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Saw Billy Elliot - The Musical today with the Aunts. Was quite fabulous and we had marvelous seats. Rather enjoyed being with the Aunts, even if I stepped on the occasional land-mine. They both had practical educations and neither studied Shakespeare or theater in school. While I've read almost all of the Shakespearean plays in high school and college, they read maybe four and didn't see any of them performed. This boggles my mind. But hey, I told them, English Lit and cultural anthropology major. And Aunt M stated, "which is a useless degree, fun, but useless, at least you got the law degree." Sigh. I beg to differ. But there are some things one does not argue with people about. Religion is another one. People all assume when they say the word God - that we are all thinking the same thing or defining it the same way. Uh no. Politics same deal. Heck the same thing can be said about tv shows and comic books.
I'm often amazed how people think. It's so different than how I think.
Another thing discovered talking to the Aunts, was that my snarky sense of humor? Is well a trait I inherited from my father's side of the family, along with ceilac disease. (Yes, I'm ceilac. Not gluten resistent, not gluten intolerant, but full-fledged ceilac. I can't deny it any longer. But I'll explain that later.) Apparently my grandfather had a very dry wit and snarky sense of humor.
You should see my Dad's side of the family go at it on Facebook - you think I'm bad, whoo-boy.
According to Aunt K, a nurse, who has read up extensively on ceiliac disease - more so than I have, because medical journals put me to sleep after reading railroadese and tech specs all day long. Anyhow according to Aunt K - the definitions are as follows:
1. If the IGA - gluten shows up in your blood? You are definitely ceiliac. (See I got confused, because I was told if they find any cell damage in your esophagus you are ceilac. But that's not the case, it's if they find it in your blood. They did find it in my blood. Two- three blood tests - the IGA levels were so high...that the doctor told me, I think I know what is wrong with you - you are gluten intolerant. See look at how high these levels are? We have to do a test to see if there is any cell damage now and oh, don't eat glutens. According to ceiliacs and specialists in this field - the problem with the scrape test is if you've gone off glutens for a while, they won't find any cell damage, because the cells do heal, but each time you eat glutens they get hurt again and after a bit mutate, and become cancerous. IF you take the blood test and it is in your blood - you are ceiliac and if you feel better off glutens, yep.)
2. If you go off glutens and feel better, not sick, but nothing shows up in your blood and whenever you try glutens again you feel sick automatically- gluten intolerant or pre-ceiliac.
3. If you go off glutens and just feel better, but aren't sick automatically, and nothing shows up in your blood - you are gluten resistent.
The difference medically? If you have ceilac disease and ingest glutens - you are commiting gastro-intestinal suicide. Basically, you could end up with cancer, osteroposis, diabetes, etc. Not everyone experiences severe symptoms or the same symptoms. And ceiliac disease is hard to diagnose. It's also genetic.
Three people in my family have been diagnosed with it now. Aunt K, myself, and my cousin J. If I ingest glutens at all now? I get sick. It tends to take a while to show up in some cases. But I'm sick. My symptoms? Severe IBS, fatigue, physical depression, anxiety, tremor - all exhibited over a period of time and in stages. And it only takes a crumb, the smallest bit to make me sick. Ingesting gluten for me is the equivalent of ingesting arsenic. It is a poison to my system. Which makes work places and church events and normal social events daily obstacle courses. I'm constantly explaining why I can't eat the donuts someone felt the need to bring to work, or the cupcake they put on my desk, or the Christmas cookie they gave me, or the cake they brought to celebrate XYZ occassion, or the muffins...or the pizza they decided to have as a going away lunch or a business lunch or after a movie for a social event or volunteer event. It gets tiring. But I realize, it could be far, far worse. And my diagnosis - sharing that diagnosis with my Aunt, may well have saved two people's lives in my extended family. Because if left undiagnosed - ceiliac disease causes other ailments which do kill you.
I may do an extended review of Billy Elliot at a later point. It's late and I'm tired. Was up far too late last night writing the review of the Buffy comic.
I'm often amazed how people think. It's so different than how I think.
Another thing discovered talking to the Aunts, was that my snarky sense of humor? Is well a trait I inherited from my father's side of the family, along with ceilac disease. (Yes, I'm ceilac. Not gluten resistent, not gluten intolerant, but full-fledged ceilac. I can't deny it any longer. But I'll explain that later.) Apparently my grandfather had a very dry wit and snarky sense of humor.
You should see my Dad's side of the family go at it on Facebook - you think I'm bad, whoo-boy.
According to Aunt K, a nurse, who has read up extensively on ceiliac disease - more so than I have, because medical journals put me to sleep after reading railroadese and tech specs all day long. Anyhow according to Aunt K - the definitions are as follows:
1. If the IGA - gluten shows up in your blood? You are definitely ceiliac. (See I got confused, because I was told if they find any cell damage in your esophagus you are ceilac. But that's not the case, it's if they find it in your blood. They did find it in my blood. Two- three blood tests - the IGA levels were so high...that the doctor told me, I think I know what is wrong with you - you are gluten intolerant. See look at how high these levels are? We have to do a test to see if there is any cell damage now and oh, don't eat glutens. According to ceiliacs and specialists in this field - the problem with the scrape test is if you've gone off glutens for a while, they won't find any cell damage, because the cells do heal, but each time you eat glutens they get hurt again and after a bit mutate, and become cancerous. IF you take the blood test and it is in your blood - you are ceiliac and if you feel better off glutens, yep.)
2. If you go off glutens and feel better, not sick, but nothing shows up in your blood and whenever you try glutens again you feel sick automatically- gluten intolerant or pre-ceiliac.
3. If you go off glutens and just feel better, but aren't sick automatically, and nothing shows up in your blood - you are gluten resistent.
The difference medically? If you have ceilac disease and ingest glutens - you are commiting gastro-intestinal suicide. Basically, you could end up with cancer, osteroposis, diabetes, etc. Not everyone experiences severe symptoms or the same symptoms. And ceiliac disease is hard to diagnose. It's also genetic.
Three people in my family have been diagnosed with it now. Aunt K, myself, and my cousin J. If I ingest glutens at all now? I get sick. It tends to take a while to show up in some cases. But I'm sick. My symptoms? Severe IBS, fatigue, physical depression, anxiety, tremor - all exhibited over a period of time and in stages. And it only takes a crumb, the smallest bit to make me sick. Ingesting gluten for me is the equivalent of ingesting arsenic. It is a poison to my system. Which makes work places and church events and normal social events daily obstacle courses. I'm constantly explaining why I can't eat the donuts someone felt the need to bring to work, or the cupcake they put on my desk, or the Christmas cookie they gave me, or the cake they brought to celebrate XYZ occassion, or the muffins...or the pizza they decided to have as a going away lunch or a business lunch or after a movie for a social event or volunteer event. It gets tiring. But I realize, it could be far, far worse. And my diagnosis - sharing that diagnosis with my Aunt, may well have saved two people's lives in my extended family. Because if left undiagnosed - ceiliac disease causes other ailments which do kill you.
I may do an extended review of Billy Elliot at a later point. It's late and I'm tired. Was up far too late last night writing the review of the Buffy comic.
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But what you said about ceiliac disease causing other ailments made me think; aside from worshiping the porcelain god all night after ingesting onions, what else does that do to my system? Again, nothing on the level with what ceiliac could cause, but my digestion's grown a bit more delicate as time has gone by and I have to wonder if the times when I have ingested onions has contributed to that. It's certainly made me more aware of other people's allergies and food-related conditions.
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They result in her throat swelling up. I have a friend who is similarily allergic - her face swells up and she breaks out in hives. A restaurant told her that a dish she ordered did not have any nuts. But she had and immediately reacted, luckily she'd taken benadryle earlier so - did not need a shot or to run to the hospital. When she asked the waitress what happened -the waitress stated, well the chef occassionally puts pastichos in the food from time to time. (Ugh.)
With ceilac disease - people confuse it with wheat allergies. They aren't the same. I can't digest anything cross-contaminated with wheat, and can't do rye, barley, or oats (if it is cross-bred with wheat, you have to check.). So many gravies, sauces, medications, soups, beers, beverages - have modified food starch or wheat flour added to them as a thickner or nutrient. I have to read the lables of everything and check everything.
Vegetarians have it hard to - because here's the thing, once you go off something completely - you're body can't handle it if you start eating it again. A vegetarian will get sick if you use the juice from meat in a gravy or sauce or use fat (lard) to cook with.
Being sensitive to these issues takes work, it means you have to be on your toes and think about it. And people don't like to do it. But since becoming ceiliac, I've become hyper-aware. My sister in law has a bizarre diet - she can't eat onions, certain types of spices, mushrooms, and numerous items I can't remember, wine, beer, caffeine (I can't have caffeine either), and combinations of things - or she will end up with severe migraine headaches and get ill. She tends to make her meals and will ask at restaurants what all the ingredients are.
You are fine when you are making your own meals - it's social activities that are difficult. NYC is getting better - the restaurant we went to for lunch today had a gluten free menu and gluten free bread sticks. But I work in Jamaica, Queens - and it's not an upscale nieghborhood - like Manhattan, so doesn't have gluten free menues or that level of awareness - so I can't go out to lunch with co-workers without taking my life in my hands or my health at the very least. I used to - and got tired of getting sick afterwards. They don't get it.
Why can't I just eat the salad. Because the salad has glutens from cross-contamination, salad dressing, etc...if it is prepared in a pizza paralor.
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I was lucky to have someone take the opposite position: I was up for a job promotion and my boss asked about my degree, and I shrugged saying that it was a BFA (Bachelor of Fine Arts) which is heavy on studio arts without any language or science or math... etc. But he said no, finishing college with a degree is the bottom line, it totally counts, and makes all the difference.
It seems good to have your celiac disease well defined, seems like that is important so that it is on your emergency medical information (in case you are unconscious after an accident or something). And I'm glad you have helped family members figure out what is making them sick! That is huge!