Hello thought I would share my story and advice because I'm fed up. It all started a year ago I fell ill then I couldnt shake off the nausea I had such bad constant nausea and stomach pain I lost so much weight the doctor thought I was bulimic. When he realised I wasnt he tested me for celiac and hpolyri both came back negative he then diagnosed me with ibs and anxiety he proceeded to tell me he didnt want to see me again which didnt help my anxiety. I removed gluten from my diet which helped a lot I no longer have constant pains it just comes in flares. Over the year though I was still losing weight so I went to the doctors but a few of the doctors said it was probably due to my diet change. I also developed exercise induced asthma I think due to whatever I had . It wasnt until I lost 6lbs over christmas again (in total I lost 37lbs) I decided to go back to the doctor and they finally listened I have an emergency upper gastro meeting on thursday. Some of my family members have crohns so its likely I might have it the doctor also thinks it maybe celiac. I'm slowly though starting to think its crohns more the only thing that makes me doubt its crohns is I seem to have constipation more and I have endometriosis so I'm unsure whether the blood in my stool is due to that and something else. I'm currently in a bad flare last night I bloated so much I was really nauseous then hardly slept because I had bad eye head ear ache woke up felt really weak. Whats the best things to eat on a flare? Also I had an MRI for my endometriosis would it show if I have crohns?
A year later still waiting to be diagnosed and need advice
- Thread starter EndoAbi
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Hello, welcome to the forum
I'm sorry to hear about your problems but I'm glad you've found us. What testing have you had so far?
If you are going to be tested for coeliac disease again, then you need to be eating gluten. I know that you feel the change in diet has been helpful, but if you aren't consuming gluten at the time of testing then it will come back negative even if you do have coeliac as the anti-bodies wont be active. I have both Crohns and coeliac disease so it is possible to have a combination of the two.
I would suggest keeping a symptom diary, keep a note of what you eat, your stress levels, your tiredness, how much pain your in and your bowel movements, this will help to see if theres anything specific that is triggering your symptoms which can make diagnosis easier and help the doctors to suggest things that may help you.
I would ask your doctors for a stool test, called a fecal calprotectin, which will help show any inflammation in your intestines, and for at least basic blood tests but this should include checking your iron levels, your vitamin D and your calcium and B12 as these nutrients are often low in people with bowel disorders, as we dont absorb things the way other people do.
How well controlled is your endometriosis? If this is flaring up, it can cause many of the symptoms related to IBD, so if you haven't had a check up for this recently then it may be worth asking to have this investigated too.
An MRI is a good check for IBD, but its not fool proof, if they were not looking at your bowel then its unlikely they will have picked up any inflammation, especially if you didnt have any contrast or if the inflammation is in another area of the gut which wasn't visible on the original scan.
I'm sorry to hear about your problems but I'm glad you've found us. What testing have you had so far?
If you are going to be tested for coeliac disease again, then you need to be eating gluten. I know that you feel the change in diet has been helpful, but if you aren't consuming gluten at the time of testing then it will come back negative even if you do have coeliac as the anti-bodies wont be active. I have both Crohns and coeliac disease so it is possible to have a combination of the two.
I would suggest keeping a symptom diary, keep a note of what you eat, your stress levels, your tiredness, how much pain your in and your bowel movements, this will help to see if theres anything specific that is triggering your symptoms which can make diagnosis easier and help the doctors to suggest things that may help you.
I would ask your doctors for a stool test, called a fecal calprotectin, which will help show any inflammation in your intestines, and for at least basic blood tests but this should include checking your iron levels, your vitamin D and your calcium and B12 as these nutrients are often low in people with bowel disorders, as we dont absorb things the way other people do.
How well controlled is your endometriosis? If this is flaring up, it can cause many of the symptoms related to IBD, so if you haven't had a check up for this recently then it may be worth asking to have this investigated too.
An MRI is a good check for IBD, but its not fool proof, if they were not looking at your bowel then its unlikely they will have picked up any inflammation, especially if you didnt have any contrast or if the inflammation is in another area of the gut which wasn't visible on the original scan.
Hello thanks for the reply and support I feel fed up chasing for answers online because the doctors dont seem to help. I have been tested for hpolyri and celiac twice both times they came back negative I've also been tested for diabetes and anemia they came back negative as well I was tested for them in a normal blood test so I think everything else is normal levels which confuses me why I'm losing weight even when I have flare ups and dont want to eat I still do (I do though take extra vitamins). I'm prepared to eat gluten if I need to but I decided to wait in case I am celiac. I am trying to keep a dairy but its so hard to narrow down whats triggering me.I dont think they ever did the stool test and I've been referred to upper gastro so hopefully they can straight do a Endoscopy. I think my endo is controlled quite well since I've had my coil fitted but theres still a chance its travelled into my bowel. I did though ask my endo specialist whether it could cause weight loss and dark hard stool and he said its more than likely not to be endo. I think they scanned my bowel is it worth suggesting the gastro to request my mri? Thank you for the reply and making me feel welcome. I'm so sorry you have both celiac and crohns it must be awful.
Thank you for the reply. I will mention it at my gastro appointment then.
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I understand. It took me almost 5 years to get diagnosed with Crohn's and 12 to get a diagnosis of arthritis, so I completely get being fed up and feeling like you're never going to get anywhere. Unfortunately there's a lot of people here who have had to go through the same so it's definitely not just you, but please keep going.
Were you eating gluten when you had the blood tests done? If not then they would have been negative regardless. In my experience doctor's recommend that people don't change their diets unless they've been told to, so it might be worth asking your consultant what they think with regards to this.
I would still recommend having the blood tests for anaemia etc repeated as this can change quite quickly, particularly on a restricted diet like a gluten free one. It's so restricted that most doctors don't recommend following it unless you're being monitored by a dietitian. I have to have yearly follow ups for life because of how much food has to be removed from my diet.
In terms of inflammation, bloods aren't always accurate. Mine often come back fine despite my Crohn's being very active, so having something like a stool test would possibly be more reliable.
It could be worth your consultant asking for your MRI results but it does depend where exactly they were focusing on and if you had oral contrast etc as to how helpful they will actually be , it might be worth having the scan repeated to look specifically at your gut as they can then look at the whole system.
I think it is unlikey that your endo is causing all this but I have heard of this happening, it is rare though. It might be worth just mentioning to the gastro consultant incase it's something he's come across.
Were you eating gluten when you had the blood tests done? If not then they would have been negative regardless. In my experience doctor's recommend that people don't change their diets unless they've been told to, so it might be worth asking your consultant what they think with regards to this.
I would still recommend having the blood tests for anaemia etc repeated as this can change quite quickly, particularly on a restricted diet like a gluten free one. It's so restricted that most doctors don't recommend following it unless you're being monitored by a dietitian. I have to have yearly follow ups for life because of how much food has to be removed from my diet.
In terms of inflammation, bloods aren't always accurate. Mine often come back fine despite my Crohn's being very active, so having something like a stool test would possibly be more reliable.
It could be worth your consultant asking for your MRI results but it does depend where exactly they were focusing on and if you had oral contrast etc as to how helpful they will actually be , it might be worth having the scan repeated to look specifically at your gut as they can then look at the whole system.
I think it is unlikey that your endo is causing all this but I have heard of this happening, it is rare though. It might be worth just mentioning to the gastro consultant incase it's something he's come across.
Its ridiculous how long they take to diagnose it. It doesnt help when you are young they tend to think its all in your head. My first blood test I was eating gluten but it came back negative thats when the doctor told me try different things and when I found going gluten free he told me to continue. My anemia blood test I took was only a weeks ago everything was normal apart from my liver was acting like it had an infection thats why I was retested for my liver and was tested again for hpolyri but both came back fine. Ohh I heard you couldnt test inflammation through blood. Is it possible for stool tests to not show inflammation? A year ago I did a stool but I cant remember what it was for. I will mention it. The only reason I doubt its endo is because I had endo symptoms prior to when I fell ill and developed constant stomach pain nausea constipation really bad fatigue and really bad reaction to something as little as a cold (after bloating 10x bigger yesterday I'm currently sat drained with ear and head ache and sore throat) Thank you for the reply.
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I think it's partly because there are so many different things it could be. When I was younger my peads consultant said that they try to be careful when diagnosing teens because they are very aware they're putting a life long label on you and if theyre wrong it can really mess things up. You're really vulnerable at that age and I suppose they're trying not to give you un-necessary heartache. Which I get, but it doesn't make it any easier in the middle of the night when you're writhing in pain does it.
I'm glad you've had recent blood tests. I think it would be good for these to be a regular thing if possible, it's always good to keep an eye on these things.
Blood tests for inflammation are tricky things. They will throw up anything from a cold to severe inflammation and there's not always a way to distinguish between the two. They are good to keep an eye on you and make sure nothing emergent is going on but past that my doctor's take them with a pinch of salt. My bloods only show inflammation when I'm very sick. There is a theory that your body gets desensitised when you have a chronic illness and stops reacting the same way, so you don't have elevated CRP etc.
Stool tests could be done to check for blood, bacteria or inflammation, so it's possible that your previous sample wasn't looking for Ibd. They can give false negatives, it has happened to me in the past, but they're generally considered more reliable than the blood tests. If it's been more than a couple of months since the last one then it's definitely worth asking for another one. I can't see why a doctor would have an issue repeating it as its non invasive and cheaper than scans etc.
I understand, I know that things like endo can change with time, so it is a possibility but I do think it's only a slight one. I think at this moment your doctor's need to be investigating everything possible as it's not fair to leave you in this position. Please keep us updated on your progress and don't hesitate to post or ask questions if you need to. Even if it's just to rant.
I'm glad you've had recent blood tests. I think it would be good for these to be a regular thing if possible, it's always good to keep an eye on these things.
Blood tests for inflammation are tricky things. They will throw up anything from a cold to severe inflammation and there's not always a way to distinguish between the two. They are good to keep an eye on you and make sure nothing emergent is going on but past that my doctor's take them with a pinch of salt. My bloods only show inflammation when I'm very sick. There is a theory that your body gets desensitised when you have a chronic illness and stops reacting the same way, so you don't have elevated CRP etc.
Stool tests could be done to check for blood, bacteria or inflammation, so it's possible that your previous sample wasn't looking for Ibd. They can give false negatives, it has happened to me in the past, but they're generally considered more reliable than the blood tests. If it's been more than a couple of months since the last one then it's definitely worth asking for another one. I can't see why a doctor would have an issue repeating it as its non invasive and cheaper than scans etc.
I understand, I know that things like endo can change with time, so it is a possibility but I do think it's only a slight one. I think at this moment your doctor's need to be investigating everything possible as it's not fair to leave you in this position. Please keep us updated on your progress and don't hesitate to post or ask questions if you need to. Even if it's just to rant.
They do more damage leaving it I think my immune system is almost ruined I've only got a cold but I feel so drained. Update they are doing a stool test for crohns a ultra sound a sigmoidscopy (is that how you spell it) and a biopsy for celiac so not looking forward to eating gluten again. I hope you dont mind but how was the bowel prep for you?
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I understand what you mean, but I also understand what the doctor meant, it's the sort of thing where either way they can't do the right thing for everyone I suppose. They either they do every test they can and potentially put a child/young person through potentially traumatic tests where they aren't really needed or they hold off and risk missing things in kids that do need it. It's hard to know where that balance is I suppose. I know in my case my consultant thought I'd been through enough already and wanted to give it some time to see if things settled when my coeliac was controlled but unfortunately it just got left too long and I was moved to adult services which made it even worse...
I didn't have prep for my coeliac biopsy, I just had to fast, but it was an upper scope so depends what way they do yours. For a sigmoidoscopy most people have an enema, and although they aren't pleasant they aren't too horrible.
If you have a colonoscopy, then you will need to drink bowel prep. I won't lie, they're horrible and usually taste pretty nasty. Most of them require a big volume being drunk which makes them more difficult, the easiest in my experience is picolax because it's the smallest amount to drink and the least disgusting taste, but you do have to drink a lot of other fluids on top of that to make it work. Some consultants won't use it though because it's pretty harsh ( but they all are really)
My original doctor only tested me for celiac and hpolyri and nothing else just dumped me on mental health services when they came back negative.
Sounds like I've been unlucky haha I have to take moviprep for the sigmoidoscopy. The whole emptying my bowel doesnt scare me if it comes out the way it should but I have a massive phobia of sick and praying to god I'm not sick.
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Hi, briefly read this. Have they done a feacal cal protectin test yet? It's a really good indicator of Crohn's disease as sometimes without invasive procedures it's hard to distinguish between ibd and ibs. I hope you stay strong and fight to get yourself heard. You know your body more than anyone else so dobt be afraid to keeping asking the doctors for answers. If nothing comes from cal protectin and sigmoid ..... then maybe they should be looking a little deeper if things persist .... have they ever mentioned a colonoscopy? It goes a little further and if they do biopsies they can usually tell straight away if it's ibd when test results come back. Good luck and keep us posted 
If I were you I would look for a good gastroenterologist who specializes in inflamatory bowel diseases. I use ZocDoc (it's an app and also a website) and it makes it pretty easy to find a doctor and get an appointment scheduled quickly. Make sure to read the doctor bios to see what they specialize in and read reviews. Go see that doctor and he will know what tests to run. It's not that hard to diagnose if you're working with the right doctor. I got diagnosed within a week after my doctor did a colonoscopy it was pretty clear I had severe inflamation consistent with Crohns. I was really expecting to just get an IBS diagnosis, but it's nice to have an answer even if it's a bad illness.
Actually, I just saw that you are in the UK, so not sure if ZocDoc is international (probably not, I'm in the US). But maybe search for something similar online? I think finding the right doctor is really the key. And I know I've wasted my time waiting for appointments and getting ignored by doctors before for other things, so I know how frustrating that is
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I'd be really surprised if something like this was available with NHS doctor's, we can decide where we would like to be treated within reason but don't get to pick and choose who exactly we want to treat us except in exceptional cases (like if there are only a few with the expertise to treat a specific illnesses), but we can ask for second (or third, forth, fifth etc) opinions if we don't agree with the person treating us. If we want to be seen by a specific specialist unit or physician we have to be referred to them, it's not like the us where you contact the doctor's office.
I handed in that cal protectin stool test yesterday and had an ultra sound I know at least I dont have any tumours or gall stones. Its bad but I hope my crohns or celiac test comes back positive because if they come back negative I dont think I will ever be listened to again. At the same time if my crohns test comes back positive I'm going to be annoyed I told my doctor a year ago crohns runs in the family also that my great grandad had bowel cancer but because I'm young I cant be ill. They havent mentioned a colonscopy but they might do that at some point I'm not sure. Thank you for the support.Hi, briefly read this. Have they done a feacal cal protectin test yet? It's a really good indicator of Crohn's disease as sometimes without invasive procedures it's hard to distinguish between ibd and ibs. I hope you stay strong and fight to get yourself heard. You know your body more than anyone else so dobt be afraid to keeping asking the doctors for answers. If nothing comes from cal protectin and sigmoid ..... then maybe they should be looking a little deeper if things persist .... have they ever mentioned a colonoscopy? It goes a little further and if they do biopsies they can usually tell straight away if it's ibd when test results come back. Good luck and keep us posted
Thank you for the advice but yeah I'm from the uk unless you go private you cant really pick and choose doctors. I dont doubt the doctor I'm seeing now hes testing me for everything haha
