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PirateGen

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  1. Wow, thanks to all of you for the support, I really appreciate it. For the first time, I actually feel like there are others who know what I've been going through.

    I am pretty happy with my doctor, I have felt better as a result of his intervention, and apparently he has three other patients in the same situation. But, I do get the feeling that he is also just learning about it as well.

    I was disappointed with the inconclusive results because I had been looking forward to finally having an answer. I live in Canada, so I don't know if there is anything like Enterolab here. I was also wondering if anyone could explain how the blood tests could be inconclusive - shouldn't any antibodies be positive and no antibodies be negative?

    Thanks again, everyone.

  2. How do I get family and friends to take this seriously?

    I've been unwell most of my life, ulcers as a baby, red, bumpy skin as a child, seizures as a teenager and young adult. In my early twenties, I had a sudden attack of severe stomach problems, cramps, diarrhea, vomitting and black urine. Having returned 6 months earlier from Africa, my doctor had me tested for parasites, but my results turned up nothing. I lost about 25 pounds suddenly and without trying. After that incident, my digestive system has never been the same. For years, people have accused me of being anoerexic, even though I have tried to explain that eating can make me really uncomfortable, it does not seem to register. Because I had so many symptoms, all the time, I rarely brought them up. I think there was a certain amount of denial on my part, too. I think I was scared that I had something very serious. Who would have known that because I didn't complain on a daily basis about how rotten I felt that now everyone seems to look at me as though I'm making this up. I just look at myself, and I can tell something is not right. Regardless of how I felt inside, I always looked stressed. My skin tone is greyish white. My eyes were always itchy, red and runny. I am at the very lowest of the acceptable range for weight to height.

    I have also thought I was crazy as my symptoms seem to vary, there are a lot of them, but they seem to come and go in stages. I will have severe migraines, and/or nausea and/or cramps that lasts for several days and then it will go away. I didn't have acne as a teen, but in my 30s I developed a condition on my face, that eventually spread to my eyes, causing an eye twitch that got persistently worse and lasted six years. (I have found that tea tree oil helps control it, but it has not eliminated it entirely). It starts with a feeling that something is crawling on my skin, becomes itchy, turns into a bump with a white waxy centre, or clear fluid like a blister. It would also seem to take these bumps forever to heal. I don't know why, but I have always felt that my symptoms were all related and that if I could fix that one central cause, I would feel better.

    After a visit to the hospital for what I thought was food poisoning, the Dr. suggested I get an ultrasound to check my gallbladder. I've been tested for diabetes, tuberculosis, HIV, the list goes on and on. I recently started seeing a new doctor and he suggested that I get tested for Celiac. I have a half sister who is Celiac. My blood test came back "inconclusive". Still convinced that I have Celiac, he asked me to do the 3 day stool test. It too, came back negative, but my Doctor still believes I am a classic case. My abdominal ultrasound showed no abnormalities.

    Over the years, I have unknowingly limited most obvious gluten products. I've never been a big bread eater and although I will eat cookies and pastries, it is usually only when I am either starving, or at a social event. I think this could have affected my results, but I'm not sure. My Doctor asked me to continue on a gluten-free diet for the summer; to see if it has an effect. I have been gluten-free (as much as I possibly can avoid hidden gluten) for nearly a month now, and my skin seems to be clearing up. My stomach, which used to be the soundtrack to my life has fallen suddenly very quiet, and only grumbles occassionally now when I'm digesting food. I feel less "hazy" and more energized, but I know this can all be psychosomatic.

    Back to my question. Without an official diagnosis, my family seems to think sticking to a gluten-free diet is unnecessary. I keep getting the "I didn't even know you were sick". Should I even bother?

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