I have been living with this disease for over fifteen years, this is about my journey. Crohns disease is a inflammation of the digestive tract. It has similar symptoms as ulcerative colitis. Along with this condition they are sometimes both referred to as irritable bowel disorder or IBD. They are often referred to as a Western disease.
My journey started with a flare up which left me utterly exhausted, I was barely able to leave the house and had no idea what was causing it. I visited the GP and was referred to a consultant for further tests. I was given the diagnosis of unspecified colitis at this point. This was the first of many such visits to several different consultants in various parts of the country, I was moving about a lot at this time as the work I was doing was mostly fixed term contracts. After a few years, many lesser flare ups, and many tests I was given a diagnosis of crohns disease. I took steriods during the first and worst flare up and anti-inflammatories from time to time from there on for a few years, that is until I started to feel run down and lacking in energy without a crohns flare up. I had various tests and it was established that my bilirubin count was raised, the GP concluded that it was probably a side effect of the medication I had been taking. Around the same time I consulted the GP about my diet and was informed that what I eat has no effect on crohns. This was a turning point for me. The medication I was taking was now effecting other vital organs and how could a disease of the digestive tract not be effected by what you are eating. I had established that the long term prognosis of crohns is not good, I was, at some point in the future, most likely to need operations on my digestive tract to remove unhealthy, worn out sections. I was young, single with my future in front of me, I would not be able to enjoy this if I was struggling now. I had an active job, working outdoors, although I in future I may not continue to work outdoors, I wanted to enjoy it walking, canoeing etc.
I then started to research alternatives. This was the days before the internet was the mass of information that it is today, so it was not that easy. In the end it was my Granmother who came up trumps. She found someone who could do a food test which I hoped would establish which foods I should avoid eating. The test, for me, was a turning point. Sadly in my naivety, eagerness to find a solution and moving house I no longer have any information on who carried out the test or what kind of test it was. I also did not ask why I needed to exclude my particular list of foods. My list is:
cow's milk, tea, coffee, red wine, all citrus fruit, raspberries, cranberries, elderflower, tomatoes and peppers. I am vegetarian so was not tested for meat or fish. Cow's milk is only in it's raw state as milk or cream all other milk products (cheese or yoghurt) are fine. So I started to exclude these foods from my diet, within a week I felt different and within a month I felt really well, my energy levels were good and the bloating feeling I had after every meal had gone completely.
I met and married my husband and five years after the test I got pregnant with my first child. I had been led to believe that crohns often goes into remission during pregnancy. As my crohns was very much in remission already I was not sure if I would notice any difference. I got lazy about sticking to my diet and 7 months into the pregnancy I developed obstetric cholestatis. This is a condition whereby the liver function is impaired and there are toxins in your blood as it is not cleaned properly. A symptom is itchy hands and feet which are worse at night. Sadly for me this led to a chain of events which ended four months later with me in hospital with a crohns flare up, unable to keep food down and a 10 week old baby who I could no longer breastfeed. After a few days in hospital I discharged myself, I was there to be fed and nurtured back to health but the hospital was experiencing a prolonged power cut due to stormy weather and nearly every meal was cheese sandwiches. After a period of soul searching as I was not longer able to breast feed, could I have done things differently, what if's, I realised that actually what was more important was getting strong and well and staying that way so I that I could look after my baby and be there for him as he grew up.
I now had a consultant who wanted to see me on a regular basis. I returned to the hospital a few weeks later for a check up and again six months later, thereafter an annual check up or sooner if things got bad again. A year later I had a colonoscopy (a camera that goes into your digestive tract) to check the extent of the crohns. For the next few years I continued with an annual appointment. It takes over an hour to get to the hospital, I would usually wait 2 1/2 to 3 hours to see the consultant and spend a maximum of five minutes with him. Five hours per appointment with a young child, not my idea of a fun day out. I then got pregnant again. I was strict with my diet and the cholestatis did not return. After forty weeks I gave birth to a 9lb 11oz baby with a very thick cord and huge placenta (the midwife's comments not mine), I successfully breastfed and still am. Now that I had 2 children I did not relish the thought of spending five hours of a day on a five minute conversation with a consultant to inform him that all was well. I approached my GP. I now have a blood test there with a follow up appointment if necessary (any abnormalities). The results of the test are sent to my consultant along with a report on my crohns.
About a year ago I started to get itchy patches on my hands, after many months I established this was urticaria and again this was likely to be linked to my diet. As part of my investigation into likely causes I came across information on histamine intolerance. I was intrigued to see that on the list of foods that are high in histamine, many of them were already excluded from my diet to manage crohns. Throughout my urticaria flare up my crohns stayed in remission. My list of excluded foods has now got longer! I have included all alcohol, pineapple, chocolate, food colouring, and preservatives sulphites and glutamates. I am still not sure why I cannot tolerate coffee or milk. I had given up drinking coffee many years before I had the test as I felt awful drinking it, the test results also indicated an extreme reaction to it.
I am aware that for some alternative treatments are seen as bogus and untested, but they have worked for me. I will always be grateful for my dear departed granma who found and paid for my food test. It started me on a journey which has given me the opportunity to enjoy my life to full and to become a mother to two children which she sadly never met. My crohns has been in remission for over seven years and I hope it continues to stay that way and I live a long, healthy and fulfilled life. Thank you for reading my story.
Showing posts with label histamine intolerance. Show all posts
Showing posts with label histamine intolerance. Show all posts
Urticaria
22 April 2012
I have been living with this condition for a year now, not long I know, but it feels like it's been ages. I am effected on my hands only, my left hand far worse than my right.
It all started after a week of camping. When I finished the trip I noticed that I had red itchy blotches on the insides of some of my fingers. At the time and for months after I thought it was eczema. I continued to eat my normal diet, vegetarian food cooked from scratch. I exclude a few foods to manage another health condition. I carried on using all the same toiletries, but started using more and different hand creams to try to ease the itching.
There were several occasions over the next few months when the symptoms subsided, it is so easy in hindsight to realise why but at the time I did not make the connection. I did extensive research into eczema and managing it on the internet and in books but I could never quite find any information which matched my actual symptoms. I had decided from the outset not to consult my GP.
After six months during which time my fingers had got gradually fatter (I had had to stop wearing my engagement ring as it was too tight) with swelling, I noticed after a day out with friends the next morning my hands were considerably more swollen and my fingers could hardly bend. I consulted my homeopathy book to find a remedy for swelling. There was one, Apis mel, this remedy is also used for urticaria. On looking up urticaria in the index, I found other remedies which described exactly my symptoms. I then started to research urticaria and how to manage it. I was troubled to read that it is difficult to manage and can be almost impossible to pin point the triggers. Not one to give in to such information I carried on reading.
About a month into that journey I woke one morning with an eye swollen shut. My hands by this point were so swollen they were pretty much straight every day, many simple tasks were very difficult, I was unable to drive. One of triggers for the swelling I discovered was limonene, an essential oil. It was in virtually every household cleaning and toiletry product in my home. I stopped using them all and the effect was incredible. Within a few days my hands were far less swollen but I still had the intense itchiness on most mornings (this is the only time of day that I am ever itchy). Trying to find products without limonene in was another journey in itself, I will post about that another time
I carried on researching and chanced upon a website that talked about histamine intolerance. It outlined foods that are high and low in histamine and foods that make you body produce more histamine. I was astounded to read the list of foods that make your body produce more histamine, as so many of them were foods that I already excluded from my diet to manage another condition. I went through the list and started to exclude all the other foods on the list that I eat regularly.
I also discovered that certain food colours and some preservatives mainly sulphites, MSG, BHT and BHA. The food I had eaten during the week that had triggered this would have been high in all or most of these. This diet was a huge change from my normal one.
A year on, I know what all my triggers are. I have been symptom free for two months now. My skin on my hands is back to normal. I lost four fingernails during the height of a particularly bad flare up, which damaged the nail bed. Two of those are back to normal the other two are getting there. If and when I do have a flare up, I use two homeopathic remedies apis mel and urtica urens.
Avoiding the preservatives is challenging, I have to read the labels on everything I buy, even something I buy every week. Ingredients have changed which I have discovered to my cost. Also if an ingredient within the product contains one the those preservatives it might not be mentioned so I have to be aware of what they might be in too! I hardly used to eat out much, but I now I never do. All food I eat needs to be cooked by myself or by someone of whom I can ask them what they put in it, tedious but necessary.
It is hardly surprising really that the triggers have turned out to be unnatural additives in foods.
It all started after a week of camping. When I finished the trip I noticed that I had red itchy blotches on the insides of some of my fingers. At the time and for months after I thought it was eczema. I continued to eat my normal diet, vegetarian food cooked from scratch. I exclude a few foods to manage another health condition. I carried on using all the same toiletries, but started using more and different hand creams to try to ease the itching.
There were several occasions over the next few months when the symptoms subsided, it is so easy in hindsight to realise why but at the time I did not make the connection. I did extensive research into eczema and managing it on the internet and in books but I could never quite find any information which matched my actual symptoms. I had decided from the outset not to consult my GP.
After six months during which time my fingers had got gradually fatter (I had had to stop wearing my engagement ring as it was too tight) with swelling, I noticed after a day out with friends the next morning my hands were considerably more swollen and my fingers could hardly bend. I consulted my homeopathy book to find a remedy for swelling. There was one, Apis mel, this remedy is also used for urticaria. On looking up urticaria in the index, I found other remedies which described exactly my symptoms. I then started to research urticaria and how to manage it. I was troubled to read that it is difficult to manage and can be almost impossible to pin point the triggers. Not one to give in to such information I carried on reading.
About a month into that journey I woke one morning with an eye swollen shut. My hands by this point were so swollen they were pretty much straight every day, many simple tasks were very difficult, I was unable to drive. One of triggers for the swelling I discovered was limonene, an essential oil. It was in virtually every household cleaning and toiletry product in my home. I stopped using them all and the effect was incredible. Within a few days my hands were far less swollen but I still had the intense itchiness on most mornings (this is the only time of day that I am ever itchy). Trying to find products without limonene in was another journey in itself, I will post about that another time
I carried on researching and chanced upon a website that talked about histamine intolerance. It outlined foods that are high and low in histamine and foods that make you body produce more histamine. I was astounded to read the list of foods that make your body produce more histamine, as so many of them were foods that I already excluded from my diet to manage another condition. I went through the list and started to exclude all the other foods on the list that I eat regularly.
I also discovered that certain food colours and some preservatives mainly sulphites, MSG, BHT and BHA. The food I had eaten during the week that had triggered this would have been high in all or most of these. This diet was a huge change from my normal one.
A year on, I know what all my triggers are. I have been symptom free for two months now. My skin on my hands is back to normal. I lost four fingernails during the height of a particularly bad flare up, which damaged the nail bed. Two of those are back to normal the other two are getting there. If and when I do have a flare up, I use two homeopathic remedies apis mel and urtica urens.
Avoiding the preservatives is challenging, I have to read the labels on everything I buy, even something I buy every week. Ingredients have changed which I have discovered to my cost. Also if an ingredient within the product contains one the those preservatives it might not be mentioned so I have to be aware of what they might be in too! I hardly used to eat out much, but I now I never do. All food I eat needs to be cooked by myself or by someone of whom I can ask them what they put in it, tedious but necessary.
It is hardly surprising really that the triggers have turned out to be unnatural additives in foods.
Scary!
18 March 2012
I have been suffering for the last year with Urticaria on my hands, my left hand is far worse than my right. I have now identified most if not all the triggers for this and am having longer and longer periods symptom free.
Last night, however, I was cutting up some fish to make into fish cakes for my children and husband. I have been vegetarian for years and have not eaten fish myself for years and may have never cut a fish up in my life! As I was handling the fish my hands started to become itchy, like there were ants crawling all over them. Halfway through my youngest wanted me to do something so I stopped and washed my hands. I then went back to the fish and the itchiness started again but this time it was accompanied by a rising feeling in my body. It felt to me, as I have experienced it before, like my body going into an overproduction of histamine. Then my heart started to race. I immediately went to the sink and washed my hands, within seconds the heart racing had stopped, but I felt really faint. I must have looked awful because my oldest said to me 'Mummy are you ok?' I had a short sit down until I felt more 'normal' and then returned to the fish with rubber gloves on (my husband was not in to help).
I cannot believe that fish would create such an extreme reaction as that. It was really frightening and immensely powerful. My body was fighting something very hard, I am just so glad that I am in tune with my body and therefore knew what it was telling me and what I needed to do to stop it.
Last night, however, I was cutting up some fish to make into fish cakes for my children and husband. I have been vegetarian for years and have not eaten fish myself for years and may have never cut a fish up in my life! As I was handling the fish my hands started to become itchy, like there were ants crawling all over them. Halfway through my youngest wanted me to do something so I stopped and washed my hands. I then went back to the fish and the itchiness started again but this time it was accompanied by a rising feeling in my body. It felt to me, as I have experienced it before, like my body going into an overproduction of histamine. Then my heart started to race. I immediately went to the sink and washed my hands, within seconds the heart racing had stopped, but I felt really faint. I must have looked awful because my oldest said to me 'Mummy are you ok?' I had a short sit down until I felt more 'normal' and then returned to the fish with rubber gloves on (my husband was not in to help).
I cannot believe that fish would create such an extreme reaction as that. It was really frightening and immensely powerful. My body was fighting something very hard, I am just so glad that I am in tune with my body and therefore knew what it was telling me and what I needed to do to stop it.
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