Reply to: Mysterious Personal Health Issue

[dundeedude]

As a number of the reported ailments are related to back pain, have you considered trying out a chiropractor or an osteopath? I have found these useful in the past.
Though chiropractors might try to drain you of money given half a chance (through unnecessary repeat appointments).

Hello GibberJabber.
Being averse to the over-medicalisation of life I did go down this route originally. Orthotics bought through an osteopath, massages galore, chiropractor manipulations and so on. After all, sitting all day can't be good for anybody really.

MRI scan of back confirmed no current abnormalities, which was the most surprising thing of this whole debacle.

[GJABS]

As a number of the reported ailments are related to back pain, have you considered trying out a chiropractor or an osteopath? I have found these useful in the past.
Though chiropractors might try to drain you of money given half a chance (through unnecessary repeat appointments).

[TheFaQQer]

Lofgren's Syndrome?

[dundeedude]

There's the theory that Crohn's is actually many different diseases with similar symptoms, although the symptoms seem to be pretty wide ranging. I went nearly 20 years thinking it was "just IBS" as they told me the first time round, and I certainly never considered Crohn's as I didn't have the symptoms I read about. It wasn't until losing a third of my weight over 2 years that I went back.

BTW Crohn's most commonly effects the Terminal Ileum (last part of the small bowel) which is located lower right. It's also where B12 is absorbed, and a lack of B12 causes depression amongst other things. A lot of crohnies do have success reducing their symptoms with diet, but diet isn't the problem or the solution. It's your immune system attacking your body that's the problem. Stupid immune system.

I've seen some research indicating that having a severely restricted carbohydrate diet, in which refined carbohydrates are almost completely restricted, aids in reduction of symptoms for Crohn's disease, UC, AS and associated HLA-B27 disease pathologies.

There are a number of musings behind this, but the most accepted idea at the moment is: many bacteria contain genome patterns very similar to HLA-B27 and in attacking the bacteria in the diverse microbiome within the gut your body is ultimately inadvertently attacking the synovial fluid and collagen between joints, resulting in inflammation. Thus reducing the proliferation of this bacteria can lead to decreased experience of inflammation and therefore symptoms. This would also explain why a FODMAP diet, which heavily limits specific starches is also seen as beneficial for many (yet not all) such patients.

I have two friends who have taken this approach and done well and no longer on medication, managing it via diet - but a third isn't having much luck at all. This would lead to the fact that these diseases are often inter-related and caused by different bacteria or immune issues in the first place, so diet will not help alleviate all cases. Best of luck to you.

[SueEllen]

The OP should have been nutrient tested for B12, Haemoglobin, Ferritin and Vitamin D levels.

If he hasn't then he needs to ask his GP why as it doesn't save them any money in the long run especially if he collapses and ends up in A&E like some of my family members and friends.

Up until I joined my current practice I've had to fight to get every single blood test. Yet every single NHS blood test I've had has shown there is a problem.....

[VectraMan]

There's the theory that Crohn's is actually many different diseases with similar symptoms, although the symptoms seem to be pretty wide ranging. I went nearly 20 years thinking it was "just IBS" as they told me the first time round, and I certainly never considered Crohn's as I didn't have the symptoms I read about. It wasn't until losing a third of my weight over 2 years that I went back.

BTW Crohn's most commonly effects the Terminal Ileum (last part of the small bowel) which is located lower right. It's also where B12 is absorbed, and a lack of B12 causes depression amongst other things. A lot of crohnies do have success reducing their symptoms with diet, but diet isn't the problem or the solution. It's your immune system attacking your body that's the problem. Stupid immune system.

[diseasex]

I agree entirely. Depression, pain and certain foods, namely stimulants such as sugar or foods high in certain chemicals which require more digestion are naturally going to be a burden on a body already busy fighting something else. I do think that food is blamed far too often in many cases. I did find eating things relieved the situation some-what, but overall it's clearly not the problem.

I'm heading back to the doctor's again but did want to just see if anybody else had experienced similar symptoms.

What I found slightly surprising was that the two GPs I have seen (moved countries) have both said quite a list of disorders are associated with these symptoms. Makes you wonder why many of the medications focus on the symptoms rather than examine a cause. Of the few medical researchers I know there is quite a lack of money going into discovering what actually causes Crohn's, UC, the various Spondyloarthropathies. I accept it's the immune system at fault, along with interaction involving the HLA-B27 gene, but many people are similarly suffering, undiagnosed, with little reason known as to what kicks it off in the first instance.

All the best.

The problem you have is that you have few possible diseases but you have not ruled any out (based on my understanding). Based on what you said it doesnt seem to be investigated, no tests planned, nobody is lookin in your guts.. Get a proper doctor so he can rule out things and see whats the issue. So dont look for answers here but pester doctors or go privately for speed.

[dundeedude]

If that makes you satisfied that you have crossed something off your list, then good. In my experience and opinion, your situation has nothing to do with diet.

Before I become the doctor, I'd suggest that you see a real one and put all these options in front of him.

HTH

I agree entirely. Depression, pain and certain foods, namely stimulants such as sugar or foods high in certain chemicals which require more digestion are naturally going to be a burden on a body already busy fighting something else. I do think that food is blamed far too often in many cases. I did find eating things relieved the situation some-what, but overall it's clearly not the problem.

I'm heading back to the doctor's again but did want to just see if anybody else had experienced similar symptoms.

What I found slightly surprising was that the two GPs I have seen (moved countries) have both said quite a list of disorders are associated with these symptoms. Makes you wonder why many of the medications focus on the symptoms rather than examine a cause. Of the few medical researchers I know there is quite a lack of money going into discovering what actually causes Crohn's, UC, the various Spondyloarthropathies. I accept it's the immune system at fault, along with interaction involving the HLA-B27 gene, but many people are similarly suffering, undiagnosed, with little reason known as to what kicks it off in the first instance.

All the best.

[FatLazyContractor]

The main benefit of private treatment is the speed at which you are seen by a consultant or senior doctor to aid in diagnosing debilitating conditions. As I have never had an issue with delayed treatment in Scotland (very different system from England) I have no desire to head down the private treatment route.

I'll go back to the doctor again and look at this FODMAP diet again. It's a very restrictive diet, in that most pre-made products are off the shopping list, which includes eating out for a bought lunch in a normal city, but I'll give it another chance. I did try it before but noticed more varied results than you would expect with such a diet.

If that makes you satisfied that you have crossed something off your list, then good. In my experience and opinion, your situation has nothing to do with diet.

Before I become the doctor, I'd suggest that you see a real one and put all these options in front of him.

HTH

[dundeedude]

The main benefit of private treatment is the speed at which you are seen by a consultant or senior doctor to aid in diagnosing debilitating conditions. As I have never had an issue with delayed treatment in Scotland (very different system from England) I have no desire to head down the private treatment route.

I'll go back to the doctor again and look at this FODMAP diet again. It's a very restrictive diet, in that most pre-made products are off the shopping list, which includes eating out for a bought lunch in a normal city, but I'll give it another chance. I did try it before but noticed more varied results than you would expect with such a diet.

[VectraMan]

when it does, buy private health insurance

Doesn't usually cover chronic conditions, so you have to be careful with that.

[pr1]

I live alone, have a warchest I would never have thought imaginable and do not have children.

I don't have private health insurance and, given the tests in the past couple of years, would likely be charged extortionate amounts to maintain it.

assess - "does the pain hurt more than spending money?"

if not, carry on

when it does, buy private health insurance

[dundeedude]

I have Crohns. I don't know why you're ruling it out based on a scan of your back. It can cause all sorts of extra intestinal nastiness and may be linked with Fibromyalgia.

Hi VectraMan.

I am certainly not ruling anything out - one thing I know is that Crohn's disease is enormously difficult to diagnose and in some cases requires a camera-pill effort in order to find which part of the GI tract is affected.

I omitted to mention that I had a colonoscopy some time ago and this was all clear. Prior to the Ankylosing Spondylitis theory Crohn's was indeed mentioned, as I often get painful knees, joints and sometimes weakness in the right leg. At this time it has been ruled out, based on the entirely clear colonoscopy for the area in which it checked. I suppose it's a game of numbers, in which the test will catch 80% of cases.

Mine is certainly immunological, because things settle down for a day or two when I'm about to come down with a virus/illness in which my immune system is then busy fighting that rather than it's own carcass.

[VectraMan]

i dont have celiac too , but the intollerance or IBS is broader than that. Thats why try to exclude whole FODMAP for 4 weeks and see if that helps?

I have Crohns. I don't know why you're ruling it out based on a scan of your back. It can cause all sorts of extra intestinal nastiness and may be linked with Fibromyalgia.

[dundeedude]

Go private - you can afford it.

I thought so too, in fact I was even going to pay for individual treatments until I seen the cost of an MRI scan, CT, ad infinitum ad-hoc tests. It can quite easily run to six figure sums in no time. Also, the time between suspected diagnosis and tests were really quite quick - but I think more complicated illnesses with non-standard pathologies can mean somebody can experience more difficulty with the system of end treatment.