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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From IBS to IBD my story on World IBD day

My story is definitely a story of hope, hope for a healthy future symptom free. A bold statement I know, but a positive attitude is a very good place to start.

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On April 9th this year I went to see my Gastro specialist to receive the results of my endoscopy, colonoscopy and MRI . The results were not what I had expected, rather than Coeliac Disease, he announced that I had Crohns disease an Inflammatory Bowel Disease, He reeled off the medication I would be offered and sent me away to do my own ‘homework’. With a second appointment booked for this August.

I was in a state of shock. All my symptoms pointed to Coeliac disease in fact I had most symptoms on the list and had removed gluten from my diet about 4 years ago. Since then I still had occasional stomach cramps , nausea brain fog , anaemia etc due to new intolerances that had started appearing . Firstly yeast ( vinegar wine etc ) then onions and recently garlic. All due, I would say to having a Leaky Gut.

Let me take you back to the beginning 1978, I moved with my family to Hastings. It meant I had to move senior school after just making friends and settling into the school, and live in a very different part of the country. In fact the lovely county of East Sussex England by the seaside. Sadly for me a nervous shy young girl this was an incredibly stressful experience and from the day we moved I started to have symptoms a loss of appetite , stomach cramps and an excessive fatigue. My senior school years were very tough, I now know why!  Poor concentration and feeling unwell and very tired led to me not achieving the results I should have done. A diet full of gluten, sugar etc like every other teenager in the late 70’s early 80’s . Obviously not helping the situation, but hindsight is a great thing isn’t it.

My weight plummeted, weighing around 6 stone my parents took me to a doctor who brushed it off saying she’s a fussy eater let her have what she fancies. Which of course was lots and lots of gluten, sometimes 6 slices of white processed bread at a time. Due to my low weight , looking back I definitely looked anorexic ( and for I while recently wondered if that had been what it was ) I did not start my periods to the age of 19 making me very different from all my female peer group. I continued to be quiet and shy and family became more and more concerned about me. I had, by this time become very interested in healthy food , baking and cooking and had gone to college to study catering. After a year on this course my symptoms continued to worsen making the physical part of my course impossible.

I left and started working in a Children’s Nursery, became qualified, loved the job and started eating better. Met and married my husband Tim and had two beautiful healthy sons. Still continuing to have symptoms which became worse when I started to drink alcohol at the age of about 28. Visited doctors many times always given the diagnoses of *IBS  ( irritable bowel syndrome ) told to eat more roughage, whole grain bread etc and sent home with peppermint capsules. My symptoms were definitely at there worse. I remember begging my husband to finish me off ( a little dramatic I know ) but the pain was unbearable. At that point we should of gone to A & E but we never did, we just had no idea what to do.

This continued until about 7 years ago when I read something about a wheat free diet and how it helped people with my symptoms , I tried this but with no real improvement. Then a few years back I started tweeting and in a short space time heard about a gluten free diet and I started to follow that. Very quickly I was having less symptoms and the more knowledge I gained the less symptoms I began to have. Less tiredness more energy less stomach cramps and nausea. I had never felt better .

Keen to pass on what I had learnt I started a WordPress blog Fabulously Free From. Where I write about what I bake gluten free and other free from recipes etc. In doing so I have learnt a vast amount about Coeliac disease, it was like a light bulb going on . Everything I read sounded like me I recognised my symptoms in many of the Coeliac tweeter on Twitter and things Coeliac bloggers were writing.

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Unfortunately for me, by this time I had been living gluten free for about 4 years and apart from occasionally being ‘glutened’ from cross contamination, gluten was a distant memory.

I went back to the GP armed with a greater knowledge and was told they would do a Coeliac blood test. Sadly I knew this would come back negative but the doctor was adamant . As expected it came back negative. I booked to see a different doctor and to my great joy he took on board everything I said and referred me to a local Gastro specialist at our local hospital. It was a huge step forward!

After meeting with the specialist I was booked in for colonoscopy and endoscopy on the same evening. I have to admit I was incredible nervous at the prospect of going into hospital. Apart from having my 2 boys I had never spent a day in hospital. My Church family were an incredible support to me at this time and I most definitely felt the results of there prayerful support. I walked in that day feeling calm and almost excited about the prospect of getting to the bottom of my problems, no pun intended.

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Me, straight after the procedures

The evening went as well as it could have done but came home really none the wiser. I was told that my Gastro wanted to do an MRI as the procedures were not conclusive.  The day came for my MRI to be performed at a local private hospital. This was one of the worst experiences I have ever had. I was left for a very long time in a thin gown in a corridor with nothing on my feet. I became very cold very quickly and by the time I went for the MRI I was shivering uncontrollable. Anyway many blankets later and a 45 min scan (which I found fine) I was sent home.

During this last year I have done even more research into fixing my insides using healhy eating and reducing stress. After almost 30 in childcare I reluctantly gave in my letter of resignation to my place of work. A wonderful children’s nursery where I had worked on and off for about 19 years , but unfortunately full of gluten in many forms ( snack time, play dough, packed lunches, staff biscuits )

I also started following the Specific carbohydrate diet, removing all alcohol and all refined sugar and most fructose. I had started to read many accounts of people with stomach and bowel disorders ranging from Inflammatory bowel disease to Coeliac Disease and other autoimmune disease. I immediately felt the benefits No bloating what so ever and no other symptoms, this was exciting stuff!

I’m not saying I found this easy but because I am very anti drugs I wanted to do everything in my power to give myself a fighting chance , along with the power of prayer I believe I have seen a vast improvement in my health.

This brings me back to April 9th this year, My results showed no sign of Coeliac disease, but the Gastro specialist agreed that if I had been free of gluten for 4 years then it wouldn’t show up and the positive thing was that there was no visible signs when doing the endoscopy. This was good news being gluten free was obviously helping. The results from the MRI and colonoscopy showed some damage in my bowel, My husband came with me to take notes as I knew I wouldn’t take information in. He wrote down terminal ileitis and sub set crohns terminal ilium . Whatever that means!  We were not even given correct spelling or even a simple leaflet about the disease. I hope this is not most people’s experience.

I was really disappointed and a little shocked to hear this. Felt a little like I was free falling and at this point would have liked to have spoken to a specialist nurse who would of had time to explain things.

I went home and couldn’t bring myself to look up Crohns disease. My Cousin and Uncle had Ulcerative colitis ( which I had mentioned to my GP a few years ago ) and have had a very tough time, quite honestly I was terrified. Then a wise Twitter friend reminded me that I had only been given a new label and that nothing had changed and actually I was beginning to manage it well and there was no reason why this shouldn’t continue. I really needed to hear that!

I still cant bring myself to do much research as everything I find sounds nothing like me. I have never experienced any bowel problems, which seem to be a big issue with Crohns disease. Maybe I am fortunate to have a mild case and hence that could be why. Or maybe having Coeliac disease for so many years I have now got a Leaky Gut and Crohns symptoms. I’m no doctor so I haven’t a clue.

What I do know is that I have never felt better. Bags of energy, no bloating, constant healthy weight, no cramps or nausea and I never feel hungry. The Specific carbohydrate diet has been a revelation going grain free is not easy and leaving out cows milk was tough. I also make sure my diet is not only low carb but high fat ( good fats including coconut oil and cheese etc ) But there are so many positives and so much delicious food I can still eat I am going to continue with it and see what happens next.

 

I hope this has been of some help to others with similar symptoms .

Here’s to a healthy future, eating well and enjoying life to its fullest.

 

For more information @crohnscolitisuk

 

Specific carbohydrate diet info

A grain free, sugar free and gluten free diet  Free from many complex carbohydrates like potatoes.

The diet was first developed by a New York physician Dr Stanley Haas

Books to read – Breaking the vicious cycle: intestinal health through diet

cooking for Specific carbohydrate diet by Erica Kerwien

Twitter

@comfybelly

@scdlifestyle

@scdrevolution

SCD Food list 

*IBS  Irritable bowel syndrome is Not Inflammatory bowel disease  – It is a common condition of the digestive system

 

Do you feel uncomfortable and bloated or have other unexplained symptoms after eating Gluten?

Today sees the start of Coeliac awareness week. 1 in 100 people have Coeliac disease , but only about 15% have been properly diagnosed. That are a lot of people with unexplained symptoms. If you or a member of your family is one of them, make an appointment today!

Now this is a subject I am passionate about as I have many of the symptoms of the disease, but cannot be tested properly as I have not eaten gluten for 5 years. My Gastro specialist said I had a ‘classic Coeliac history’, But he and I were not happy for me to attempt to put gluten back in my diet as my symptoms were so severe. I am still anaemic and on iron tablets and am slightly under weight. When I am ‘glutened’ the weight just falls off me.

I remember having symptoms from the age of about 12 when we moved home to a new area and I had to change schools etc. It was a very stressful time for me.

When I do accidentally eat gluten through cross contamination I become very ill and the symptoms last for many weeks. I will probably never have a definite diagnoses. But I will now always follow a gluten free diet.

I recently however have been diagnosed with Crohns disease an inflammatory bowel disease ( after an endoscopy and colonoscopy ) but recognise less of the symptoms of this disease in me.

From what I understand Gluten comes from the Latin Gluten “glue”  a mixture of two proteins gliadin and glutenin found in cereal grains wheat inc spelt also barley and rye, and oats through cross contamination.

Some Coeliacs are intolerant to all oats even gluten free oats.

Gluten is found in flour, bread, pastry, biscuits,cakes, cereals, many pre prepared meals and hidden in so many other things including drinks. Always check labels.

I feel very strongly that if you are suffering from any of the following symptoms ( list taken from Coeliac UK website ) Don’t take Gluten out of your diet  make an appointment with your GP , to rule out Coeliac disease

Severe or occasional diarrhoea, bloating, recurrent stomach pains, cramping, constipation, sickness, loss of appetite, weight loss, nausea, Excessive wind

Tiredness and or head aches,  Brain fog ( not feeling sharp )

Tooth enamel problems

Joint and or bone pain

Skin rash (dermatitis herpetiformis )

Anaemia

Mouth ulcers

Repeated miscarriages

Nerve problems such as ataxia ( poor muscle coordination ) and neuropathy ( numbness and tingling in hands and feet )

Iron, vitamin B12 or Folic acid deficiency

Hair loss

Infertility

Depression, Anxiety, Mood swings

Liver abnormalities

Amennorrhoea ( lack of periods in women  )

Coeliac Disease is a life long autoimmune disease causing damage to the lining of the small intestine. Causing a range of mild to severe symptoms.

 

From my own experience many years ago I had severe tiredness, brain fog, weight loss, anaemia, stomach cramps, nausea, joint pain and later fertility problems I was told I had IBS and given no advice.

Removing Gluten and other food intolerances from my diet has made an enormous difference to my health.

These days you should be given a simple blood test by your GP to check for antibodies, these can indicate Coeliac disease Do not remove Gluten from your diet

You will then be referred to a Gastroenterologist for a gut biopsy Continue to eat Gluten

For me, this process took 30 years! Fortunately things have moved on and GP’s are far more aware of symptoms.

I found that keeping a food, drink and symptoms diary helped me to find out what was causing my problems. It also could be useful to show your Doctor.

It would also be good for Coeliacs and those with Inflammatory bowel disease who continue to have some symptoms after gluten is removed. I for example am intolerant to yeast ( vinegar, wine ) onions , garlic and  paprika. These now give me similar symptoms.

Here is a printable food and symptoms sheet for you to print off

Remember to write everything done on your sheet including snacks and drinks

 

Click on link and print PDF

food and symptoms diary <

 

More information about Coeliac disease twitter @coeliac_uk

Coeliac UK

Website coeliac.org.uk

I also found out a lot of information about the disease following fellow Coeliacs on Twitter

follow me @nels3 Gluten free Helen

I am currently finding out more about ‘Leaky Gut’ Intestinal permeability Which seems to be linked with Coeliac disease , Crohns disease, Colitis etc

I try to avoid all grains and refined sugar to help heal my gut as well as taking good bacteria.

Follow Specific carbohydrate diet – @scdlifestyle

Follow Dr Josh Axe on Facebook 

draxe.com website

 

 

 

In search of the best way to a healthy body inside and out

Those of you that follow me on Twitter will know, I have been in the process of being diagnosed for possibly Inflammatory bowel disease or Coeliac disease. After a colonoscopy and endoscopy just over a month ago, followed a few weeks later by an MRI scan I have finally got a diagnoses.

After having Coeliac type symptoms, looking back now for about 30 years, I  eventually found a Doctor who was prepared to look again at a diagnoses rather than sticking with the label of Irritable bowel disease .  I had never been satisfied with the initial diagnoses and for probably 7 years I have been wheat free and about 4 years ago now I  have been gluten free as I did research about gluten intolerance and found lots of similarities with my condition.

Unfortunately after such a long time eating food that was causing me damage I am now intolerant to yeast ( wine, vinegar etc ) and onions and garlic all giving me the same symptoms as gluten, bloating and painful cramps.

After the two procedures I have decided I needed to work even harder to heal my insides. I have been researching,  reading books, blogs, tweets etc watching videos trying to take information from lots of different sources.

In doing so I have also learnt about the problems with Sugar and Fructose in our diet. I am now sugar free except the occasional birthday or special celebration when I make or bake using dextrose, raw honey or brown rice syrup. I can honestly say I don’t crave sugar anymore. I baked 50 gluten free cakes the other day for a holiday club and had no desire to eat one. It can be done! Parmesan cheese , macadamia nuts have been my go to treats. I have removed all alcohol too, to help with the healing process. Again, this has been easier than I imagined.

I have been researching  FODMAPS and Specific Carbohydrate Diet looking at removing all grains including rice and lowering possibly excluding cows milk and caffeine .

I think I will stick with Specific carbohydrate diet for now and see how this goes. Avoiding sugar, grains, starchy vegetables and some dairy.

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Finally on Wednesday it was time to go back and see my Gastro specialist, I took my husband with me in case I didn’t take in everything the Doctor told me. I had been waiting for this moment for many years. If Im honest I had got my head around Coeliac disease and ticked all the boxes for the condition and If I was a betting woman I would have put my money on Coeliac disease. Unfortunately this wasn’t the case and I was told I had Crohns disease  which is an inflammatory bowel disease. My biopsies were inconclusive but from the evidence he had from Colonoscopy and the MRI scan he concluded it was Crohns. I was told the types of medication I could have. ( I have no idea what he said ) But Mr S attempted to write down the Drugs names. Surely not the best way to give out important facts. We needed a leaflet with correct spellings of drugs and some basic advice and information.

I was given no information, just told to check out  National association of Crohns and Colitis and go home and do my homework!

When I asked about Coeliac disease and reminded him how long it was since I had eaten gluten. The Doctor said Coeliac disease could not be ruled out although he saw no damage when he did the endoscopy.

He asked me how my health was at the present time and I was thrilled to tell him how well I felt really well and that I was managing the disease by eating very healthily. I could tell he wasn’t convinced that the healthy diet was making much of a difference.

He told me to come back in 4 months, sooner if I had a major flare up and to have more blood tests.

Well, I left the hospital with a scary new ‘label’, I knew very little about the disease. Only knowing one person with Crohns who was regularly hospitalised and a cousin with Ulcerative Colitis, who has had many tough years of medication and operations.

I think its fair to say I was in shock, and still am a bit. But as a few wise Twitter friends reminded me, nothing has changed, its just a new label. I have never had a major flare up. over 30 years.Only been in hospital for these recent procedures.

In the past I probably have had one possible two days a month when I have cramps and sickness or brain fog after being accidentally glutened or after eating one of my other food intolerances. Even that seems to be reducing, but its early days yet.

Since changing my diet my weight is staying constant and so far I have not had any bloating. After hearing strong medication mentioned I am determined to keep this disease from flaring, using a healthy diet removing many known irritants to the body.

If you feel symptoms you have are not being taken seriously, seek another Doctors opinion. It took me 30 years and 3 separate surgeries in two counties and many many doctors to reach my diagnoses. Don’t give up! Maybe try Specific carbohydrate diet or FODMAPS to see if that could help.

I still haven’t really started looking at information about Crohns disease, but know that it is my next task.

Here’s to staying Fabulously Free From and eating only gorgeous fresh nutritious food!

 

Great sources of information here

Crohns and Colitis uk

Coeliac uk

SCD Lifestyle and follow on Twitter @scdlifestyle

I can also recommend a book Coeliac Disease what you need to know by Alex Gazzola