I was tested 4 times for coeliac, the second was a re-test, the third came back inconclusive and the 4th was negative. I have no idea what the first result came back as. I was told by a specialist (private GP) that I was slightly gluten intolerant and had slight IBS, my GP said no I didn't. He said I was neurotic.... I suffer extreme bloating and can look 9 months pregnant within a few minutes of eating, I suffer from diarrhea, I get stomach pains, sometimes quite bad, I get headaches, feel nauseous, my hair feels like it is thinning and I am on anti depressants because I suffer from anxiety, I believe because of my continued tummy problems. I wont go to my GP anymore because he obviously thinks this is all in my head... Am I going mad and can I make all these things happen to me????
Tests came back negative for coeliac,... - Gluten Free Guerr...
Tests came back negative for coeliac, but....
Hi Janey, It appears that you are currently going through a difficult time with your conditions. There may be a couple of possibilities to your medical condition. A tiny percentage of coeliacs do not show up positive in tests, these are usually coeliacs that do not have any family background of the disease. There is also a growing recognition, in parts of the medical community, of a problem with gluten that has similar symptoms to that of coeliac disease which is called NFCA or Non-Coeliac Gluten Sensitivity. There are it is said between from 15% to 45% of the population of the US with this condition at the moment (presumably there could also be a reasonable percentage of people in the UK with the same condition).
Here's a little about the condition from the National Foundation of Celiac Awareness:
celiaccentral.org/non-celia...
The following piece of information is from The Wall Street Journal:
online.wsj.com/article/SB10...
Video information here:
online.wsj.com/article/SB10...
celiacdisease.about.com/od/...
I hope that this helps you a little.
Dear Janeyh ... do what your gut tells you ... literally. When one of your doctor's is telling you you have a problem with gluten and IBS (which improves when gluten is removed) I think, if it was me, I'd be tempted to try eating gluten free and see what happens. I'm both gluten sensitive and have IBS. I've been off gluten for 6 years and am finally beginning to feel better. I even have my IBS under control. I'm not a doctor, nor can I tell you what's right for you. Just listen to your body... it's sending you powerful messages. I can't tell you how many times I've been told I'm neurotic and it's all in my head! I stopped listening to people who were poorly educated and uninformed and went looking for solutions.
Dear Janeyh,
My experience was very similar to yours and I would echo Liana's advice.
It depends whether in the long term you would feel it important to get an 'official' diagnosis on your medical records. This can be of some advantage: prescription foods, possibly more sympathetic response at work, etc.
If that is really important to you, you would need to find out which tests you have been given. Only 50% of people with gluten sensitivity will test positive for the commonly undertaken test for a reaction to Gliadin (which is only one of many peptides that our body may be reacting to that causes a gluten sensitivity). There are tests available that test more peptides in the body, although not for all the peptides that could be causing a problem. But whether your GP or specialist has these tests available to them is another question.
If your priority is to start feeling better as soon as possible, then eliminating gluten from your diet completely is the way to go. It's a challenge, but really it's the only way to be totally sure, because you *could* take all the tests available and still not get a positive result and yet cutting gluten from your diet could still improve your symptoms. This is still a relatively new area of study and tests are playing catch up.
I find it ironic that so many doctors tell us it's 'all in our heads' and yet completely disregard the effects that gluten can have not just on our gut but also our mental and emotional health, our anxiety levels (exacerbated by chronic ill health and unsympathetic doctors!) and our cognition. If there are any take-aways from your doc's uninformed attitude, it is that YES, some of this problem IS in your head, and that's most likely caused by gluten!
Hi Janey, I went through a similar experience with my doctor, who then tested me and said it was in my mind. The bloating and nausea continued and then I went into anaphylactic shock andw discovered it was dairy products that were causing the problems, so I have to stay away from all mild products, even ewes and goats and have to be very careful, but I do believe I am intolerant of gluten so stay awaya from that too, although not so diligently. Mollikins
would be careful about going gluten free before being diagnosed as doubt if you would get prescribed food. After being diagnosed myself find I am in a way worse of diet wise. Extra restricted, no more chippy food etc., If later you wanted to be diagnosed it would mean you would be more sensitive to gluten Forget about it being as suggested in your head. Yes some foods start causing problems, the reason why is uncertain. Seems like a 50/50 if in the mind I rekon. So not really any help Now very sensitive to gluten mainly bread, corn, lactose..... Hope you get sorted soon.
Thank you everyone for your comments, I guess deep down I knew that this was probably the way I would have to go, nice to have it confirmed by people that are going through the same or similar situation... Thanks once again :0)
Hi Janey
I tested negative for coeliac, too, but I know that gluten causes me many of the symptoms you describe so I avoid gluten as much as possible.
I borrowed a book called Irritable Bowel Solutions from my local library yesterday, written by Professor John Hunter who is from Addenbrooke's Hospital, & I think you might find it useful. Although I haven't read it all yet I believe it should be compulsory reading for all GPs, and some GI consultants, too, as the one I saw earlier this year was as ill-informed as your GP!
Professor Hunter points out that anxiety is "the effect of the disease, not its cause" in many patients, and its no wonder when we're faced with the attitude of some of the medical profession.
As others have said, listen to your body, you know better than anyone else what it's telling you!
Take no notice of the blood test at all my husband was basically on the verges of organ failure due to dehydration, the bloodtest came back negative, he had the biopsy and it was confirmed. Our consultant told us that he should never of been left to get to the point that he did, he ended up being rushed into hospital as an emergency and only weighed 5 stone. Insist on a biopsy, if your are clinically diagnosed there is no argument, your doctor will receive extra funding for you, and you will be able to get food etc on prescription, don't be fobbed off like we were, I would hate for anyone to go throe what we had to go throe. I don't want to frighten you, my husbands case was rare, but non the less it happened.
I was diagnosed 3 months ago however my doctor will only issue me with a prescription for 2 loaves of bread a month, the chemist has told me that the prescription must be for at least 6 loaves, if as you have mentioned my doctor would receive funding for me why is she being so restrictive?
Your PCT for where you live gave Doctors a guideline to stick to, with regards to prescriptions, so now it is a postcode lottery. E used to get everything from Biscuits, crackers, Pizza Bases etc. Since Jan 2010 we were then restricted to 1 loaf of bread a month and four boxes of G Mixes. we live on the border of warwickshire, Northamptonshire and Leicestershire. Our Doctor is warwickshire but we are changing to Northamptonshire who are more generous. When the change was first made in Jan 2010, after a lot of phone calls and going throe different departments I managed to speak to the person responsible for the changes, he was a totally ignorant of the needs of Ceoliacs , his excuse was that more food is readily available over the counter so perscriped food is un neccessary !!!!!!! And the NHS should not foot the bill.
Hi, just thought I would let you have an update on this, my doctor has finally agreed with the NHS guidelines for GF prescribing i.e. for 14 units per week. It seems as I thought, she was reading it completely wrong, I had to email the NHS Trust for Outer North East London to enquire what the actual guidelines are, after receiving confirmation from the NHS trust I still had to fax this over twice and highlight the areas that relate to me. Thanks for your answer, I was only diagnosed in September so I am still quite new to this but I find this forum really helpful 
Hope your husband has made good progress. May I ask how long ago this was. How on earth could the doctors leave him to get so poorly. I have been gluten free for 5 years, but now having probs with corn and lactose.
Our doctor kept giving him immodium !!! and sent him away, then he decided he may have bowel cancer. When he finally got diagnosed our Doctors Practice Staff all new my husband by first name, apparently he was the talk of the practice. The disturbing thing is, if I hadn't of had my Private Health Insurance throe my employer our consultant told me there was a strong possibility he would of died under the NHS, because diagnosis and treatment would of took far too long and he would of died of organ failure.
This was 8 years ago, he has never regained the weight he lost. His occupation should make him look like a body builder but alas he can not gain muscle tone and is very thin.
I've been gluten free for about 20 years, but only confirmed for about half of that. When I was eventually given a blood test it was negative, but that was expected because I hadn't eaten wheat for so long. It was complicated by also having M.E. but the consultant I eventually saw did biopsies. My gut looked fine, but the abnormalities only showed under the microscope. The consultant believes I have both conditions, coeliacs and M.E. because my symptoms can't be accounted for with only one condition and the coeliacs is so well controlled with diet, however my GPs don't believe I'm ill at all. I always thought it was because of the M.E. side of things they treated me so badly, but it seems from these comments they have a negative attitude to both conditions! Thinking about it, when I first realised I had to stop eating wheat I received no support from my GP nor the hospital nutritionist I had seen! I wasn't even offered a blood test. All these years and I have never been offered free food either, which would have helped a lot (don't even know what you can get!). I have been treated dreadfully by my GP practice and I didn't know either that they would receive extra funding for me!! Are you sure about that loobylou123? I'm sure doctors are fantastic in straight forward cases, but I'm afraid my experience with a chronic condition with them is appalling and I avoid going to my GPs unless forced to because I dread seeing them. Sorry this is not much comfort, but it sounds like you would be best to see a specialist not a GP if you want a diagnosis Janeyh.
Yes a relative of mine is a doctors receptionist and told me they get extra funding
Enquiring, the way you've been treated is awful! it really does annoy me when all you want is help and they try to fob you off and make you believe that you are incorrect, surely we know our bodies enough to know when something is wrong.... I have seen a specialist (private) and he said I was slightly gluten intolerant and had slight IBS and left it at that, no after care or anything. I was offered no diet support other than a diet sheet that had wheat and gluten in it from my GP so that went in the bin. Think I will just try and deal with this myself starting with the wheat and gluten!!
I look at it all quite logically. Gluten is a part of Wheat, additives and coatings tend to include gluten, gluten is the elastic part of wheat. Look at Rice Rice isn't wheat it is rice, logically think of where things come from. Processed foods are a big no no, just eat healthy fresh home cooked food and you will be ok. Pasta, breadcrumbs etc is all available at supermarkets, I find our Sainsbury's to be the best.Be very very careful when you eat out. Some places cook fresh food, others buy it readymade.
Janeyh, It could be something fairly simple causing your problems, its obvious you are reacting to some ingredient if you get bloating , nausea and loose motions, so will be tricky to find what it is. Doubt very much that you are neurotic even if it seems so to doctor at moment. Remember you are only seeking help and advice and doctors do try to help and must be fed up when their treatment isnt helping, most seem to think its all in the mind. Unfortunately that also doesnt seem to help. Do not blame yourself or feel neurotic, others are seeking ways to recovery so your not on your own, Had to laugh when the diet sheet went into bin.
When a friend told me recently about his stomach problems, especially with the rapid weight loss I suggested he ask for a coeliac blood test. The results were negative. When he finally stopped taking Prozac some months later the problems went away and now he doesn't have a problem.
Anxiety can often produces a gut reaction (anyone remember taking their driving test will testify to that). Also try a Google search of "fluoxetine stomach problems". I'm not saying don't take medication if you need it, but don't eliminate foods if they aren't the problem.
Hi Janeyh,
I think stress can cause some pretty horrendous symptoms for people, so I guess it's a possible cause.
I think you deserve at least a referral to a gastroenterologist as your GI symptoms are pretty bad - have you had endoscopy at all, or just blood tests? Even if it's not a food intolerence/allergy a tummy specialist might be able to help you.
I had an unsupportive GP for years who said I probably had IBS (and implied that I was imagining my joint pain). I then moved house and my new doc referred me immediately - I had a diagnosis of CD within 6 months. Can you get a second opinion, see a different GP perhaps?
If your TGA test is negative - as mine was - you can still have coeliac and should be tested for IGA deficiency.
It's only due to my weight loss that suddenly my surgery seems to have paid some attention and it definitely seems that different GPs (in the same surgery) have far different approaches on stuff - one doctor was really brisk with me and put me on codeine despite my protests at the time and subsequent phonecall - I can safely say I lost 2 months of my life to that stuff!
Stress definitely has a major impact too, I won't go into all the details now but I saw a consultant a few weeks ago and whilst still convinced I have IBS, he did admit that my weight didn't tally with that. He booked my colonoscopy really quickly and has already booked a return visit to see him. Fingers crossed I may actually get somewhere... he also said that the weight loss could simly be stress related so told me to get some anti-depressants from my GP pronto. At this point I'm quite glad to get them!
I read all your stories on here and it makes me feel a lot less alone in all this
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