Freedom from gluten is my way of life for life.
My Gluten Free Story
In December 2010 Santa Claus was preparing a surprise for me and on new years eve I became an emergency admission at our local NHS hospital with enough pain in the abdomen to be suspicious that the second coming was upon us and I was pregnant with it!
Resplendent in my new national elf anti-DVT stockings, I spent Xmas day in an almost deserted NHS Hospital (The GWH in Swindon, UK, my home town). It was not until Boxing Day that one of the few non-Christian surgeons still on duty, the rest were presumably off enjoying their cold meats, sherries in the library or complacently attacking a round of golf, scrubbed up and removed an appendix from my, by now, very distressed person.
It did not go well. Key hole surgery was tried but failed. Conventional surgery was started but revealed that the offending and inconsiderate appendage had burst! Undaunted by this setback, my surgeon, warming to his challenge and niftily skirting the navel, cut his patient open from sternum to abdomen, had a good look around inside, made a photographic record of the whole sorry state of affairs, and, as it were, got stuck in to his work on the only seasonal turkey to hand.
Two days later my surgeon rather proudly informed me that there had been hardly any stump left for the suture but that he had achieved the impossible and everything was fine. Everything not being quite as fine as he had anticipated his handiwork quickly ulcerated, peritonitis set in and 5 days later the same cut was being re-opened for another clean up and a resection. My forbearance was rewarded with a newly repositioned navel on a jaunty angle, a snake of steel staples more than 240mm long, double and quite artistically random in places and two rather cute but different stomas, beautifully crafted, with real personality and an automatic, rhythmically mesmerising life of their own. I unceremoniously named them raspberry and strawberry.
It was almost sad to say goodbye to my familiar fruits after a long, slow recuperation when, ten months later and following another chase down the scar furrow with a nifty scalpel, the whole lot was reversed and I became once more whole with only the scars to prove it minus a good length of plumbing and a clever little valve called a caecum. The re-section operation itself went well I think. I cannot be sure because I was out cold, but I did come round eventually, so I assume it went well enough. Unfortunately I developed Urticaria (hives), they said from the antibiotics (Co-amoxiclav) which turned the four day stay in hospital into a four day nightmare.
Now I could just as easily have informed my reader that I had had major bowel surgery and kept the sorry tale shorter but that might have sounded more like a quick nip and tuck. In any case I needed to garner a little more sympathy in preparation for what comes next.
As I have tried to describe it was all in fact extremely complex. My inwards were outwards three times in all and a great deal of cutting, snipping, modifying, washing, cleaning and general buggering about with those inwards along with drainage tubes invading my personal person. One of these was a stainless steel tube that wiggled its way into the depths of my being so far that it seemed endless when it was finally, slowly and thrillingly extracted by an obscenely gleeful ward doctor.
So what came next? As far as the NHS was concerned, nothing. Apart from visiting the stoma nurse a few times for checking the “apparatus” which now adorned my nether regions. I also attended a general health check prior to the final re-section ten months later but otherwise no doctor, surgeon, consultant or registrar was interested in or seemingly responsible for my post-operative well being. My GP and I got our heads and my symptoms together and worked it out for ourselves aided by Dr. Google.
The manic diarrhoea was partially controlled by Imodium, 8 tablets a day plus two co-codamol to get through the night (with only two trips to the loo). Later on acid reflux was dealt with summarily by an omeprazole tablet a day.
Unfortunately the only way to combat lactose intolerance is to give up Pavlova and cream teas but, like the good little soldier I try to be, a brave face was put on it and out went the dairy.
Then there was the hyperuricaemia, gouty big toe. Monthly, very hot gouty big toe in fact accompanied by four days excruciating pain and inactivity. Eventually the months seemed to run into each other. Allopurinol to the rescue, giving up alcohol and rich food was not an option since I drink no alcohol whatever and eat only modest amounts of red meat.
Disappointed by being downgraded as a blood donor due to anaemia I visited my GP for a solution and two months of iron tablets later was allowed to resume donations.
Did I mention the blood pressure? No? Well as my weight recovered to pre-op numbers so did my blood pressure and then some. A few medicines were tried, I was allergic to one, nauseous to one, itching with another and on the last one, blood pressure instability which caused me to faint at what was to be my final blood donation. After giving generously of my vital fluids there followed a fainting episode with, according to the paramedic, a BP of only 40 over something. It was of little consolation when the head donation nurse informed me that I had been the first donor she had ever needed an ambulance for in her entire career and she was, by the way, no chicken.
Three years we hobbled along, my gut and I, like the rattling, gurgling, hammering pipework of a Victorian institution which had settled into a semi-stable state of precarious preservation maintained by chemicals and constant tweeking. The Imodium was tapered off over the first 6 months and we levelled out to an average of 6 loo visits a day after about 15 months into the recovery. No more blood donations, no more cream teas, no more trips out and those we did were carefully planned to stage-post from toilet to toilet.
Four years after the initial emergency admission the trembling, palpitations, paranoia and flashbacks started. My off switch malfunctioned so I stopped sleeping as a nervous stress breakdown got underway with a vengeance. More medication and 15 months later a relapse.
Now I am a patient man by nature, inclined to take things as they present themselves and make the best of what is available but it was beginning to get a little tiresome.
Time passed, as did a lot of other stuff, regularly and often.
It is now the late summer of 2016. I enjoy medical TV programs, curiosity I suppose but that is how a scientific education has affected me. I think the presenter was Dr. Michael Mosley. The subject, Coeliac disease, an inherited condition, and becoming quite attentive I started ticking off the symptoms. I had the full set. Dr. Google was again consulted and revealed that this illness although inherited can sometimes lie unsuspected and hidden until kicked into life by MAJOR BOWEL SURGERY. Epiphany! The words flew out of my mobile device and within hours I was gluten free and on an experiment that would change everything. After seven weeks, waltzing in to his surgery on air and glowing with new found vigour and purpose I saw my GP and proudly announced to him and four students that I had Celiac disease. After a few polite interchanges along the lines of “Oh yes of course you have now please sit down and tell me what’s the matter” he could do nothing but agree with me.
In order to be tested it was necessary to eat gluten in the form of one sandwich a day for four weeks. I did so and became even more ill than before the gluten free experiment. The tests where negative but we had done enough for my GP to diagnose non-celiac gluten sensitivity, NCGS. I have not eaten any gluten (apart from a few accidents, and it is amazing how little it takes) for many months now and everything has changed. I am now back to being a one-a-day, S***, shower and shave man, sometimes two of the first mentioned but only occasionally. Transit time has gone from say 30 minutes to 14 hours or more. I had been suffering from mal-absorption over many years and just getting by until my system ran out of patience and gave up. I have now gone from “getting by” to being profoundly well and happy to be back with just the genuine old age complaints that cannot be avoided, arthritis, back ache, tinnitus, all suddenly so welcomingly normal but occasionally recalling health issues that have seemingly disappeared. Treatment for gout continues and further investigation revealed a vitamin B12 issue and a possible cure for burning foot pains and throbbing fingers which is still in progress as I write.
I am at the 4 month point now and there is still some way to go, still more of the story to unfold, apparently with some folks it takes years to properly recover. For the time being at least improvements are continuing and there are compensations to a life-time ban on eating Cornish Pasties, fresh crusty bread and the wife’s legendary meat pies. I can now safely and with some relish enjoy a double helping of Pavlova and quantities of the truly magnificent Stilton cheese without batting either an eyelid or toilet lid!
I have just paid what could be described as a final visit on this issue to my GP. I am not, apparently, to assume that a stress breakdown was due directly to gluten. Although mal-absorption can interfere with one’s brain chemistry the stress event was due to both health struggles and stress elsewhere in my life being in sum total too much for my constitution. On a final footnote, some, even some modest, aftercare by the surgeons who re-designed my central eating system and removed the last 40cm or so of my ileum, my caecum and the first 40cm of my colon (approx..) should surely have provided me with advice that my b12 levels would automatically deteriorate (a given) and that bowel surgery can cause gluten sensitivity. It might then not have taken six years waiting until I had worked it out for myself. I now believe that Urticaria following the final bowel resection was an auto-immune response due to the surgery not the antibiotic.
Postscript (October 2017)
I omitted to mention that thanks to malabsorption of nutrients and vitamins I also started to exude excessive hair grease and for a period had very unpleasant fishy urine thanks to my system not processing trimethylamine properly (The same thing that causes an illness known as Fish Odour Syndrome).
I have a developing back pain issue which I am told is due to the amount of muscle damage caused by three lacerations down my front from my sternum to my justshortofum which I am now learning how to manage. The good news is that I am, generally, very well recovered. It has been slow and at times dispiriting but there has been a great improvement and because I sense that there is more improvement to come, even after all this time, I am very optimistic for the future.
I read recently that “Dr. Google” is causing some GP’s great consternation because, they say, it is undermining their professional standards and methods and in particular their relationship with their patients. Sorry for the language but f*** them! I had a life threatening illness and three operations with life changing consequences and no doctor either in or out of hospital was there for me. They failed me, the NHS failed me, my GP’s, all of them failed me. Dr. Google however, together with my persistence, and engagement saved my life.
Postpostscript (April 2018)
No more serious foot pain, back spasms are a thing of the past and after 12 months of Vitamin b12 injections my mental state has stabilised. Those periods of uncontrollable low mood and anxiety have not returned. Vb12 it turns out IS a precursor for serotonin and dopamine and my GP was right to blame my inability to control my PTSD (without pills) was down to low Vb12. Hurrah!
Onwards and upwards, and let us hope it lasts.
My Gluten Free Log
I have added a new section to the main website with the heading “Life Matters”. Any subject which does not find a specific home elsewhere will find itself a landing here. This will include for example and amongst others, health, general everyday interests, finance and so on. Today I have published a page entitled “Gluten Free Log” which can be found via the main menu and directly here My Gluten Free Log.
A Little About Gluten
It has become somewhat faddy to go GF but there are many genuine sufferers whose systems react unpleasantly to gluten containing foods, i.e foods containing Wheat, Rye or Barley. So badly that for some it is positively dangerous and for others it is a variously serious, debilitating and inconvenient illness. I am one of this last kind.
There a variety of resources to help with diet, recipes and information. Many supermarkets have a Free From section and there are generally a wide and growing range of foods clearly labelled Gluten Free. There are however many foods not especially made for the GF community but which are labelled GF but less obviously, or which are safe but not labelled GF and not generally guaranteed. The Log I have started today will record food products in these latter two categories so that as time goes on I have a quick reference to foods I am sure about, foods I have tried already. This is not intended to be a comprehensive list of gluten free foods. All food is gluten free (except wheat, barley and rye) until it is processed, added to or otherwise mucked about with. My log will list foods other than so called “Free From” foods which are not obviously safe for those with a gluten problem but which I have personally risked consuming or foods which are marked Gluten Free but discretely.
I hope also to list links to reference sources which I find useful.
Some words of caution. Always check the ingredients. Even on foods you feel sure about. Recipes change and I make no guarantees of the accuracy of this list.
Also a word of general warning, but particularly regarding oat products and cereal products: airborne and particle contamination is a problem in cereal processing and in both cereal (e.g. biscuits) and other food manufacturing. What I am happily eating might occasionally cause you or indeed me an upset. You must decide for yourself what level of risk you can tolerate. In particular if you are Celiac, especially if newly diagnosed, be cautious with oats. Whilst oats do not contain gluten they do contain a similar protein called avenin which causes the same symptoms in a few cases.
For any fellow sufferers out there who are interested in my situation, it appears that I do not have Coeliac (Celiac) disease or at least have not tested positive for it. I have been diagnosed as having Non Coeliac Gluten Sensitivity (NCGS). There is still a lot to be learned about this condition but the external symptoms are, in my case anyway, identical. The latest research from at least three organisations seems to be coming to the conclusion that there is still an auto-immune response happening but a systemic one following leakage of gluten (or a substance associated with gluten) abnormally through the bowel wall.