My name is Laura and I am a mum of two. I currently live with my boyfriend, my youngest son and his two children. I have been diagnosed with Refractory Coeliac Disease which is is caused by a reaction of the immune system to gluten – a protein found in wheat, barley and rye. Basically if I eat anything with gluten in my immune system reacts by damaging the lining of my small intestine. For me what this also means that although I follow a strict gluten-free diet there is no easising in my symptoms.
Symptoms for anyone with coeliac disease can include persistent or unexplained gastrointestinal symptoms, such as nausea and vomiting; recurrent stomach pain, cramping or bloating; any combination of iron, vitamin B12 or folic acid deficiency; anaemia; tiredness; sudden or unexpected weight loss (but not in all cases); depression; liver abnormalities; repeated miscarriages.
I was diagnosed with Raynaud’s Phenomenon which is a condition that affects the blood supply to certain parts of the body – usually the fingers and toes. I will lose sensation in the affected fingers or toes and they will turn painfully white. I have also been told I have Clinical Anorexia basically I never feel hungry, eating is a struggle as I feel full after a few mouthfuls which is adding to the ever present unexplained weight-loss. I use meal trackers every day not only to remind me to eat but so that I can track that I am consuming enough. It is a permanent battle. I am also undergoing investigations for other autoimmune diseases as not all of the symptoms I am experiencing fit into the ‘typical’ coeliac boxes, at present I am waiting to see a Rheumatologist who I am hoping will be able to give me more answers. The additional symptoms include severe brain fog, body tremors, widespread pain, joint pain and swelling, muscle weakness to name just a few.
I have also been suffering with TMJ problems, facial numbness and chronic pain in my facial nerves for over six years, since a botched operation to remove some wisdom teeth. This can make everyday activities such as eating, talking, drinking and even kissing painful.
In addition to the above since my late teens I have suffered with periods of Dysthymia, sometimes referred to as mild, chronic depression, is less severe and has fewer symptoms than major depression.
Some of these problems have been going on for so long I don’t really know what I loved doing before.
One of the things I do miss which is related more to the jaw issues is long kisses, because one of the nerves injured is to my lower lip I can find passionately wild kisses incredibly painful. I will often have to pause and pull away every few moments so that I don’t break into tears due to the pain.
My working life has definitely been affected by my illnesses, this time three years ago I was working as a Doula and although the reasons I stopped doing that don’t directly relate to my illnesses there is no way I could do that work now. More recently I was working as a holistic therapist, life-coach and personal trainer, however in April 2018 I decided to close down my business as I had to finally admit defeat. It was soul-destroying to turn my back on 15+ yrs work but I had to accept that I could no longer serve my clients in the way that I wanted and they deserved. I have now gone back to my first love writing, starting a blog to share my wisdom and also my experiences of living with a chronic illness. I am also working (very slowly) on my first novel which is something I have dreamt of doing since childhood. This has proven really beneficial as I am truly able to listen to my body and its energy limits, on a good day I may work 4-6hrs with lots of breaks. On a bad one I may just about manage to check my social media.
The Dysthymia started when I was about 15, and the TMJ pain/issues I have had since June 2012. For some of the autoimmune diseases that are now being questioned I would guess that I have displayed symptoms of them from childhood. As even though I was a relatively healthy kid anything I did suffer with was always odd and hard to explain. However my symptoms definitely worsened in the September 2016 when I was withdrawing from Gabapentin, I reacted really badly to the drug when I was taking it, and after about 4wks of being on it was advised tos top taking it immediately. I didn’t find out till later that this drug should never be stopped cold turkey. Amongst all the withdrawal symptoms I experienced the vomiting, brain fog,the widespread pain, dizziness and body tremors are ones I still suffer with. I honestly do not know if stopping taking that medication is what triggered everything else but it is definitely when everything became more apparent.
The diagnosis of the TMJ issues was easy as it had a very definite cause. The Dysthymia was also picked up relatively quickly although how well it is understood has varied on GP’s. The diagnosis of the Coeliacs Disease took about 3 months from the point it was first queried. As previously mentioned I started to vomit multiple times daily from September 2016 and suffer with severe stomach cramps. To begin with I attributed this to the withdrawal from Gabapentin, when it continued I decided that it must be due to stress as I was going through some exceptionally tricky personal issues. In the January when the weight I had lost had hit almost 3 stone and I was being sick 12+ times per day, I figured I should go to the GP. During the GP’s examination I experienced horrific pain, I left the surgery and he said some paracetamol should take away the discomfort. This wasn’t discomfort it was agonising as if a hot knife was being stabbed through my stomach. I returned to the GP the following day and as I had already had my appendix removed and he couldn’t explain what was going on I was rushed to hospital. It turned out that what was causing the pain was a ruptured cyst on my ovary complicated by endometriosis adhesions. However while there I was under a number of different departments so while having treatment for the cyst I was having tests run by Gastroenterology and others. One of the tests was an endoscopy where a biopsy was taken and my stomach lining was indicative of Coeliacs disease. I was told then that it was highly likely I had the disease but to continue eating gluten until further tests were done. Those tests concluded in the April when I was officially diagnosed. Then in November 2017 I was told I had Refractory Coeliac Disease as my symptoms weren’t improving after following a gluten-free diet.
Before the Coeliac diagnosis I hadn’t really looked at the internet as I thought all my symptoms were fairly easy to explain. Since my diagnosis I have researched Coeliac Disease which is why I know that everything I am experiencing doesn’t fit the usual symptom remit of that disease. My GP has referred me to Rheumatology as he is querying whether I have something else other conditions that have been mentioned so far include the Systemic lupus erythematosus, Fibromyalgia, and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.With all of those i have researched what they are and what they could mean for me. I am however trying to stay away from Dr Google as the internet can be a terrifying place and I don’t have the time to be worrying.
A flare for me is an all over body experience where my symptoms all become noticeably worse all at once. I’ve been trying to write a blog post on pain for a while and can never seem to find the words. I experience pain most days with one thing or another however the pain during a flare is never ending, there is no relief (or at least none i have found so far). In some ways it does feel like that really awful all over body ache you get with flu, but that doesn’t really do it justice, it's almost as if my body is stuck in a vice which is being slowly tightened, the pain building and worsening. This could be because of lack of sleep, or the other symptoms making it worse. Sometimes it builds and continues to build until almost with no explanation it is significantly better. Other times it builds so far and then just sits there for a days on end before painstakingly slowly beginning to ease.
I am just coming through the other side of a flare and this one lasted longer than usual. Previous symptom flares have lasted between 4-6days, this one was a good 10 days and although I feel that I am through the other side of it, I am still struggling to get my pain under control and I am more tiring quicker. Where I may normally have 2 or 3 days a week where I’m sick once or twice a day, during a flare I am back to being sick 6+ times every day. Where most days my pain is limited to my face/jaw, stomach cramps and mainly my right wrist and hand, during a flare it is virtually impossible to tell which part of my body doesn’t hurt. It feels similar to that feeling you get when you have flu and your body feels like its been hit by a 10-tonne truck and nothing really eases it, tramadol may take the pain from an 8 to a 6 but it is still there. During a flare I get uncontrollable body tremors, sometimes it will just effect either my lower or upper body but mainly they are whole body tremors and I can’t do anything safely except lay down. When not flaring it is normally limited to just a leg or a hand very occasionally and subsides after a couple of minutes, during a flare these tremors can last up to an hour. My appetite which is normally non-existent disappears altogether and that with the vomiting makes it hard for me to consume anything. I feel permanently faint whether that is a symptom of its own or due to the lack of food who knows, but during a flare I tend to have a low heart rate and low BP. My hair loss also gets significantly worse just before and during a flare.
My days consist of getting out of bed, getting dressed and then crashing on the sofa, if I’m lucky I may be able to make it to the loo on my own. They are usually just a drug-induced, shaky, pain-filled haze of existence.
It’s hard to really explain everything that is happening within a flare as it sounds so crazy even to me, I struggle to make sense of it all and remember everything that occurs.
Until the last flare I had no real idea as to what was triggering me, however following my most recent one I think it was triggered by a cold. Or at least the start of a cold. I had the beginning of a sore throat that after about a day went away. I was ok for a couple of days and then BOOM me and the sofa were getting closely acquainted for the next 10 days. I’m not sure if this was the trigger but it seems plausible, tracking symptoms, flares and possible triggers is a job on its own.
With very little income at the moment I am struggling to buy supplements however I do take a multivitamin daily, no idea if it is really helping or not but I feel it's worth a shot. I have also been prescribed a vitamin D supplement by the GP as I have low Vit D levels.
I recently started taking Citalopram as my depression is noticeably worse at the moment, it is still to early to tell whether its helping or not. For pain I have tried Paracetamol, Ibuprofen (which i’m no longer allowed due to damage caused to my stomach lining by the Coeliacs disease), and Tramadol. I do get some relief form the Tramadol but it doesn’t take the pain away. I also react to it quite severely and end up having to take Piriton to manage the side-effects.
Where Coeliacs Disease is concerned at least my biggest tip would be to cook from scratch, its far cheaper than buying gluten-free foods and more nutritious.
Positively it has made me reassess my career, I always dreamed of working in a creative field and being a writer. Life, children, financial commitments meant that although I was working in a field I loved I had given up on that dream. This illness has robbed me of my business but in doing so has allowed me to go back to my first passion writing.
Negatively I struggle to be the Mum that I want to be, most days I can hide how shit I feel from the kids as I hate seeing them worry about me. I feel incredibly guilty everytime I have to parent from the sofa.It has put a strain on my relationship as we both worry about what the future could hold. The worst impact is that it has robbed me of my business, one that I worked 15 yrs to build, one that I had just invest £3k into additional training before I realised I just couldn’t do it anymore.
My illnesses have stopped me from spontaneously travelling to see friends. I feel so exhausted all the time that the idea of travelling on a train and that sensory overload is to much.
As I mentioned above it has led me back to writing again both non-fiction on my blog as I document my experiences not only with this illness but also on other subjects I am passionate about. And also with my first novel which is a super slow work in process, mainly because i have more ideas than time to write.
I have also recently started working on a Podcast which I am will raise awareness of chronic illnesses and the vast array of them that exist, as well as inspiring people that we are all more than our illness.
At the moment my hope for the future is to get through the rest of this diagnosis phase as quickly as possible. I feel that once I know what is wrong then even if it isn’t fixable I will at least know what I am dealing with. Not knowing is one of the hardest things for me.
- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -