I read the ibs posts with great sympathy, frustration and sadness. I am a doctor who after being well my whole life suddenly developed abdominal bloating after eating. First it didn't hurt, and it was really a joke between my husband and I that I was having another baby (we already have 4). Then after some years the pain started after eating. Intense, just to the right of my belly button, and the distension would be so tense that I had to lie down, moaning after I ate. I started to eat less and less, and then I no longer joined my family for dinner. I started to get nauseated every time I put something in my mouth, and then when I even looked at food. I lost 25 lbs in one month. Then when I did eat, food started sticking in my esophagus. I never had diarrhea, but my stools were mushy and I had several every morning, which was not normal for me. Then the rushes started. They came from deep within my abdomen and washed over me. Blood shot into the top of my head, and my face and ears would burn. Sometimes the burning sensation would go all over the front of me, including my thighs. It was really disturbing, and I knew something was really wrong at this point. I was also having really weak spells after eating, and I couldn't think straight and felt really sick in a nondescript way for hours on end, and then it would just clear up. I often had drenching sweats in the evening and at night. I developed muscle weakness that came and went inexplicably.
It is hard to really describe how impossible it was to get care. To get a diagnosis. I first played by the rules. I went to my primary practitioner who is usually great. She did some basic tests and reassured me. Then I started on the treadmill of seeing specialists. I never understood the complaints patients had about their doctors until I became a patient. Now I get it. There was never really enough time to convey to them what my symptoms were. How deeply I was affected. How it had completely changed my life. I had 4 kids I couldn't really tend to. I had trouble buying and cooking food for my family because of my revulsion to food. Yet I was hungry. I had stopped working somewhere along the way and was desperate to solve the puzzle of why these symptoms were happening.
After seeing numerous docs (an internist, neurologist, gastroenterologists, endocrinologist) who didn't seem to give a damn and didn't really try to dig deep, I began to see the game. Label me with a nonsensicle diagnosis and wash you hands of me. Irritable bowel syndrome. Eat more fiber. Eat FODMAPS, and of course multiple suggestions that I see a psychiatrist. Out of desperation I did go to a psychiatrist, who said I was not mentally ill, but he felt I was just sick and frustrated. This made no difference to my docs, who kept suggesting that I seek psychiatric help.
I will make a long story short. I felt sick, which meant I was. I finally realized after 4 years I was the only one who would find the cause. I put together my pituitary hypothyroidism, bad join pains and bowel problems and tested my self for Yersinia enterocolitica serology and it was highly positive (1:800 titre). My docs were uncooperative so I put myself on antibiotics for one month (2 weeks of doxycycline and 2 weeks of Septra) and two months out of this I am steadily improving. I must still be careful what I eat, but I think my gut is recovering from years of this infection. And you know, I saw 25 or so docs or alternative practitioners, and non of them had done even a stool culture on me (but I had multiple ct scans mris and all sorts of fancy expensive tests).
These tests were ordered not out of a thoughtful desire to diagnose me, but to just order something to get me out of the office. I remember asking one gastroenterologist what he felt was causing my symptoms. He said " a lot of things could cause it" When pushed for some thing more specific, he just kept repeating that a lot of things could cause my symptoms.
When I think back to why it was missed, I feel that docs don't do something called a differential diagnosis any more.
This is where after they have talked to you, and examined you (which most docs didn't do) they write down a list of the possible diagnosis you may have. This is meant to guide them in ordering investigations. Kiind of ruling out things as they go along. Instead there was always a test ordered, and when it came back normal, they would just tell me I had ibs. They would not go back and think, "what have we missed diagnosing?".
I was always adamant the Irritable Bowel Syndrome was not a diagnosis, it was just a description of symptoms. One needed to find the cause so that it could be treated. this is the basic mistake being made with patients who have my symptoms. Somehow this nonsensical term has come to be accepted as a diagnoisis and no one even looks properly for the cause. All of you out there have a diagnosable and treatable cause for your symptoms. If all tests have come back normal, it is most likely infectious. In medicine, we now know that over 90% of infectious bacterial cannot be cultured by our standard lab techniques (they can however be denmonstrated with experimental genetic probes). Clinical medicine generally lags about 25 years behind current scientific knowlege. Mine was detectable through antibody testing. I ordered a test on myself called Yersinia enterocolitical serology which was positive (1:800 titre) which suggested a recent infection. This is a nasty organism. And Lord knows what else I was carrying in my gut. this bug is difficult to culture, even if someone had tried, but of the many docs I had seen, no one had even ordered a simple stool culture.
My suggestion to those who have ongoing symptoms and no cause found is a trial of antibiotics. Doxycycline 100 mg twice a day is a good one to try without knowing exactly what is in there. It is antibiotic and antinflammatory. If you get better, even temporarily you have your diagnosis. Some times you need more than the standard 7 ord10 days to get rid of a longstanding infection. I had been of antibiotics twice for 10 days, and although my symptoms temporarily improved, they did not go away until I took one full month.
Don/t expect your standard mds to be on board. You may need to find an alternative practitioner. like someone who treats lyme to give you a longer course of antibiotics.
If antibiotics don't help, politely ask your doc to write a differential diagnosis of your symptoms for you. Ask him/her what has been done to rule in or out what is on the list. You may both be surprised at how sloppy the detective work to find your root cause has been.
I for one, am disgusted with my doctor collegues. They are disinterested, sloppy, and far too eager to look at a middle aged woman and blame everything on psychiatric causes without carefully thinking through the problem.
I wish you a firm diagnosis,
notibs M.D.
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Oh, wow! Thank you so very much for taking the time to write this post, there'll be loads of people out there who'll be really interested to read what you, as a doctor - as well as a fellow-sufferer - have to say.
I reply to quite a few posts on here which begin 'I've been given a diagnosis of IBS ...' and I always emphasise the fact that, just as you say, IBS isn't a diagnosis at all, it's doctors saying they don't know what's wrong with you and, quite often, can't be bothered to find out either.
Gastroenterology was no help to me whatsoever and it wasn't until I was referred to colorectal late last year and had a defecating proctogram that I discovered I had a rectocele and intussusception. These explained why I had incomplete bowel evacuation (which was 50% of my problem) and I've been able to correct that quite successfully - so, that much wasn't 'IBS' at all.
However, since I still have the remaining 50% of issues, which compel me to restrict some foods, I'll speak to my doctor regarding what you've said about antibiotics.
I sincerely hope you continue to improve and thanks again.
Hi Rosie, that's so interesting, we haven't "spoken" since late last year, so I missed out on what was happening with you!
I agree with everything you say in response to our doctor friend, but it leaves us all in limbo when we don't have the self diagnosis tools at our disposal, and we all know what reaction we would get from our GP's if we were to ask for such specific tests!!!
So glad that at least you have the answer to your problems.
Yes, you haven't been on here for ages, it's good to hear from you again.
I realised that I'd be wasting my breath trying to persuade my GP to do the appropriate tests - let alone prescribe a month's-worth of antibiotics - heaven forfend!! However, since I found a coping method for only 50% of my problems and am still left with the other half (which include food intolerances and bms like cow pats), I did a bit of Googling and found that it's quite easy to buy doxycycline (as recommended above) online as it's sold as an anti-malarial for travellers. So, I think I shall buy some and put myself on a 4 week course and see what happens.
If you are going to do antibiotics, please take with it a good digestive enzyme/probiotic such as Digest Gold with your meals, and take Sacromyces Boulardii twice a day which is a healthy yeast proven to protect you from antibiotic related diarrhea. Both are available at vitamin/health supply type stores. Also make sure you are not allergic to tetracyclines and doxycycline, and do not take it if you are pregnant. Also be caureful if you are on any other meds checking for interactions... you might talk to a pharmacist hypothetically to ask a bout this.
Of course it is always best to do it under a health paractitioner's guidance, but I know it is often hard to convince them to try.
Many, many thanks for such advice, it takes some guts (sorry!) to be openly critical of colleagues, and just shows what you have been through.
It's so difficult, without a medical background, to fight your corner. I paid to have a ct scan, and colonoscopy because I didn't feel that things were moving fast enough - (at my age, 68, I no longer buy green bananas!).
I had blood tests at the surgery, but I paid to have a test for ovarian cancer. Thankfully, everything was absolutely normal. When I called to make an appointment which was not ibs related, the receptionist asked me "and what is it this time?". What!!!!??? I haven't returned since and now intend to take control of this.
I intend to do the same as Rosie, but will take great care and advice. Thank you so much.
Hi I found your post very interesting , I have a friend who was having similar problems to you, and she too lost weight , was in bad pain every time she ate , then one day the pain was so bad she had to go to a&e , it was a Saturday And they admitted her after 3 days , was told she had an infection was put on antibiotics and is fine now , she too had suffered for about 10 months like that , had numerous tests and nothing had shown up , hospital told her the infection was deep in her stomach and had been there a long time
Sorry to hear you have been so unwell but thank you for posting your story, which echoes that of most of us on here with a "diagnosis" of IBS. My GP "diagnosed" IBS at my very first consultation, without any tests whatsoever, and once you are labelled with it, it is well nigh impossible to get the medical profession to look beyond it. Doctors generally make no effort to understand the impact it can have on your daily life & social activities and, as you say, because they think it's "all in the mind" they don't take it seriously.
I gave up going to my GP about it for a long time as I knew it would be pointless, I just put up with it. When I eventually got a referral to gastroenterology that was also pretty useless due to the IBS "label" - I have never even had a colonoscopy/MRI/CT scan/stool test. After repeated requests I saw a dietitian for help with the FODMAP diet & managed to get tested to rule out coeliac as I had established that gluten is a big issue for me. I have recently had to go back to my GP because of pain in my upper right abdomen - the symptom which took me to the GP in the first place, 16 years ago - and so far I have been prescribed medication for shingles & had an ultrasound scan of my ovaries! Both were, I'm sure, just to get me out of the office. After insisting on a referral to gastro I finally have an appointment next month.
I think you are right about the differential diagnosis - it simply does not happen. Most of us effectively do that for ourselves!
Quite frankly, not doing a proper differential diagnosis and based on that not having an appropriate plan for working up a patient is essentially medical negligence. I am struggling with my disgust at the docs who supposedly assessed me. If one were to complain to authorities, you I would have to finger every single doc I saw. It is really a problem with the whole system.
When you make a complaint about a doctor to the regulatory authorities, they essentially ask if that doctor did what most other docs would have done in his shoes with this particular patient. What if all of the docs are lazy and not doing what they should. It is really a system wide problem. If I as a doctor were to take this on, it would either fall flat from the beginning, or expose the medical world for the general degeneration of the profession. It might be best to do this through a book, or the media, as I am sure they would bully and try to silence me otherwise.
Soundl like a fun thing to try. It is hard to intimidate me
Thank you for your helpful post. I do agree with you that a blanket diagnosis of something like IBS or ME means that you are no longer a problem to your doctor as you have a label. Like you I had twenty years of gut issues which, at times, affected me severely. Last year I had to get a private investigation after waiting seven months for an appointment after my GP red flagged me. I have had severe lymphocytic colitis all this time not IBS. My thyroid disease was never diagnosed in the UK in spite of a family history and symptoms and my thyroid was removed abroad 15 years ago when cancer was suspected. It had atrophied as I had end stage auto immune thyroid disease. We have to understand our own bodies and do what we can to get well.
I also saw my gp and an endocrinologist for what I felt were thyroid issues. I told my specialist I was always sleepy and unusually puffy, especially in my face, I became very forgetful. I couldn't find my car in the parking lot each time I came out. I completely forgot what my hubby and I talked about in the morning, and didn't follow through. I missed my kids sporting events, I was not right, you get the pic?
Do you know what the endocrinologist said to that? He said, and I quote "we all do that". I told him I had numerous members of my family with thyroid issues, he said "everybody does". He refulsed to work me up. Again, I did bloodwrk on myself and found that I had an autoimmune throiditis (positive thyroid antibodies), and that even though my tsh was low normal, my t4 was well below normal. This is called central hypothyroidism. If you have thyroid issuses you will know what that means. When I sent him the results, he was defensive, and all but threw a prescription across his desk at me for thyroid replacement. He refused to see me after that.
I don't know if it help anyone at all to know this, but you don't get treated any differently if you are a doctor. I do feel that perhaps the universe sent me to med school, because if I didn't have the opportunity to sort out these real issues for myself, I would be like a vegetable in bed.
"Chronic fatigue" as a psychiatric diagnosis? I don't think so. Again, it is diagnosable if you work on it.
Good thing is, these days we have google. If you educate yourself, you can come up with your own differential diagnosis. Politely and firmly challenge your doc with it. If he refuses to answer your questions, get a new doc if you can. Our job is to be detectives and sort out problems, not to blindly reassure.
When you are a doctor or a clinical psychologist as I was, I think the help we get is tainted by a defensiveness on the part of some of the professionals we see. I suspect this fosters an attitude towards us that we are overeacting to our symptoms and that we think we know more than the 'expert'. Sadly, sometimes we do know more, we certainly know more about our own functioning than anyone else.
Thank you for your reassurance that we should educate ourselves and ask questions of our doctors. I hate to say that in the many years after my Chronic Fatigue diagnosis, I grew to fear seeing doctors who I felt patronised me and left me feeling helpless. I lost my career because my thyroid disease remained undiagnosed for ten years and, like you, my memory failed along with my body. I still have very little recall of the events of those years. I finished work finally on the morning when I couldn't remember what my client had said to me five minutes earlier and I knew I could no longer do my work. It took nine more years to get my thyroid disease diagnosis.
Also, when, as thyroid sufferers, we have a large number of symptoms from differing body systems, it is easy to accept that this is yet another part of our illness when it may be something new like my lymphocytic colitis. Although, of course, other auto immune illnesses are so often associated with auto immune thyroid disease.
I've just joined this community and found this post a fascinating and illuminating read. I have several close friends who are doctors and have had similar experiences - however I've also got a friend who was once of their patients and had a terrible time with one of these doctor friends so it goes round and round!
I've posted my story in brief here. It was hard to keep it relatively brief as I have multisystem autoimmunity - initially diagnosed as hypothyroidism and RA - now reduced to hypothyroidism, idiopathic small fibre neuropathy (possibly functional) and polyarthritis (unspecified) - after five years of being put on numerous drugs including Sulfasalazine, Methotrexate, Hydroxichloraquine and Azathioprine.
Having relocated to a different part of Scotland I've had two new GPs try to tell me that I have some sort of chronic pain syndrome - despite having most parasthesia and very little muscle or joint pain now. All because a neurologist mentioned my having functional episodes last year - following pancreatitis (Azathioprine), a UTI sepsis, a gallbladder op that led to liver damage and a post op wound infection which caused blood poisoning. The word functional taken out of context is poisonous it seems!
I was on steroids for six months last year because my GP and rheumatologist felt that the small fibre neuropathy was immune mediated. I have highly fluctuating CRP and PV and paired Oligloclonal bands in my CSF (lumbar puncture last year) and yet these doctors, who had not read my notes, told me my problem were caused by "health related anxiety". And now they are telling me that my severe constipation and dramatic stool changes are IBS?
I recently discovered a community here for sufferers of something called Functional Neurological Disorder - and learned that there are all these people suffering from this non condition - often wheelchair bound with symptoms identical to MS and Parkinsons Disease. So if they aren't able to function how can they have this FND label attached? Either they have a psychiatric illness or a physiological condition but to give anyone a label of FND beggars belief I feel?!
Sorry - rant over but I feel you will understand why I'm feeling so mad with your profession, just as you yourself are by the sounds of it!
Thanks you for your insightful comments. I apologize on behalf of the medical community. It seems that a craziness has taken over the way we diagnose things. Many years ago when patients had seemingly crazy symptoms or neurologic or mental difficulties, they were said to be taken over by the devil. There was later the word miasma conjured up a cause of illness which seemed to be transmissible from person to person (now we call it infections). Todays terms that are preferred are anxiety and autoimmunity. There are sooo many people like you and I with this constellation of symptoms that we need to recognize that our current textbooks are missing something. Or perhaps we are just missing the diagnosis because the "reasonable and good enough" work up has missed it. I am the prime example. By the way, I have neuropathy in my feet too. You sound like you have exactly what I have.
Although autoimmunity does definitely exist, I believe that most people who have brisk immune type reactions are infected with some sort of pathogen. I just don't believe that an intricately complex, highly evolved system of immunity malfunctions so greatly and so often. It is clearly fighting something, and I fear that immune suppressants in the long run do more harm than good although I do not know enough about your case to give you any medical advice. Science now know that the vast majority (90+%) of microbes out there cannot be cultured in our present lab media, but DNA probes can show that they are there. We cannot ignore this information. This explains why antibiotics such as doxycyline are sometimes helpful for RA and inflammatory bowel diseases and are said to have "anti inflammatory" properties. Of course they do, they are killing microbes that are inciting an appropriate immune reaction in us (rather than the concept of autoimmunity which suggests an inappropriate immune reponse that should be shut down).
Unfortunately, clinical practice is always about 20 or more years behind what is known in science. This is for many reasons, mainly ego, politics and inertia.My point is, it is unscientific for us to conjure up anxiety as the cause of real physical symptoms that are experienced by so many people. We all have anxiety. It is worse, sometimes intolerable, when we are ill and not listened to. The question is, what illness is underlying our anxiety and many other physical symptoms.
Functional Neurological disorder is not a diagnosis. You deserve one. I'm not sure how to straighten out the system. I will certainly challenge my collegues when I am much better. In the meantime, I would suggest you read a few books if you are so inclined. They discuss fascinating issues regarding the gut-immune-neurologic connection.
Firstly, I never knew that most of the body's and brain's neurotransmistters are produced in the gut, and transported to the brain and rest of the body. If your gut is inflamed, that is the reason right there for neuropathy and foggy thinking. We don't have to know exactly how or why to know that we need to focus intensive investigation and treatment on the gut to improve everything else. Also, the gut is not just an organ of digestion, it is a huge immune organ, this fact is completely overlooked by gastroenterologists.
I found I was much improved when I cut grain out of my diet. You may also look into stool transplantation, that is discussed in Dr. Perlmutters books (you have oligoclonal banding, he describes some of his patients with MS that were helped). Look up Dr Pimentel"s website on SIBO and its treatment. Its all inter-related. Keep and open mind and you will figure it out. I feel I must empower patients to do their own research and bring it to their docs, and the medical profession is bogged down in the past.
1. Breaking the vicous cycle (extremely helpful in quickly decreasing gut related imflammation)
2.Grain brain
2. Brain maker
Lots other to suggest after you browse through these.
Thanks Notibs. I volunteer for the RA charity and the NHS I quite a high powered role so I understand your feeling of deep frustration and exasperation. I do have RA and I do have Hashimotos hypothyroidism so I'm confident in my autoimmunity. My mum inadvertently starved me as a baby - I was about 12 hours from death my nan told me. So I was always puny and covered in eczema and suffered total alopecia twice. Everyone blamed anxiety because I had two disabled siblings - but my mum sought advice from w child psychiatrist who said I was made of stern stuff but was just very unlucky with my health and allergic disposition.
My mum was ashamed having failed to realise I'd been malnourished by lack of breast milk - her mother told her there was nothing worse than a fat baby so she was bullied into only feeding me every four hours - no good for breast feeding of course so her milk dried up without her realising until nearly too late! I was then bulk fed on semolina and kept away from doctors as far as possible,
Both my parents died suddenly and prematurely so stress played a roll in triggering my RA I believe - but I was already being treated for hypothyroidism.
I do think this malnutrition triggered my autoimmunity because I spent much of my childhood and young adulthood struggling with allergies, eczema and total alopecia and have issues around food with IBS like problems through you my childbearing years. Neither of my sisters have these problems.
No one has diagnosed me with Fibro, ME, FND or any of these questionable conditions yet. I think this is because they know I've done my research and also because of my fluctuating inflammatory markers, high total protein, hypertension, paired o bands and microscopic haematuria. But I'm always expecting them to!
The most surprising health care professionals have so far been my heroes - from my old GP to a podiatrist, a physio, a professor of connective tissue diseases, an oral surgeon, and (IBS comment aside) this very eminent endo. He said the neuropathy is probably too advanced to be curable as I'm numb in legs, hands, gums, nostrils and one eye. I think I might have dysautonimia too but hoping its thyroid related and the T3 is my miracle cure of course! The most likely candidate for me is Sjogrens because it would explain so much and can present seronegatively and neurologically - sometimes misdiagnosed as MS.
I so agree with you about the gut/ whole body relationship. The leaky gut theory has been endlessly belittled by mainstream doctors but I know new research in New York is leading rheumatologists and immunologists to consider the role of the gut. I'll pm you an RA friend's recent research about this. So there are good doctors and related professionals out there but there are also people who should not be allowed to practice.
Thanks so much for your thoughts and please don't apologise for your profession. There are other doctors on other forums who have said the same thing re being ashamed of colleagues but every profession has its stars and its idiots. You are defintely in the former camp and I'm grateful to have come here in the early hours and found you and others.
It isidifficult not to make assumptions when one is talking on a forum like this, I apologize if I have done so.
I do think it is interesting though that a compromised young infant was fed semolina (essentially wheat), which is highly immunogenic in many humans. If at an early age you had leaky gut from being malnourished and then thus developed antibodies to the wheat, any further wheat consumptions could explain many of your symptoms. I wonder do you eat wheat and other gluten containing foods or avoid it?
Firstly please don't apologise at all - you didn't make assumptions - I'm just preparing myself psychologically for those who probably will! I've never really explained the semolina thing to people - none of my doctors know. I always feel a traitor to my late mum if I tell people somehow but this is an IBS forum after all!
I have been approximately gluten free for five years - I started when the RA arrived. I didn't have anymore IBS symptoms until last year and I believe these were drug or infection related as I was very sick. Then three months ago this weird constipation and bloating started with white bits in my stools and I can't seem to get on top of it no matter how healthily I eat. As you described with yourself I'm really bloated. I will try magnesium as sometime here suggested as I'm desperate not to get the IBS label and for bowel patterns to return to normal.
I did get myself privately tested when the symptoms of small fibre neuropathy started. I was tested using a new autoantibodies blood test which showed that I don't have full blown Coeliacs but I noticed that my immunoglobulin A was taken and was slightly raised. It was same when my rheumatologist tested it earlier this year but he didn't comment and I'm regarded as autoantibody negative now - having been equivocal with positive rheumatoid factor five years ago.
The dizziness is the worst symptom along with the SFN in my gums and lips. The rest is just tingly numb now after a few years of terrible burning pain in my peripheries. I feel vaguely floaty! I've had everything tested as infinitum including vitamin B12 etc. My CRP fluctuates and my ESR and PV can be at anything from 17 to 80 depending on how much pain I'm in. I hate the idea of being inflamed all the time as I also have early atherosclerosis and hypertension (swings about a lot as does pulse). So I do bother doctors a lot and I'm sure they find me an exasperating nuisance! I'd say I don't care but actually I do. I'm quite thin skinned!
Thanks for letting me ramble to you here. I've messaged you with the article from rheumatology journal re leaky gut research. Twitchy x
in reply to
Ps I had my gallbladder removed last year - the op went wrong and I had a bad post op wound infection afterwards - more IV antibiotics! Each time I was on abtibiotics (8 courses last year) my peripheral neuropathy quietened interestingly - especially after your story.
Notibs I think you have touched on something potentially life changing for me with your semolina theory. I've just looked up the test I had three years ago -the tTG-IgA test. Tissue Transglutaminase Antibodies (tTG-IgA)
I read that the result probably isn't valid unless the person has been consuming gluten daily for six weeks prior to the test. I was fully gluten free then but the private lab said this was okay because it's an antibody test so it doesn't matter. It contradict is this in the info given out. And this could also explain my raised immunoglobulin A because I've been more lax lately and have only been wheat free - and even then I'm not always too thorough. See you are a star doctor!!! X
IgA are the antibodies that originate in the gut. If it is elevated or depressed, it is a good bet that something is going on here. I hate to tell someone to eat wheat just to get a test, but it is true that with the elimination of wheat, eventually the antibodies will wane. Most docs recommend one or two slices of white bread for a month or so before antibody testing or gut biopsies. There you go.
Now, I need to offload on someone about my symptoms. Amongst other things, I was having weird stuff going on that I finally recognized was happening after eating certain foods, but it was the worst after wheat. 45 minutes after eating, I would suddenly feel extremely weak, and indescribably sick. I would often get dizzy, even vertiginous. Nausea. Flushing. Sometimes loud ringing in my ears. The acute episode might last 3 or 4 hours, sometimes ending in vomitting, which did not relieve anything else. I would end up with lesser episodes of this on and off for 2 or 3 days. I would also have weird sensations of intense tingling on my scalp,or arms or legs after eating. I would feel like there was something hot dripping down my side, and I had odd sensations of pressure around my upper arms or lower leg which came and went. Yes I was thoroughly checked out by a neurologist who gave me a clean bill of health.
When a doctor friend of mine suggested I cut out gluten (and I ended up cutting out all grain, because corn flour was doing this too) I couldn't believe how so many things went away. I too lost much hair, although not all of it. I also have peripheral neuropathy and hashimotos antibodies and low thyroid function.
It all started out of the blue. I was the picture of health, then after my last pregnancy I just never perked up and it all started.
David Perlmutter has interesting stories of patients with undiagnosable neurologic problems that resolve with wheat elimination. Its just interesting.In my case, I imagine the gut infection caused breach of intestinal integrity (so acalled leaky bowel), and the stuff I was eating at the time, I became somehow sensitized to. MCAD is also a possibility.
Me too recsi many thoughts. The private message I sent you earlier should be of interest to you I think if you can access it. You just go to your name and scroll down to find messages if you're not sure how to read it?
I have been reading your replies to your fellow Canadian, Hobbits, whom I've met on the RA forum. It's incredible how many symptoms and diagnoses we appear to share.
My RA did not go away when I went gluten free but it did start a few months after a horrible bout of food poisoning I suffered on the way home to Scotland from Berlin. Looking back I've never been a me to work out how I got food poisoning after only eaten a bowl of very earthy meusli. From then on I had a really horrible taste which I still have to this day, over five years later.
So did your symptoms all abate when you ellimated gluten from your diet? In which case why did you need to test and try abtibiotics? Are you broadly or entirely better now? Do you think your problem is Coeliacs?
I see my new GP on Tuesday to discuss my bowel issues and see a young German woman neurologist on Wednesday for the first time. So this discussion is incredibly timely. I may explain briefly about Miss Semolina abs then just ask about Coeliacs. After all she and I are both a bit baffled that I have all this inflammation in my blood and spinal fluid and yet my rheumatologist says I don't have active RA or any other connective tissue disease. So what is causing high levels of protein, microscopic haematuria, constipation, progressive small fibre neuropathy and dizziness then?! People with functional conditions tend not to have high levels of inflammation in their blood, pee and spinal fluid. Whereas Coeliacs sufferers do I believe so this could be a possible candidate. Abs thanks for explaining the raised IgA. I keep looking it up but can only find Coeliacs represented by depleted levels. But what I suppose matters is its out of whack and so far adding t3 to my t4 med hasn't made any difference - day five now. The endo suggested a very rare immune mediated neuropathy but I think Coeliacs is much more likely.
Have you tried the Paleo diet yet?
I had a pharmacist where I used to live and she had ulcerative colitis and a lung condition . She then developed RA. However when her gastro decided to remove a lot of ulcerated tissue from her bowel he told her that it was likely that her synovial swelling would go away for a while and it did. She takes injectible methotrexate as I did and if she has to stop for any reason her colitis symptoms and RA flare up simultaneously.
It started with a badly infected area on the back of my thigh just at the start of my pregnancy 9 years ago. I had two days of iv antibiotics and then 1 week of oral. I was really unusually pooped in my pregnancy. Short of breath, could barely stand up after dinner etc. I never complained, just thought to myself, that I deserved it for being 43 and pregnant After the birth, I just din't feel good. I couldn't exercise, then I got a bad pain in the ball of my foot that lasted years. My toes and heel went numb. A few years later I suddently started to get intense abdominal bloating the same time as I developed an odd muscle weakness, such that my arms at times felt heavy as lead. Hard to even chop vegetables. Also severe migraine type headaches suddenly. Deep bone pain all over. This was when the treadmill of doctors started. Never a diagnosis. Internist, neurologist, rheumatologist. Nothing. I first diagnosed myself with a parathyroid adenoma, a benign tumor that causes abnormally high calcium. I had it removed. I immediately felt better in a number of ways, but the weakness and neuropathy persisted. I started to get odd rushes coming from my abdominal area exploding up my head and arms every time I lied down and after I ate. More docs. A psychiatrist consult . I developed a bowel obstruction where some adhesions in my bowel caused something called an internal hernia. Really rare. Laparoscopy to fix it. When I enquired why my abdomen was bloating and why I had adhesions indicating inflammation of my bowel everyone ignored my questions, with a "sometimes these things just happen" attitude. This did not sit well with me. In fact it drove me nuts! I am a person who digs for my patients. Anyways..... Shortly after this I started to have classic hypothyroid symptoms. Sleepy, puffy, major short term memory difficulties. Endocrinologist was absolutely unhelpful. I found I had low nornmal TSH but well below normal T4, and positive antithyroglobulin and antithyropeoxidse antibodies (Hashimotos thyroiditis). Thyroid replacement really helpful. But then the joint pains began. First in my legs elbow and right ring finger, then in the tendons of most of the fingers of both hands. Excruciating. Then knees, then feet. Bloated abdomin started to be acutley painful after eating. Drenching night sweats. I had gastroscopy, and capsule endoscopy which was "normal". Gastroenterology telling me to see a psychiatrist. My gp refused to send me because she knew It was real. Long story short, I did parasite tests on myself. Found dientamoeba fragilis and B. hominis,not really terribly pathologic, but I thought I would try treat myself to see if it would help, finding no other explanation. Two 10 day courses of antibiotics made me MUCH better, but it would all come back after a week of so. I developed not only pain but intense weakness, flushing and dizziness after eating.
It is not enough to be told that the tests are normal. I needed not only to know what I don't have, but I needed to know what was causing my pain.
With Christmas approaching and 4kids, two dogs, three guinea pigs to care for and two Christmas dinners to make, I followed the advice of my no nonsense common sense receptionist who asked why I didn't just take antibiotics for longer. It was really a great idea, so I decided to do it, to sort of tie me over through the holidays. Shortly after starting them I came up with the idea that all of my symptoms could be explained by an acute Yersinia infection, I ordered the test on myself which took one month to return. I was shocked when it came back positive, with titres through the roof. Interestingly, after one week of antibiotics, my acute abdominal pain vanished and not come back since(meds taken mid Dec to mid Jan). What has remained was the intense bloating after I ate. I was still also having the weird "spells" often when I ate. On the advice of a doctor friend, I first cut out wheat, and noticed great improvement in all symptoms, especially neurological. When I added it back in it became obvious it was a factor. I went through sort of a close observation, and came up with a list of food that caused extreme problems for me. It has no obvious logic, except I notice that it was all of my ususal favoite foods grapes, blueberries, most veggies, nuts etc. I was fine with any meats. When I have eliminated these irritants for a week of so, I an about 50% better.
I have a theory that my infection is probaby cleared now, but I became sensitized (vague term as not sure by what mechanism) to the foods I ate during the course of my infection. I am curiously able to eat stuff I didn't usually eat, like bananas or papaya (as I am not fond of them) with next to no problem.
Currently I am also exploring the possibility that the infection has somehow initiated some sort of mast cell hyperactivity. I am very allergic, as is my mom and son. We all get idiopathic anaphylactic type episodes. I wonder if I do not have a component of Mast cell activation disorder. I did see a hematologist to ask this, but they are not up on it in Canada. I have an appointment with Dr. Lawrence Afrin in Minnessota this July. I am waiting for my gastro guy to get back to me about a trial of oral cromolyn or ketotifen, which are mast cell stabilizer, just to see it I can settle down the rest of the 50%.
Its a long road, but I think I have teased out much of the bizarre element contributing to my illness.
The functional medicine docs say that if you have 10 tacks in your butt, if you pull out just one or two, you don't necessarily feel better, you have to pull them all out and then voila you will be yourself again.
I hope I only have one tack left. As it is, I feel well enough to go back to work next week after 3 years off. Hooray. Just can't eat breakfast before I go to work.
Fab news about you going back to work next week - I wish you were my GP what fun we would have playing detectives! I'm a research led artist and am creating my first book just now with pictures and words depicting some of these symptoms. I have a small following here on HU and people print off my pictures to show loved ones and doctors how and where their symptoms feel and affect them. I'm presently drawing myself munching nettles and with holly bush, nettles and cold water all submerging me. Hey ho!
I'm also researching Mast Cell dosorders for myself because I've had allergies all my life - anaphylaxis, hives etc and steroids have always really helped although they make me starving and fat. So we have masses in common symptomatically and as tenacious investigators/ Jack Russels too. Good luck with being a great doctor - your patients are SO lucky to have you!
Funny the imagery you use. I always likened my self to a little dog nipping at the heels of the people I seek help from. They just can't seem to shake me off.
One more. Remember that we do not know everything there is to know about wheat sensitivity. It used to be we did antigliadin antibodies. Then ttg came along. Oh and then antimyseal antibodies. And there are others now. I always look for evidence as a doc, but the fact is that we just don't know all there is to know about it. In ten years time you and I might be easily diagnosed. Maybe wheat affects some people in a way we haven't thought of yet.
There was one great internist I saw. He didn't know what was wrong with me. As I left the office, I asked him if it was all in my mind. He looked straight at me and kindly said "no, its real". I hung onto that when I had no evidence yet for what ailed me. And I still have stuff going on. This has been a lifesaver for me.
Yes good health professionals who encourage us to trust our instincts and move on from those who don't are life savers I agree.
Another story for you: when I was ten all my hair fell out and I had spontaneous bouts of nausea and my eczema became truly horrific. My mum was convinced it was all anxiety related because she had two profoundly deaf children to raise and felt I was neglected and this was the reason. But because of the semolina she never took me to the doctor.
So my autocratic grandparents went behind her back and summoned a paediatric psychiatrist to assess me.
So jump foward 30 odd years and my mum is chairing a health trust/ GMC event in her area. A man asks her if she has a daughter who had severe eczema and alopecia because he recognises the name. She is totally startled and affirms. So he tells her that he had the pleasure of spending and afternoon with me when he was just a young paediatric shrink and has remembered sitting in a tree house with this little bald girl ever since.
He wrote to my grandparents saying that he'd never met a saner child and all that was wrong with me was caused by my allergies and physical problems. Psychologically I was strong as an ox but very concerned by my mum's state of mental health at the time. He noticed that, several months later my grandparents were killed in a car crash but he could t make contact with my parents because it was all hush hush and there would have been disclosure issues even in those days. My mum phoned to tell me this story with a mixture of pride and delight and fury at her dead parents for going behind her back. I hold onto this story and wrote it down for my old GP when he said I was suffering from depression because of active RA and the medicalisationof my life.
Whereas I knew it was actually because I was injecting a cytotoxic drug (methotrexate) into my belly each week and am highly allergic and drug intolerent! all my instincts have been born out to date as my previous island GPs will confirm - if only the new ones had the time or inclination to listen before jumping to conclusions because I'm an overweight, middle aged woman!
Hi there, thank you so much for taking the time to write your post on here and to see how you, as a doctor, realise the problems that those labelled with IBS are treated. I agree with what all have said on here in that people are only diagnosed with IBS as the doctor doesn't know what else to say.
I was 'diagnosed' with IBS back in 1996 so have been suffering on and off for 20 years now - I don't get many breaks in between from bouts. In 1996 I licked the lid of a yoghurt, which I always do, and thought that it didn't taste brilliant even though it was in date. I proceeded to eat a teaspoon of the yoghurt and confirmed to myself that it was actually off! - I threw the yoghurt away and thought no more of it.
Around a couple of days after eating a very small amount of the yoghurt I started to feel 'off', I couldn't put my finger on what was wrong but knew I wasn't feeling that good. I started to feel sick but wasn't actually physically sick (unfortunately I've always had a fear of sickness, which I know is known as 'Emetophobia) and I also went off my food; I was just picking at little bits. This went on for 2 weeks so I eventually went to the doctor who did do a stools test and phoned me a few days later, when I was actually feeling better, and asked if the Health Authority had contacted me to which I said they hadn't. During the phone call my doctor said that I had Salmonella - I was shocked as I hadn't been physically sick and hadn't had Diarrhoea - I have a feeling I hadn't been sick as I had been taking travel sick tablets throughout.
Following this I started to experience other problems i.e. bad stomach pain, upset tummies/constipation and the feeling of sickness. I went back to my doctor and he booked a Colonoscopy and Endoscopy an both came back clear, that is when I was diagnosed with IBS. Therefore, I have been putting up with this for 20 years now thinking well, that's it, apart from trying to eat the right foods for me then there is nothing else that can be done.
I have read other posts on here so there are a few other things I am going to try i.e. basically re-write my diet. But after reading your post I see that other things can be done. I have had a look at your post re Yersinia Enterocolitical Serology and looked for this online and see that it is some kind of bacteria. As it's many years since I was diagnosed would the bacteria still be present? I am assuming it would be as I still suffer.
Once again, it's good to see a post from a doctor as I've said many times if the doctor had suffered with this the same way lots of other people that have been diagnosed with IBS suffer then they may look into the symptoms further rather than labelling patients with 'IBS'.
Salmonella causes the same spectrum of abdominal symptoms as Yersinia, and it also can cause reactive arthritis with joint pain that moves around. See my answer to Hobbits. You can get a serology test to see if your Salmonella antibodies are high (not expensive), which would suggest a continuing chronic infection (look up Typhoid Mary on google). If I were you, I would do trial of antibiotics to see if it settles you down, if it does, perhaps a full 4 to 6 weeks would help settle it down. I was much better after years of pain once I did 4 weeks of doxycycline, including joint pain that is subsiding.
Salmonella is a serious gut infection that needs to be followed up and ensured it has resolved.
Hello, I am from Canada and our doctors are exactly the same. I always believed that IBS has a cause and could be treatable if some pharmaceutical company/scientist thought it was worthwhile to find the root cause. Doctors label what they can't diagnose and I find don't want anyone else to know they don't know, so they won't even send you to a specialist. Maybe because you are a doctor you were able to see all those specialists. That would never happen here, the specialists would likely stop after a Gasterontologist. I suffered many years with IBS before my doctors finally got tired of me and sent me to a Gasterontologist. She diagnosed me with IBS. I remember telling her that I get a lot of bladder infections so I have had a lot of antibiotics and for some reason my tummy is always better for a short while after antibiotics. She told me because they kill all the bacterium in my gut. I also have Rheumatoid Arthritis and antibiotics conflict with my biological Meds. The biological Meds lower my immune system on purpose, and antibiotics boost my immune. I have always wondered why it was my IBS is better when I am on antibiotics. I wonder if there is a 'bug' that is not discovered that is the root cause of IBS and scientist just haven't figured it out yet. I have read different stories about H Pyllori causing IBS.
I am not sure when doctors became so apathetic, but every once in awhile you find a gem. My Rheumatilogist is the best doctor I ever met......but my family doctor let me suffer for years because he kept telling me there was nothing wrong with me and refused to send me to a specialist. When I finally got to see a rheumatologist I was quickly diagnosed via a blood test and X-rays and he was very interested in my IBS, my two specialists Rheumy and Gastetontologis share info. Like everyone else on the IBS treadmill it seems a never ending cycle. And yes, every time my family doctor can't figure it out he offers antidepressants.
I am Canadian. I saw so many docs because I was insistent that I felt sick. My assuredness that I could find a diagnosis only got me labelled as mentally ill. Trust me it is no easier for a doctor than anyone else, in fact it was in some ways harder because there is some kind of belief that a doc can't really get sick,... it is very odd. Anyways, I had all the makings of a RF negative rheumatoid arthritis for three years. It came on inexplicably out of the blue one day. I always felt it was tied in to my bowels, since it started around the same time. My docs have always refused to connect the two, it is maddening. It is really a product of how docs are paid. Although they are educated about how a patient's problems are interrelated, when they practice day to day, they are in a hurry, and purposefully avoid asking or considering the full spectrum af a patient's symptoms, because it takes time, and bogs them down. the GI guy tells you to talk to rheumatology about your joints. The rheumatologist tells you to talk to GI about you bowels. If you have a doc that looks at the big picture, hold on to him like grim death. Because, I am a gp, I always look at the big picture and know that patients usually have numerous symptoms of different body systems bothering them at one time. They are often due to a common Cause.
I cannot give you medical advice, but hypothetically, someone with you history of improving on antibiotics has the diagnosis. If your symptoms respond to antibiotics, you likely have what is known as a reactive arthropathy, most commonly due to Yersinia, or Salmonella infection in the gut, which can be chronic and difficult to culture. You can have blood work, called serology for both of these bugs, and don't forget Lyme. Even if you can't prove it, why not do a trial of one month of something like doxycycline for a patient to see it helps them? After all , isn't that what we do as docs do, help patients feel better? Antibiotics like this are also known to be anti inflammatory, so it works as a double wammy. Who cares if we can't prove the infection is there. Your response to antibiotics is the proof. Thats what I think anyways.
A Lyme doctor would be willing to perscribe some longer term antibiotics for you if all else fails. I personally went to Seattle and saw an interesting naturopath who suggested a trial of antibiotics and was more than willing to prescribe them . Naturopaths, who have full perscribing priviliges even in Canada, are more interested in results than proof from the lab also.
Best of luck,
a fello Canadian
And by the way, you Canadian insurance cover as many opinions as you need until you are satisfied, you just have to stand your ground.
My insurance will cover a specialist, but in order to get to a specialist you have to be referred.
All I will say is getting a referral to another specialist from my doctor will be when pigs fly, and the same for getting antibiotics prescribed unless I actually have a confirmed bacterial infection. My family doctor has an aversion to sending me to any specialist for some reason,.....took over 3 years to see a Rheumatologist...in which time I developed bone erosion in both feet and one hand ( I was at the point where I had to crawl on my hands and knees up the stairs to get to the bathroom, as my feet so bad)...when I finally saw a specialist, my Rheumatologist looked at me in wide eyed wonder when I told him how long it took for me to get a referral, then he told me with this disease, time is of the essence, you need to catch it before bone erosion starts.
Unfortunately my family doctor failed to see the big picture and dropped the ball, and I will suffer for the rest of my life.
My RA started in one finger - I was diagnosed with a sprain
(even though I told him I didn't do anything to sprain it)
After a year my finger still hurt - I was told it was a repetitive sprain
Then it progressed to finger joints my hand - I was told its overuse
( I told him I dont do anything to cause over use)
Then my RA went into my wrist - I was told carpel tunnel
(I told doc I dont do anything repetitive to cause this)
Then RA affected my joints other hand, then other wrist in exact same pattern as first - I was told it was over use injury (at this point I figured he must be right, what else could it be?)
Then both my feet started burning like fire, and had such severe pain I could hardly stand - It was very painful just to touch any of the joints.......I was Diagnosed as Plantar fascititis ( I asked how you get this, I was told from wearing high heels...I told the doctor I never wear high heels, ever) then he literally pointed to my $190.00 running shoes and he said it was my running shoes.
Then I woke one day and could not move my arm and my shoulder was locked. I had a 30 second exam and was told I have rotator cuff injury. When I inquired how I could get such an injury he told me. I knew I did not have a rotator cuff injury. My doctor kept insinuating I injured it at work. I told him I did not, I just woke up this way. I could tell he did not believe me. He left the room. I asked the nurse if he was coming back. She said "i think he is done" I said "so I am just being left like this? I cant move my arm? How am I going to work? I asked her to bring the doctor back. He did come back in, he tried to make me admit I injured myself at work. I again firmly told him I did not, I just woke up and was unable to move my arm.
I had to basically beg my family doctor to send me to a physiotherapist ....the physio therapist examined me for a full 15 minutes and then told me I likely did not have a rotator cuff injury, he has seen thousands and I do not present like a rotator cuff injury. He said he thought I had inflammatory bursitis (he was close in his guess, it was actually RA)
When I told my family doctor what the physiotherapist said, my family doctor got really, really mad...he asked me what school the physiotherapist got his MD from?.....this is about the time my IBS got really bad....IBS started about 5 years before RA and progressively got worse.
...if my doc would have looked at the progression and the big picture he would have been able to make a diagnosis....he incorrectly diagnosed every step of my disease as a separate injury. Because he wouldn't listen to me.
Then my knees joints started burning.....
My doctor has actually laughed at me on various occasions. Two years before I was diagnosed with RA, I brought a family member with me and suggested to him that I might have RA because my father also had it. My family doctor laughed at me and said that RA is not an inheritable disease...its not the first time he has laughed at me. I am astounded by some peoples arrogance.
The only way I got a referral to a gastroenterologist was because I was bleeding rectally....he would not send someone just for having IBS.
yes, I am looking for a new family doctor as I do not have any confidence in my current family doctor of over 30 years. My fiance has contacted his family doctor and she is willing to accept me as a new patient.
All I can say is , given you obvious limitations with your sore joints, run or crawl as quickly as you can away from your current doctor. He/she is not actually practicing medicine.
You are NOT ALONE. Your progression of joint pain is almost exactly like mine, Started in the ring finger of my right hand our of the blue, stayed there for 6 months, causing locking and extreme pain, then went to my other hand. Eventually multiple finger in both hands were really painful. I couldn't wipe my self in the bathroom in the morning or hold my coffee cup in the morning. After about an hour they would loosen up and be tolerable.
They were never swollen and usually by the time I got to a doctor they looked fine, so I was completely ignored. It then went to both knees, and then to the bones just in front of my ankles on both feet. It was kind of my joints, but also my tendons that were sore. That is called tendonitis or enthesitis (inflammation of where tendons join onto bone) The enthesitis is what tipped me off to the possibility of a reactive arthritis secondary to a gut infection, most commonly Salmonella or Yersinia. I know it is hard, but it would be fascinating to have the test done. It is really not expensive. You could offer to pay for it yourself if the insurance refuses to cover it (Yersinia enterolitica Serology and Salmonella Seology, generally done by public health, as they are reportable illnesses).
I ramble. My heart breaks to hear from so many people with such similar problems as me as I feel I am somewhat on the mend.
Check out my thoughts to twitchytoes above also, it might be helpful.
notibs - do you need a doctors referral to see a Naturopath? my sister has also recommended this, but if I need a family doctors referral I likely wont get one.
Well what chance do the rest of us have!! Doctors are loath to dispense antibiotics because ; overuse has caused some to be non effective. You were lucky enough to have the wherewithal to sanction or request your own tests and meds.
I did not tell you this. Trade secret. If you want to know if antibiotics will help your gut do the following (works for women and men). Go to your doc and they them you just had unprotected sex with someone who told you they have chlamidia. That will get you 7 or 10 days of doxycycline. You may also get an std check up if your doc is thorough but thats not that bad anyways. . See if it helps your tummy and take it from there.
I wonder if you have a Functional Medicine Practitioner in you area (if you are in the US). They focus on the health of the gut as the basis for many other physical problems. They will do a comprehensive stool analysis). Go on the Functional Medicine website and check for a practitioner in your area. You may have to pay out of pocket
Thanks for that really helpful post,coming from a doctor that has been through a tough time with ibs too and struggled to get help is a real eye opener but it just goes to show that it can effect anybody and its about time more was done to help all those people suffering.
I have always wondered that ibs covers a multitude of things that doctors don't want to spend the time and money to narrow down. I think there are a lot of people who actually have something treatable. But I do think there is a core that have had some trauma like food poisoning that are difficult to treat. Thanks again.
Wow that was very insightful, thank-you so much for your honesty.
I have suffered terribly since having very bad food poisoning at age 15, I am now 43! like yourself have been through several 'experts', had many scans, CT, colonoscopy, MRI etc, all to no avail. I did find the low fodmap diet interesting and have identified several food groups that cause problems however am by no means 'cured'.
Like you I have children and feel some days the most hopeless, listless disinterested parent, due to the tiredness, pain of feeling so rubbish daily.
I will certainly look into finding an alternative practitioner who would be willing to trial me on a month of this antibiotic, or look to purchase some and trial myself.
Many thanks again
Hi,
Having thought about it I know I'd be struggling with my doc to get a month long prescription for doxycycline let alone tests to see whether I need it or not, so I've just looked on the web to see if it's possible to buy it from a reputable online pharmacy without prescription and I see that it is as it's sold as a malaria treatment. However, I can only find Septra (or Bactrim) available from sites I've never heard of. Would the doxycycline on it's own be a good bet, or do you think I'd need the Septra too?
Oh, you have said in words what so many of us feel, but fail to put into words.
It's rather like a man telling you that he understands all about how you feel during pregnancy and childbirth! Complete rot!!
While you are desperately seeking some understanding and guidance with your ibs symptoms, you just know your doctor has switched off. Small wonder that so many of us suffer so badly with depression prior to "diagnosis". Thank you sooooo much for your honesty.
Thank you for being Frank . And taking the time to write your post and the things that you went through . I have had ibs 28 years now .And I must say that my doctor did send me for test after test ,to rule out anything sinister .I had a nasty trip to kings collage hospital in London ,I live in kent .I had to take medicine to empty my bowel 24 hours before and a long car ride their . I had to swallow a small camera ,that would work its way through your gut .You are wired up and are fitted with a black box with flashing lights . You are then told to come back in 8 hour time . A very long day sitting in the canteen as I needed to be near a toilet . I have been through quite a lot ,as I am sure all of you have . All my test always came back ok and was told ibs Well to cut a long story short .For years I had been getting pains in my neck ,wrist ,and different parts of my body .Also feeling bone tied .Then I saw a different Dr as mine was away. She sent me see a rheumatologist .it turned out that I had been suffering from fibromyalgia for years and my ibs was one of the symptom along with my over active bladder. At least I know that I am not going mad and that my ibs is not because I am stressed ,as this is what my doctor said was the cause of my problem s.
Hi notibs thank you for taking the time to write your post. Twenty years ago I went to my GP as my bowel seemed to have just given up wanting to work, I did have the usual blood tests, celiac etc but all clear. I had several appointments with this particular GP, on every occasion I came feeling worse than I did before I went in. Usually I am a kind soul, but I wished she had the same symptoms as myself so understand how IBS affects us mentally and physically. I have recently changed my GP, but have not spoke about the IBS, I do not think there is much more he can do.
I did pay privately to see a gastrointestinalist, but he just reccomended antidepressants.
My stomach problems are constant now, so I have been thinking of having comprehensive stool testing to see if this could unearth some answers.
Could you recommend any clinical bodies that carries out these particular stool testing?
I assume you are in the united Stated (I am Canadian). In the US you are lucky because you have a movement starting called Functional Medicine. I do not know if one of these practitioners are available near you, but they will order this type of analysis and interpret it for you. Look up the Functional Medicine website and it has a part that tells you if there are any paractitioners in your area. If I were in the US that ishow I would do it.
I think it is sooooo sad that patients do not feel that they can bring up their physical symptoms with their doctors......have we all gone mad? Is this not what we doctors are for? I hang my head in shame as a medical doctor. I would be horrified if my patients felt that way about me.
Hi notibs, thank you for your reply. I will look into the Functional Medicine. I live in the UK, hopefully I can find a professional body to do the tests. I was just unfortunate that my doctor was unsympathetic, as yet I have not had to visit my new GP, but I went along with my husband to see his doctor recently, absolutely brilliant, I wanted to hug him!!
Notibs I'm sure your patients do not feel this way about you. I've had all kinds of doctors over my 53 years on the planet and can distinguish in one glance!
Hi notibs, I was very interested indeed to read of your terrible struggle to get diagnosed and also very sorry to hear how much you had to suffer only to have to diagnose your own problem in the end. I am not sure if it's fair to ask you as you are a doctor but you may be able to help me. For the last ten weeks I have had all sorts of very odds stomach symptoms. It started with an awful upset stomach/diarrhoea, stomach pains, wind, feeling feverish and very shaky and poorly. I felt so ill I went to see an emergency Dr. as I felt I had a severe infection. He said I had a temperature and gave me two different sorts of antibiotics for 7 days as he said I had inflammation of the stomach. I started to feel better but as soon as the antibiotics stopped I went downhill again. I felt so sick all the time and had no appetite so lost a few pounds in weight.
I was been diagnosed a few years ago with diverticulitis so I wondered if it was that. Eventually I went back to see a Dr. and he did blood tests which showed up low level infection and I also had a trace of blood in my urine but it was decided it was not enough to worry about. It's now over ten weeks ago and I am still no better. My stomach is bloated most of the time and the pain just moves around all the time. Sometimes the pain moves into my back and is really bad. I also have indigestion at times. Sometimes I wake up in the night wet with sweat which makes me think I still have an infection of some sort but of course I could be wrong.
My doctor thinks I have IBS but he's now going to send me for a colonoscopy to see whats going on. Quite frankly, I am really very worried as I am convinced I have some sort of cancer. I know I shouldn't have looked on the internet but I have been in such a state I felt I needed to know. Do you think if I've had two lots of blood tests that something would have shown up if it was anything serious? Would there have been high markers of some sort? I don't know what I was tested for. I don't feel at all well and cannot do much, very tired all the time. I feel as if I must have something really wrong with me to feel this ill. I would be grateful for your comments.
I am so pleased you were able to find the cause of all your problems and hope you are continuing to improve and have a normal life again.
I find your experience very helpful and very relevant. Thank you.
I have an as yet undiagnosed bowel problem, which involves severe pain and a degree of constipation. I've had it for 12 months solidly now , but have recently developed a severe loss of appetite, which makes it hard to plan meals, cook and eat. So what you described sounded very similar. I wasn't clear whether you had constipation among your symptoms - I know you said you didn't actually have diarrhoea.
Have others had problems with nausea and 'going off' foods?
It is not just middle-aged women who are dismissed in this way. On my last visit to my GP, in desperation after many years of agonising pain, he implied that my problems were emotional. I have also had all the tests, tried all the suggested remedies, but at the age of 84 I feel just despair that I will never be able to lead a normal life. Each day is a lottery. I am glad you have found a possible solution. I don't think anyone but a doc is allowed to prescribe here.
Would clostridium difficile be a problem with long term antibiotics? Of course a lot of what I have read suggest antibiotics are what start a problem. Thanks for your post. As a physician you have special perspective and insight into these bowel issues and how dibilatating they can be. It seems like there are so many different causes and they don't exist or maintain from psychological conditions. I'm horrified when I read what some people ingest because some of my problems can be kept at bay by avoiding certain foods. A little may not cause a discernable problem but continued exposure can cause a flare and misery. History birth control pills for ~ approximately 6 years gall bladder removal when an x ray for a broken back showed stones 21 yrs old. C- section .at 32
Late 30's Bad emotional state, divorce obesity, 40's time time of high life changes
of multiple bowel movements 7x a day not loose. Did not seek medical attention. Shamed about weight as issue. Frequent antibiotics probably unnecessary. When 50 Developed a real problem w oysters after a week of a lot of seafood. One will double me over w severe pain and when my bowel will clear w one gigantic rush- relief. Late 50's severe joint pain,(arthritis fibromyalgia?) fibroids- all resolved.Fibroids I assumed w menopause. Joint pain don't know what may have stopped- maybe fish oil. Late fifties miserable fatigue two years before bowel blowout. I didn't complain of bowel pain even with perforation in bowel. Diagnosised w diverticulosis. Never in my life a problem w constipation. Wore a colostomy bag for a whiie because bowel was like "Wet newspaper" and could not be repaired. Removal of portion of bowel. Digestion fine could eat nuts etc. but regained 100 lbs I lost while I had untreated bowel perforation.
Last spring 5 yrs after bowel operation had a bad issue -flare up? Stress,poor diet, diet cokes probably eating out sandwiches. Obviously stomach problems. 24 hr fast reintroduction of food that were no- no's on SAD diets. Milk burned.- a staple all my life. wheat no-no not just stomach symptoms but other things like twinges in areas behind knees and back for wheat. A necessitiy for a nap the next day for milk. .headaches w msg. My chicken OK. store cooked chicken not. Bacon OK sausage not. I thought this was a blessing because it was so immediately clear that these foods caused a proble m and these were things to avoid.
Creeped back w. Wheat and upped intake. no digestive problems but when I stopped incredible lightness of being and feeling of being rested,energy, and more accutely aware of how a little diarrhea affected my whole well being ( like not being anesthesized.) Over last week went back to one glass of milk a day for 6 days. Last glass burned when it went down accute stomach and bowel pain bad approximately 12 hours. Vomiting precipitated by fiber I believe. Much better. I think I have to stick w what I learned w SAD and reintroduction diet even though I don't get an immediate reaction. Have to take fiber every day believe that would have avoided bowel blowout and now avoid pain w this. (Not because of constipation- still not a problem. ) other things I've given up coffee, alcohol I think I can take any of these in small amounts but may not be the best. Have mostly fruits,meats vegetables and nuts keep sugar intake low. Just sharing for what it's worth. Hard to be avoiding food when you don' t see problems immediately connected with intake. Think these foods take my whole well being down and I get anesthesized to what they are doing to me. Creeps up on me. Just sharing for what it's worth. I take no medication except supplements. Hope someone is able to take something from this
Whoooa what a frustrating ride for you, as an MD you must have been amazed at the vague attitude towards your problems, good on you for your perceverance, because now you may help millions of us who are struggling with intestine and stomach problems, top marks
I suffer in the same way, with the difference that gluten free diet doesn’t help. Doctors aren’t sympathetic enough. I feel so sick... Thank you for your post.
THIS. honestly when i was diagnosed i felt cheated. It's not a diagnosis. We all have completely different symptoms! It's just a loose way of saying theyre not gonna help you
This post helped me push for treatment. For decades I accepted I had IBS. Lose stools frequently was common.
Then I had bad food poisoning and it didn't go away. Constant diarrhea, a rushing feeling that took over my head and my ears and a nauseous feeling for months. Probiotics made it worse. Cutting out foods was even worse. I became very thin and weak trying a low fodmap diet. I demanded antibiotic treatment after telling a new doctor that, "I know my body". She was taiwanese and actually got onboard with my theory that I had a long term infection and not IBS. She said IBS was an umbrella term and she tried not to use it. She agreed to give me doxycycline, and when that cleared it up for a week and then it returned, she tried treating me for H pylori. That cleared it up. All my general IBS symptoms I had for years disappeared as well.
Interestingly, my aunt spent 30 years with various food intolerances and migraines. She was treated for h pylori a few years ago and all her intolerances vanished. I was so happy but also angry on her behalf.
I'm unfortunately now back in a similar place as to where I was 4 years ago. I got food poisoning in Paris and am back to having flatulence, wind and diarrhea. My dr told me it's post-infectious IBS. When I asked him was that means on a biological level, he couldn't actually answer. He just said it was my body reacting and I had to try cutting certain foods out. I asked for a stool and blood test - they both came back negative, further cementing his diagnosis. I tried to go private and they said, 'Well if tests are negative then it's IBS... Have you tried removing certain foods?' I have given up. I found probiotics have made it a bit better - a bit more solid. If it's not gone by the NY, then I'll order Doxycycline and treat myself. Risky but I will not go back to being told I just have IBS.
I bookmarked this post just in case I ever needed it again to remind what antibiotics I could treat myself with. I do think I have a gut flora problem as I am very susceptible to food poisoning. But I don't think just saying, 'IBS' is of any help to me.
A good read. I only just started and haven't read all the replies in this post yet. I'll try to print it and hope I can give it to the junior doctor gastroenterologist I spoke with yesterday. Maybe he's interested to read the personal experiences of a medical doctor.
I'm a microbiologist my question is what made you suspect it may be Y. enterocolitica? Few years back I got really sick in Mexico and that's when I started my ibs I did my own cultures but nothing but e.coli came up. I wanted my doc to test for pathogenic e.coli but he did not. I also have a suspicion of Vibrio vulnificus but I still think I'm colonized by a bad E.coli. Doc put me on Rifaximin but it has changed anything much I wanted a quinolone instead. Since I also have diverticular disease they think it's SUDD. I'm very frustrated is nice to hear from a physician who is in a similar situation.
After four years of "IBS" misery, my neurologist tested me for B12 vitamin level along with a confirmatory Methylmalonic acid test. My B12 level was low. After one month sublingual Methyl B12 1000 mcg daily, I am not only within normal B12 levels, but my bowel problems have improved considerably. I will continue supplementing B12 and will update this post. You are so right -- don't accept IBS diagnosis without a full investigation.
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After the birth, I just din't feel good. I couldn't exercise, then I got a bad pain in the ball of my foot that lasted years. My toes and heel went numb. A few years later I suddently started to get intense abdominal bloating the same time as I developed an odd muscle weakness, such that my arms at times felt heavy as lead. Hard to even chop vegetables. Also severe migraine type headaches suddenly. Deep bone pain all over. This was when the treadmill of doctors started. Never a diagnosis. Internist, neurologist, rheumatologist. Nothing. I first diagnosed myself with a parathyroid adenoma, a benign tumor that causes abnormally high calcium. I had it removed. I immediately felt better in a number of ways, but the weakness and neuropathy persisted. I started to get odd rushes coming from my abdominal area exploding up my head and arms every time I lied down and after I ate. More docs. A psychiatrist consult . I developed a bowel obstruction where some adhesions in my bowel caused something called an internal hernia. Really rare. Laparoscopy to fix it. When I enquired why my abdomen was bloating and why I had adhesions indicating inflammation of my bowel everyone ignored my questions, with a "sometimes these things just happen" attitude. This did not sit well with me. In fact it drove me nuts! I am a person who digs for my patients. Anyways..... Shortly after this I started to have classic hypothyroid symptoms. Sleepy, puffy, major short term memory difficulties. Endocrinologist was absolutely unhelpful. I found I had low nornmal TSH but well below normal T4, and positive antithyroglobulin and antithyropeoxidse antibodies (Hashimotos thyroiditis). Thyroid replacement really helpful. But then the joint pains began. First in my legs elbow and right ring finger, then in the tendons of most of the fingers of both hands. Excruciating. Then knees, then feet. Bloated abdomin started to be acutley painful after eating. Drenching night sweats. I had gastroscopy, and capsule endoscopy which was "normal". Gastroenterology telling me to see a psychiatrist. My gp refused to send me because she knew It was real. Long story short, I did parasite tests on myself. Found dientamoeba fragilis and B. hominis,not really terribly pathologic, but I thought I would try treat myself to see if it would help, finding no other explanation. Two 10 day courses of antibiotics made me MUCH better, but it would all come back after a week of so. I developed not only pain but intense weakness, flushing and dizziness after eating. 
Awaiting possible IBS diagnosis and having the worst flare up since Colonoscopy
IBS 
New to IBS diagnosis 
Potential IBS Diagnosis 
IBS or not? 
