15 years with no answers and not being believed by anybody, including the person who sat with me at night when I was in tears from the joint pain and having it get worse (I had a period of a few years where it all went downhill very quickly and then plateaued again, this was before giving up gluten).

But if the tests are likely to be negative anyway and I'd need to do it for an extended period beyond the blood test it very likely won't be worth it, I can imagine that getting them to agree to a biopsy would be difficult after a negative and then the waiting list too.

The main fibro symptoms I have that are exacerbated by gluten are the brain fog and bladder issues, they became manageable very soon after giving up gluten, the bowel problems and bloating were just a bonus tbh. I think that the fatigue lessened too but that could have been as much the brain fog not being so much an issue anymore that improved that too.

PollyPerky Wed 06-Jul-16 19:01:46

Have you looked at the website for coeliac sufferers for advice?

You won't get a positive biopsy if you 'just' have an intolerance; it will only show gut damage in true coeliacs. If you are coeliac it's very important to understand the possible long term consequences of not controlling it through diet - your guts won't absorb many minerals and you could end up with osteoporosis, for example.

If you are worried then ask your GP to refer you to an immunologist, or a gastroenterologist, or a dietician with training in food allergies and intolerances. eg www.wisediet.co.uk

If you think you are having symptoms because of intolerances, why not try the 'stone age' elimination diet for a few weeks because your joint pain may be caused by other foods as well, not just gluten.

BumbleNova Wed 06-Jul-16 19:03:27

OP - there is a genetic test that they can do, i had it done as part of a blood test screening when I went to see the gastro-enterologist. there are specific genes you need to be a coeliac and if you do not have them it is an easy elimination. maybe try that route? if it is positive, then reconsider? I decided I didnt want to go through it and my mum made the same decision. bread crumbs alone knock me out for days though, so only you can judge whether its worth it.

Qwebec Wed 06-Jul-16 19:07:21

I'm not sure how people get to justify being so insensitive, but I'm not sure a firm diagnosis would change much even if you get it. Surely regarding gluten what is important is that you discovered you feel better without it. There is nothing else worth saying to them. You absolutely do not need to do the test just to prove them wrong. Don't let them mess you around. Just say you feel better with out it and change the subject.

Buntingsmum Wed 06-Jul-16 20:29:27

I've just gone GF for 10 days now. I've had a negative celiac blood test the end of last year but I haven't been to the Drs about it since. I was feeling terrible though so thought it was worth giving GF try, and I feel so much better (like you not just bowels!). My plan is to just stick with it for a good few months and see how I go. I might then try gluten again and see the effect. I don't like the sound of a biopsy, and wonder if I am intolerant rather than celiac, so if all stays good symptom wise then I'm just going to stay GF without diagnosis.
Sorry to hear that people are being so unhelpful to you about it (sigh).

Pleasemrstweedie Thu 07-Jul-16 13:21:58

I think people generally are unhelpful. I had to beg my GP for a coeliac screen and when it came back negative, that was the end of the line.

I then went gluten free and within days had no fatigue, no joint pain, no gut issues, no skin infection.

GP referred me to a gastro, who I saw last week. He told me I shouldn't exclude gluten from my diet because I am not coeliac. He just didn't get it at all.

I'm pretty sure I'm at least gluten sensitive, if not actually coeliac, but it doesn't look as though the NHS is going to help me find out or support me in making sure my GF diet is balanced.

PollyPerky Thu 07-Jul-16 16:15:18

I don't think you need the NHS Please- looks as if you have found the answer yourself. Gastros have to have an interest in food intolerances and many won't- they deal with the black and white of disease.
There are millions of people on GF diets who have never had intervention from the NHS (inc me for 20 years). If you are concerned about nutritional deficits, look online or see a dietician privately- might cost around £80 or so but well worth it if you are worried.

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