My Story

I was diagnosed with coeliac disease in 2009 and have been living gluten free ever since. Looking back I think I’ve always had a problem with food intollerances. I can remember as small girl in infant school, being embarrassed in PE lessons because I had to wear a vest showing off my big round bloated stomach, when all the other little girls had flat ones. In junior  school I still had the bloated stomach, blotches on my legs and arms, headaches and completely lacked any energy. I never felt like accepting invitations to go round to friends and play and when I did I just felt tired and ill and had to go home.

In my teens I suffered with eczema, severe headaches, bloating and fatigue. I was constantly paranoid about my giant stomach, luckily back in the 90’s  it was fashionable to wear baggy jeans and oversized shirts, so I got away with it most of the time. I became used to feeling constantly tired and lacking in energy.

It was only in my early 30s after the breakdown of my first marriage and losing my job, that my health seemed to get even worse. I felt nauseous after eating, my nails were flaking off, my hair was falling out, I had aching knees, itchy sore rashes all over my chest, back, arms and legs and I had reached a whole new level of tiredness. I finally decided something was wrong. I think this was the point that it manifested itself as full blown coeliac disease.

I started to keep a diary of all my symptoms and how I was feeling to try and make some sense in my own head of what was going on and so I could explain it to a doctor. My doctor was unsure of what was wrong and treated each symptom separately. My skin rash was eczema or psoriasis – there was a cream for that, My aching knees needed the help of a Physiotherapist, my stomach pain and bloating was IBS or gall stones and my tiredness was anemia – iron tablets would soon sort that out. I had blood test after blood test. Not once did my doctor look at the bigger picture and what all these symptoms combined could point to.

The creams didn’t work on my skin, I continued with my aching knees and massive bloated stomach and nausea until one day I had enough. After doing some research, it seemed to me I had a wheat allergy or coeliac disease, I cut out wheat from my diet and immediately started to feel better. I logged my progress in my diary which I had continued to keep. At this stage I had no real idea about coeliac disease, gluten containg foods, cross contamination or hidden gluten, so although I felt better, I still wasn’t ‘right’.

One night I was getting ready for a night out with my friends, I couldn’t fit my giant bloated stomach into any of my dresses comfortably, I looked 7 months pregnant. The only thing I had eaten all day was a bowl of vegetable soup (it contained barley). I couldn’t understand why I looked and felt like this. Something was wrong, this wasn’t normal.

I made yet another appointment with at the doctors and this time saw a different doctor. Before I had chance to say anything to him, he said “Ah I assume you are here about the results of your last blood test? Your white blood cell count is high and this combined with your other symptoms could indicate coeliac disease. I am referring you to the hospital to see a specialist  for an endoscopy, this should prove it for certain”.

At that point I felt a massive weight had been lifted, finally there seemed to be a reason behind why I was feeling so ill. I was and still am so grateful to that doctor for helping me take the first steps to my diagnosis. I went for my endoscopy,which was one of the most unpleasant experiences I’ve been through. I had to eat 1-2 slices of bread or a significant amount of gluten containing food every day for six weeks before the test. This made me feel really ill as you can imagine, and felt like a step backwards after cutting it out.

The procedure was pretty traumatic, I opted not to have the anesthetic, as I didn’t want to spend hours in hospital. I didn’t realise  what was involved and when the doctor started to poke the tube down the back of my throat my gag reflex kicked in. I soon realised I couldn’t go through with it, but two nurses held down my arms as I struggled to pull it back out, the tube continued to be forced down my throat and I continued to fight it, wriggling and kicking, a third nurse joined in to restrain me. Tears rolled down my cheeks, I felt like I was choking.When it was over and I came out, the people in waiting room looked at my mascara streaked face in horror. A couple of weeks later I the results came back positive for coeliac disease. The day I got my results I started my journey as a coeliac on a gluten free diet, or so I thought.

I met my second husband and his 2 children about 18 months later and we moved into a house together. My husband hadn’t really heard of coeliac disease and didn’t understand it. He put up with my diet as long as it didn’t affect him and the kids and they could still have the food they were used to.

I prepared ‘normal’ gluten meals for them and I soon started to feel really ill. I lost lots of weight, my skin rashes flared up again and generally I felt really sick. I sat down with my husband and educated him. We both came to the conclusion that the only way I could stay well was to have no gluten in our home. So when we moved to a new house we both agreed to no gluten in the house. 5 years later we have stuck to this. I have upped my cooking game and we now enjoy delicious home cooked meals that are totally safe. I know that if there’s a crumb lying around it’s a safe crumb and I don’t live in fear of food in my own house anymore.

All was good but I still had phases of feeling unwell, tired, bloated, sick and every so often my skin would flare up with those nasty itchy rashes again. I know my home is safe, I prepare my own food for work, we very rarely eat out, I just couldn’t work it out. My body was trying to tell me it was still getting affected by something but I didn’t know what. I made an appointment at the doctors (different doctors due to the move) and explained all of this to him, I thought it maybe dairy intolerance and could I be referred back to the Gastroenterologist at the hospital for tests? He refused and told me it was IBS and  I should keep a food diary and I would soon figure it out. So here I am with another doctor dismissing my problems and not helping me.

I know that my body still isn’t happy with some of the foods I have been eating and that is why I’m not feeling any better and still suffering with the same symptoms. It is obvious the only person that can help me is me, so that’s just what i’m doing. Many people with coeliac disease struggle to digest gluten and I have figured out through trail and error that I can’t eat dairy. My journey to working out which other foods are harmful to me is only just beginning.

During my research I have come across Dr David J Clark. He explains how following a gluten free diet is not enough. The reason lots of people are still not getting well when eating gluten free is because they are consuming foods that mimic gluten. These are known as gluten cross reaction foods. Their make up is so similar to gluten that the body of someone with coeliac disease can’t tell the difference. Therefore when eaten the body reacts in exactly the same way as it would to gluten.

He suggests cutting out these 6 food items

  • Dairy
  • Yeast
  • Corn
  • Oats
  • Millet
  • Rice

As I know I get sick from dairy, it makes sense to me that the other foods on the list could be the reason I’m still getting the same symptoms as when I consume gluten.

You can see Dr David J Clarke’s you tube channel here. I strongly recommend you watch the videos explaining why people with coeliac diseas or gluten sensitivity shouldn’t eat the foods in the list above.

There is also information I have come across that suggests that cutting out the foods below, could be beneficial as they can  be hard to digest and cause a reaction for anyone with an auto immune disease.

  • Sugar
  • Nightshades – Potatoes, Tomatoes, Peppers, Aubergines
  • Egg
  • Tapioca
  • Soy
  • Rye
  • Seasame
  • Sorgum
  • Teff
  • Amaranth
  • Quinoa

The human digestive system has stayed the same since we were cave men. Most of the foods on the lists above are not natural food products in a humans diet. We have cultivated and interbred crops to create modern day varieties our bodies struggle to digest. Depending on your genetic make up these foods are seen as foreign invaders and the body attacks them and itself.

The Auto Immune Protocol (AIP) diet is very similar. It aims to eliminate all foods that the human body can find hard to digest, giving the body time to repair itself fully. these include the items in the list above, but also

  • Coffee
  • Tea
  • Chocolate
  • Processed foods
  • Nuts
  • Seeds
  • Tofu
  • Legumes
  • Alcohol

Then it suggests re introducing certain items if you wish to see if they cause a reaction. This is a more personal approach, so you can really figure out as an individual what you are reacting to. For more information and a basic guide to the AIP diet go here

I have decided to cut out the foods on all the lists. This is a personal choice based on information I have read and personal experience. After 12 months and I am going to re-introduce an item at a time off the second and third list to see if I react to it. I believe as coeliac I shouldn’t be eating any of the items off the first list and so will not reintroduce any of these. This for me, to see if I can eat myself well I am interested to see what happens. I hope this journey will be helpful to others who maybe going through a similar thing.

I am determined to make myself well again and believe taking full control of my diet and educating myself and others to the benefits of eating the right foods for your body.