doctor not accepting gluten sensitivity

saw the gastroenterologist yesterday as i have some type of malabsorbtion going on, i am aware that all my coeliac tests came back clear but i have found being gluten free helps my joint pains and seems to have cleared any irritable bowel issues that i thought i had, i inadvertently ate fish with flour on the other day and had a very troubled tummy afterwards.

however the doc appeared completely uninterested after stating that i definitly wasnt coeliac and stated i didnt need a gluten free diet, and that it was an irritable bowel that i had, doesnt appear to consider and sensitivity otherwise,

does anyone else have this as a issue ?

22 Replies

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  • Hi Ailsamary, I totally understand what you are going through. I have not been diagnosed as Coeliac either but I do have a very sensitive reaction to gluten and wheat, I had a diagnosis of a gluten/wheat allergy and IBS from a specialist (had to go private) My Gp is not taking this seriously at all and seems to think I am a hypocondriac!! I am not. I have spent the last year trying to convince my GP that I need a dietition to help me as it seems most things I eat give me a reaction, therefore I am on a very bad diet at the moment... Only this week I have managed to find myself a dietition from out of my area, but still need GP referal!!! I am keeping my fingers crossed.

    Perhaps you could do as I did and phone your local hopspital and see if you can get yourself a dietitian? I know this is not the be all and end all, but I do believe that they can help me, and maybe you, find a healthy way forward. Good Luck.

  • please consider changing your GP x

  • just been to see a dietition also not been diagnosed as Coeliac and have multiple food sensitivities and thyroid problems, i waited six mths she took my food diary, rang me and asked me questions then sent me a healthy food guide which was rubbish, half the food in it i couldn't eat... i wouldn't bother...

  • Hi there, my opinion is if it works do it, there are enough gf products on the shelves and there's no law about self diagnosing yourself. And it is your body and your freedom of choice.

    I am a diagnosed coeliac but I am also aware that one of the main triggers for IBS is wheat. You might be wheat intolerant or lactose intolerant so it might be worth bearing these in mind and it could be very beneficial seeing a nutritionist for some extra advice.

    Sometimes I think that ''we'' have to take responsibilities for our selves and our needs and with gluten there's more to not being able to tolerate gluten than flattened villi.

    I would stick to the diet for about 3 months and if you feel much better then you have the answer. That's not being a hypochondriac.

    At the end of the day hypochondriac is only a label because they do not understand what is wrong with you. It's whether you act like a hypochondriac now that is ''your'' choice.

    So in my book if someone wants help or advice on ''their'' gf diet then thats good enough for me as it's not my place to reason why.

    Thats my 2p's worth.

  • well said Jerry, I totally agree with you. I had a gp who would not listen to me when I kept complaining how ill I was....after three years I was desperate for answers and paid to see the endocrinologist privately. I got a diagnosis of both celiac disease and Hashimoto's thyroiditis which are closely linked. The untreated celiac disease had caused a lot of damage in my body because he would not listen to me to start with. He actually laughed when I suggested celiac disease and told me to go home and eat spaghetti as it would make me feel better...oh the ignorance and arrogance of some doctors. If you can, find another GP who is more understanding and willing to listen. Your doctor is paid a lot of money to keep you well and he is not doing his job. I agree with Jerry, if the diet makes you feel better stick with it!

  • Well said. Completely agree.

  • My specialist won't diagnose me despite having every single symptom including the colonoscopy results 18 months after I stopped eating Gluten - B12 and folic acid deficiencies and what we now suspect was DH rather than eczema in the latter days of my skin problems - all because I refuse point blank to go back to eating Gluten so they can do a blood test which often doesn't yield the 'correct result' anyway.

    My GP's however based on the test results and my known problems with eating Gluften accept the diagnosis.

    I agree with the others - if it works for you, then do it - do you really need a label?

    I eat pretty much a 'normal' diet now thanks predominantly to M&S who produce so many of their foods without gluten and a number of foods specifically for Coeliacs such as chicken or cod in breadcrumbs and various fishcakes - the only products I have to go out of my way to be 'special' are my breads and pastas - luckily for me maybe, I've never really had much of a sweet tooth, so don't really miss that type of food.

    I've never seen a dietician - the only thing I do get concerned about is osteoporosis as I don't have milk in my diet either and have been on steroids on and off for years :(

    There's no reason why you shouldn't be able to manage an all round diet yourself - coeliacs often eat far more healthily than those who can eat gluten as so many glutenous products are stodge and empty calories

  • I personally think that its time these so called Doctors had a touch of our condition then they might actually know what we are going through!!!

  • I have the genetic markers, DH and family history but the gastroenterologist was unable to make a diagnosis of Celiac Disease because I declined the opportunity to do the gluten challenge and biopsy ( I'd been eating GF for 2 years and felt much better...didn't want to potentially go back to square one!) Ironically, when I went in for surgery the doctor asked if I was Celiac and I explained the situation. He said do you think you are Celaic? I said yes of course... and it now appears on my official medical records! Strange ... but unimportant in the broader picture of things.

  • Good for you refusing to do this crazy gluten eating to make a test positive..if you are lucky. My endocrinologist asked me if I had heard of celiac disease when I went to see him about thyroid problems...I said yes and he said I am sure you have it based on the blood test results and antibodies. Then he added ''never let anyone convince you to eat gluten in order to have a biopsy done, unless they are willing to put it in writing that they will take responsibility for any damage done this way on their orders''.......then he certified I was celiac on my notes.

  • That is what I said to the gastroenterologist, Sappho - Will you put it in writing that you are responsible for what happens to me physically and mentally while I'm eating gluten for 6 weeks? Will you be there 24/7 to care for me while I'm bed ridden and writhing in pain? He opted to do the DNA testing instead, but still wouldn't make a diagnosis in the end. I have thyroid disease as well as Fibromyalgia, arthritis and costochondritis. I'm currently struggling to get a diagnosis on what's causing the acute pain in my abdomen... CT scans tomorrow. It never ends.

  • oh liana i can so empathise with this, i also have thyriod disease, arthritis, fibro and also polymyalgia, as well as various back issues; and as my GP said i still am not properly diagnosed. My GP is excellent as is my rheumatologist its just the gastroenterologist whom is the stumbling block, he's sending me for a breath test to see if that can give some sort of diagnosis, i have found that going gluten free has helped the pain levels and before my last flare up had been able to almost half my analgesisa, that in itself is enough to encourage me to stick to the diet.

    I must admit that i am actually a healthcare person and prior to this wouldnt have been as believing as to the difference in pain levels it can cause, i am now hopefully more empathetic and aware

  • Well done Ailsamary! Diet can really impact global pain levels, as I've discovered. Gluten is not my only issue. An allergist and I discovered a connection between diet and my allergy to grass, which meant no grains for a while. Now that's restrictive! I've since used the rotation diet to hone in on specific grains my body won't tolerate - wheats, corns and rices. I actually have multiple food, environmental and drug allergies. I use theraputic doses of Vitamin C to boost liver function and help keep my C-reactive protien levels down and reduce inflammation. I'm in a major flare right now due to drastic shifts in temerature this past week. The weather has been like a yoyo. One scientist I knew used to call me his human barometre! Always made me chuckle because it was so true...

  • Had a huge argument with the gastro specialist who insisted I went on a gluten challeneg - three slices of toast per day for three weeks. I pointed out they had better reserve a bed for me as I would be so ill and that my employer would not sanction me making myself ill voluntarily. She said I should take time off on holiday.

    I wrote and complained; went private and got a diagnosis in one appointment.

    Pointless having a label anyway - all it has done is make it more difficult for me to get life insurance and proved what I knew all along anyway and that was proven by cause and effect. I eat gluten, I get ill!

  • I was seeing an endocrinologist and through them had blood tests for coeliac disease, they came back negative. However, because I had tried a gluten free diet previously which had improved my symptoms, then gone back to eating wheat for 6 weeks in preparation for the blood test and my symptoms had returned, the doctors accepted there was some sensitivity and advised me to 'do what works for you'. Not a diagnosis of celiac but just about enough to feel justified in my self-diagnosis!

    It was suggested I could have an endoscopy but I have always chosen to avoid surgery if not essential - I doubt the reliability too in a 'borderline' case like mine, where any damage to villi would presumably be minimal and/or in isolated places.

    I need to do more reading on this but I imagine there's a spectrum from 'no gluten sensitivity at all' to 'coeliac' and that I'm somewhere along that line. I also imagine that some (many?) people have a genetic predisposition to move from the 'no sensitivity' end of the spectrum to the 'celiac' end throughout their life, and that a variety of factors can push them towards it, overexposure to gluten being one of them. So that for some people, the sooner they acknowledge their sensitivity and act accordingly, the less damage they do to themselves. I think that perhaps the diagnosis comes at a certain cut off point along that spectrum and you have just not reached it - because you have listened to your body. That is my own way of imagining it, from the reading and learning I have done so far. I am not medically trained though.

    The take home message I suppose is listen to your body - you're the one that lives in it and knows its subtle changes the best, even if you don't always understand the mechanisms behind them. If gluten affects you then stay away from it.

  • thank you everyone for your answers, i must clarify that my GP is great its just the gastroenterologist thats more dismissive,

    i am definitly sticking to the diet as it helps my pain levels apart from anything else

  • Had the same problem for my daughter (I'm coeliac and she had basically the same symptoms but negative coeliac results) and get taken for a mad mother but after three years of seeing your daughter suffer and having seen endless specialists with no solution we tried the GF diet. It was easier as I was already GF. Symptoms disappear but doctors have said that it is just a coincidence because her test results were negative! Two doctors have tried to tell me I'm being a bad mother as "do I realise how hard it is for a child to be on a GF diet!" and "how unsociable it is"!!!! Do they not get that there is nothing more we would like than to be able to eat normally and be symptom free at the same time. There is no satisfaction in seeing your child not being able to eat like the other kids but it's even harder to see your child isolated completely because they are in pain, depressed and almost incapable of going to school.

  • took me from birth to 30 to get my diagnosis & believe me i could write a book on the apparent lack of compassion/insight/listening/respect shown to me during those years....thankfully & by sheer luck i finally got to see the most amazing consultant who listened to the whole sorry tale /gave me an examination & diagnosis on the spot & confirmed it the following day....i seriously love that man....i try not to think of all the damage done too much as some of you will know there is a tendancy towards depression as a result of it all....i say keep pushing guys & i believe that sheffield is second only to harley street when it comes to stomach disorders & you should all consider moving there it worked for me !!! terrified now i am back in wales though but @ least i am in control & have my diagnosis to wave @ people should i need to.....i wish you all much love & luck & good health x

  • I know that over Christmas I had things with wheat in and since then my joints and my Fibro have been bad so its true Gluten free works :-) Allan

  • I had the same issue with the doctor. I have diverticulitis. I only know that going gluten free (mostly) works for me. The minute I try and eat cakes, ordinary bread, buns of any sort, and pasta, I have a problem. I may be wrong but I suspect GPs just dont have the time to explore the diet thing. I dont have to check for gluten in everything but some things are just out for me.

  • Are any of you aware of recent research in USA saying that testing for CD is very flawed - particularly the biopsies? Google: Dr Peter Osborne and GLuten testing to find out more - sorry only just seen this and it's late - need to get to bed. xxx

  • I am currently going through similar situation. I have now dropped my primary care and GI Dr. Because they didn't acknowledge Gluten intolerance could exist. If it wasn't for my wife insisting on getting to the root cause of all my 4 yr old daughter's health issues and seeing her 100% return to normalcy after going GF, I wouldn't have even tried also. It took me 9 months after my daughters change to GF and the news that my father was just diagnosed Celiac in his 60's for me to realize that maybe gluten problems could run in my family.

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