Celiac Disease – The Beginning

Celiac Disease – The Beginning

After months of trips to the doctors, blood  being taken that could fill up a dry lake, tests that would make anyone squirm, misdiagnosis, I finally have the answer as to why I’ve been so bloody ill. I have Celiac Disease. I thought I would write about my condition, for anyone that wants to join me on this gluten free journey , from the beginning.

 

 

What is Celiac Disease? 

Celiac Disease is a digestive and autoimmune disorder that results in damage to the lining of the small intestine when foods with gluten are eaten. The symptoms can vary from person to person but include, bloating, diarrhea, weightloss, iron deficiency anemia, seizures, nerve damage, growth problems and more. Having Celiac Disease leaves you susceptible to other health problems that include Osteoporosis, infertility, birth defects and cancer, so it is extremely important that a gluten free diet is followed seriously and strictly. There is no cure for anyone with Celiac Disease, so you will have to remain on a gluten free diet for the rest of you life; eating gluten at all can damage the intestine and restart the problem.

My Story

I first started noticing my body was changing last September, when I found certain foods were difficult to eat. I was also severely tired all the time, because I just couldn’t digest food, and therefore any kind of nutrients that I was putting into my body, just came straight out. (Apologies for the TMI!!) I had numerous trips to the doctors that resulted in me having a colonoscopy, which is the worst thing anyone has to go through by the way, and these results came back negative.

Obviously I was pleased with this, because I knew that certain major bowel conditions, like Inflammatory Bowel Disease, was ruled out. However, my symptoms were worsening and I knew that something was wrong. Trying to explain to people about it, is difficult. It’s not just a tummy ache, feeling tired and dashing to the toilet, it effects you mentally, emotionally and physically. I started to have anxiety before eating food because I just didn’t know how my body was going to react to it and it makes you on edge 24/7.

I went back to the Doctors because I knew something wasn’t right, only to be told to “take paracetamol.” My mouth dropped to the floor at how insensitive and just god dam stupid some GP’s are (don’t get me wrong, I love the NHS!) I decided to make another appointment and this time it was to see the Nurse. A week later, I went back to the doctors again, and the Nurse said that I haven’t been tested for Celiac Disease, so she took some bloods. I never even heard of Celiac Disease before, so I trawled the internet and asked Dr Google and after researching it started to all make sense.

I went to the Doctors to get my results, to be told that they have found really high levels of Celiac. The Doctor told me that the next step is to have an endoscopy, to see how much damage it has done to my intestines. He also told me that it is important to not change my lifestyle just yet and to carry on eating gluten until my endoscopy, which is really difficult, as I now know it isn’t helping me!

So that is my story, months of symptoms in a few paragraphs.

I’m still trying to get to grips with the whole thing and mentally preparing myself for when the lifestyle changes really start to take effect. Knowing that I will need to check the food labels on everything down to even making sure my make up is gluten free is going to be a challenge and really confusing, but I know it’s going to make me healthier and happier.

I’m probably going to do updates on living with Celiac Disease, and hopefully come up with some yummy recipes. Importantly, it will be good if this raises more awareness about it, as there are currently 600,000 people in the UK living with this condition.

I have a few weeks to prepare myself and to get as knowledgeable as I can about this disease, so if anyone has been diagnosed with it or if anyone has any tips, then please comment below.

Lots of Love,

Clox

 

knkn

 

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3 Comments

  1. March 12, 2016 / 9:07 pm

    Good luck on your diagnosis and adjustment! I was diagnosed with celiac when I was in college (age 20) and it is definitely a learning curve. My biggest piece of advice..when in doubt, don’t eat it!!!! Never be afraid to ask to talk to the head chef or call a company to clarify. Don’t ever let anyone belittle you or your condition. Watch out for cross contamination!! That is the biggest way I get glutened…just because something is labeled gluten free on a menu, it still can have traces of gluten! Asking questions..always ask questions. Please feel free to reach out to me with any questions you have! I would be happy to help as much as I can. It will get easier for you!
    Here are some tips from my blog about eating out with celiac that hopefully can help: http://glutenfreeandglittery.com/2016/01/31/tips-for-eating-out-with-celiac-disease/
    My diagnosis story: http://glutenfreeandglittery.com/2016/01/24/the-journey-behind-my-celiac-diagnosis/

    • March 12, 2016 / 9:41 pm

      Hi Paige,

      Thank you for the advice, it has helped! I will sure check out your blog for lots of tips and advice 🙂 it seems like you’ve managed it really well! X

  2. January 13, 2017 / 9:30 pm

    My name is Ron! I have a friend who has this disease an has had it since childhood. She lives her life sick all the time. How can anybody live with this disease an have meaningful relationships with others if your sick all the time. I wish they a real treatment an cure for this soon. They will. Living Sick is no way to live life all the time. She’s a good person an she deserves a better quality of life.

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