Living with Autoimmune diseases

If you have been reading my blog for a while or following me on Twitter you will know that I live gluten free, and as much as possible grain free and refined sugar free. My diet is like this due to the fact that I have not one, but three autoimmune diseases. Crohns disease ( A long term condition that causes inflammation of the lining of the digestive system ) which is an Inflammatory bowel disease and Litchen Sclerosus LS ( a skin disorder ) both diagnosed a couple of years ago and Coeliac disease ( causes inflammation of the lining of the small intestine when gluten is ingested ) while not officially diagnosed I have been told by my Gastro specialist that I have classic coeliac history and due to the fact that I have been gluten free for about 7 years now and my reaction to glutening is so extreme he would not suggest going back to eating gluten . I have had a endoscopy recently and all is looking fine which is good to know. The many years of eating gluten has left me with what some describe as a leaky gut which means my body struggles to absorb nutrients but also absorbs and is easily susceptible to inflamation both in the stomach and bowels but also in joints. Difficulty in walking up stairs etc when having a flare up.

After a couple of weeks recently which were very stressful I am now faced with the after shock . This is something that I don’t feel I have experienced in quite this way before. I think new knowledge means I am more aware of the symptoms these days. Aching painful joints primarily for me, knees and wrists. Lack of energy and fatigue. Brain fog to a worrying degree especially my short term memory. The one thing this time is that I haven’t experienced stomach gut problems to the level I normally do, For this I am very grateful for. I’m sure my diet has been a contributing factor. Avoiding grains, refined sugar and vegetable oil and processed foods seems to have made a huge difference. I also have a high good fat diet like coconut oil and butter and low carbohydrates especially avoiding white potatoes and white rice.

 

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I’ve not been in such a stressful place for many years and I have been shocked as to just quite how it has played havoc with symptoms of my autoimmune diseases. I am determined to get myself back on track quickly. Like most people I feel guilty if I sit down and relax and am always finding things to do. I think I am going to have to learn to take time for myself and give my body time to heal.

As yet I have not found a general practitioner, gastro specialist or specialist nurse who will give me more than 3 minutes of their time. It appears, and I have been told I have to do my own home work on the subject. I have up to now refused medication for my gut as I am so far able to control it with a very healthy diet.

My Family are very supportive and understanding our family home is 100% gluten free and eating out choices are far more reduced when eating out together due to being gluten free and my multitude of food intolerances. It also effects holiday choices, I would love to be able to be far more adventurous than I am.

My faith gives me enormous strength  and Church family are very supportive. I know the prayer support I receive helps a great deal.

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I have much to be very grateful for. A loving husband, family and friends and a strong determination to keep on top of these health issues. I Will do whatever it takes to stay well and happy.

It isn’t easy to share such personal information, but I hope it helps others in the same position. Often things you read about Autoimmune diseases on the internet are frightening and worrying.  I would be very interested to hear from others with multiple autoimmune disease and how you cope and any advice you may have ?

Eat well , keep healthy, focus on the positive things in your life !

 

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One year on, living with Crohns disease

A year ago I was preparing for my evening procedures at Ashtead hospital . Finally I had a Gastro specialist who had sent me for a endoscopy and a colonoscopy after over 30 years of various symptoms including bloating, weight loss, anaemia, joint pain, tiredness, brain fog, sickness, extreme stomach pain. Until now I had never been taken seriously by any doctor ( and I had seen plenty over the years ) About 6 years ago I started to suspect I had a wheat intolerance, after reading more it appeared I could have Coeliac disease I was extremely intolerant to gluten even the tiniest crumb which could set my symptoms off and I could continue to be unwell for days and weeks after a glutening episode. My Gastro specialist agreed that it sounded like I had classic Coeliac history and arranged for me to have the tests as a blood test could now not be used due to the lack of gluten in my diet for so long.

The preparation itself was not a nice experience but I was eager to finally get a diagnoses. All went well and I was home by late evening. I was told that Crohns disease was suspected but a follow up visit to Gatwick hospital was needed for an MRI scan. I used the weeks that followed to read everything I could on healing a leaky gut and inflamed bowels. I started by cutting all grains from my diet and removing cows milk. This wasn’t always possible but I made every effort to keep to this diet.

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I looked at FODMAP and Specific carbohydrate diet and saw from fellow bloggers how their health had improved by following these.

I have now been following as much as possible the Specific carbohydrate diet particularly focusing on no grains, no cows milk and very low sugar , no refined sugar. I am thrilled to say that I have had a dramatic improvement in my health especially the lack of bloating and my only problems have come if I have eaten out and been glutened. Even these symptoms are far less than they used to be. My stomach has never been so flat . The only area where there has been little or no improvement is with anaemia. I still suffer badly and have to take very strong iron tablets from time to time. I imagine this is because it takes many years for our bodies to heal after so many years of eating the wrong food causing a leaky gut. Due to my autoimmune diseases and leaky gut I am also intolerant to yeast, onion, garlic and more recently I haven’t been able to tolerate paprika.

I was finally sent for an MRI scan and this confirmed Crohns disease an autoimmune disease. I have had no final confirmation on whether I have Coeliac disease as my endoscopy didn’t show up any damage. After eating gluten free for many years now I was thrilled that I had no noticeable damage hopefully due to my new diet . But because of the violent symptoms I display after having gluten/ cross contamination with gluten, I won’t be adding it back to my diet anytime soon.

I have had to take this SCD in stages as its really tough. I am now trying to remove white potatoes and sweet potato from my diet, not easy ! Rice was also incredibly difficult to live without. I am not a huge fan of cauliflower which is the go to alternative. I’m just taking it a week at a time. I am so thankful for ground almonds  and coconut flour and for unsweetend almond milk. I have also stopped drinking any alcohol except the very odd special occasion. It all sounds like a very depressing way to live but when the only other option is medication, to me its a no brainer. I hate taking anything even paracetomol, Every time I visit my Gastro specialist he offers me medication. Which seems strange to me as I have no symptoms! He is definitely struggling to believe that my diet is helping me but I am determined to show him that for someone like me with low level symptoms of Crohns disease It is possible to control and possibly heal myself using healthy fresh food. Our home is completely gluten free and since we made this change I have not been ill eating at home. Even the Dog eats grain free, and she has never looked healthier!

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I have also found that eating high healthy fat ( coconut oil, avocado,  butter, cheese, etc ) and low carbohydrates keeps me feeling full for longer. Breakfast every day always consists of 2 free range eggs with either bacon , salmon or I make a veggie omelette using spinach etc. Grain free pancakes make a nice alternative too, or just nuts granola.

Lunch tends to be homemade soup, salads with cheese, ham, chicken etc or a grain free wrap with delicious fillings, and a piece of whole fruit.

Evening meal is good quality local meat or fish/seafood  with lots of different veggies and I tend to now use butternut squash instead of potato.

I have the odd cube of very dark gluten free chocolate or some cubes of cheese, fruit or nuts to snack on.

I tend to drink still or sparkling water and the occasional cup of tea with unsweetend almond milk or camomile tea.

If you are interested in helping your symptoms check out @anaussiewithcrohns and @deliciouslyella both have used a healthy diet to improve their health.

My hope is that one day in the future I may be able to reintroduce some foods back into my diet , I am being realistic and know after over 30 years of symptoms this probably won’t be any time soon.

My family have been my biggest supporters. Living gluten free at home and eating out only at places where Mum can eat safely is a big ask. I am very fortunate that my family are grown up as I can see how difficult this could be with young children. My faith has also kept me strong and knowing that I am not dealing with this disease alone is a great comfort to me.

 

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This is still very much a learning journey. Baking is now far more challenging, every time I successfully make a grain free alternative to a favourite bake I am thrilled. I hope to continue to share these recipes with you. More recipe books are appearing on the shelves of book shops with grain free, low sugar recipes and I will continue to seek out the best to share with you.

Fellow tweeter @gfcuppatea recently said to me ” nothing tastes as good as Good Health”  and this is so very true I’m going to try and remember this when I’m craving something yummy I know will affect my health adversely.

If you are travelling on the same autoimmune disease journey as me  I would love to hear from you. Have you improved your health by changing your diet?

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