Well, my dad wrote two letters about my situation: one to the head gastroenterologist at the hospital, and one to his GP. He sent them off nearly 2 weeks ago, and as expected, we have yet to hear anything. It isn't surprising, and it's probably true that his letters were unusual. The doctors probably don't know what to make of them. He had me read them over to check for any missed information that I want included, but honestly, I have no idea what's best to write in a letter like this. So they were short, 3 or 4 paragraphs. I felt they were very vague but gave them the OK because I worry these doctors will be more confused and annoyed than anything. (I always feel like a burden - a feeling I wish I could shed because I'll never be able to fight if I fear I'm a nuisance child.) It will be 2 weeks on Monday, so the question is, where do we go from here? Wait another week? 2 more weeks? A month? ...Forever? At this rate, I'll end up making an appointment and trying to explain 7 years/15 years of personal history to a man who's short on time, ignorant about who I am, and 'humourless.' A messy appointment I hoped to avoid, hence the letter from my father, his patient of many years, someone whose case of M.E he knows.
Meanwhile, I have been gluten free for approximately 6 months, give or take, and see absolutely no improvement in my symptoms. It dawned on me that cross-contamination in the home is still an issue. I am the only one on a gluten free diet. Which means the others eat sandwiches, biscuits, crisps. I realised that my dad eats a sandwich and then goes around the house touching things with those wheat hands. My mum eats Custard Creams every day and likewise then goes touching things. Everything I've ever read about celiac disease and cross-contamination tells me that they need to wash their hands thoroughly after eating these things. I have raised this issue but my faith in their ability to remember and also, if I'm honest, take it seriously, is nil. Contamination is tough in any celiac or gluten-intolerant household. It's hard to remember all the 467 ways something can be contaminated. A lot of these ways seem like OCD paranoia and that makes it hard for people to take them seriously. In my case, there's no positive result for celiac. Even my father got negged in his biopsy after his positive blood test. So I have taken the challenge of being gluten free entirely on my own as a theory; no medical advice or assistance, nothing to back up its necessity. It's an experiment at the end of the day. And an experiment perhaps does not warrant washing hands after a biscuit because the naughty biscuit crumbs might get on the banisters and my possessions.
I feel at a standstill. I have taken the steps I can see before me, but the rest relies on other people. Making sure the home is clean from gluten. Hearing from doctors. I'm not sure what the next step for me to take is. Truthfully, I've turned away from the theory of celiac in recent months, thinking my continued symptoms and the new/progressed symptoms that keep popping up mean gluten is not a problem within my body. I have considered M.E or lord knows what illness instead. But, I can't turn away from the possibility while I see contamination. I just want to figure everything out. Trying to figure things out is very lonely. Especially when your family aren't fully on board. And your SOS message in a bottle goes unanswered.
Meanwhile, I have been gluten free for approximately 6 months, give or take, and see absolutely no improvement in my symptoms. It dawned on me that cross-contamination in the home is still an issue. I am the only one on a gluten free diet. Which means the others eat sandwiches, biscuits, crisps. I realised that my dad eats a sandwich and then goes around the house touching things with those wheat hands. My mum eats Custard Creams every day and likewise then goes touching things. Everything I've ever read about celiac disease and cross-contamination tells me that they need to wash their hands thoroughly after eating these things. I have raised this issue but my faith in their ability to remember and also, if I'm honest, take it seriously, is nil. Contamination is tough in any celiac or gluten-intolerant household. It's hard to remember all the 467 ways something can be contaminated. A lot of these ways seem like OCD paranoia and that makes it hard for people to take them seriously. In my case, there's no positive result for celiac. Even my father got negged in his biopsy after his positive blood test. So I have taken the challenge of being gluten free entirely on my own as a theory; no medical advice or assistance, nothing to back up its necessity. It's an experiment at the end of the day. And an experiment perhaps does not warrant washing hands after a biscuit because the naughty biscuit crumbs might get on the banisters and my possessions.
I feel at a standstill. I have taken the steps I can see before me, but the rest relies on other people. Making sure the home is clean from gluten. Hearing from doctors. I'm not sure what the next step for me to take is. Truthfully, I've turned away from the theory of celiac in recent months, thinking my continued symptoms and the new/progressed symptoms that keep popping up mean gluten is not a problem within my body. I have considered M.E or lord knows what illness instead. But, I can't turn away from the possibility while I see contamination. I just want to figure everything out. Trying to figure things out is very lonely. Especially when your family aren't fully on board. And your SOS message in a bottle goes unanswered.
