Yesterday I seen my gp for the results of my blood test after 4 weeks taking gluten.she says its negative and I can't possibly have coeliacs and just have IBS.been told I have IBS for over 25 years but never had any tests just been told.my IBS was sharp rectal pains and a horrible pain in left hand of groin low down.the issues I'm having now are not that,they are diaorreah,floating oily poohs that absolutely stink,extreme fatigue,post nasal drip cough,feeling nauseous and vomiting and terrible mucus that makes me breathless at night and stops me sleeping.now my gp says she thinks I'm just anxious and need antidepressants.I'm so upset as I've just come off antidepressants after 5 years and now being told its in my head and just IBS.had the ttg blood test done and told that I do not have coeliacs but that she will refer me unurgently to see a gastro doc but with no hurry or urgency.I'm wide awake again tonight feeling sick and have already lost one job because I'm physically unwell.now I'm struggling with my present job as keep vomiting and retching at work and feel awful.now left feeling I'm just an annoying mental case.
Just IBS and stress,take antidepressa... - Gluten Free Guerr...
Just IBS and stress,take antidepressants.
sounds familiar!! I was told for 13 years I had IBS. And yes, you do start to question your own sanity! You are NOT a mental case, something is wrong and you need an answer.
I think its going to depend on whether you want a definitive answer as to whether you have coeliac disease? I didn't know it existed when I was ill.
sounds like you have been gluten free at some point? Did you feel better? Lactose can have a bad effect on you too, especially when you first start a GF diet. It did me for a couple of years. I cut that out to a great extent and felt better, although am fine with it now.
was your heamoglobin (red blood count) okay? I never had a diagnosis of coeliac (my doctor messed up big time) but coming off gluten allowed my blood count to rise, that was enough for me to go GF for life, but some people want to deffinately know they have coeliac disease.
I know it opens doors for dieticians, dexa, etc., but I was lucky as I think my doctor realised she had messed up and arranged for all that, although I did have to push her on it!
so, I suppose if you feel you are not going to get anywhere with diagnosis, and sounds like this has been going on some time, you have to decide are you going to stay on gluten in the hope you get the tests you need OR go gluten free for a while to see if you feel better? And maybe lactose free for a while?
my doctor did say I could have all the tests fir coeliac but that I would have to eat shed loads of gluten fir at least 2 months for it to show up! For me there was no way I was going to make myself that ill again just to get a name for my illness. It's a personal choice and they don't make it an easy one for us!
you are not mental!! I think we have all felt that over this blasted thing!! And 4 weeks back on gluten doesn't seem long enough unless you were eating shed loads of it!! Also bloods can come back a false negative. Only real diagnosis comes from biopsy and you really must eat shed loads of gluten over at least 6 weeks for that one!!
I think you need to decide what is best for you? Do you want a name for it or, if you felt better off of gluten and don't feel you will get anywhere with diagnosis, then stay off gluten and maybe lactose for short while.
I think we all wish we had an answer for you! So many of us have been in your situation. So feel for you!
good luck!
The coeliac tests only test for one response to gluten. You may have non- coeliac gluten sensitivity. Let your body guide you. If staying off gluten makes you feel better do it. If I get even tiny amounts of gluten I get really depressed amongst other symptoms so I stay completely away from it and even have a totally gf house. I also had recurrent severe chest infections, joint pain and weakness.
If I had to chose between changing my diet and being on meds and still feeling awful I know what I'd do.
Hi,
You don't have to be a Coeliac to have an issue with gluten. You could be one of the people who have a type Non-Coeliac Gluten Sensitivity (NGCS).
This cannot normally be diagnosed as easily by your GP and may be something you figure out independently.
Being negative for Coeliac Disease is actually good news! Although not having a definitive answer is probably very frustrating.
The symptoms you are experiencing are very real. Good luck on your bio-hacking journey to figure out the cause(s). Deciding to keep a food journal might be useful - to seek out any correlations between the food and the symptoms.
Morning!
What you are describing are similar symptoms which i had, but you are very much more extreme in your suffering than me. Hope that improves for you, it must be awful.
I would if you aren't getting what you feel you should from your doctors, take matters into your own hands, and by that, i do not mean self medicate, but i would avoid gluten, wheat et al like the plague, and see if things improve, as, you simply cannot go on as you are.
I was diagnosed in the end, but like a lot of folk who use this site, it took a long, long time to get there. Meaning great suffering for a lot of us both physically, and mentally. In terms of the effect mentally, it was horrific at times, and only recently, have i realized how bad i used to be, even my boss commented on it the other day, saying how much different i am now..!
I wish you all the best, maybe a second opinion is the order of the day, i just don't agree with giving people drugs to counter what problems people have, doctors seem reticent to investigate the root cause of the problem, and why it's making you so bad.
In an effort to improve my mental and physical well being, I went back to basics, cutting out any wheat, gluten, dairy, snacks, any rubbish (lets call them treats) foods, such as crisps, chocolate, sweets everything, and have stuck to meat, vegetables, and fruit, and loads of water, with the odd black coffee thrown in, and the results have been tremendous, in a positive way. I feel so much better, still tired now and again, but in comparison, i feel like a different person so much better.
Perhaps this approach may help you?
All the very best...
Mark
I agree with all of the above!
i was also told by my GP that I needed Prozac as they couldn't work out what the cause of my symptoms were, so yep they just think it is all in your mind!! I gave the GP a piece of my mind that is for sure & then started researching myself. I had a variety of symptoms - dreadful cough for 20 yrs, huge energy dips, mushy poo, aching joints etc - it turned out I had coeliacs (eventually gp caught up with me after she agreed to do a test) which by going gluten free it sorted out the cough, energy dips & poo but took cutting out loads of other foods to sort out the joints.
Got loads of info from Paleo AUtoimmune book by Sarah Balyntyne & purehealthclinic.co.uk & trulyglutenfree.co.uk run by Micki Rose. Still take VSL probiotics & use Enterosgel from time to time.
STill can't tolerate some of the foods I cut out, but all in all soooo much better than I was.
So it will become such a personal journey of trial & error which will take time to sort out but so worth it. But if you feel better off without gluten, then yes you are more than likely intolerant which is just as problematic as coeliacs & as the others say there may be other food issues too. The best thing is listening to what your body is telling you & let it guide you but look up loads of info for a guiding hand.
Good luck & remember just like the rest of us, you are not loosing your marbles! 😀
What a terrible time. Food is known to affect mood and cause anxiety, so it may be a factor. Can you see a natural medicine practitioner and/or follow a grain-free paleo diet? Possibly starting with a FODMAP or another diet that heals the gut? I do the auto-immune paleo and swear by this for my digestion and to prevent inflammation which is the cause of my diagnosis of SSc. When I veer off the AIP too much I get some of the symptoms you mention. In IBS, I think it's a mixture of body and mind factors but if you can control things with diet and feel better it will help reduce the anxiety and consequent depression, no? I'm not medically trained, so please don't follow this as 'advice' but look into it yourself. The doctors often can't help as they are not trained in nutrition. I had to do all my own research and experiment with the best approach. I have even affected the inflammatory markers in my blood with diet, which are now normal, having been told I could not do anything to halt the progression of my SSc by all the medical experts!
Your stools might indicate pancreatic exocrine insufficiency. It leads to an inability to digest fat and causes the symptoms you describe. I don't know how the NHS diagnoses this problem nowadays, because IBS appears to be a stock response to any chronic gut problem.
I had to go private and was diagnosed after a procedure at Biolab in London around 1990-1992. I was prescribed Pancrex Forte, but my current GP won't prescribe it any more, so I have to buy Creon OTC. It is effective, but only if you can afford to take enough of it! I have other gut problems which are unresolved, plus Hashimoto's.
Should have said I'm a first-time poster, long-time lurker on GFG. Hello everyone! 
Ask your doctor for a test for Dysbiosis, do you get a bloated stomach every time you eat?
I agree with all the above. As GP et al are unable to help. Do as many have done, self medicate. No not alcohol nor drugs!
As said above, eliminate foods for several days at a time. Relief will be instant. Keep a record of everything eaten at what time. Work out the delay between eating and symptom, so next time symptoms occur you can look back to see what caused them.
In future once you have worked out your own diet, check with a dietician that you are eating properly. Finding a dietician on your wavelength is trial and error. I have friends who are dieticians, one who is more allergic than me.
Being diagnosed coeliac is not everything. Once you step off the health service carousel its difficult to convince them of your dietary credentials.
Being labelled GF may not be correct for you, avoid it.
So sorry you have this to put up with....all you describe is what I would get and worst...and always felt like I was a pain in the butt at the doctors until I got a new doctor at the practice who became my doctor, and he was so interested he asked if he could take my notes home to review.... Which was the start of me being diagnosed, .always said if they could cut out my abdomen on left side to just on my hip I would be well again, but these days, just One Custard Cream my 1 yr old grandson handed to me and I ate it !!!! Yes fool me, should not have had both sorts in the house, and I wont again....it made me ill within 20mins and then sick a few times (I really do have to be sick now never did years ago) before I ended up in the bathroom/loo for a couple of hours..My blood test years ago was Negative, but to be true I had not eaten gluten for at least 6 weeks, well not eaten much food really, as at that point, I had decided that it was food that made me ill, so stopped eating. I finally got a biopsy done, but it was a Private one done at a private hospital, we decided I could not wait for the NHS to come thru for me....and I was fortunate, we decided I could Not afford to NOT have it done...I got complete results within a week, after the consultant, saying he was pretty sure it was an Ulcer, and that I must have been in pain for years....Only to be told, that it was in fact Coeliac, I was so relieved, after years & years of being unwell, and see in my work reports, how much time I wasted in the loos, you would think I was a smoker and spent all my time in the smoking room, chatting to my ciggy buddies.....Keep your chin up, and I hope you get your apt thru soon...You could phone the hospital up and ask how long can you expect to wait, you might find they have guidelines, and have to see you, in a certain amount of weeks...hopefully not too many Take Care
Pretty similar symptoms to myself too with negative blood tests and I did think I was nuts especially describing the symptoms to the doctors time after time. I haven't had a diagnosis but my GP thought I had coeliac and I didn't want a test because not eating gluten made me feel so much better and I didn't know what I would gain from a diagnosis. However, I still have some other problems - probably damage from NSAIDS and have got a gastro appointment at the end of the month!
Can you get someone to go to the GP with you? I know this sounds a bit pathetic but I kind of melt when I am in a doctors consulting room and don't say what I want even though I have written things down beforehand. Also I find it difficult to respond to what a doctor says at the time but beat myself up afterwards thinking of what I should have said. So having someone with me really helps as they can listen and repeat any info from the doctor. I did get referred to a dietician and did the FODMAPS elimination diet which was really helpful and helped me understand what other foods did to me. I probably have IBS too but I am now so much more aware of what makes me ill and feel in control. Best wishes and I hope you get this sorted and get to feel better as it is miserable feeling like you do and feeling that nobody understands.
Hi, Just read your post and wondering how you are. If you can , keep off the antidepressants and keep on at the GP.
You need a diagnosis. You could have more than one condition. I've got many! After suffering for many years (very long story).
Have you ever had a Barium Enema or Barium Swallow x rays? Sounds to me like you need both. Maybe even a Defecating Proctogram.
Do you know if you have Diverticular disease?
Is it projectile vomiting? It could be that your large bowel/colon is 'backed up' and you have slow motility of food. If your bowel isn't emptying properly this could put pressure on your upper abdomen and if your stomach can't empty there's only one other way!
Foul smelly, floating oily stools aren't normal. If not caused by an gastric infection, then you need urgent investigation by Colorectal AND Gastrointestinal Specialists.
Is there any one in work you can talk to about what you are going through?
I wish I could ban the terms IBS and IBD.
12 days is a long time. Hope your job is safe and you get to see the right medical people soon.
The only tips I can give for now are drinking water, doing pelvic floor exercises and eating healthy diet whenever you are able. When not able, boiled sweets and mints (containing proper peppermint oil), water, decaf tea will help as you must have water and glucose to get by. I have also drunk Pepsi (proper of course, not diet!!). Pepsi, Foxes Glacier Mints & Fruits were a life saver for me on many occasions. When you have bad vomiting you could also try a Blackcurrant flavour Dioralyte. The Natural just made me feel more sick!
Even with urgent referrals you'll be waiting weeks.
Thinking of you
X Mary
I have similar symptoms,and my blood test was negative also
the other day,I read that the blood test is not failsafe,and a biopsy should also be carried out
Ibs or gluten intolerance?
Could I have coeliacs or just be sensitive to gluten/wheat?
Confused - can I still have coeliacs 
Am I a coeliac?
