Perils of self-diagnosis

Digestive health
1

For eight years I've suffered from at times extreme stomach discomfort. I'd resigned myself to having to put up with it every day for the rest of my life -- at work, when relaxing, attending social occasions, travelling, whatever. Even as I write I'm not terribly comfortable.

I'm now wondering (even hopeful) whether this could be Coeliac disease. I'm reluctant to mention my suspicions to my doctor as I'm aware some of them get  annoyed when patients diagnose themselves from the internet.

I'd be grateful if someone could let me know whether I'm way off track with this.

If I do have the disease, I'm wondering if I've had it most of my life. I've always found it difficult to have adequate bowel movements and wound up with piles which, when I got round to seeing a doctor about after 15 years, the specialist described as the biggest and most severe he'd seen. 

At the time I was told I shouldn't be upright because I had so little blood. I was so pale that the specialist was convinced I had bowel cancer. I was given a massive tranfusion, with various medical staff wandering in every few minutes to see who this apparent freak of nature was. As I said, I believe all this was caused by my issues re the toilet. 

A few years later I got extremely constipated. (This had been an issue, off and on, for many years.) The doctor gave me some syrupy liquid and Metamusal and indicated I'd always need to take them. It got things moving and whenever constipation became especially severe I'd find the maximum three doses of Metamusal a day would temporarily fix it.

However last week, about five years since I saw the doctor about that, even the Metamusal failed to shift anything. I'm now in a different town and saw my new doctor, who prescribed some powder which has got things moving again, though I'm certainly not regular.

However, while at the doctor's I also mentioned my ''psoriasis'' had returned and requested some cream. I'd had it for five or six years but it's erupted only about six times, always in the same area just above my buttock and only covering about an inch or so of skin.

This doctor wasn't aware I had the problem and asked to see it. He told me it wasn't psoriasis at all, it was dermatitis. (To be fair to the first doctor, when he first diagnosed it he hummed and harred for quite a while before finally saying he ''thought'' it was psoriasis.)

Apart from constipation, dermatitis and the fact I'm a diabetic (I understand Coeliac disease is more common in diabetics), the symptoms include at times really severe wind/flatulence, bloating, stomach rumbling, feeling of never having been to the toilet sufficiently, the trots (when I've been constipated for several days and the medication finally gets a result), fatigue and general weakness/unwell feeling, fluid retention, gastrointestinal symptoms, poor sleep.

The symptoms of the disease seem to vary so much that I don't know whether the chance of my having it is remote, probable or somewhere inbetween. I'd appreciate anyone's view on whether the symptoms are so marked that my doctor is unlikely to laugh out loud if I mention it.

 

2

If I'd known how long it was going to take to get treated, I would've offered to pay for the necessary blood tests 23 years ago. So what about just asking your doctor how much it would cost you to have an endoscopy (to take biopsies for coeliac disease). That's what I would now do and hope that he then says, 'no need, we'll sort that out for you on the NHS.' He doesn't lose face then!

3

Hi Carter, all the the stomack problems that you mention (discomfort, wind, bloating...) as well as tiredness easily point to coeliac disease, but I think constipation is usually not the problem - on the contrary, lots of people have been diagnosed with IBS meaning they need to go to the toilet all the time. 

However. Because you have persistent symptoms and continuous discomfort and another autoimmune disease, you should absolutely be checked for coeliac disease. First the blood test and then, before you make any changes to your diet, gastroscopy. Do not think for a second that you'd sound stupid - it's the doctors who have been ignorant and stupid because you are still suffering. Ultimately you are the person who is responsible for your health. 

Just to give you some perspective, I had severe anemia for 6 months and the doctors were clueless before I was diagnosed with coeliacs. It was my grandma who talked to my mom who talked to me that I should ask to be checked for CD, and that's what I did. Two other illnesses that have threated my capability to work were also self-diagnosed after years of visiting clueless doctors. My conclusion: if you ever get seriously ill, find out what's wrong with you, then go and get a diagnosis for proper treatment.

One more thing: surely you have been told to drink lots of water and eat fiber-rich food - lots of veggies and fruit - to relieve constipation? If you are skinny and have no high blood pressure issue, it is recommendable to mix some salt in your drinking water, especially if you are drinking several liters per day. Though we are warned of eating too much salt, people with low blood pressure should be take care that they get ENOUGH salt. 

Hope this helps. 

4

PS: I meant lots of people have been diagnosed with IBS before they were diagnosed with coeliac disease. 

5

I think you're wrong about constipation: in fact, it was alternating periods of diarrhoea and constipation that led me to seek diagnosis last year.

6

OK, I guess it can vary individually. Also just checked "National foundation for celiac awareness"; constipation is mentioned as a possible symptom. 

7

IMO, that's because a diagnosis of IBS is fooking lazy, doesn't exist and is the reason for massive undiagnosed, serious illnesses.

8

Oh how I agree with rachael.

In the meantime, as I'm sure you realise from reading these pages, you need to keep eating a little gluten every day and insist on endoscopy to check for coelaic disease.  Tell him you've 'spoken' to other coeliacs (no need to say its via the internet) and some of them have constipation too - I'm sure you'll be referred for endoscopy right away ...... I say referred right away, it can take time for the test to come through and eating gluten all that time can be really taxing!

If, like me, your endscopy comes back negative then its up to you to decide whether to stay gluten free for the rest of your life.  I can't face the challenge of eating gluten again in order to have a repeat endoscopy - so I consider myself a coeliac and am much better for it.

 

9

You might be thinking what the timescale is by now. Well, I had the blood test last August and the endoscopy in November. Then I received a letter of diagnosis dated 7th January! My first appointment with the dietician was 18th February and the bone density scan was on 2nd April (no results yet - not sure if my GP will have them). My next appt. with the dietician is 27th May and she STILL hasn't sent me the stuff I asked for in February.

10

 Some GPs just don't seem to understand.

I'm happy to call myself coeliac without official diagnosis as I know how much better I feel on the diet, and its not terribly difficult these days is it?  I'd have thought after all this time feeling rubbish you would resign yourself to following a strict GF diet for the rest of your life like so many others are doing.

11

Thanks to everyone for responding, I would have replied earlier but I haven't been able to log back in until now. I'm not very good with the internet, I'm afraid.

12

I'm in New Zealand actually and as I have medical insurance I should be covered for at least some of the costs involved. Re the biopsy, I'm not too keen on the idea of it being done via my throat. However, I'vee read that if you have the assiociated dermatitis, taking tissue from the adjacent area is an alternative to the other procedure. I'm hoping that will be possible.

13

Thanks, that's very encouraging and helpful. I've been told to eat plenty of fibre and I've always been a big fan of fruit and vege but that hasn't helped the constipation. Even three daily doses of Metamusol, the stuff you mix with water for fibre, had stopped helping lately. I'm now on a prescribed laxative, a fairly mild dose, which has been helping but I don't expect I can stay on that forever.

14

Here's the thing; I awoke yesterday and didn't feel the usual stomach discomfort upon waking. Nor did the discomfort, which is pretty much a daily thing, come on during the day. Wondering why, I thought about the food I'd eaten that day and realised that, unwittingly, I had avoided gluten that day. I'd eaten nuts, fruit, vege, fish and some (unprocessed) meat. No bread, crackers or anything else that might have included gluten. I wondered if it was just a coincidence that I'd felt so much better than normal, so decided to avoid gluten yesterday as well, and today. So for the past two and a half days I've avoided gluten and the usually virtually constant stomach discomfort, severe wind etc has not reappeared. But is it possible to get an effect like this so soon after halting gluten intake or is it more likely to be just a happy coincidence?

15

I was unaware gluten had these affects. I had presumed gluten intolerance meant people might develop mouth ulcers or wheezing, things like that, I had absolutely no idea it affected people in the way it does. I wish to goodness I had known a lot earlier.

16

After the best part of three days without gluten and the extreme stomach discomfort, wind and fatigue disappearing (bliss after being affected virtually non-stop for years!), I went back on gluten last night and all those symptoms have returned today. I feel really uncomfortable in the stomach and so fatigued I've had to lie down. If that doesn't convince my GP to have me tested for Coeliac disease I don't know what will. Thanks for all the feedback, it's been a great help.

17

This actually puts you in a bit of a catch 2 situation.  If you feel you need an 'official' diagnosis you will need a gastroscopy and biopsy to inspect your villi and this will mean going back to eating gluten for 6 weeks(!) before the procedure which is not funny.

If you are content to self diagnose and just 'consider' yourself coeliac like I did, well continue to eat gluten free and feel better.  If you can put up with it it'd be better to go down the official route as you'll get your free NHS prescriptions and check-ups.