It has been 1 year since I started this blog and my coeliacs journey. There are certainly many useful tips and support from peer groups on Facebook, Coeliacs Society and certainly my network of doctors. I’m writing this post for those of you that may have similar experiences and need someone to relate to.
Please get in touch with me if you would like recommendations of my GP and specialists – without them I don’t know where I’d be.
There are so many small details that I will skip along the way because as I reflect, I think I have been having signs and symptoms for over 8 years.
The main incident (well it happened twice actually) was 3 years ago when I was in an airplane flying in the States. I jerked myself out of a deep sleep and ran to the toilet to vomit (I rarely vomit so this was very strange and stressful). On the way, I collapsed and passed out in the isle. The other time, I collapsed in the basin as I was vomiting. After the plane performed an emergency landing and I was taken to hospital where I stayed for 5 days. The docs found that I had a severe kidney infection and septicemia (blood poisoning from the infection). The next time, they ran every scan and test, found nothing and put me on my way.
After these 2 incidents (which are not normal, no matter what people tell you!) I saw my family GP and he was not phased in the slightest. After assuming that my kidney infection must had stemmed from a UTI (as I was early 20’s and a female – even though I had no symptoms of it) he did no more tests. These experiences have plagued me, always at the back of my mind, wondering what is was that caused it but never getting answers. Until now.
Infection after infection
I had been working full-time in a corporate marketing job which had huge hours, high stress and a fast paced environment. I also have a small fashion label which I love. After the 2nd plane incident in September 2014, I went downhill and pretty fast. From October to January 2015, I could not shake this ‘cold’. I kept getting eye infections, loosing my voice, shivers and shakes (wearing a wool jumper and beanie on a hot summers day). I tried a new doctor who said I had laryngitis and put me on antibiotics but nothing solved. Over New Years, I was a zombi and couldn’t even hug my boyfriend as I couldn’t breath. My lungs felt so compressed, everything I drank got caught in my throat and fits of coughs ensued. I went back to my family GP because of my ‘cold,’ lack of energy and random stabs in my stomach which I thought was my appendix & he diagnosed me with acid reflux and asthma. A week of trying medications (the strongest asthma puffer), I felt worse and stopped the inhaler. I was still trying to work full-time – sleeping in my car on my lunch break, getting home and collapsing in bed at 6.00pm. Every sleep was so deep, it was black and heavy but I never felt rested, I just felt like my body would shut down until my alarm went off in the morning.
Finally a decent doctor & diagnosis
I found a new doctor, a lady in Carlton who was so thorough. She spent over an hour with me on my first consultation and didn’t want me to leave as she had more to do! She said to me: “you know that you’re not right, and you’re the one that would know. So we’re going to get to the bottom of this.” These words were magic to my ears! After being ‘sick’ for 4.5 months with no answers, I knew we were going to get somewhere.
She ran every blood test under the sun and was certain that I had pneumonia and glandular fever (yes, my family doctor missed the fact that I had had pneumonia for 3 weeks!). I was so relieved with this diagnosis but it was still 4 months until I found out more.
My glandular wasn’t getting any better (the only cure is to rest and eat well) but my eye infections stopped, shakes were explained and pneumonia was gone. At this stage I also started seeing a doctor for chinese medicine and acupuncture which I found beneficial for energy but I wasn’t able to sustain it. I also took 1 month off work in order to rest and get my health on track (to which I never returned to the office).
In June 2015, I went to a hematologist and oncologist who had the same mentality as my doctor. He was supportive and knew that a young female shouldn’t be sitting in his office, unable to work or function. After checking off the list of random symptoms: history of eczema, pain in my knees, kidney infection, glandular fever, recent unhealthy and brittle hair and nails, eye issues, pain in my stomach, toilet issues he was pretty certain I had an autoimmune disease. Next time I saw him, he had figured out through gene testing that I had both the HLA DQ2 and HLA DQ8 genes. Most people with coeliac’s will just have one.
I was so relieved, I cried on the way home and called my Grandpa (to celebrate!). Finally, I had an answer. It explained everything, most importantly what happened on the plane and kidney infection – I had learned that these are all associated complications.
I’ve also since learned that EB Virus (gladular) can trigger auto-immune responses in those pre-dispositioned to the disease (with the genes).
A year on
It’s been a very difficult year but I’ve tried my hardest to stay positive. After 4 months off work, I began working again on small projects from home with the time that I was able – it might have been 3 hours at 7pm or 1 hour everyday but at least it was something. Just before Christmas, I was told that my job was still there for me – only it had changed and it required me to return to a full time roll in 1 month, which would encompass frequently flying around Australia.
For anyone that’s been in a similar position, you would understand that this was the furtherest thing from a possibility after nearly a year of illness. At this stage, I couldn’t walk more than 100 meters or cook myself dinner. So I was let go.
The funniest thing is that after so long and so much loneliness, isolation, loss of friends and constant lack of energy, loosing my job seemed to be just another thing to add to the ‘it’s been a crappy year’ list.
And I still had my own business which I could focus on if I had energy. I had also developed an obsession with Antiques Roadshow. I couldn’t handle much sound, light or stimulation and those English accents were just a delight! I’ve become quite the jewellery and vintage-Biba expert!
Another thing that started happening was my periods were becoming horrible/unbearable. I would be bed ridden, in agony for at least a day, my moods were erratic and my energy levels plummeted lower (if that was even possible). A couple of times I was curled up on the floor of the shower trying not to pass out from pain. It was really scary. My coeliacs would also worsen at this time too and if I was glutened, that was the end of it!
As I had so many more ‘things’ going on, it took me a while to mention these symptoms to my doctor but once I did she knew what was happening. I went and had an ultrasound and found out that I have endometriosis aswell. This has been linked closely to autoimmune diseases.
** Edit: I’ll be going in for surgery to get the endo under control and then hormone management after that. The doctor is confident that this will alievate a lot of my fatigue.
Gut & Medications
Gut wise, I’ve also started to not tolerate dairy. My friend is a nutritionist and has mentioned that I need calcium for bones (we have higher risk of osteoporosis) and so I have started having lactose-free yogurt and hard cheeses. I don’t have much soy in my diet as I’ve heard it reacts a lot for other people so I try to have almond milk when needed. I also focus on food as an energy source and try to have veggies, carb and meat in most meals and try to limit sugar. My next step is seeing a nutritionist and seeing what I can get out of that.
Recently, I’ve been taking Plaquenil for the auto-immune disease and I honestly think it is making a difference. I still have 6 weeks to go until it’s re-assessed and then maybe a few more months after that.
** Edit: Plaquenil was great, I have finished it now and have regressed slightly but it certainly boosted my energy when I was on it and post medication I am still a lot better than I was. I’ve also been taking Zinc, Magnesium, Vitamin D & C everyday which makes a world of difference!
I’m just so eager to return to a more energetic, fulfilling life. I can’t wait to go on a run or play tennis or DANCE! I used to go on a 40 min power-walk everyday, I miss that!
I’ve been supported by my amazing family which has helped me so much. Having the company of my sisters’ dog has meant so much more than I could ever explain. The little fur-ball is so full of love and always up for a cuddle! And my Nan has made an effort to call me weekly and send me snippets from magazines containing GF recipes! In fact, it’s made me appreciate the people in my life. One friends still calls me on her lunch break which means the world to me, it’s so nice having company and it’s been like that for this whole year, I always love her calls!
It took my body a while to stop being so sick after ingesting gluten. Now I feel like I can eat out with confidence, have a couple of drinks and still be able to function the next day. Mainly, I can be social once again. That’s one thing that I missed so much was seeing my friends and feeling apart of normal young person life. I’ve become a master of faking it (I might be smiling and having fun now, but I’ve been resting and saving energy for this all day). I’ve also become a master of resting! I’m also really, really good at listening to my body and knowing what it needs/when I need to rest.
I’m looking forward to the next stage on this journey, I feel the worst is over and I am starting to feel so much better than I was. Thank you for reading this, I was inspired by other blogs and forums – it’s nice to know you’re not alone with this and I hope my story has inspired some of you. Please feel free to leave comments with feedback, your experiences as well as new suggestions!
Some links that I’ve found helpful:
Dealing with loss of energy (Spoon Theory): http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Dealing with loosing friends: http://chroniccurve.tumblr.com/post/30781367059/chronic-illness-dwindling-friendships-finding-a
Gluten Dude for helpful tips: http://glutendude.com/
Beautiful Inspiration on Facebook: https://www.facebook.com/thispageisaboutwords/
Coeliac Disease Support Group, Victoria on Facebook: www.facebook.com/groups/1393735824187580/