do you think coeliac disease is likely

I was diagnosed with an underactive thyroid about 3 years ago been on thyroxine since. With raised TPO i was recently told that this was autoimmune in nature. As the TPO then reduced my GP said it was not autoimmune (though still way above 50 which is our labs referance range) and was left very confussed...particuarly as in the next breath he told me my blood tests indicated Vit b12 defficiencey which he said could be autoimmune in nature (iam taking daily supplements)

For many years i have also been complaining of abdomial bloating and discomfort. Related mostly to when eating wheat and gluten based food groups. I experience these symptoms on a daily basis sometimes i feel as though i could not eat of drink another thing as i'd explode! I have predominantely suffered with constipation though in recent years or so have some urgency to get to the toilet and much looser bowel movements though would not say this is typical diarrhoea.

My gp has advised and i have trialed fibrogel, laxido, colpermil non of which seem to truely change my symptoms - as i have also been suffering with depression ( for which i am on antidepressants and having counselling with positive effects) he seems adament that i am simply suffering with IBS.

I had a coeliac screen done a few months back result being around 3.5 i think which i understand is negative - however when i was tested i had been limiting the amount of wheat and gluten i was having in my diet substationally although not completely (symptoms were reduced though not absent) - he told me this would make no difference but on reading the NICE guidelines i believe he miss-informed me dont i need to eat 1 meal everyday for at least 6 weeks?

After recieving this 'negative' result i went back to indulging in all my favourate cakes, breads etc...ok maybe a little too much hence explaination for some of my weight gain but symptoms seem worse now than ever - i am really fed up with it all ....something in the back of my mind is telling me to persure this though ....after seing another gp he has agreed to re screen me.... but am i just fooling myself.....am i being an annoying patient who they have agreed to test purely to 'shut me up'?!

all comments welcome

many thanks

8 Replies

oldestnewest
  • I wouldn't worry about being thought an annoying patient...I find its one of the ways to get things done! I would be tested again, particularly as you have been eating the gluten and are showing reactions to it. I would continue to try to get to the bottom of it, although it sounds like you may well have celiac disease and got a false negative, which happens sometimes. Either way, it certainly sound like you are gluten intolerent. Once the tests are all finished it might be best to go totally gluten free just for your health sake. I have celiacs and Hashimotos thyroiditis. It definitely affects my thyroid if I have gluten, I can feel the difference. I have been totally gluten free for a few weeks and the difference is amazing.

  • Not sure if this is any help whatsoever but ............. my would-be problems noticably began with me in the form of blood blisters and mouth ulcers - the mouth ulcers went on for years and to be honest I wrongly thought it was normal to have so many. (This is not to say that I didn't have bloating, regular indigestion, heart burn and other problems at the same time - still thought it was normal.) One day I was eating a lovely crusty sandwhich and I had a blood blister which came upon my uvula (the dangly thing at the back of your throat) it kept getting larger and larger and was dangling right down my throat. We were on our way to our holidays and in the middle of nowhere at the time so I took my finger and thumb and pressed it with my nails to burst it as I thought I would choke to death if it carried on growning. I finally got it to burst and over the next few hours the skin came off leaving my mouth dreadfully sore throughout the whole of the holiday. I had no idea what caused the problem .. over the next two years I had spates of them and each time they grew and grew unless I could manage to burst them.

    I then had a thyroid problem and advised the surgeon and anaeathetist about them in case one or more developed whilst I was unconscious. I was informed that the condition was not uncommon. A lovely nurse told me that she too suffered with them and thought it might be wheat related - she said that she was going to be tested for a wheat allergy. I found that by cutting out wheat my blood blisters disappeared then if I re-introduced wheat they came back.

    Whilst at my doctors for a possibly unrelated condition I mentioned being allergic to wheat and he sent me for a blood test - this came back as 'not allergic to wheat' but Coeliac. This was despite the fact that by this time I was on a more-or-less gluten free diet.

    I have found that my one friend that helps to mend inside problems is aloe vera, which I sometimes purchase in juice form and always have the tablet versions. Aloe vera travels all the way through your digestive system and is both soothing and healing and is truly marvellous. I have had almost black areas of the mouth go back to pink in a couple of days with the liquid aloe vera.

    To my knowledge I have no-one in my family that is Coeliac so I haven't any idea how I came to be this way ... I obviously, I assume haven't quite always been this way but I would say to anyone if something obviously doesn't agree with you and causes health problems then stay well away from it. Remember the old saying 'one man's meat is another man's poison.' Some people fair well on certain foods others do not.

    Here are two articles that may be of interest. The second is a review article.

    dailymail.co.uk/health/arti...

    acnr.co.uk/pdfs/volume2issu...

  • Hi Hammers,

    It does sound like you could be coeliac, but it could be other intolerances too. I am coeliac but also am intolerant to dairy and fructose. The fructose elimination is interesting, as it is a diet followed by many IBS sufferers, and includes eliminating wheat and most dairy too.

    I would recommend you keep a diary of 'what goes in and what comes out', and take this to your doctor, asking for a dietician referral if they don't help any more. I know I won't be the only one this happened to, but I was really ill for 2 1/2 years before my coeliac diagnosis, and it's only because I kept going back to the doctor saying 'this is not normal' that I got a diagnosis at all.

    Good luck!

  • You are not being a pain to this GP. It took 30+ yrs & me finally standing up to my GP & demanding to know why I was constantly anaemic, ill, depressed & much more. I put my foot down with them & did not allow them to talk me down. But just so you know, you can test yourself. You can buy a testing kit from mainstore boots chemists. I do not know how accurate they are but that may be a place for you to start & if that tests positive you could take that to your GP & show them & then request a complete check on all your symptoms. Good luck. I hope this was of use.

  • It took me alot of years and finally being very demanding with doctors before they found CD. My daughter has many of the same symptoms as me (and you!) however she came back as negative for Coeliac. So I did nothing. Her depression was getting worse, as was the insomnia, pains, blisters, etc so I decided to do the gluten challenge anyway. After only a couple of weeks I found the child that I'd lost three years earlier. If only more people would do a gluten challenge, the NHS would have to pay out a lot less in medical care for treatments that are not necessary. My mum is also GF now, although negative for Coeliac, but her acid reflux that had become unmanageable, and the sluggishness, both disappeared.

    It wouldn't cost anything to try.

  • Hi, I would say not to worry to much on diagnosis as can read negative and is really complex. I would however continue on a wheat/gluten free diet for some time to see how this affects your symptoms and if still having problems then consider cutting out other things such as yeast, lactose etc untill you find something that seems to work for you. I have underactive thyroid due to auto immune and there does seem to be a link, I had my gall bladder removed last year as had stones but that did not stop my symptoms either, and the acid reflux, bloating, vomiting etc continued along with violent stomach cramps. Since being GF most of my symptoms have now gone so it works for me...I myself have been diagnosed wheat/gluten intolerent and would need to include wheat/gluten in my diet for a min of 6 weeks in order to be tested as CD...Hmmmm no way would I put myself through that, just to have a diagnosis on my medical records which may or may not be discovered anyway. I prefer to stick with what I know and continue on a diet I know works for me, and keeps me healthy in a way not previously had for years! ..Wishing you every success in finding a diet tht works for you.

  • Many thanks for everyones feedback

    I have always had an issue with food - im a huge comfort - binge eater which in the past has had its own impact on my health both mentally and physically. With the depression i cant seem to focus on the control of eliminating certain food groups and 'sticking' to it - i kinda feel like i haven't got a clue where to start neither the time or energy to read around it....that sound really bad ha .... so come the excuses i have a 3 year old and a 17 month old who are demanding as are most kids and so planning and organising food is hassle enough...i really should care more about myself hey. I am currently about 2.5 stone above my pre-baby weight and that in itself is depressing and mkes me feel sluggish. Because i also have gynae issues and a mitochondrial cytopathy i am so confussed as to what symptoms are causing what etc etc

    Its nice to know that i'm not the only one that feels someone 'alone' in these beginning stages...so glad i found you guys :

  • Had years of GPs misdiagnosing my symptoms and putting them down to "stress" (diarrhoea, IBS) or miscellaneous infections (skin rashes).

    Glad I did as my life is completely different and feel so much healthier, plus I am not prepared to risk the longer term health complications.

    So do persist with the doc on this.

    However...

    Had to fight to get an appointment with a gastro specialist; had to fight to stop them from forcing me to have a gluten challenge.

    So.. also stick to your guns and don't be bullied by doctors.

    You may find you lose weight when you switch to being gluten free too.

You may also like...