I am Coeliac! Give me Gluten-Free! Spare me from Gluten! Deliver me from Cross-Contamination! I was diagnosed in 2011 around the same time as Pizza Express became the first pizza chain in the UK to introduce a gluten-free menu. Genius Bread was being sold via retail and wowing people previously limited to unspeakably bad bread on prescription.
Relative to the dark ages of being gluten-free before EU regulations established standards and before the diet became popular resulting in growing awareness and a ‘free from’ aisle in supermarkets almost everywhere I had it pretty easy.
But how did I gain my Coeliac Diagnosis? Thanks to running the Gluten Free London Meetup Club, following other gluten-free bloggers and meeting people at events like the Allergy Show I have listened to *at least* one hundred Coeliac diagnosis stories. I can say with confidence that my story is completely different and very unusual. I am yet to connect with anyone else with an even vaguely similar story. My story may be one of a kind! So it is time to share!
Coeliac Diagnosis Curse or Blessing?
Receiving a coeliac diagnosis is often a combination of curse and blessing. The curse is the need to follow a lifelong gluten free diet. This demands learning, adjustment, constant vigilance, many explanations, and many frustrations. Even time served coeliacs are at risk of mistakes made by others and the ever present threat of cross-contamination.
Thankfully gluten-free food is more and more available and the quality is better than ever. For evidence just look at the Free From Food Awards. The flip-side to this is additional cost. Some favourite foods might still have to become lost loves. Bye bye good croissants!
However the blessing is the revelation that following a lifelong gluten free diet offers hope. Hope that long term health issues will be resolved by excluding the demon gluten. Diagnosis offers certainty. It offers a way forward. A way forward that enables you to take back some control of your health.
Long, Hard, Road to Diagnosis
Getting to a coeliac diagnosis is for many a long and arduous ordeal. Lets look at a typical diagnosis story. There are usually some or all of the following ‘ingredients’.
- Years of suffering from myriad long-term and short-term health issues for which the potential causes are many, varied and non-specific to coeliac disease
- Inability of health professionals to identify the cause and therefore offer solutions
- Experience of dismissal, disinterest or misdiagnosis
- Coping with disbelief and exasperation from medical professionals, friends, family and co-workers for the condition and symptoms that have no ‘name’
- Self-experimentation with restrictive diets of various kinds without success and with potentially further negative heath outcomes
- Feelings of frustration, desperation and depression and having no where to turn
Therefore as unwelcome as a coeliac diagnosis is it can often deliver relief relative to a long period of suffering and frustration that preceded it. Breakthroughs are often reached by people actually pushing for a coeliac antibody test themselves after chance learning or recommendation. It is estimated that the majority of coeliacs, perhaps as high as 80%, are undiagnosed.
For some no Diagnosis at All
Some unlucky folk actually miss out on a diagnosis completely. Before they can be diagnosed, which requires that they are consuming gluten, they have already become certain that gluten is the cause of their issues and eliminated it from their diet. The diagnosis process requires that gluten is consumed and they are quite understandably not willing to reintroduce it. This denies them a formal diagnosis and any support that would accompany it.
I have heard countless variations of these stories and never yet a ‘happy’ story. Sometimes the diagnosis is framed as a relief, sometimes not, but there is almost always a suffering filled run up to it.
My Rather Unusual Pre Diagnosis
Prior to diagnosis I was already a very atypical coeliac. I had no obvious chronic health issues. I ate a varied diet including plenty of gluten and did not experience any digestive issues, weight issues or any other issues. I was fit and strong and vibrant. Unlike most coeliacs there was nothing prompting me to to seek medical treatment for. This was despite my enthusiastic consumption of plentiful gluten.
What issues do coeliacs often suffer from before diagnosis?
Was I consuming enough gluten?
Lots and lots of gluten? Yes . . . here comes evidence. I loved to prepare my own homemade wholewheat bread. Almost every weekend morning I would wake up to the gorgeous aroma of bread baked in my fancy Panasonic SD-253 bread maker. Fancy because at just the right point in the automated making process it had a little tray that could drop nuts, seeds, chopped fruits etc into the dough mix. Lovely! Thanks to the freshly milled wholewheat flour I sought out I had this wonderful bread full of uncommon flavour.
I often feel and claim that I do not miss bread at all but writing this right now I realise I do miss my homemade bread and have made myself just a little bit melancholy! The experience of waking to a home filled with the wonderful aroma and the promise of delicious bread with dollops of natural crunchy peanut butter on top . . . .
Not just bread. Before diagnosis I followed a vegan diet. One of my favourite meals was chunks of vegan protein mixed with quinoa and pesto and cashew nuts. Side note. I was eating quinoa regularly back in 2005. Not any quinoa either, tricolore quinoa! Well ahead of the trend! Anyhoo, what were those vegan protein chunks made from? Lots of gluten!
More gluten please! What else was I enjoying? ‘Healthy’ multi-grain muesli was a staple. Oh my goodness how I adored Dorset Cereals. I lived in the Netherlands and would carry Dorset Cereal boxes back over with me. On visits to the UK I delighted in finding new flavors. Dorset Cereals eventually started exporting to the Netherlands and that was wonderful too. All my work colleagues were introduced to it and loved it too. Whilst the UK had dozens of varieties we had four but one of those was the Nutty Granola so it was okay!
What else? Pita Breads stuffed with hummus and pine nuts. Veggie rich pasta dishes. Occasional scones. Suffice to say I was not gluten-deficient. Yet I had no chronic health issues. Or did I? I will return that after describing my amazing diagnosis!
My Lucky Diagnosis
In 2010 I suffered from a serious nerve injury known as Thoracic Outlet Syndrome, with a completely unknown mystery cause. In early 2011 I was recovering from this and returned to the UK after living abroad. Prompted by my recovery journey and a growing interest in pro-active improvement of my well-being I discussed with my brand new NHS GP a desire to run a blood panel to see if I had any obvious ‘problems’ to fix. I was thinking of micro-nutrient insufficiency or excesses in particular. Perhaps because of my recent nerve damage or perhaps because I was following a vegan diet my GP very helpfully agreed and ordered up a panel.
When the results of this came back this GP noticed elevated liver enzymes (ALT and AST) and asked if I had experienced a recent infection which could explain them? Negative. He then asked if anyone in my family had coeliac disease? My reply was a blank. What was coeliac disease? I had never heard of it.
On the back of the elevated liver enzymes with no other obvious cause alone my GP, this wonderful amazing GP, decided to order Coeliac Disease diagnosis blood tests as a follow up. These came back positive for gluten antibodies. The next step was an endoscopy and biopsy which confirmed intestinal damage to the villi that get flattened when coeliacs consume gluten and suffer auto-immune attacks. I was at Marsh Stage 3 out of 4. That means most of my villi were kinda depressed.
Then came a gluten-free diet and a six months later a repeat endoscopy and biopsy which confirmed recovery of the intestinal villi. There was no doubt, I was coeliac!
One simply AMAZING NHS GP!
Pause and reflect. That fantastic NHS GP of mine decided to get me tested for coeliac disease with barely any prompting. What did my GP have?
- Barely any data other than a single blood panel indicating an unexplained source of inflammation
- Very scarce patient history and no obvious indication of long term health issues
- No family history information and known family members with coeliac disease
- No prompting or demand from me
I am yet to meet anyone that has been quite so fortunate as I was. Anyone that has benefited as much as I have from such a sharp and proactive GP. Wow! I was so impressed by this guy that after I moved homes in London and ceased being eligible to attend the same practice I delayed as long as possible to delist myself and considered getting a P.O. Address in the old London borough so I could satisfy periodic mail based checks undertaken to confirm patients were still resident in the catchment area. I found a good new practice thankfully and dare to hope that other undiagnosed coeliacs are benefiting from the same amazing care!
What made me Coeliac?
When I had actually become coeliac? Up to 50% of the population has one of the coeliac genes HLA DQ2 or HLA DQ8 but most never develop the active disease. To progress, and admittedly ‘progress’ might not be quite the right word, from having a coeliac gene to having coeliac disease requires activation of the gene. This is the epigenetic ‘switch’ where epigenetics refers to the interaction between genes and the environment.
When had my epigenetic switch been flicked to activate my coeliac gene into an actual expression of the disease? No idea! I am often asked when and what activated my coeliac disease or coeliac disease generally. My understanding is that the range of potential epigenetic triggers are so wide and varied and poorly understood that there is no answer. Some people might be able to pin their own coeliac disease to the emergence of health issues. They might even be able to trace back to some form of potential trigger. Lacking any obvious health issues I can do no such thing. My reply is always simply “No idea!”
My Atypical Post-Diagnosis!
Not all Coeliacs enjoy recovery from health issues after beginning a gluten-free diet. Remember that most are coming into the gluten-free diet with some health issues including poor gut health and a compromised immune system. Some simply do not heal or heal very slowly. Most however do heal. Their intestinal villi recover and so long as they are eternally vigilant in avoiding the demon gluten what they are left with are the occasional episodes of being “glutened”.
What is it like to be glutened? I have no personal experience! I am what is known as a ‘silent coeliac’. I do not experience any obvious symptoms from consuming gluten and this remains true seven years into following a gluten-free diet after diagnosis. Most coeliacs will experience unpleasant but very telling symptoms after consuming gluten and this tells them, or at least provides a clue, what the source was. There is a good chance it was the sauce!
1% of the 1%?
If coeliacs are 1% of the population and therefore ‘special’ I am special among the special! Is it better to be a silent coeliac? Maybe not. It is nice not to get sick following a rare glutening episode but the flip-side is that I have no warning system. I could potentially eat a cross-contaminated product over and over or dine out at a place with poor controls, getting glutened again and again, without ever knowing. Fellow coeliacs that do get ill tend to regard my own rather odd immunity just as I do. Partly good, partly bad.
Continuing the oddness . . . . I have experienced absolutely no changes to my ongoing health. Following 18 months of a gluten-free diet a repeat intestinal biopsy found no evidence of villous atrophy. This means I was healed. Woohoo! Give me a wave little intestinal villi! Not so little any more!
Do I feel any different at all? Nope. I was in apparent good health before. I continue to be in apparent good health now. Mine not to reason (too much) why!
Was undiagnosed Coeliac Disease the Cause?
But wait. Maybe being an undiagnosed coeliac in fact did cause me chronic health issues. Prior to diagnosis I experience three episodes of nerve damage or “peripheral neuropathy”. There were two episodes of Bells Palsy which paralyses one half of the face and one episode of Thoracic Outlet Syndrome. After ruling out a viral cause for Bells Palsy neither of these conditions has any specific cause.
There is evidence that undiagnosed Coeliacs and Coeliacs experience increased episodes of peripheral neuropathy. Coeliac UK even cover this within a dedicated page for Neurological Conditions.
Post diagnosis I have not experienced any further peripheral neuropathy. I would like to believe this is because I have removed gluten, the demon gluten, from my diet! Correlation is not causation and one patient uncontrolled experiments are not at all reliable so I am not at all sure. But maybe, just maybe?
I LOVE being Coeliac!
Okay, not quite love. But there are things about it I do appreciate. I dedicated a post to describing at least five good things!
In addition to those becoming coeliac truly began my development into an incurable, confess potentially sometimes insufferable, foodie. Seven years on from diagnosis the amount of pleasure I gain from learning about, preparing and most important of all, eating food has never, ever been greater. Every mealtime is now an opportunity for sensory pleasure. As a lucky Londoner I have wonderful places to eat out where I feel safe, welcome and enjoy simply great food which also happens to be gluten-free. As an intrepid traveller I also get a buzz from successful research and planning of places I can visit and enjoy local cuisine. Next up, gluten free pizza in Rome! I also hear rumours of credible gluten free croissants in Spain, France and Italy . . .
Since becoming Coeliac I have run the Gluten Free London Meetup Club, began this blog, joined the Free From Food Awards judging team, been inspired and felt fortunate to meet many talented entrepreneurs delivering great gluten-free food and . . . . secret squirrel . . . am working right now on the hopeful preparation for my very own teeny artisan gluten-free food brand product launch! These things, which I adore, simply would not be part of my life had it not been for my Coeliac diagnosis.
The Coeliac Cure?
Would I take a pill that somehow cured me from coeliac disease? Despite all the above, probably yes. Well . . . it depends. The “probably yes” part is due to remaining at risk from cross-contamination and because of the restrictions, however confidently I can navigate them, on where I can go and what I can eat. The “it depends” part” is that if there is such a pill developed, and the possibility for a Coeliac “cure” of some type does exist, I would want to be confident that the positives were not undermined by negative side effects. Since it would likely take years for a new treatment to develop an evidence base that would reveal any long-term side effects I would very likely not be an early adopter.
More of the same?
Did you enjoy this personal story? Much of my blog is currently reviews of products and places I love. Other content is dedicated to wellbeing and fitness. I have not written many personal sharing pieces. Should I write more? It will take just one person to say yes. That could be you!