best way to approach doctor if you suspect coeliac

Hi there,

I have been having symptoms for years and years that I can't get an answer to. The most persistent is fatigue, some days I find it impossible to get out of bed.

I can trace things back to around puberty, I put on weight for no reason, was diagnosed with exercise induced asthma and migraines and always seemed to have chest infections, nasty bouts of bronchitis and sinusitis all of which would drag on and on for weeks and in some cases months. I also started to do badly at school...I was in top sets and expected to do well but I found concentrating hard and didn't get homework done...I think I was just so tired.

Even before that I had things that now seem really coeliac, I used to feel really starving and shaky between meals...but my mum would tell me I had to wait for dinner and often after a couple of mouthfuls I'd feel sick. I remember often having to lie down really still waiting for it to go away. Also I had childhood eczema and funny rash across my cheeks.

Anyway...I've just hit a situation where I left a uni course (not for the first time unfortunately) because I'm too exhausted to cope...I tried to push myself but ended up with horrendous migraines and just couldn't go on.

The response from doctors over the years to my TATT has been really useless. I've got to the point where they make me feel like I'm nuts and bothering them for nothing. On average I end up going once a year with the tiredness because it's having such a profound effect on my life. Sometimes I've wondered if I am just lazy, but why would I keep putting myself through things like uni courses and career changes if i was?

I went around this time last year, the doctor was particularly rude but did say she'd test for coeliac, which I'd never heard of. I rang for the results about 3 times with no feedback, the receptionist just kept asking if i'd been tested for coeliac, which made me think that might be the problem. I went away and looked CD up and decided to go gluten free as I was on another course that I desperately need to get to the end of. I was called back for another blood test which came back negative. I spoke to the doc on the phone...she didn;t explain very well and said the first result was an anomaly. I wasn't told to eat gluten or asked if i'd stopped and since have found out it could have changed the result.

I ended up back at the doc's this April...older guy who didn't do coeliac test. Results came back and I was told they were fine but, despite deciding to tackle diet and exercise as a way to improve my own health kept having really shocking days. Went back and he said my iron was low(from previous tests....why he didn't mention it before then??) I asked about coeliac and he just looked at me and said 'You're not coeliac'. I asked why I'd been called back for a 2nd test the year before and he said I'd have to ask the doctor who did the tests.

I've changed practice and have so far seen teh asthma nurse who was lovely, so I tired to ask about coeliac. She was nice, but said something along the lines of ask for the test but you might not get the result you want and you'll have to live with being tired.

I'm 37 and feel less lively than my 75 year old mother...it can;t be right. How do I approach the next appointment...any tips?

Sorry for epic post...just frustrated at lack of help from doctors.

28 Replies

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  • What a shame I think you should persue this and if needs be save up and have a private test done a totally different subject but me daughter felt my 9 yr old grandaughter who is extremey bright but cannot spell and is a slow reader

    ( although up to standard nationally - low standards I believe) may be dyslexic she talked to the school who practically laughed saying dont be silly she s one of our brightest pupils et cetc she pushed for a test which the school did and came back saying no she is absolutely fine in fact about average. My daughter struggled but paid for a private test she is 90% dyslexic with a true reading age 2 years behind her true age I am just trying to illustrate that sometimes you eed to step out of the norm

    One other thing if you prove to be not ceolliac Have you ever been bitten by a tick,- that can cause ME type symptms with severe tiredness again its not something recognised by many doctors and the tests can have vague results but worth educating yourself on the internet if you have I have a collegue who has been virtually bed bound certainly house bound for years through just that but she has had to fight and fight for medical recognition

  • hi lazydaisy,

    thanks for reply, glad your grandaughter got the help she needs.

    I know what you mean- symptoms, especially fatigue, can be be caused by any number of things. Self diagnosing is daunting...the reason I want to check for coeliac is that the original test must have come up with something for me to be given another test....it's just a niggle that I need to put to rest even if it comes back that I'm not....at the moment I feel like I could be doing myself harm with what I eat so I need to find out to at least reassure me that I'm not.

  • I think the nurse was saying ---- "yes ask for and get the test but be prepared that the result may not indicate CD ( the result you want)", But for your peace of mind I think you should still have the test --at least you will not have to keep second guessing yourself---of course you could try being GF--- if it has a good result , go to your GP tell him, then go back on to gluten to get the test done.

    BE aware:because:-

    I have crushing fatigue, migraines, painful joints, restless legs, vertigo, nausea and Raynauds and this is with being strictly GF so your symptoms are not necessarily CD.

  • Thanks 1stgls, have you been diagnosed? The reason I want to test again is that something obviously showed up on the first test I did....I'm not sure why I was asked to do a second, but by the time I did the 2nd I had been gluten free for a couple of weeks. I had no idea at the time the 2nd result came back that being gf could affect the result...but I regret not asking for a proper explanation of what had caused the doc to request a second test. She'd basically called me a hypochondriac in the consultation so I feel like she didn't want to be proved wrong...or is that too cynical?

    It's not that I want to be coeliac...I just don't want to feel so awful that it affects my life to the point it does, so as you say ruling it out would at least cross something off the list.

  • Sorry, can't help on how to deal with the doctor but your situation rang some bells. I was diagnosed with an autoimmune illness a few years back and despite treatment was exhausted all the time, went repeatedly to the GP who ran tests on me, said everything was fine and now, I think, thinks I'm a hypochondriac.

    I just got tireder and tireder and (being in my mid-forties at the time) kept thinking it was oncoming middle age, though gradually came to realise that most of my contemporaries didn't think a holiday abroad was something that was too difficult to even contemplate!

    By pure accident I found out that I felt enormously better when I stopped eating bread and pasta, read up on it, worked out that gluten might be involved and took a test. I tested negative (and ended up doing it privately, which might be the route you have to take), though I'd only been back on gluten for 14 days after months off it so not sure if that's accurate.

    Anyway, coeliac or not, I went off gluten, without a diagnosis, permanently last autumn and for the last couple of months have had my energy back about 90% of the time. I don't think I've felt this clear-headed in at least a decade. But if I'm glutened accidentally I just want to sleep and sleep (and am moody/upset, headachy, have achy arm muscles, am unable to concentrate, crave sugar). I don't get many stomach issues, beyond some gurgling and constipation, but fatigue is my primary reaction. And it's very clear, now that it's only happening occasionally.

    I'd seriously advise getting tested properly if you can - it's the one thing I regret and now I feel stuck in limbo. But also make sure they're testing your B12 levels (my illness was chronic B12 deficiency, which I've since found out can be caused by coeliac) as it's something GPs often overlook and it can completely wipe you out.

  • Hi freelance ,

    glad gf is working for you. Totally know what you mean about contemporaries not feeling the same...I've said for years I have to choose between work and social life...can't do both, which is why I was on a teacher training course as wanted to do a job I thought I'd love...no matter what job I have I'm sleeping through most of the weekend, so the job is my whole life.

    I had been 'clean eating' about 80% of the time for the last couple of months as a way of trying to improve my own health and kept a diary of everything,,,,looking back a lot of it was gf and my skin really cleared up. Once I realised that going gf before the last test might have caused a false negative I decided to ask to be tested and have been eating gluten...my skin had gone dreadful, had mouth ulcers, bone pains, chronic heartburn and am totally exhausted. How long do I need to eat gluten for before testing, any idea?

    good luck

  • I was told it was six weeks of eating food with gluten prior to the test. I can't face that and am now doing my own diet of gluten free food. Sometimes, getting th Doctor to help is like banging your head against a wall!

  • Beatasthma- yes I have been tested-- i went to a locum in my gp practice (same issue as others; gp does not listen/believe) about something else, my iron levels were checked and he then went on to check for coeliac as I had no other reason for low levels, the anti body levels indicated CD---you HAVE to be eating Gluten for the antibodies to be present in your bloodstream.

    your GP was out of order treating you badly.. I think that maybe your levels are not spectacularly high and the second test was to confirm the levels--- the fact you had been off gluten will have dropped your anti body levels which may be why the GP was sceptical of the first results, but your Dr lacks people skills

    If you cannot get any help from the Gps try having an informal word with the practice manager, they need the practice to be well liked ---there are so many practices around that a bad reputation will impinge on their footfall and money they get from the govt.

  • Thanks again, I was shown to have low iron on the most recent results which made me wonder if it could be coeliac....I can't understand why I wouldn't be getting enough from my diet as I eat really healthily. The doc seemed to think it was periods, but mine aren't bad. I got a print out of the test results as I felt like he hadn't really bothered with me...my alk phos was low on it, and looking that up on the internet it can be due to malabsorption....the doctor said nothing about it...so I feel like I need to get an answer from someone I trust... definitely noone at my old practice.

    I have only seen a nurse so far at the new practice but she was so lovely that I'm hoping the same will be true of the doctors...just had such a long history of upsetting incidents with doctors in the other surgery that I genuinely feel petrified going to an appointment.

  • I feel your pain, your story sounds a bit like mine, i really would recommend that you have your B12 levels checked again your symptoms sound more like that than anything else (although you could have coeliacs as well as!) When i was first diagnosed with B12 deficency and perncious aneamia they had checked my iron levels ALOT and said yeah they are low across the board so i was put on ferrous sulphate and folic acid (which im still on) but didnt get better then i went back to the doctor they said hmmmm maybe i should check you for B12 which is a completely seperate set of blood tests!!! of course it came back extremely low to the point i was hospitalised, the doctor then told me that i should of been tested a long time ago seeing as all of my iron was very very low. Your symptoms really do seem to me to be like a B12 Deficency. Good luck and remember you know your body better than a doctor who sees you for 5 minutes at a time. Be forceful and make a complaint if you have to. I would hate for you to end up in hospital like i did before they will see sense.

    Paula x

  • I too have suffered for years but no one ever suggested I might be gluten intolerant. Last year I was even treated as a patient with a heart problem. I had to pay for a private consultation with the Heart Specialist who said I did not have a heart problem, not even Angina and was told to stop the heart medication immediately. My first blood test for coelliac came back negative but to have a second I have to eat food with gluten for six weeks prior. No way, I am buying and eating gluten free food and feel ten years younger.

  • I'm so sorry to hear you've been feeling ill. There is an OTC at-home test you can do yourself (I don't know how people feel about that here, but as a last resort you could always give it a go) available from Boots or online. I think a six to eight week gluten challenge (two slices of bread a day or equivalent) is considered sufficient to show up on your tests.

    Have you been tested for hypothyroidism? Along with deficiencies in iron, vit D, B12 and coeliac, this is a common cause of tiredness. Mind you, I'm being treated for it and am still exhausted, so thyroxine isn't necessarily a silver bullet, but it is better to be tested and treated if you do have a problem.

    Good luck!

  • @Angelbelle thats terrible OMG! i have been mis diagnosed with pretty much everything lol but not as bad as you .

    Paula x

  • Hi there, i`m willing to bet you have autoimmune thyroid problems. ask doctor for a TPOab test . if you have one autoimmune problem then you may have another. asthma is autoimmune and so is coeliac. i have Rhumatoid arthritis ,

    Hashimoto`s and coeliac, also dermatitis. my mum had most of these and my gran had asthma, and RA.

  • So sorry to hear you are struggling.

    I've been through years of battling through GPs with tiredness. It sounds so vague doesn't it, but like me, you'll know it can really upset your whole life.

    Your tiredness could be any number of things; coeliac, thyroid, endocrine problems, hypoglycemia, andrenaline, VitD deficiency, VitB deficiency, cortisol, loads of other things...

    I think you should start by preparing to see your GP. The last time I did this I printed off a symptom checker from thyroidUK, then also jotted other things around the side that I thought could indicate something. I also logged sleep patterns, kept a food diary, and logged my daily routines and how I felt. This ended up being a big wodge of paper to take to the doc, but I felt it said so much more than 'tiredness'. You could try this for about 3 weeks prior to the GP. Also, when I went I told the GP where I got the symptoms list, but also said I wasn't self-diagnosing, but it had been a useful way to think about what was going on with me.

    As an already diagnosed coeliac, at first my GP said I'd eaten gluten. When I told him that I'd cooked everything that had passed my lips for the last 18 months he changed his mind and said I was depressed! I insisted it wasn't, and then agreed that I would consider a depression diagnosis only if everything physical had already been ruled out, and got him to refer me to an endocrinologist. I would suggest this would be a good person for you to see too, as he is the blood doc, diagnosing hypoglycemia, thyroid, diabetes, adrenaline problems and more.

    After my referral to the endo I was diagnosed with Reactive Hypoglycemia. (What you said in your initial post sounded quite like what I have been through these past 3 years).

    So... take notes on everything you eat, do, feel and poo for 3 weeks (at least) then get yourself to the docs. Be informed and insistent at the appointment and make sure you get an endocrinologist referral. Make sure he knows that your degree of tiredness is not normal and that it is affecting your life severely. If you need to (I did, because of the state I was in!) rehearse the doc's appointment like it is an interview. Do not leave without having moved your situation forward. If he insists on doing bloods without referral (and you can't budge him) get these things done:

    coeliac IgA screen, vit D2, vit D3, calcium, Vit B12, Iron, Ferritin, TSH, FreeT3, FreeT4, Thyroid Anti-bodies, Cortisol, white blood cell count.

    That will check your thyroid, coeliac and some other auto-immune diseases and will pinpoint anything wrong with your bloods (but not diabetes/ hypogycemia).

    I am proof that this works - I haven't looked back since my latest diagnosis and have gone from feeling 80 and not being able to walk to the shops some days to getting back on my surf board, hiking and canoeing most days. It can be done!

    Good luck.

  • Thanks very much for this, I know it's partly allowing myself to be brushed off that is prolonging things...because I've felt 'off' since childhood it gets difficult to even know if you are being OTT and should just get on with things, which is what I end up thinking after an unsuccessful appointment, only to be hit by fatigue that stops my life in its tracks...it's happened so many times now that I've run out of excuses like, 'oh well that course/job wasn't for me I'll try something else'.

    I don't know if this sheds any more light but I was diagnosed with PCOS at 21...symptoms started a lot earlier. I've always felt all the problems I have are linked but doctors tend just to treat everything individually. At the appointment a year ago it was my inability to shift weight along with the fatigue that was bothering me...they always use the calories in/out as if I'm sitting on the sofa with my face in a bucket of kfc,but because I've had the pcos I've always been really interested in nutrition and although I have occasional times when I crave sweet stuff to the point i'd kill for it...80% of the time I'm eating homecooked, low fat, wholegrain etc, and I walk at least an hour everyday (except when I'm totally exhausted) so I can't explain why I seem to be getting bigger.

    I had thyroid, B12 and folate on the last lot of tests and was told they were normal. I am wondering about hypoglcemia now as pcos is to do with insulin overloading and I wonder if it could in some way be linked. It's so hard though, I'm not medical so I don't know but I always feel if I go in just saying 'tired' I'm out of the door in minutes with nothing.

    Thanks again for sharing your experience, it gives me hope.

  • Oh crikey! Reactive Hypoglycemia is a symptom of PCOS. I'm being investigated for that following my RH diagnosis. It is VERY VERY linked!

  • this is interesting...and you have a coeliac diagnosis? I'm so sure one thing causes another and I wish medicine would treat people as entire beings...something wrong in one area can surely knock something else out of whack. I will mention all of this at my next appointment.

  • Ask if you can be referred to the endo for a glucose tolerance test.

    I now eat 6-8 times a day and have virtually no carbs, not even wholegrain. My meals are very small and are protein/ veg/ fat based. I do not have ANY sugar, not even fruit (because of the sugars), no caffiene and I should have no alcohol, but I cheat and have a high fibre meal and a glass of wine now and then. Since doing this (about 8 weeks) I have lost 11 pounds naturally, whereas like you, I was piling weight on even though I had a very nutritious, healthy diet and exercise when I could.

    The turn around has been utterly miraculous - I'm sooooo pleased to have put tiredness behind me (until something else comes along ;-) and my mood has changed too.

    I suppose you could try the diet for a couple of weeks with no harm done - the first week was hell from sugar withdrawal, but after that I have felt like I could conquer the world!

  • That sounds really like it could be it...even though I've been a bit overweight since about 11 or 12 (and getting quite a lot overweight as time goes on) my dad will always announce that I only have a little appetite whenever there's a family meal... embarrassing as I obviously look like an overeater.

    I have always had trouble with normal size portions...when I'm on my own I eat off side plates, but I will be hungry again in a few hours. When I eat a regular portion I can feel quite sick after.

    The worst I ever felt was when I had a boyfriend who was a foodie and loved taking me out for meals. It kind of skewed my appetite, I got the biggest I'd ever been, felt exhausted all the time and my mood was awful (hence he's now an ex-boyfriend)

    I don't feel I ever got proper treatment for PCOS they just said 'lose weight' which, as it was my most prevalent symptom, is like saying don't be ill. I will definitely ask for a referral to an edicrinologist...thank you so much...I feel this is going to be the start of finding an answer.

  • I agree with Sassyl about the effects of food, cutting out all sugar and cutting down on carbs has really helped my energy levels and kept my weight under control. I do eat some buckwheat and quinoa at times, which seems to be ok for me.

    Good luck with getting a diagnosis.

  • Honestly, the best route to take is just go gluten free and trust your body. If you have a problem with gluten you will instantly feel better when you have been off it for a while. I used to crave a firm diagnosis but now I have been off gluten for around a year and have never felt better in my life - I would never go back to eating it. I had multiple symptoms, vertigo, brain fog, bloating, hair falling out, stomach cramps, joint pains, raynauds, mood swings you name it, so just trust yourself and don't bother with a diagnosis. If you feel better you will know. My doctor thinks I am a complete hypercondriac but I don't care. Every time I mention gluten they roll their eyes at me but so what. I know when I feel better and thats all that counts.

  • Hey,

    I'm really interested in the diet used for RH, I've always felt if I eat sugary stuff it exacerbates things, and I want more sugar...it's like a vicious circle. Eating bread again in anticipation of asking for a CD test has made me crave sugar more. Could anybody give an example of what you eat in a day, including quantities? I'm torn between giving it a go and sticking to eating carbs until I get a doctors appointment,,,but it would be great to have an example to think about.

    Thanks

  • Sugar is very addictive! You could try some low GI fruit like berries to satisfy the craving.

    If you want to try a low carb diet but keep gluten in it for the CD diagnosis have a look at low GI diets. There are various sites

    weightlossresources.co.uk/r...

    lowcarbiseasy.com/dietplanl...

    I like to include some butter and olive oil in what I eat, not low fat spreads.

  • Thanks, you're right sugar is addictive, To be honest that looks a lot like what I do, I haven;t eaten any white bread, pasta or rice in years and it's not recommended with pcos. I rarely eat bread or pasta anyway as I never felt very good on either...I've been forcing myself to eat bread lately in prep for requesting a blood test for coeliac. I'm feeling rubbish but not sure if it's carbs, gluten, both or neither. Hopeful I'll get some answers soon.

  • I think I find the diet reasonably easy to follow because I'm already gluten free, so have already been through the switch-off to lots of foods around me. I was devastated with my loss of sugar at first, but it has made such a difference my 'food goggles' blank out my non-foods and I don't miss them now.

    I also follow a Low FODMAP diet for IBS, so mine is really restrictive, but on a daily basis this is my general diet...

    Breakfast: 7 am: spinach omlette or Sainsbury Buckwheat & Rice porridge with Lactofree milk, glass of water

    Get to work: Other half of breakfast (cold omlette, cold porridge, but if I eat in one go I tend to hypo)

    Breaktime: Nuts 30g

    Lunchtime: celery sticks, plum tomatoes, olives, cucumber strips, red pepper strips, Lactofree yoghurt with almond flakes or hazelnuts added (to lower the yoghurt's GI). I eat at the start of lunchtime, leave it 15 mins, then eat again at the end

    3:30 salad pot or rocket & endamame beans or boiled egg and salad (small portions)

    6.00 Small portion of puy lentils or sweet potato, with loads of salad or veg and some meat, if I've had no carbs in this one then I might slip in a glass of red wine

    8:00 half a banana and a handful of nuts, or nuts on their own, or a few grapes.

    I find myself savouring the yoghurt and grapes for their sweetness and just making the most of them. My portions are about half a side plates worth each time because I thought about eating 3 normal meals and then split it. I am never hungry, and after a few weeks of the diet got REALLY bored of eating and making packed lunch, but I guess I'm determined to feel better. It's also much easier to fit around my workday and slips at the weekend.

  • Hi there, some of your problems sound like you have autoimmune problems, Adrenal hormones sometime make you vomit, and the other things are thyroid related. so you need to

    ask Dr for a TPOab test and Free T4, T3, also the adrenals will not show up on the usual tests

    as it only picks up when you are on deaths door. go to tpa-uk.org.uk or thyroid uk for more answers. autogirl.

  • Dr`s are under trained and you have to be more pro-active and do some research your self to find what is it that is making you ill. sad i know but knowledge is power.

    power to get well and have a life. this is what i did and got my life back. i have hashimoto`s rhuematoid arthritis, contact dermatitis and celiac`s,. and also have mild dyslexia. only found out all this because i was determined to find help when my doctor refused to help me, and said i had nothing wrong and even if i did she was not allowed to give me medicines. i really do not wont them now as i have found natural drugs that work better. so don`t wait any longer you only have one life.

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