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Hi everyone,
Like everyone else, i stumbled accross this site and have found it fascinating and very interesting and helpful. However I also have never introduced myself. I also need you help with something that is still bugging me and want some feedback if anyone has a similar experience.
My history (long and boring) is that i started as a child with an intolerance for starch that lasted until I was 4.
In those days they just kept shovelling it in until your body just got on with it. The result was that I have had heartburn throughout my childhood. I also was diagnosed with Hypoglycaemia at 17 and have an essential tremor. My father also had the heartburn, eventually type 2 diabetes and the tremor. In my 20's I experienced a curious incident where my eosophagal sphinctor closed for serveral days for apparently no reason. When it reopened, I suffered from that day forward with very bad reflux.
In my 30's (I have suffered with fatigue my entire life) I started to gain weight, the fatigue got worse, the reflux got worse, I developed weird rashes that people kept telling me was eczema, my fingers and thumbs were stiff and ached all the time, very dry skin, dry eyes, dry mouth, dry vagina. I went to my gp, who ran fasting insulin tests and made me run around with a glucometer for some weeks and diagnosed me as now prediabetic. She put me on metformin and sent me to a dietition who ended up removing vitually all starch type foods from my diet. End of gastric relfux. I felt a little better. Then we tried to introduce the low GI starches. My body wasn't having it. Gastic reflux straight back. I would bloat up, sore stomach, followed by days of sore and bloated colon, ending in diarrhea. I could virtually track the progress of the food through the system. Interesting thing is sometimes that would take 10 hours, sometimes it would take days, but always with the bloating which eventually went on for weeks at a time. I had blood tests for food intolerances, all negative. I was told by some lunatic i had candida, but after 4 courses of antifungals, he told me i was cheating on my diet (I mean, how could he be wrong?).
I was very dispirited with people telling me to try anything from aloe vera to liquid bat dung (someone's Granny did this) and generally looking at me like i was neurotic. Only my husband kept telling me to keep asking. He had a friend who was misdiagnosed for years and died at 42 of an obscure autoimmune skin disease. I eventually went very reluctantly to my husbands gp, who turned out to be fantastic. He was so sympathetic and ran a huge group of blood tests, which threw up a positive ANA 1:160 titer, speckled, and a positive rheumatoid factor. he sent me to a gastroenterologist where i think I blundered.
I knew what my fasting insulin levels were and I asked him what he thought might be wrong. he told me it might be lupus but I was too old (37 at the time) and that my ANA titer wasn't high enough. He thought it was IBS, although I have never been constipated and that my gastric reflux was stress. He then performed a gastroscopy and a colonoscopy, which showed a gastritis of unknown origin with a hiatus hernia and microscopic colitis.
He prescribed a proton pump inhibitor for 2 weeks, told me i would never have gastric reflux again and that i must just take imodium for the diarhea. I was not happy and went back to my GP. He agreed and said he believed that I had an autoimmune disease, but was worried I might be misdiagnosed again, so started me on methotrexate and continued the proton pump inhibitor, as well as legalon (liver supplement) folic acid and calcium.
Within months, the rashes were gone, the sore fingers were gone, the responses to the food were reduced and the dry eyes and mouth were gone too. BUT after 11 months of treatment, I now have photosensitivity and for the last 3/4 months, my stomach is sore and hard all the time. I went back to my GP and he said that my stomach and colon is rigid and he felt it was time for a rheumatologist because you can't argue with the success of the methotrexate treatment, so i was unlikely to slip through the net, but it was now beyond his capabilities. I saw a rheumatologist who was again really nice. She spent several hours with me and diagnosed Mixed Connective tissue disease, Lupus, with Sjogrens and a suspicion of scleroderma. She put me on Plasmaquine (Plaquenil in South Africa) and started me on 2 weeks of prednisone 20mg a day, reducing to 10mg after 1 month, keeping up the methotrexate and other stuff.
When i went back after 1 month, I was still struggling with mood swings and had seen my gp, who diagnosed Cymbalta and Rivotril to help with the moods and the stomach pain. The Cymbalta has fixed the moods beautifully and either it, the rivotril, or the prednisone or all 3 are keeping my stomach simmering. I asked my rheumy about my stomach and she said it might just be stress and I must just wait for all the treatments to kick in. Which is what i am doing, but I am worried.
I don't see her until april and have had a really nasty unexplained flare of the stomach (it appeared to close again (I vomited food I had eaten the day before and there was no stomach acid in it) and blew up to such a size, i struggled to breath). I hadn't been outside and hadn't eaten anything aggressive, so where is this coming from? I gave it a day and it came down of its own accord, but i don't know what to do. i don't want to be seen as neurotic, but I also just don't see this as stress related. I have been going with my husband for counseling to help deal with this disease and have completely restuctured my life to reduce stress. Any suggestions as to a) what might be causing this? b) What should i do, if anything?
I am sorry to offload this longwinded story, but wanted to present all the facts. Please help if you can.
Thanks Rose
Like everyone else, i stumbled accross this site and have found it fascinating and very interesting and helpful. However I also have never introduced myself. I also need you help with something that is still bugging me and want some feedback if anyone has a similar experience.
My history (long and boring) is that i started as a child with an intolerance for starch that lasted until I was 4.
In those days they just kept shovelling it in until your body just got on with it. The result was that I have had heartburn throughout my childhood. I also was diagnosed with Hypoglycaemia at 17 and have an essential tremor. My father also had the heartburn, eventually type 2 diabetes and the tremor. In my 20's I experienced a curious incident where my eosophagal sphinctor closed for serveral days for apparently no reason. When it reopened, I suffered from that day forward with very bad reflux.
In my 30's (I have suffered with fatigue my entire life) I started to gain weight, the fatigue got worse, the reflux got worse, I developed weird rashes that people kept telling me was eczema, my fingers and thumbs were stiff and ached all the time, very dry skin, dry eyes, dry mouth, dry vagina. I went to my gp, who ran fasting insulin tests and made me run around with a glucometer for some weeks and diagnosed me as now prediabetic. She put me on metformin and sent me to a dietition who ended up removing vitually all starch type foods from my diet. End of gastric relfux. I felt a little better. Then we tried to introduce the low GI starches. My body wasn't having it. Gastic reflux straight back. I would bloat up, sore stomach, followed by days of sore and bloated colon, ending in diarrhea. I could virtually track the progress of the food through the system. Interesting thing is sometimes that would take 10 hours, sometimes it would take days, but always with the bloating which eventually went on for weeks at a time. I had blood tests for food intolerances, all negative. I was told by some lunatic i had candida, but after 4 courses of antifungals, he told me i was cheating on my diet (I mean, how could he be wrong?).
I was very dispirited with people telling me to try anything from aloe vera to liquid bat dung (someone's Granny did this) and generally looking at me like i was neurotic. Only my husband kept telling me to keep asking. He had a friend who was misdiagnosed for years and died at 42 of an obscure autoimmune skin disease. I eventually went very reluctantly to my husbands gp, who turned out to be fantastic. He was so sympathetic and ran a huge group of blood tests, which threw up a positive ANA 1:160 titer, speckled, and a positive rheumatoid factor. he sent me to a gastroenterologist where i think I blundered.
I knew what my fasting insulin levels were and I asked him what he thought might be wrong. he told me it might be lupus but I was too old (37 at the time) and that my ANA titer wasn't high enough. He thought it was IBS, although I have never been constipated and that my gastric reflux was stress. He then performed a gastroscopy and a colonoscopy, which showed a gastritis of unknown origin with a hiatus hernia and microscopic colitis.
He prescribed a proton pump inhibitor for 2 weeks, told me i would never have gastric reflux again and that i must just take imodium for the diarhea. I was not happy and went back to my GP. He agreed and said he believed that I had an autoimmune disease, but was worried I might be misdiagnosed again, so started me on methotrexate and continued the proton pump inhibitor, as well as legalon (liver supplement) folic acid and calcium.
Within months, the rashes were gone, the sore fingers were gone, the responses to the food were reduced and the dry eyes and mouth were gone too. BUT after 11 months of treatment, I now have photosensitivity and for the last 3/4 months, my stomach is sore and hard all the time. I went back to my GP and he said that my stomach and colon is rigid and he felt it was time for a rheumatologist because you can't argue with the success of the methotrexate treatment, so i was unlikely to slip through the net, but it was now beyond his capabilities. I saw a rheumatologist who was again really nice. She spent several hours with me and diagnosed Mixed Connective tissue disease, Lupus, with Sjogrens and a suspicion of scleroderma. She put me on Plasmaquine (Plaquenil in South Africa) and started me on 2 weeks of prednisone 20mg a day, reducing to 10mg after 1 month, keeping up the methotrexate and other stuff.
When i went back after 1 month, I was still struggling with mood swings and had seen my gp, who diagnosed Cymbalta and Rivotril to help with the moods and the stomach pain. The Cymbalta has fixed the moods beautifully and either it, the rivotril, or the prednisone or all 3 are keeping my stomach simmering. I asked my rheumy about my stomach and she said it might just be stress and I must just wait for all the treatments to kick in. Which is what i am doing, but I am worried.
I don't see her until april and have had a really nasty unexplained flare of the stomach (it appeared to close again (I vomited food I had eaten the day before and there was no stomach acid in it) and blew up to such a size, i struggled to breath). I hadn't been outside and hadn't eaten anything aggressive, so where is this coming from? I gave it a day and it came down of its own accord, but i don't know what to do. i don't want to be seen as neurotic, but I also just don't see this as stress related. I have been going with my husband for counseling to help deal with this disease and have completely restuctured my life to reduce stress. Any suggestions as to a) what might be causing this? b) What should i do, if anything?
I am sorry to offload this longwinded story, but wanted to present all the facts. Please help if you can.
Thanks Rose
