Rusla
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Aauugh!
Here's a funny one... I have a cousin - great big guy, Marine - who went to give blood one time and got this new girl who was very nervous. He talked to her in soothing tones and tried to encourage her. She stuck him... nothing. She apologized profusely, he reassured her. She tried again... nothing. He's smiling, telling her it's okay. She tries a third time... nothing. Pulls out the needle and he said blood started shooting everywhere. He claps a hand over it and she runs off crying in a panic. Supervisor has to come out, bandage him up and take the blood. He was laughing about the whole episode, but I sure wouldn't have been!
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When they first came out with the style of needle they use now, a new girl was attempting to take my blood. She got the needle in and when she put the tube in the needle unscrewed into my arm. Well blood was flying everywhere and she went white as a bleached sheet. She panicked because she didn't know how to get it out and called the supervisor. Blood was on the walls and the ceiling, by the time the supervisor came in I had the needle out and a cotton ball on top of it, the supervisor asked if I was alright and wanted to lie down, told her I was fine but they better have the lab tech lie down instead.
Rusla
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Same here. Evidently, I have tiny veins that like to hide and roll. I don't mind the stick. The thing that gets me is once the needle is in, when they've missed the vein or it's not bleeding, they start rooting around. I get kinda cold all over and feel kinda sick. Once, I even told a tech I'd rather be stuck multiple times than to dig around with the needle.
Oh! And here's another thing: When the nurse first took me back, she asked what the visit was about and I told her briefly about my struggles and that I suspected gluten and/or casein intolerance. She said - and I kid you not - "Well, those conditions are very rare." I thought I'd heard her wrong. I said, "No, I don't believe they're rare... just under-diagnosed."
** shakes head **
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Geez, many have Casein intolernaces my sister, myself and my younger brother have not only lactose but casein problems. Now, I only go to one place and only two people there will ever attempt to take my blood. My veins are divers and roller, along with being thin. One time in the hospital the nurse told me she had been taking blood for 20 years, I told her that I have had my body25 years longer than she has been taking blood, at that time. I know my body infinitely better than the length of time she has been admiring it so, she has to do it my way or no way.
Rusla
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My DH was always in the form of blisters.
richard
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I get these things below my lower lip, between the lip and the chin or all along the bottom of the lip. They look like clear acne or little blisters that don't break. They itch but don't hurt. They appear then disappear in a few days and sometimes it takes even longer. Would these be DH?
Thanks,
Rusla
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Hey Lynne - is that kind of like the Bless His Heart clause? Let's try it... ---
My husband called me a hypochondriac, bless his heart.
Kind of makes you almost feel sorry for him doesn't it...?
And with the notebook thing, it's been all I can do not to start a whole organizational system. If my husband thinks just visiting a message board is obsessive, he has NO idea what is going to rain down if I test positive.
I never thought about seeing a neurologist for the balance issues. I'm definitely going to do that. Gluten ataxia and all that stuff is really scary. I've already got mobility issues, and to think that it could have been gluten that has had a huge role in it makes me even more determined to get a diagnosis so that if I do have it, I can help my kids prevent some of this stuff.
It's so amazing to me that gluten can do so much damage in so many body systems and so many areas of your life. It makes me sick just to think about it.
I do hope that I end up being celiac just for the fact that I can DO something about it. Because if it isn't celiac, then I don't know what to do for my kids. Because we've got so much bad health that runs in my family. If it's not celiac and they can't do anything to predictably prevent all the problems that just "run in the family", then it's like all these types of bad health are just lurking out there. If it's celiac, we just have to slay one big dragon. If it's not, and it's just bad family health, it's like there are a dozen little dragons. And I know that not every bad health thing that can happen is related to celiac, but you guys know what I mean.
Nancy
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Nancy,
I know most people think it would be ridiculous to say "I hope I have this disease." But I know just how you feel. At least if I test positive it will explain numerous other things and I can do something about this. When you don't know what it is and the doctors all sit about with their fingers in their ears saying: "It is all in your head, " a positive result will show that is isn't. When things don't show up after awhile you start thinking that you are as nuts as they say you are and when it shows up I have the joy of saying: "see, I was right." I did that with my thyroid antibodies test which showed that the TSH was lying and the fact I had nodules.
Rusla
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That's what I'm saying. Insane.
I had a GP put me on Biaxin for a flu-like illness. And me with years history of IBS. Biaxin is one of the worst antibiotics you can give anyone with digestive issues. What are doctors thinking?
I've been thru six different GIs and none of them have ever tested me for celiac disease. Go figure.
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I hate to say this but I don't think many doctors think. The only ones who seem to be thinking around here are my dentists. I find the GI's I have dealt with around here are insolent, egotistical self-centered jerks. They hate anyone who does research and ask you when you got your medical license. The thing is they say more than 80% of doctors finish last in their class or the majority finish near the bottom. I think I have seen most of that majority in Alberta.
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thanks to everyone for coming back to me.
i did get treatment for helicobacteur pylori EvilGut but it did not do anything. when i had it before and they gave me drugs for it it cleared up.
i finally have my appointment for my endoscopy - 20 December. a nice christmas present.
i am so keen to try a gluten-free diet but i dont want it to interfere with my results of the endoscopy so have to wait until after 20 December.
this site is amazing and i feel that the support and "love" is great. just what we all need. its also full of information - much more informative than my own doctor.
someone posted a link to a site to check the main symptons of possibly being a celiac and i was suprised to find that i ticked around 80% of them - in particular odd ones that i had not thought of such as decreased ability to clot blood and very dry skin. i also read an article on the same site which discussed a physician having a patient who was obese and had celiac. i always thought that having celiac was only for skinny minxs but this is not the case.
thanks again for your support. will try to hang on in there until 20 December.
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Your symptoms and my symptoms are very much alike except I have a whole pile of others including extreme tooth loss and decay etc. I get my results tomorrow and I worry that I didn't have enough gluten before the test. A friend of mine who I am positive has Celiac just had the test went gluten free three days before the test and it came back negative. I at least ate some gluten on the day of the test.
Good luck on your endoscopy, I do know it is a coouple of months in the future. Around here to get anything done or see a specialist is more like 18 + months in the future..
Rusla
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I tolerate goat milk bettter than cow milk, too. The only bit of milk I have nowadays is a bit of goat cheese at breakfast, actually. Drinking goat milk wouldn't be an option for me, because it still does have lactose which I also can't have, but cheese is ok.
Pauliina
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I do not get the screaming "cheese bowels" pain if I have goats milk cheese or rice milk.
Rusla
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I think we're partly dealing with a communication issue here. They say "web search" and we imply one thing when they may mean another. They DID research their product ingredients. It's easy to make assumptions about what people mean in their emails, but I think it comes down to a "we're not familiar with this sort of thing, and want to answer well, but don't know how". It's like the first few days on the job - you may know about some stuff, but not others, and if someone asks you a question, even with research, if you're not familiar enough with what you just started working on, your answer may sound a bit silly to an expert.
Personally, I find the really dumb responses to be the ones that say "we don't know what's in our source ingredients, so can't tell you if it's safe or not". I mean, how do you NOT know what's in the food you are selling and are responsible for?!
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If the Asian Food Company has over 4000 brands of food it would behove them to have a binder with each food and it's ingredients listed. Most companies that sell food do contain a book with such things in it if they don't then they are plain stupid. No one can possibly know off the top of their head all their products and what is in them. It is absolutely absurd of them to think that was the question. But when I ask a company if any of their foods have gluten in them, I do expect them to answer with which ones do or don't. Just like restaurants that also have gluten free menu articles need to have it available to all patrons or at the very least the staff. If the food company wrote to me and said: "This may take a few weeks because, we have x many products and it may take three weeks for me to get back to you because we need to go through all the lists. That would not bother me in the least nor do I think it would bother others who are asking such questions. It would be beneficial if all food companies that have websites, list their products and when you click on the product it gives the read out like no eggs, dairy, nuts, or gluten at the top and then the list of ingredients. There are more than celiacs who read labels, many of us had to because of other food allergies...such as msg etc.
Rusla
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Thank you! I trust your opinions! I have been gluten-free for almost three weeks now. I knew I had it before I had the biopsy. Too bad no doctor ever mentioned celiac disease to me in all these years. I would have researched it and knew the cause for all my problems!
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I hate to say this but many doctors, including specialists know less about this diseased than some of us freshies here do. Not only that but some of them hate people who do reseach like I do and some like to believe that there is no such thing. I had a doctor like that who said he didn't believe in Hypoglycemia.
Rusla
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It will they will just need to understand. It is not an easy thing to have to explain I am already getting frustrated myself. Hopefully you get your results back soon. I decided to just try the diet and skip any further testing. My enterolab results are enough for me and if the diet works I am sure that what it is.
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Wednesday morning I get them back. Right now the tooth which caused me trouble for four weeks was pulled over a week ago and I am still hurting and infected. I wonder if the gluten haas anything to do with that. I have lost 11 teeth in less than 5 years.
As for my mother she will have to learn if she wants me to go out to dinner with her sometimes and I have Celiac, we will have to find a place that is celiac friendly. That is hard to do at best around this city.
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I am not confirmed celiac, yet. However, I will find out Wednesday. Now in the last 6 years I have gained 175 lbs and I don't eat a lot of bread, pastries or pasta.. Now earlier this year they finally discovered I was hypothyroid and I have lost 11 teeth in 5 years so, we are now doing the Celiac test which I had requested along with the thyroid test when they refused to listen to me. I used to be a model and wore size3- 5 clothing now, I am far from that. I was concerned for the blood test that I didn't have enough gluten that day for the test. My stomach has been burning since last night and I am not gluten-free yet. I too was a thin eat anything kid and a thin adult until the last 6 years.
Rusla
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I have lost a phenominal amount of teeth in the last five years. Now, I have had an ongoing tooth problem for over a month. One filling came out, they drilled deepered and put in the second one and then the tooth instantly absessed. I am on antibiotics and the tooth was pulled a week ago and my mouth still hurts and there is pain where the tooth was, they have x-rayed it to see that it was all out. Do or did any of you have these kind of probleems before or after gluten-free?
Also before the discovery of the Hashimoto's my urine had a nasty peculiar smell to it, there shows no infection per se. However, even with the synthroid it has not disappeared. So once again the question is the same as above.
Thanks,
Rusla
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blood tests came back slightly high, they said it was borderline, but they would consider me not. this was with a dr i wasnt too keen on (he said because everything is normal, its all in my head). i see my GI dr tomorrow so ill get some more answers. but i know how my body feels with gluten (like the gluten i ate yday from bbq sauce...ugh).
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What I hate and find quite often, and this included and insolent arrogant GI I had been to also If he would have done the tests I asked he would have found the Hashimoto's antibodies. Most doctors who are male treat female patients as neurotic imbeciles. If you were a man he would be all over it like a bad rash. Instead even though it was borderline it is all in your head. No, it isn't in your head, it is in your blood.
Rusla
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Thanks, I'm thinking of printing that off to hand to my brother next time he tells me Reliv will cure me or able me to handle gluten again.
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Sounds like your brother and my mother could be friends, nettiebeads. My mothers's favorite line is to anything you shouldn't have that is harmful to your health is:"that little bit won't hurt you." That is because the doctors have told her to quit eating high fat foods etc,. for her cholesterol and other health matters. She won't because she says they don't know what they are talking about.
Rusla
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I know Rachel has said that her TMJ quit when she went gluten-free.
I have had TMJ for well over 25 years, everytime I go to the dentist for work they have to put me out because of the pain from the TMJ. Now, I have had to go to the dentist 2 times a week in the last month. First we filled a tooth and the filling immediately came out. So, he drilled deeper and put a bigger filling in, which is the way of what is left of my teeth that I have left. Well that absessed instantly to such a painful point it had to be pulled out. I am still on antibiotics and it has been over a week since it was pulled. I have been back twice last week and going back today again. My mouth hurts so much and I still have pain in the place where the tooth is missing. This is the longest this has ever gone on for with a tooth. I am concerned because I have lost over 11 teeth in less than 5 years and 4 of those teeth were last year.
I was wondering if any of you confirmed Celiacs have this lasting pain problem etc., before or after you have been gluten-free.
Thanks so much,
Rusla
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I am kinda new to this to but I get a rash on my hands and sometimes patches on my face after gluten ingestion. I also have hypothyroidism so there is probably a connection. I am not Celiac (that i know of yet) but I am gluten intolerant.
Hopefully someone with more knowledge will be able to help you out more.
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Thanks Melisadki for your answer.
I am also severe asthmatic, have arthritis and have lost eleven teeth in less than five years and four of those teeth ended up going in one year along with numerous fillings, crowns and caps.
The rash thing has started this year, but the pains in my upper stomach is old news. I don't know how long it takes to get results back. The biggest fight in my family will be from my mother if I have it, her theories are "That little bit won't kill you."
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Here goes. After many years of fooling around they finally did what I told them and did a test for Hashimoto's disease. Well even though my silly TSH showed normal, I had nodules on my thyroid and 3.5 times the normal amount of Hashimoto's antibodies. I have gained over 175 lbs in the last few years and I don't eat a very much and everytime I eat bread, pizza, or anything with wheat, I can't keep my eyes open within a half hour. I have had pernicious anemia and headaches are a way of life for many years now. My feet have been swelling so huge I can't get my shoes on half the time and I wish I could put this gas in my vehicle, it would save me a ton of money. Now I have noticed after eating things with wheat, not just the regular bloating and burning pain but now within a few hours I will get weird little blisters or lesions on my cheek or around my mouth on my chin. They are tiny little blisters that can get bigger.
I have demanded a celiac blood test because many years ago an allergist said I was a latent reacter to wheat because of the tiredness, pain and diahrrhea.
I am on synthroid for my hypothyroidism.
Now if any of this sounds familiar, I would appreciate others telling me their experiences on this. I am anxiously awaiting the test results.
Thanks,
Rusla
Canada
Ugh--doctors!
in Doctors
Posted
Oh believe me I have had problems with doctors. Do I tell you about the one who let me almost die from pernicious anemia because he was too lazy to do a blood test and tried to tell me I had the flu for a year or menopause and it was neighter. Or about the GI who only wanted to do a blood marrow test, wouldn't tell me anything and hated that I did research but had me black balled by all the GI's in the city before he moved to the US. About all the doctors who would only look at my TSH on my thyroid not the nodules or the 3.5 times more antibodies than what you should have for Hasimoto's. The fact none of them would do anything about either thing because they want them to get bigger instead of trying to shrink them. That they tell me now because now I have gone through menopause that it is all in my head and it is just menopause. Not one of these doctors would talk to me or return calls.
So, rant on.
Rusla