Post by Sal on Sept 5, 2013 17:03:39 GMT
Hi, my name is Sal and this is my story with Salicylate Sensitivity.
I live in the UK and grew up in a loving home with three older brothers who teased me without mercy! I had a happy childhood, mainly healthy with just a few episodes of tonsilitus.
At 18, I trained to be a teacher and married at 22. At the age of 26 I became vegetarian.
Childbirth- was it a trigger? I had my only son at the age of 39 after many years of an emotional roller-coaster with unexplained infertility and 4 IVF attempts. Apart from a threatened miscarriage, I had a great pregnancy.
Or was stress the trigger for S S? When my son started school, I returned to fulltime teaching and in 1998, I had a very stressful experience at work- OFSTED.
Ear problems Then my health problems began. First of all, my ears became 'echoey' and the doctor diagnosed either hayfever or an ear infection. I tried antihistamine then decongestant and the antihistamine worked. I started to have a constantly runny nose, always having to clear my throat. Soon after, I developed glue ear and was almost completely deaf. I had to take weeks off work as I could not hear what the children were saying. Eventually I was seen by an ear, nose and throat specialist who was sceptical about my condition until he used a camera to look in my nose and into my throat. He told me that the lining of my nose had become unstable and my blood contained a high level of allergens, caused most likely by an allergy. Nasal Polyps I also had nasal polyps. I was prescribed a steroid nasal spray which kept the symptoms under check. A hearing check revealed that I had permanently lost hearing in one ear and I had to have an MRI to check I didn't have a brain tumour. A consultant confirmed many years later that my hearing loss was likely caused by this intolerance. I now have a hearing aid to compensate for my hearing loss.
Tiredness, loss of smell Life carried on as normal, but I began to feel tired and washed out. My sense of smell vanished for about 5 years which made life very difficult- you can't smell if food is cooked or burning, no idea if clothes need washing and food seems dull without its smell. I read up on what I could do to help and I decided I needed superfoods. So I added blueberries to my diet. Felt no better so I added dried apricots then honey, tinned tomatoes... I tried to adopt the Mediterranean diet full of colour.
More Stress In 2009, I had a series of stressful experiences- OFSTED again, my lovely labrador died and builders in the house for months.
Lethargy/ memory loss I was feeling very lethargic and I noticed that my memory was not as good as it was. Early in 2010, my memory was terrible (psuedodementia) and I remember one day trying to teach mathematics to the class. I was thinking of the number 4 but was writing the number 2. I also couldn't remember any of the children's names and kept calling my teaching assistant by my own name. The following morning, I couldn't get out of bed- I couldn't remember how to. It took me about an hour to reach the bathroom, first remembering how to sit up, then staggering there holding onto the walls as my balance had gone. Loss of balance
My husband took me to the doctor and I saw a locum. I tried to explain that I was a professional but I could barely speak. I couldn't remember how to say simple words. The locum decided it was the menopause and sent me away.
Misdiagnosis Almost every day, my husband took me back to the doctor's. Different doctors said depression, menopause, ME, heart failure, bowel cancer. My list of symptoms was vast and suggested many different causes.
I had an long-standing appointment with an allergy clinic in a town 50 miles away and my husband drove me there. I fell asleep in the car (another symptom) and I was seen by an allergy consultant. He talked to me for an hour, asking many many questions then he said, I don't think you have an allergy, I think you have vitamin B12 deficiency. I was tested and found to have extremely low B12 and folic acid levels. My doctor prescribed me B12 tablets but little seemed to improve.
Over the next months, I had some very invasive tests- a colonoscopy, an angiogram, an echocardiogram, as my extreme fatigue continued. One evening, my husband called the paramedics because I was having heart palpitations.
One day in the Summer, my brother phoned from the USA and I burst into tears. I still didn't know why I was ill, and was awaiting for a visit to a gastroenterologist. I was worried about losing my job and I felt inadequate as a mother as I was often asleep and could rarely do anything. My brothers decided to pay for a private diagnosis and in November 2010, I was seen by a specialist. He confirmed that Vitamin B12 and folic acid deficiency was the cause of all my health problems.
I started B12 injections plus daily folic acid and I slowly began to recover. 15 months after falling ill, with the support of Occupational Health I started a phased return to work. I was told the vitamin deficiency was caused by being vegetarian but I always argued that I wasn't so sure as I ate fortified foods. I am convinced that my vitamin B12 deficiency was caused by long-term salicylate intolerance. Is there a link?
Soon after returning to work, I noticed some 'insect bites' on my legs. When I went for my B12 injection, I asked the nurse about them as I was wondering if they were flea bites. She called a doctor, who said they were hives and another appointment was made at the allergy clinic.
Urticaria/ swollen lips I started having really bad skin rashes, swollen lips, eyes closed up and generally feeling unwell. Eating a few chocolates containing hazelnuts needed steroids to calm my body down, fast food containing MSG made my face swell up like I'd been boxing. At the allergy clinic, I did not react to the skin prick tests then the doctor very hurriedly gave me a leaflet about Salicylate Sensitivity and sent me on my way. In the car on the way home, I complained that our journey had been wasted but then I started to read about High Salicylate foods. In an attempt to improve my tiredness and general poor health, I had been eating the very foods which were making me ill in the first place. I started to cut back on the high salicylate foods and almost straight away I no longer needed the steroid nasal spray. My health gradually improved and I had a year at work with no days off, something I hadn't achieved for a while.
In 2012, I started to feel stressed. At work, sympathy for my illnesses had waned. Very few had contacted me when I was ill for 15 months and I was working with a team who didn't always support me. One morning, I couldn't go into work. I woke up, and just told my husband, I just can't go. I had never felt this way before. Once again I went to the doctor and I was diagnosed with work-related stress and depression.Stress/ depression/ panic attacks I couldn't go out of the house on my own and some days I just cried. The doctor told me you may need 2 weeks off, you may need 2 months off or you may never return. I started Cognitive Behaviour Therapy which helped enormously in regaining my confidence in very small steps. Anti-depressants meant I didn't cry all day. After months, I still wasn't ready to go back to work. My employers lost patience, giving me the choice of resignation or a tribunal to seek my dismissal on the grounds of ill-health. I chose the former. Not the way I imagined my 30 year teaching career ending.
I live in the UK and grew up in a loving home with three older brothers who teased me without mercy! I had a happy childhood, mainly healthy with just a few episodes of tonsilitus.
At 18, I trained to be a teacher and married at 22. At the age of 26 I became vegetarian.
Childbirth- was it a trigger? I had my only son at the age of 39 after many years of an emotional roller-coaster with unexplained infertility and 4 IVF attempts. Apart from a threatened miscarriage, I had a great pregnancy.
Or was stress the trigger for S S? When my son started school, I returned to fulltime teaching and in 1998, I had a very stressful experience at work- OFSTED.
{OFSTED}
Ofsted is the Office for Standards in Education, Children’s Services and Skills. We report directly to Parliament and we are independent and impartial. We inspect and regulate services which care for children and young people, and those providing education and skills for learners of all ages.
Ofsted is the Office for Standards in Education, Children’s Services and Skills. We report directly to Parliament and we are independent and impartial. We inspect and regulate services which care for children and young people, and those providing education and skills for learners of all ages.
Ear problems Then my health problems began. First of all, my ears became 'echoey' and the doctor diagnosed either hayfever or an ear infection. I tried antihistamine then decongestant and the antihistamine worked. I started to have a constantly runny nose, always having to clear my throat. Soon after, I developed glue ear and was almost completely deaf. I had to take weeks off work as I could not hear what the children were saying. Eventually I was seen by an ear, nose and throat specialist who was sceptical about my condition until he used a camera to look in my nose and into my throat. He told me that the lining of my nose had become unstable and my blood contained a high level of allergens, caused most likely by an allergy. Nasal Polyps I also had nasal polyps. I was prescribed a steroid nasal spray which kept the symptoms under check. A hearing check revealed that I had permanently lost hearing in one ear and I had to have an MRI to check I didn't have a brain tumour. A consultant confirmed many years later that my hearing loss was likely caused by this intolerance. I now have a hearing aid to compensate for my hearing loss.
Tiredness, loss of smell Life carried on as normal, but I began to feel tired and washed out. My sense of smell vanished for about 5 years which made life very difficult- you can't smell if food is cooked or burning, no idea if clothes need washing and food seems dull without its smell. I read up on what I could do to help and I decided I needed superfoods. So I added blueberries to my diet. Felt no better so I added dried apricots then honey, tinned tomatoes... I tried to adopt the Mediterranean diet full of colour.
More Stress In 2009, I had a series of stressful experiences- OFSTED again, my lovely labrador died and builders in the house for months.
Lethargy/ memory loss I was feeling very lethargic and I noticed that my memory was not as good as it was. Early in 2010, my memory was terrible (psuedodementia) and I remember one day trying to teach mathematics to the class. I was thinking of the number 4 but was writing the number 2. I also couldn't remember any of the children's names and kept calling my teaching assistant by my own name. The following morning, I couldn't get out of bed- I couldn't remember how to. It took me about an hour to reach the bathroom, first remembering how to sit up, then staggering there holding onto the walls as my balance had gone. Loss of balance
My husband took me to the doctor and I saw a locum. I tried to explain that I was a professional but I could barely speak. I couldn't remember how to say simple words. The locum decided it was the menopause and sent me away.
Misdiagnosis Almost every day, my husband took me back to the doctor's. Different doctors said depression, menopause, ME, heart failure, bowel cancer. My list of symptoms was vast and suggested many different causes.
I had an long-standing appointment with an allergy clinic in a town 50 miles away and my husband drove me there. I fell asleep in the car (another symptom) and I was seen by an allergy consultant. He talked to me for an hour, asking many many questions then he said, I don't think you have an allergy, I think you have vitamin B12 deficiency. I was tested and found to have extremely low B12 and folic acid levels. My doctor prescribed me B12 tablets but little seemed to improve.
Over the next months, I had some very invasive tests- a colonoscopy, an angiogram, an echocardiogram, as my extreme fatigue continued. One evening, my husband called the paramedics because I was having heart palpitations.
One day in the Summer, my brother phoned from the USA and I burst into tears. I still didn't know why I was ill, and was awaiting for a visit to a gastroenterologist. I was worried about losing my job and I felt inadequate as a mother as I was often asleep and could rarely do anything. My brothers decided to pay for a private diagnosis and in November 2010, I was seen by a specialist. He confirmed that Vitamin B12 and folic acid deficiency was the cause of all my health problems.
{Symptoms of B12 and Folic Acid Deficiency}
WHAT ARE THE ACTIONS & DEFICIENCY SYMPTOMS OF B12 & FOLIC ACID?
Depression
Mental lethargy
Withdrawal
Irritability
Poor memory
Confusion
Dementia
Psychosis-paranoia
Insomnia
Digestive disturbances
Diarrhea
Weakness
Numbness
Stiffness/spasticity
Headaches
Restless legs
Burning feet
Increased sensitivity to pain
Sore tongue
Lesions at corners of mouth
Anemia (megaloblastic)
Shortness of breath
Low white blood cell count
Lowered resistance to infection, decreased antibody formation
Graying hair
Toxemia of pregnancy
Premature births
Increased risk of certain birth defects
Sprue
Weight loss
Anorexia (appetite loss)
WHAT ARE THE ACTIONS & DEFICIENCY SYMPTOMS OF B12 & FOLIC ACID?
Depression
Mental lethargy
Withdrawal
Irritability
Poor memory
Confusion
Dementia
Psychosis-paranoia
Insomnia
Digestive disturbances
Diarrhea
Weakness
Numbness
Stiffness/spasticity
Headaches
Restless legs
Burning feet
Increased sensitivity to pain
Sore tongue
Lesions at corners of mouth
Anemia (megaloblastic)
Shortness of breath
Low white blood cell count
Lowered resistance to infection, decreased antibody formation
Graying hair
Toxemia of pregnancy
Premature births
Increased risk of certain birth defects
Sprue
Weight loss
Anorexia (appetite loss)
I started B12 injections plus daily folic acid and I slowly began to recover. 15 months after falling ill, with the support of Occupational Health I started a phased return to work. I was told the vitamin deficiency was caused by being vegetarian but I always argued that I wasn't so sure as I ate fortified foods. I am convinced that my vitamin B12 deficiency was caused by long-term salicylate intolerance. Is there a link?
Soon after returning to work, I noticed some 'insect bites' on my legs. When I went for my B12 injection, I asked the nurse about them as I was wondering if they were flea bites. She called a doctor, who said they were hives and another appointment was made at the allergy clinic.
not me !
Urticaria/ swollen lips I started having really bad skin rashes, swollen lips, eyes closed up and generally feeling unwell. Eating a few chocolates containing hazelnuts needed steroids to calm my body down, fast food containing MSG made my face swell up like I'd been boxing. At the allergy clinic, I did not react to the skin prick tests then the doctor very hurriedly gave me a leaflet about Salicylate Sensitivity and sent me on my way. In the car on the way home, I complained that our journey had been wasted but then I started to read about High Salicylate foods. In an attempt to improve my tiredness and general poor health, I had been eating the very foods which were making me ill in the first place. I started to cut back on the high salicylate foods and almost straight away I no longer needed the steroid nasal spray. My health gradually improved and I had a year at work with no days off, something I hadn't achieved for a while.
In 2012, I started to feel stressed. At work, sympathy for my illnesses had waned. Very few had contacted me when I was ill for 15 months and I was working with a team who didn't always support me. One morning, I couldn't go into work. I woke up, and just told my husband, I just can't go. I had never felt this way before. Once again I went to the doctor and I was diagnosed with work-related stress and depression.Stress/ depression/ panic attacks I couldn't go out of the house on my own and some days I just cried. The doctor told me you may need 2 weeks off, you may need 2 months off or you may never return. I started Cognitive Behaviour Therapy which helped enormously in regaining my confidence in very small steps. Anti-depressants meant I didn't cry all day. After months, I still wasn't ready to go back to work. My employers lost patience, giving me the choice of resignation or a tribunal to seek my dismissal on the grounds of ill-health. I chose the former. Not the way I imagined my 30 year teaching career ending.
My inner peace has started to return. I am now starting to enjoy the things I used to. I have started this website to create a focus for my life. I want answers. I want to make a difference.
Salicylate Sensitivity has changed my life but it will never rule it.
Salicylate Sensitivity has changed my life but it will never rule it.