I have been referred by my GP who suspects that I may have Lupus, to a gastroenterologist as a large number of my symptoms are bowl related?

[adrian_holland]

[Natura]

I have heard lupus is gut related...our second brain. Don't know If this is a fact....just what I have been hearing. I am treating my gut with enzymes.

[overnighthearingloss]

Over the last year I have noticed some bowel symptoms. I am unsure if this is a disease progression, reaction to changed meds or something else.

But I always resist extra meds if possible and examine all other factors that I can control myself.

A few years back I had a renal crisis and my kidneys were only functioning at 8% at one point, beyond the point that dialysis is normally started. I resisted it and changed my diet to a much greater preponderance of alkaline foods as I found that I got less symptoms from these.

After a long time I started to see improvements and my kidney function improved a bit to take me away from imminent danger. I have since largely relaxed my eating and allowed myself to eat more of foods I would have previously avoided or ate incredibly sparingly and I am wondering whether I need to pay greater attention to my diet again.

As it is something that I can control, I think I will look again at diet and see if it pays dividends again.

A lot of lupies do seem to suffer in some way from one food stuff or another for whatever reason so it may also be that you are getting a foodie reaction.

[misty14]

Hi Adrian

Irritable Bowel Syndrome is also a very common extra that can come with Lupus so your Gastro Appt could be very helpful. Good luck when you go.

[LupusKaren]

Adrian, with this unpredictable disease, sometimes you find yourself at many Consultant doors before finding your way to a Rheumatologist. Your GP is referring you I would think to a consultant that fits your symptoms. No bad thing, your in the system.

There are many opinions on Lupus affecting the GI system. I have this last month, been referred to a gastrointestinal consultant, because of having problems with swallowing food and liquids, uncontrollable regurgitation and reflux, and a hugely distended abdomen, with jaw dropping pain.

I had an emergency endoscopy a week ago, reported finds oesophagitis, hiatus hernia. Follow up as outpatient a week later, and am having a 24 manometry test conducted, to check acid and ph levels in the stomach, and possibly pancreas and gallbladder scans.

My GI consultant said the difficulty with Lupus patients, is ascertaining whether gastro problems are actually lupus driven, or caused by the medications we take for it. She would not confirm that Lupus and GI problems are connected, saying it would be for my Rheumatologist to discuss with me.

I see my Rheumatologist in 2 weeks, will be interesting to see what she makes of recent developments.

On a personal level, I do firmly believe that Lupus and gut are affected, I fail to see why the gut should be excluded from the ravages of a multi-system disease such as Lupus, and of late there have been several posts from people who are complaining of GI problems.

Your not alone, good luck with your appointment.

[Purpletop in reply to LupusKaren]

May I ask what medication you are on, Karen and how long have you been on them? Just interested in which one could cause gastro issues in the long term. I'm on Plaquenil and CellCept.

Adrian, apologies for the mini-hijack of your post, it hopefully won't detract from your original question much.

[LupusKaren in reply to Purpletop]

Of course you can ask Purpletop.

I will list them all, and most of them have the capacity to cause gut issues, but as I have been on all these meds for a year, I am dubious as to them causing me my issues now, but not impossible I know.

As per you:

Plaquenil

Cellcept

Clopridogrel

Aspirin

Lansoprazole

Quinine

Sumitriptan injections (for cluster migraines)

Amitriptyline (for pain)

Having done months of research, with my GP's reluctant agreement, I have withdrawn Lansoprazole for the time being. I personally think these PPI's are dished out way too easily, and through deduction have worked out my issue is not too much acid, the reverse not enough.

Whilst the first 36 hours were horrendous withdrawing from Lansoprazole, I cannot lie, since starting my own researched supplements, which I am happy to talk privately off boards about for anyone interested to know, I am very happy to report, this last week, my GI issues are much improved. I have also made the conscious decision to remove all wheat and dairy and refined sugars out of my diet, for the moment temporarily until my stomach has repaired.

[Cann]

I was referred to a gastroenterologist, but all that was on offer was a colonoscopy in 2001, so I went the complementary route and helped myself.

The gut can be affected by immune system problems just as any other part of the body, especially if you've had many courses of antibiotics and other drugs in your life as I have.

In fact, I feel my auto-immune problem started in the gut as these were my first symptoms.

80% of our immune system is in the gut especially intestines and so if this is damaged, so is the immune system. However, I am sure if I let doctors mess around with my intestines again, it would just set off more trouble.

My husband is going for a colonoscopy on Wednesday and I have been trying to persuade him to cancel it because I am sure it could set off problems with having to eat a rubbish diet before hand, then fast and then take picolax which can only be described as poison or alien to the body, in my view.

This is my opinion, of course, but we are all different and I fear the procedure could set something off with my husband's gut and how could he then resolve it or prove it was the colonoscopy?

I know my body is sensitive and it also remembers every invasive, toxic and traumatic experience it has ever had, as they have all been coming out with complementary treatments - things I didn't even know about as well as those I did.

It has made me think carefully about what I allow to be done to me!

[adrian_holland in reply to Cann]

Oh joy of joys..... the prospect of being offered yet another (this would be my 4th) colonoscopy, is something I await with eager anticipation. All that was found last time was diverticulitis!!!

[Cann in reply to adrian_holland]

You poor thing.

One of the reputable and experienced complementary therapists that I saw, at the time my GP wanted me to undergo a colonoscopy, was a bio-com expert and he tested me for many things with the vega-test export machine .

He was the only practitioner in this country - trained in Germany - to use this method.

He said that at the very least I would be diagnosed with Crohn's, diverticulitis and colitis if I had chosen to have the colonoscopy, but apart from more surgery and drugs there wasn't a lot they could do about it and he advised me against going that way.

He was brilliant, but sadly died of cancer in 2008 whilst still treating me.

He worked so hard helping others, but didn't help himself as much as I feel he could have done, due to the work-load of helping so many sick people - He must be an angel now!

I remember all he taught me and I adjust my diet when I have flares - not easy, but I know I have to do it.

I use herbs and homoeopathy, too, which is what he treated me with - I owe him so much.

Good luck with your health whatever you decide to do.

[Bebe76]

I was diagnosed with lupus and Coeliac disease in the same year. Apparently it is not uncommom for autoimmune diseases to occur together. I also have acid reflux and hiatial hernia, both present before I started on any meds.

[Cann in reply to Bebe76]

I suspect that lack of detection of coeliac disease can lead to Lupus because after all Lupus is just auto-immune reactions in any part of the body whereas coeliac is damage of the villi in the intestine by gluten (from the latin or greek word meaning glue - can't remember which!) leading to mal-absorption of nutrients, which will lead to more immune system problems with the gut playing such a large part in the immune response.

It was a naturopath who felt from my symptoms in 2001 that I was coeliac and I was so much better after leaving out not just gluten foods, but all grains, perhaps because my problem had become so severe with a lack of detection from tests.

Apparently, 1 in 8 people are coeliac in this country and only 1 in 100 are diagnosed or that was the state of play when I listened to a programme on the radio a couple of years ago - Detection may well have improved by now.

[adrian_holland]

To all who are interested I am (so far) managing to continue my blog ramblings

[tremarel]

I've recently been diagnosed with colitis. Apparently it's not lupus related but have been told caused from all the medication over the years for lupus . After having lupus for most of my life & being on steroids for 35 years I'm not surprised. Although I still believe lupus is the main cause of everything. Just an ongoing battle! All the best to you hope you get to have more good days than bad. Battle on !