So many members here have amazing stories of how it took 10 yrs or more to get diagnosed with Coeliac Disease or another condition that was in fact causing their symptoms. I think it would be useful for us to share these & our actual diagnosis so that newbies in search of help are better prepared when they chat to their GPs:
My own experience - I was told I had:
- Eczema
- Psoriasis
- Chronic Fatigue Syndrome
- Stress
- Low Iron
- IBS
- Acid Reflux (Peptobismal & Gaviscon were my friends)
- Nausea
- Allergic Rhinitis
- Loss of tooth enamel
- Slow blood clotting
- Mouth ulcers & cuts at corners of lip (due to low iron)
- A Recurrence (!) of Glandular Fever
- Abnormal Smear tests (these were fine after going GF)
- Recurrent Thrush infections each month
- Elevated Testosterone
- A virus
- An inner ear infection
All before I actually was diagnosed with Coeliac Disease.
What were you told / labelled with?
e.g. depression, stress, IBS?
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FionaGFG
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Yep on the IBS, no confirmed diagnosis as yet but there's definitely something up (Colonoscopy showed terminal ileum is inflammed and ulcers are present) - more tests to come but early indication is Crohns.
Regardless, I'm likeley to remain GF (or mostly GF) as it certainly makes life more comfortable for me
HI Fiona, Like you and many others, it was a long journey of misdiagnosis before the evidence started pointing towards wheat/gluten:
Psoriasis
Dermatitis
IBS x6 over time
Hormone Imbalance
Post Viral Fatigue
Depression x3
Fibromyalgia
I was diagnosed with Auto-immune Hypothyroidism 10 years ago, but never regained full "health" on thyroxine medicine. My symptoms: brain fog, joint pains, migraines, unexplained rashes, breathlessness and chronic fatigue, all worsened after an initial hiatus. Despite eating a very healthy diet and exercising, my weight had also ballooned. Yet I was told repeatedly that because my blood levels of thyroid hormones were satisfactory, it had to be something else and the insinuation was often that I was over-eating, imagining things or just being damn lazy!
Maybe the weight was the key to being misdiagnosed in recent years. Although it is a recognised symptom of thyroid disease, it seems GP's generally expect Coeliacs to be wasting away because of the malabsorption issues!
My health has improved so much since being GF I am convinced that the inflammation in my body was stopping me absorbing the thyroid hormones correctly at a cellular level. I've even lost weight with no effort.
I try not to let it anger me, but it took such a toll on my life in so many ways and I know I'm not alone in that. I can't help feeling NHS Doctors are more interested in pushing prescriptions for Big Pharma than really searching for answers for their patients.
The idea that all ceoliacs must have unexplained weight loss is definately a barrier and a big problem. I see the logic but in fact I haven't known of any one suffering from ceoliac disease to loose weight, most are on the heavier side. I wish this could be rectified!!
What was the blood test for? how did that lead to a diagnosis of IBS?
I'm pretty sure i have ceoliac disease also but am diagnosed with IBS. Perhaps my bodies reaction to gluten is not strong enough to provide a positive test but is strong enough to cause symptoms?!
Yes I was told it was IBS, as the doctor exhaled noisily & rolled her eyes at me coming to see her again complaining of agonising cramps. I was 21 at the time and after the way she treated me I never again asked for help.
When I was 36 a nurse, who I'd Gone to see about something completely different asked me If I thought I had coeliac disease! She made an appointment with the Specialist doctor they had in the surgery, and the rest is history.
Some doctors are just awful, they have a bad day and they think every one is trying it on. It's getting harder to find a doctor that will take these things seriously these days i'm only 19 though, and i think i have been lucky, although the doctor still didn't offer any help except nausea and cramp medication...i think i should have been referred to a dietician straight away! you have to fight for everything these days
Nobody - including me - made the connection between my seemingly disparate health problems, such as anaemia, IBS, osteopenia, skin rashes, depression, allergies, heart palpitations and probably other things that I can no longer even remember.
From early childhood I was considered delicate and undersized and was a very fussy eater. I also broke my arm on three separate occasions before the age of six, and had mystery skin reactions, as well as hayfever.
As a teenager I remained much smaller than my peers and began having severe digestive problems. When, years later, I had my son, I realised that my worst digestive pains were quite as painful as labour!
It wasn't until I became pregnant, in my late twenties, that I was diagnosed as anaemic. In the interim I had also been prescribed anti-depressants for my ongoing fatigue and low mood, and had been told my stomach pains and constant diarrhoea were IBS. Not long after having my son, I was also sent for a bone scan, and was told my bone density was 'that of a 60-year-old'. I also started having episodes where my heart rate would increase to 220bpm for hours at a time, and was hospitalised several times.
During this time (from the age of 25) I was working as a health journalist, so over the years I tried a huge range of natural remedies and therapies - especially for my supposed IBS - none of which fully helped.
Then, last October, at the age of 41, I went back to my GP once again, suspecting that my iron levels might be low, as I had been feeling so exhausted and run down. This time I saw a different doctor to my usual, who decided to run some routine blood tests. One of the tests was for coeliac disease. And finally I had my diagnosis...
Both my sons are coeliac and although neither had obvious symptoms for very long, I had to push very hard to get GPs to take action.
One son was diagnosed at 20months, his symptoms were
-pale, smelly poo for around 6 months.
-quite pale skin tone.
-always had a very round tummy (but he was very chubby so didn't seem unusual)
Apart from this he appeared very healthy and happy.
At 19 months he caught a tummy bug and his symptoms escalated Immediatly
-vomitting at least every 48 hrs for 3 weeks.
-lost a lot of weight, but still had a very swollen belly.
-lost all his energy, wouldn't move at all, just lie on the floor all day.
-suffered muscle wastage.
He had these more severe symptoms for 3 weeks I was continually taking him to GP and kept being told it was a virus, at one point I was told it was perfectly normal for these symptoms to continue for 6 weeks, bring him back then if he's still ill. Eventually I realised his symptoms matched coeliac and asked my GP about this. I got told no in such a dismissive way that I rather lost it and demanded for something to be done. We were referred to A&E who immediately realised all was not well and a few days later we had the results of his first positive coeliac test.
My older son was diagnosed at 14 years, though he had no obvious symptoms until a few weeks before his endoscopy (he was tested after his brother was diagnosed and bloods came back positive ) looking back we can see some signs
- Colds/ throat infections would always wipe him out for a week.
- whenever he was ill would add sore tummy to his list of complaints (even if he had a throat infection)
- always very tired.
Again GP was reluctant to test him as he had no obvious symptoms, and initially felt we should ignore his first set of blood tests which came back 'inconclusive.' thankfully I pushed for a gastro referral.
I am huge and swollen. I have gluten intollerence, no diagnosis of coeliac as I went on the GF diet first and I am not willing to come off it. However you don't have to be wasting away I am proof of that and I am also a Hashimoto's disease sufferer which gives other problems, including weight gain.
At 13, it was migraines/fatigue caused by an allergy to Worcester Sauce flavoured crisps, GP diagnosis.
At 17/ 18, it was fatigue because I was a vegetarian, GP diagnosis.
At 19, it was tiredness and lack of appetite because I was depressed, new GP diagnosis.
At 23, it was because I was a student and drank too much, London GP diagnosis.
At 24, the fatigue was depression - I had a history of it now, new GP diagnosis.
At 29, and 8 weeks pregnant, it was probably an ovary popping as the placenta took over, A&E diagnosis after scans and 24 hour monitoring.
At 29, it was because I was heavily pregnant and it was a hot summer, Pre-natal doc diagnosis.
At 30, it was just normal motherhood, London GP diagnosis.
At 30 again, it might be back related - sent for tests.
At 32, it was finally diagnosed as coeliac disease. I was 6st2 by then. My hair was falling out, my nails peeled off and my skin came off in patches from dryness. I went to bed at 6pm but was still tired in the morning.
Looking back, I can clearly remember coeliac episodes from puberty and having a bubbly tummy in childhood that was put down to shyness. I was never depressed and after trying Prozac in the early nineties and finding it did nothing for me, binned the depression meds I was given - I never felt down, just knackered! I was always 7st4 and cruel people used to shout at me in the street that I was anorexic, whilst my friends were jealous that I didn't put on weight. It's quite shocking that so many opportunities for a diagnosis were missed.
I had never heard of coeliac until I was diagnosed, but we hear much more about it these days. I hope this means no one else will go through years on years of misdiagnosis and being fobbed off.
I was diagnosed with IBS 10 years ago, which to me just meant they didn't know what it was. Tried all the IBS medication and it had little effect.
At one point it felt like I reacted to anything I ate.
Half heartedly tried gluten free and lactose free at different stages, but only saw a short term improvement.
18 months ago decided to go gluten free seriously, after finding out that family members had Coeliacs and gluten intolerance. I've seen a definite improvement. It's not perfect, but I now think that I react when I haven't been careful - either intentionally or by mistake.
To a certain extent I think I was in denial, but that wasn't helped by the IBS diagnosis. 10 years ago I knew I reacted badly to pearl barley, so I stopped eating it. I also reacted to various stuffing mixes, so stopped eating them. However I did seem to tolerate some white bread and pasta, but not ciabatta or pizza. Now I think I was reacting to all of them but less severely.
Since going gluten free my symptoms have improved, but I now find that any gluten sets me off. Perhaps it just wasn't obvious before, but I do seem to be more sensitive. I still seem to be sensitive to dairy, but it is getting milder. The worst were Camembert and Brie, but I seem to be tolerating them better now. Strangely I seem to mildly react to Lactofree milk!
When I saw my GP last month and told her that my so-called IBS really seemed to be a gluten issue, she just said that would mean I would have to avoid gluten for life. I got the impression she didn't really believe me!
my mother has ceoliac disease, and since she went entirely gluten free, she finds that even a small amount of gluten can set of a much bigger reaction than it used to. so that is expected, and even supports your idea that you suffer from ceoliac disease. i seem to react to different sources of gluten differently too, eg, white bread is a lot worse than wholemeal and seeded. i think it's to do with it being more highly processed, or perhaps the seeds help reduce the amount of gluten and provide good nutrients that help my body cope? but ultimately, i don't know.
i feel a lot of doctors seem to think i am exaggerating too. perhaps because ceoliac is talked about quite a lot, it could be seen as a fad. i imagine they get a lot of patients self-diagnosing these days due to us having much more information at our disposal. ultimately, even if u were diagnosed with ceoliac disease, it wouldn't change much. if u feel better when you don't eat gluten, then don't eat it, and if any one asks, just say you are intolerant to gluten and it makes you very ill. it's true, and means that hopefully not prejudices will get in the way as they do when we say we have IBS or ceoliac disease.
i think everyone should cut down on gluten in any case and the public are becoming more and more aware of what is in their food and are calling for change. im sure that being gluten free will be much much easier in years to come.
we need to take our health into our own hands, find a diet that makes us feel healthy and happy and stick with it. we don't need any more reason than that.
My son was clearly ill from 6 months old/weaning but it was continually dismissed as 'teething' despite me telling the GPs that his Aunt had coeliac disease. In the end we just decided to go gluten-free without medical advice and the change was instant. Armed with our results, we managed to get our son AND my husband diagnosed within a couple of months, a horrible couple of months feeding gluten to my child (he had to go back into nappies for that period) but reading the many accounts above, I believe we were lucky to get him diagnosed within 2 years of him starting to exhibit symptoms. I'm now pregnant again, woe betide any GP/HV who tries to bat me off with excuses.
Yes to the eczema, the ear infections, the iron anaemia and the heart palpitations. Because these were so spread out over so many years, my symptoms were missed. I cannot blame the doctors, as I did not make the connection either.
I have grown up living with many of the symptoms and considered them "normal" because I did not know any different. It is amazing what you come to consider normal looking back in hindsight!
I don’t really have a mis-diagnosis story as such but have similar experiences. My first symptom that something was wrong presented when I was in my 20s –when I ate bread or flour I would get heartburn, not always but quite a lot. This continued for decades and about 5 years ago I talked to my GP and told him I thought I had an allergy to wheat. He asked if I had diarrhoea and as I hadn’t told me I was okay. I stopped eating bread as much but still got heartburn when I ate it. Not long after this visit to the GP (it might have even been before) I started to get aches in my muscles/ joints and over time sent off for various xrays which proved inconclusive. Although I did have, and still do, a couple of structural problems from wear and tear in my limbs from vigorous exercise. I did ask the doctor why I kept having the other muscular problems and there was no explanation. I was also gaining weight (probably 3 stone) which I could not understand as I ate a healthy diet (I had not changed my eating habits and ate very little), exercised daily and was always busy. The muscle pain was making exercise really uncomfortable. Last summer I got diagnosed with fibromyalgia. I was relieved to have a diagnosis as some people asked me if the pain was psychological. Even with a diagnosis some still think it is psychological. It was early summer last year that I started to get stomach cramps associated with heartburn but thought nothing of it, except by the autumn I began to get really worried as I had heartburn most of the time and was taking lots of antacids. I was also having some other symptoms like needing the loo 12-14 times a day!
After some internet research on GERD, which is what I thought I had, I went to the GP (a different one in the practice) and asked if she thought my symptoms were due to gluten intolerance. I had read that heartburn was a symptom of gluten intolerance. She thought this was possible and did blood tests - one was for Helicobacter pylori and I’m afraid I don’t know what the others were, but she told me I did not have coeliac or Helicobacter pylori. Since I stopped eating gluten all the symptoms have gone including fibromyalgia. However, I have reacted to other stuff and sometimes I have unintentionally eaten gluten. If this happens then I get heartburn within an hour and feel awful. My GP has been really helpful and has now referred me to a dietician because I have reacted to different foods. It is a shame I did not see her first. I did have other symptoms like tiredness, insomnia and anxiety but thought that was because I was having such a lot of stress in my life last year. Now I have lost weight and have more energy. I don't know if my symptoms of heartburn, aching muscles and weight gain fit the profile of gluten intolerance. I did not tell the doctors about the insomnia and anxiety. And it is a mystery to me why I got so ill last year.
My daughter was diagnosed at two and a half with Coeliac Disease. From about one and a half to two years she was not wanting to get out of her pushchair and run a round, very quiet, was often sick when eating then carried on eating as if nothing had happened! She was slight in size and my other children weren't, she had thin limp hair and a very large belly on a little girl, she almost looked pregnant at times - I kept pointing out to the clinic nurse that she had a large stomach and they just said some children do have a distended stomach she will grow out of it! . I went to the doctor and said she has to be anaemic as she isn't doing what a normal two year old should be so they gave her a blood test and sure enough it came back as her being anaemic, so she had liquid iron immediately and then had the intestine test and was confirmed with Coeliac Disease. (She also kept, holding her breath and passing out when she got upset about something, which I later found out to be a symptom of anaemia). This was difficult at the time but as soon as we removed wheat/gluten from her diet she changed dramatically and grew so much in such a short time - she was a completely different child. She is 8 years old now and healthy most of the time - recently the dietician told me to give her oats just to see if she can tolerate them, well I felt like I had poisoned her, she was so ill, felt sick and bad stomach pains - I will be reluctant to take the dieticians advise in the future!!
I feel considerably lucky reading some responses but I am still trying to get a diagnosis. I have had the on set of symptoms over a number of years which came to a head a year ago with an awful spell of heart palpatations, brain fog, loss of memory, unbalanced spells, depression, low blood sugar, numbness in foot, bloatedness, joint ache, hangover head and the list of 'hypocondria' goes on. I had a twin sister who died of cancer 12 years ago and she also had most of my symptoms which you don't see how many until you start evaluating what is happening. When a lymphnode was enlarged panic struck out and I accepted cancer had got me. My sisters cancer was undiagnosed but insulinoma was thought so I was scanned, given a 72 hr fasting test and still no one could get to the bottom of what was once an outgoing active person was slowly ebbing into crisis and private mental breakdown. I pleaded with the Endocrine consultant that there must be something causing my low blood sugar and how I felt but he then instructed a cortisol test and all came back clear. I was passed to a nutritinalist to help me cope with the hypos and it was by accident and giving up sugar and eating rice and pulses that symptoms calmed down. I'd changed to wheat porridge oats of a morning which wasn't a good move but it was on introducing more bread again as autumn came that symptoms began to return. Then urika I hadn't touched a biscuit for months and had two during a meeting which were wheat digestive and within 2 hours I was in bed. I'd avoided pasta also and two weeks later slipped up and had a lasagne that wiped me out for 3 days. It was then gluten became a culprit. It was a two week wait to see the GP so I booked the appointment and went GF during this time and by day 4 it was radical the change. I have to go back on gluten to get the test and the sample sheet hangs on the wall in my office and I can't bear the thought of 6 weeks of hell - even now i know when i've been glutened! Whether its celiac or Gluten sensitivity life is without gluten so I'm questioning should I do the test? My joints were a problem and now the morning ache has gone it has left me with rather clicky joints? Its such a misunderstood condition awareness needs to be raised. The last letter from the endocrine consultant discussed post traumatic stress and to be frank its laughable as it couldn't have been more dismissive hence this has become a one woman mission. Good luck to you and yours and happy GF eating! x
It's only through reading this thread that I've realised just how many of the problems I've had for years are probably due to or exacerbated by gluten: eczema, migraines, itchy scalp, aching joints, heart palpitations, gut problems & more recently mouth ulcers if I get careless & eat gluten.
I had given up on the medical profession after visiting every single doctor in our practice over a period of several years. The first one diagnosed me with IBS & none of the subsequent people I saw looked beyond that. Only when I made the link to gluten myself (after trying the FODMAP diet) did a newer GP actually listen to me & arrange for me to be tested. Even then the consultant said that if the biopsy was negative I was not to bother going back - in her eyes if you weren't coeliac you didn't have a problem with gluten! It was negative but I steer clear of gluten & it keeps most of my symptoms under control.
As a child I was hospitalised for 4 months as I vomited every time I ate. I was discharged and my parents were told I had 'failure to thrive' I'm convinced now it was coeliacs.
Later in life I was anaemic on and off, I was told it was because I'm a woman and bleed monthly.
Then swollen tummies were put down to IBS
Then I had a DVT and was found to be anaemic again..an endoscopy diagnosed coeliacs... *sigh...
What is really frustrating about this is that after years of IBS I decided to cut wheat out of my diet myself as it was clear as day to me that it was the culprit. I had never heard of Coeliac so didn't get tested until years later (which of course was negative)
my son at age 9 was put on an elimination diet by a paediatrition who thought dairy was the culprit. It didnt make a differee so we cut out the wheat as well - Voila! Symptoms gone , no formal diagnosis though, he us 16 now and slipping on the GF diet due to his developing independence . Can't help thinking if I had had the diagnosis beforehad that he may have been tested properly.
Hi Jessiepup, a word of warning here, many teenage coeliac think that they have either grown out of having CD or that it is in remission, because due to puberty gluten does not appear to have such a dramatic effect. Please see and scroll down to the section on teens:
May be if he is slipping on his gf diet then in the future he will be able to have a formal diagnosis, as the saying once a coeliac always a coeliac stands true.
Thanks Jerry, I totally agree. Because he has not been diagnosed Coeliac he thinks all Will be fine. he sometimes get a dodgy tummy and if he has a think about it, can link it to something he ate which probably contained Gluten, so i am hoping he will take it seriously as he gets older. I will keep an eye on him.
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i'm only 19 though, and i think i have been lucky, although the doctor still didn't offer any help except nausea and cramp medication...i think i should have been referred to a dietician straight away! you have to fight for everything these days 
Does water kefir help coeliacs?
Anyone coeliacs get tired and loose energy easily?
This is one I have asked Coeliac UK and got a "don't know" - what countermeasures can you adopt after consuming gluten accidently?
Coeliac Gene - help needed?