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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11 thoughts on “Living with Autoimmune diseases

  1. I really sympathise, I hope you start to feel better soon. Yes, stress does have an awful impact on the body. I hope you get to the bottom of your illness. I thought you started the SCD in the past, why didn’t you continue? It does take a long, long, time to see the results.

    • Vicky my diet is pretty much still SCD I occasionally have a little soft cheese , maple syrup and occasionally a starchy vegetable. I have been felling fantastic until this stressful few weeks so hopefully will be back to my healhy self soon. I have really noticed the difference my healthy diet has made.

  2. I really feel you would benefit from visiting a qualified BANT registered Nutritional Therapist.
    They would give more than three minutes of their time and can combine scientific fact with years of gained knowledge whilst avoiding the latest fads and fashions.
    I wish you all the best for the future.

  3. Hi, have you had your vitamin B12 levels checked? I’ve recently had very low levels and this was giving me brain fog, anaemia etc. it is very common with coeliac and after the booster injections, I really improved after about 4 weeks, it takes time for your RBC’s to replenish. Might need B12 injections for life. Hope you get some improvement soon.

      • All coeliacs a should have an annual blood test which would pick it up so you are entitled to ask you GP to do this, my GP nags me if I don’t request it! Perhaps have a google of Vit B12 deficiency and see if the symptoms fit. Either way, I would get your bloods checked

  4. Thank you so much for this site.I have just found it.
    I too have multiple food intolerance and a host of bizarre symptoms and health issue which I have had to self diagnose and treat with varied succes. I don’t know where you live but every doctor I have been to see since over the past 6 years instantly shuts down as I describe my issues and I am quietly assigned to the crazy list.
    Was so pleased to find recipes that I don’t have to adapt and so much info in one place
    Megan

    • I’m so pleased my blog is helpful. It is good to know that I am not alone with my many and varied issues and food intolerances . My Doctors are all the same too. Just think I’m nuts . I’m having a Skype chat with a IBD specialist on Monday hoping that will be helpful

  5. Hi I have multiple autoimmune conditions like you and also went GF before being tested so now have been told I have the newer ‘Non Celiac Gluten Intolerence’ label! I also get very ill when glutened. You MUST get B12 tested along with Vit D as most of us are deficient <25 needs officially supplementing but <75 should also. I'm close to Guildford and really love your Blog.

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