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  1. Thanks again everyone for your support! I thought I would update where I at with this.... I've had blood tests and I haven't my results as yet... Has ultra sound and ct scans... the ultra sound fount 2.01 lymph node and three other non vascular lymph nodes in right groin and three non vascular lymph nodes in left groin... I have the biopsies on these tomorrow. They found 5 cysts in the liver and cyst on right anexa bulky uterus with endetrial fluid BUT NO MASS OF LYMPHADEMOPATHY So things now really hang on them lymph nodes being begnin .... but there are no masses of lymphademopathy, which is great news! if the nodes are malignant, at least we are on top of things , before they could have been far worst! but Im truly hoping they aren't malignant
  2. Thank you for your kind words... They were very much appreciated... Well I phoned the medical center that I use to visit, and just asked for an appointment with any doctor... I was given a lovely indian woman. and she listened to me... Then went sort of mad at me... she said why have you let this go on so long... I said well the last time I complained about these things, I was told there was nothing wrong... She looked on her computer to see who I had seen, and there was no notes about anything except a sore wrist that I also had.... I said my husband begged the doctor to look into what is wrong with... that Im deterioting before his eyes,,,and this nice doctor said, I'm so sorry, sometimes us doctors need to do more than just listen, we need to act!... She confirmed my suspecions, she said that she believes I well could have lymphomia... She examined me...and also got the opinion of three other doctors, as to what was the quickest roads to take to get on top of everything... She got me in quick smart to an oncologist , she didn't want to muck around..and asked them to see me fast, because there is normaly a long wait...she is sending me for cat scans and biospys.. All she kept saying to me, is.. Im so worried for you this is very serious . And she kept saying WHY???WHY??? have you let this go on for so long?... I told her the truth, I was scared of being called a hypercondriac. Now I am glad that I wrote my thoughts and feeling here, because that gave me the power to make myself go to the doctors. I'm not really scared now of any results, all I wanted was to know....if what I suspected was true...or least to just have those things checked so that I wasn't left feeling I knew all along, and noone would help. So I will cross the next bridges as they come, but I at least feel better that I was listened too.
  3. I have been gluten free now for approx a year, After a new doctor discovered my gluten intolerance. The diet helped me so much, it helped with my rashes, anixety and depression, migrains, and most of stomach pains, and a hored of other minor aliments. So I have been so gratefull for some respite. The thing is, I am concerned about somethings that have been happening recently and I am too scared to go to the doctors, in case they think I am an idiot or hypercondriac, and most times doctors just won't listen or look into problems. So I have cut myself off from doctors, because they don't seem to want to help you.. So I always try to cure myself, so I don't have to put up with them. I had all the pointers of celiac all my life and doctors wouldn't listen to me.. they would always say, it's nothing to worry about, when ever I presented myself to their office wanting help. Till I changed doctors but they are a natural type doctor, who believes in natural remedies, but I find the natural remedies aren't helping, I feel I may need to go to a normal doctor, but I am really scared, not of what they may tell me... because I feel more empowered with information I just don't want to go to the doctors, because they will rush me in and out and not persue or test what I believe to be wrong... In a nut shell.... I feel I may have non hodgkins lymphomia the glands in my the left side of my groin are very very enlarged.. Also just under my jaw and I have a numbness into my jaw and a sort of ache on the left side and swelling around that area in my jaw... I have been having bad night sweats , which for me is unusual, because I am always cold..even on hot days. (I know the sweats could be due to menopause) I have itchiness around the lower part of my back and in my left ear... I am so weak and tired, needing 3 naps at least a day. My eyes are aching. And I just feel blahhhhhh my bowel movements have white mucus, and even a year into gluten free and trying to eat weight gaining foods I still am not gaining and I still have to force myself to eat because I don't have any appetite I know that if I have non hodgkins, the longer I leave it , the harder it will be to combat and it isn't something I can just cure myself of.... But on the other hand I am so scared of going to the doctors and them not looking into things and I will come out feeling ridiculed and stupid for thinking I needed help. What do you all think?... does anyone out there have non hogkins?... and experienced the same thing? are all the symptoms I have written just all part of celiac and something that will pass with time? I seriously need some view points on this.... please help me?
  4. I got a real indication last week at how bad I must look... I was at work, I work at a cinema, and I served a lady, I had never seen or known her and she said to me.... Are you alright?..... I smiled at her and said "yeah I'm alright" she then again said.... Are your sure your okay?... I laughed and said "yeah I'm fine " She then said "Health wise, I mean?....is your health alright?" I found this odd to be asked this, and I said, ohhh I have celiac, guess that's a health problem She said you truly do not look well.... Then the other day my mother in law rang me, and said you need to get more help, You shocking people with the way you look... she said that my sister-in-law who hadn't seen me in approx 3 months, said I was unrecognizable, she would never of believed that the person she saw standing before her was me... besides the drastic weight loss, my mother in law went onto say.... you seem like a shell, you no longer have the glimmer in your eyes, you look like noone is inside your body... well not the person we know as always spirited and enthusiastic, that spread infectious laughter into other people... it's so hard seeing you like this, is there anything we can do to help you.. clean your house?... anything..... we want you better, your so distant ,we want YOU back. If only they knew, I want " ME "back also................... All my friends make comments, and continually ask me am I alright?..... people have even asked my husband am I dying of something? So in answer to your question.... I'm so looking forward to looking healthy again!!!...............because with all these types of comments, I must look dreadful!
  5. A friend in the US sent me the transcript of the Larry King interview... I hope I am allowed to post it here? I am thrilled she is bringing awareness of celiac...But I do hope that she makes it loud and clear that it isn't a lifestyle choice. From what I read in this interview she really did seem to try her best to tell the importance and the sicknesses that come from being Celiac. No matter what... she is making people take notice, and trying to educate people, and we need all the GOOD help we can get in getting the message out... (COMMERCIAL BREAK) KING: Back with Elisabeth Hasselbeck. Her new book, "The gluten-free Diet." And it says: "A Gluten-Free Survival Guide." Now, we think of gluten, we think of wheat, right? HASSELBECK: Sure. Well, it's actually more than that. Gluten encompasses -- it's a protein found in barley, oats, wheat and rye. So it's more broad than most people actually think. So that is definitely a misconception out there. And I -- I truly -- this has been a decade-long process for me. I have Celiac Disease. And I say out of diabetes came that low glycemic index diet and out of my Celiac Disease, I found this all star diet. I call it my diet in the rough because it is something that, even if I didn't have Celiac Disease, like many others, I would follow this diet. KING: So you have to avoid what? HASSELBECK: I actually don't even think of it as avoiding. But for me with Celiacs -- and many do with Celiac Disease -- we, our bodies, it's an autoimmune disease where if our bodies encounter gluten -- that protein found in barley, oats, wheat and rye -- we, our bodies pretty much shut down and fight themselves. What happens is if undiagnosed -- and one out of 133 million people have Celiac Disease. The scary thing, Larry, is that only 3 percent of them know it. Ninety-seven percent of the people with Celiac Disease are not aware of it because of misdiagnosis. They get diagnosed with something else, like I did. You know, over 10 years ago, I was diagnosed with IBS, thyroid issues. I was having infertility problems. People suffer miscarriage after miscarriage, stillbirth. It eventually leads to intestinal cancer. KING: All right... HASSELBECK: So this is something that needs to be treated. But the diet is actually, yes, for people with Celiac Disease. For millions with food intolerance -- and that is up like 25 percent in the past five years. But for people who just want a healthy lifestyle. I mean I'm on this diet before I'm pregnant, during pregnancy and when I'm trying to get back in my bikini to, you know, strut around in the summer. KING: What -- what happens when you're a kind of -- for want of a better word -- victim of it, at its worst... HASSELBECK: If they're undiagnosed or do come across gluten and they are Celiacs, their bodies literally are so -- I mean I was in such pain. And doctors were ready to do surgery. They kept telling me I had IBS. I always say emphasis on the B.S. because that wasn't the answer. It's the -- the equivalent of going into your physician and saying my head hurts and them telling you have a headache. Well, thanks for the information. I was looking for a clear diagnosis. Thankfully, Dr. Peter Green was able to do that for me and run the proper tests. But it took me way too long to get that when it -- the saddest situation, I think, is when you have children who are encountering gluten when they have Celiac Disease and their bodies aren't growing. Your intestines aren't able to absorb any nutrients. So you are then predisposed to all of this, you know, intestinal cancer, etc. KING: Is it... HASSELBECK: But they're in such pain and deprived of nutrients and they don't grow. KING: You call it an allergy, but some say it's an autoimmune disease. HASSELBECK: It is an autoimmune disease. It is absolutely a disease... KING: It is? HASSELBECK: And it needs to -- we need to get that diagnosis percentage up drastically, because this is actually -- it's so preventative. I mean you have people who aren't celiacs on this diet because it improves everything from ADHD to ADD, depression, energy levels, metabolism. This is a phenomenal way to eat. I was so thankful to find it. But when people do encounter gluten who are celiacs, with it leading to diabetes, thyroid disease, intestinal cancer, it ends up costing their body so much more, but also our medical system so much more down the road. It's a preventative diet. It works incredibly well. I have never felt better in my life. And certainly when I proposed the book, it wasn't the one that people thought I would write, but it is one that comes -- literally comes from the gut and the heart. And I interweave throughout the book easy tips. KING: Can we test children as to whether they have it? HASSELBECK: Absolutely. And if you -- if your children are exhibiting symptoms such as either listlessness or irritability, if they have a bloated belly, if they say my -- my tummy hurts, it's most diagnosed in that first year, when parents are introducing food and you're -- you're still vigilant about everything they put in their bodies. It's in the years thereafter, that two to, you know, the teenage years where you're not really sure what's going on. If they're not meeting their growth benchmarks, demand a celiac test from your doctors. And if they have it, if your child has it, or a sibling, your chances of having Celiac Disease is one in 22. So you should get tested, as well. KING: Is it... HASSELBECK: It's something that, really, we need to improve upon. KING: Is it inherited? HASSELBECK: It is inherited. It's a genetic disease. You can get tested both for the gene. You can have an endoscopy. I have the gene. You know, I will have my family tested and my kids tested down the road. It's great information to have. We are in a new era of preventative testing, so you know what your gene code says, but also preventative eating. I mean I don't think of it as replacing anything and I -- I interview people throughout the book and give social tips. But I -- there are so many that are on it who don't have celiac, like I said, that do it just because of the health benefits alone. So it's not about removing, it's about replacing with something much more powerful. KING: One cannot deny an important, important book. Thanks, Elisabeth. HASSELBECK: Thank you, Larry. KING: See you soon. HASSELBECK: OK. KING: Elisabeth Hasselbeck, co-host of "The View" and author of "The gluten-free Diet: A Gluten-Free Survival Guide," with a forward by Dr. Peter Green. HASSELBECK: Thank you. KING: Thank you, dear.
  6. I have to make mention here, of my doctor... I feel lucky and blessed to have found them, and who knows?... maybe I was pointed towards them for good reason? All my life I presented symptoms of celiac, I never knew anything about it, but I would present to my GP with all the symptoms, they would do a blood test and say, yeah some strange results and things were left there... without getting any help at all.. The past year has been a nightmare for me, with depression, anxiety, sickness, headaches, pain . I got to the point that I just wouldn't be bothered going to the doctors , because I felt it was total waste of my time, money and the doctors time... But it was apparent to everyone around me, that I needed some kind of help. As I lost so much weight and depression was taking over... So I looked on the net for a clinic that had a psychologist, I believed that was what I needed. I made an appointment at this clinic "Invitation to good health" A nurse spent an hour with me, interviewing me, and taking all my health details from the past. Then I saw the GP... he knew immediately what was wrong, in fact he pointed out symptoms to me, that I didn't even recognize as having, like skin rashes, feeling cold all the time... etc etc.. I just thought they were normal...that everyone was like that! He ordered blood tests, but I had to wait two months before seeing the doctor again to get the results, but in the mean time he told me to go gluten-free and soy and dairy free.. I did as requested and I was astounded at the difference in me... the way my brain cleared of being foggy, I was brighter, happier and felt good! I returned to get the results, and every thing was at the lowest level it could be, vitamin B, D calcium, zinc, iron etc.... he was very concerned and didn't want to bombard my system with vitamins because they would only make me feel ill... so he gave me zinc to start with but then this past month, things changed... here I was completely gluten-free , loosing 2 kg a week , and depression anxiety was taking hold of me in a huge way... headaches returned . I was feeling angry sad distant I hated life ... I knew I needed to get help quick, because I wasn't sure I could go through another day without going over the edge of depression and weight loss.. I was desperate, and rang the doctors office, my next appointment wasn't for another month... But I said please can you get me in..... They were so accomadating , they said we can try and squeeze you in between patients today... I couldn't go because I had to go to work, so they put me in the very next morning... Mind you.. I rang my old ordinary GP first, begging to be seen... and they couldn't get me in for a week... and I knew it was useless seeing him, cause he is not at all interested and just wants his fee and sends you out the door... So I went to invitation to good health the next morning.... my husband went along with me, because he wanted something done for me... he has watched my decline and he can't help me... The nurse took me in immediately and went over what has been happening , weighed me and saw the weight I had lost, I guess she also saw my depression and lethargy. The doctor came in and they spoke to me about having a bio chemist make me up some capsuals of vitamins etc... that would suit me and meet my own personal body needs ... I would be taking 10 per day.... I hated the thought of that... because I don't like taking tablets... But I know if I am going to get my body in any type of shape to cope, I will need these to help me... The nurse also made an appointment for me to see their psychologist, to help me deal with the anxiety and problems... they don't want to give me any antidepressants, and with couselling we maybe able to tackle the issues that are preventing me from eating and the sadness and anxiety I have. Next is an appointment with the psychologist, doctor, nurse, dietician and me.... and a plan will be made up for me... to help me mentally, physically and help me with eating. The thing that amazes me... is they truly want to get me on the track back to life.... They don't watch the clock and say your 5 minutes is over.. we don't know what to do for you... get out of here so I can see the next person.... They spent time examining and asking questions and explaining... they give me a direction to follow to help me on the right path to helping myself. They try and find ways of helping me with the costs of getting well.... As I sat there with the nurse, all I could repeat over and over.... was THANK YOU... THANK YOU..... THANK YOU.....my eyes were filled with tears, because the emotions of getting help were all new to me.... No one cared , noone bothered to point me in the right directions to help myself....till now.. So at last I now have hope... I feel I am in the hands of people that really want to save me and help me.... I thought I would forever be in this black hole till it took my life... now I see a glimmer ahead, and a rainbow to climb
  7. Many here also have problems with soy and dairy and even Tapioca, especially in the begining of going gluten-free I was also lead to believe that you can drink coke, but can't drink Pepsi, due to ingredients I know Prawn Crackers has tapioca flour,Skittles has soy , then the ice cream which has milk in it. As for the burgers, I personnally know I can't eat anything that has been sprayed or the cooking area has been sprayed with canola spray...and can't eat off grills or Bar B Q's where other things have been cooked on it... It truly is a matter of examining everything.... and eliminating a lot...seems I am eliminating everything , except for fresh veges, fruit, and meat...Because I have learnt that there isn't a whole lot of other items out there I can trust! I could so relate to what you said about the fact that it gets to the point where you just couldn't be bothered to eat any more...it does become all too hard...I am down to 36kg I continue to loose 2kg per two weeks , and I have been gluten-free for 6 months now, but really what is the alternative? To eat gluten and suffer pain and sickness and mind altering depression, tiredness anger , etc etc... or just depression because you are bloating and depressed about what you can eat...? I thought the idea of seeing a counsellor at school was a great idea, they may have ways to help you cope at college. But please don't drop out... don't let having Celiac have that kind of power over your future.. A trick that I use, when I get down about things, is tell myself, it's only food... don't let it control your life, do as you should.... you have many other important things in life to be grateful for... people that love and care about you... you have all your limbs, so you can function....and get around . I know that sometimes it's easier for us to dwell on what we can and can't do, all because of food....and the way it effects us. And we are in that mind set, because of the way it effects our brains and body. But sometimes we need to look outside the square and try and appreciate the things that are important . Like the little things that do make us smile when we are low and depressed and angry and in pain.
  8. I worked out one of the results A high TSH result often means an underactive thyroid gland that is not responding adequately to the stimulation of TSH due to some type of acute or chronic thyroid dysfunction. Rarely, a high TSH result can indicate a problem with the pituitary gland, such as a tumor producing unregulated levels of TSH. A high TSH value can also occur when patients with a known thyroid disorder (or those who have had their thyroid gland removed) are receiving too little thyroid hormone medication.
  9. I really don't understand much about blood tests and what they mean to your actual health.. I have some very weird results....if anyone can help me understand them and what they mean , I would appreciate it... MCV 99.3 range (80-100) MCH 32.05 range (27.00- 32.00) lymphocites 4.01 range (1.0-4.0) TIBC calc 46 range (46-77) my iron should be between 40 - 175 and mine was 6 My zinc level should be 60-130 my zinc level was 10 Vitamin B12 should be 200-1100 mine was 202 TSH 4.00 should be (0.40- 3.50) Free T4 13.0 should be (9.0-19.0) this result looks okay to me? chloride 109 should be (95-110) eGFR 85 should be 59 total protein 69 should be (65-84) CK 40 should be (30-150) I seem to be on the low scale of this? ttg iGA/igg 3 should be (0-20) okay they seem to be the only ones of concern? My doctor said that I am lacking alot of essential vitamins.... but because of my anti-immune system, and the fact I can't absorb things.... He doesn't want to throw everything into me at once, because he believes my body just couldn't take it... so he has started me on zinc for a month, and will then redo the blood tests to see if it has changed any of the other results... Can anyone explain to me what these resukt could mean to me health wise?>
  10. This is so strange that many have it....I have had it all my life... I also have a thing called spina bifida oculta, where one of the bottom vertibra didn't form properly it doesn't effect me in anyway...but it never ceases to amaze me how so many ailments celiacs share..
  11. Thanks Mushroom..............Well apparently the doctor mustn't want me to have the blood tests... because they still haven't emailed them too me... Under the privacy rights, I am allowed to have a copy of the report, A solicitor friend of mine, who actually defends doctors, told me that am in my rights, I may have to pay for a photo copy of the report, but I am well withing my rights to have it.... So that's how the law stands on it.... I can understand that doctors may not want a patient to misinterept things in it.... But all I really want is some real indication to the levels of certains things... to see how low they are?... and look into being able improve my vitamin levels with things I eat. Did anyone else have this kind of trouble getting hold of their blood tests results? It's clear that Mushroom didn't have any problems in obtaining records... Maybe I need to email them and ask again.... So they have to reply to the email?
  12. I am wondering if any other aussies have the same problem as me?...... And that is getting your blood tests results?............... My doctor did do a very comprehensive blood test on me, checking everything.... He told me they found that my thyroid is not functioning , that my blood was high in copper, but the levels of zinc were very very low...that I am swamped in estrogen , I asked about my B levels... he said they are very very low extreamly low...he said that the tests show I cannot tolerate gluten or grains... that my auto immune system is fighting my body.... He said he can't place me on a multivitamin regeim as yet, because my body won't tolerate it, he said we have to go slow and steady, and introduce each vitamin bit by bit over time... for two months he just wants me taking zinc, plus my normal gluten free, dairy free soy free diet, and then he will check the levels again to introduce further vitamins What I am wondering is......................... What the blood tests levels on different things are?... All I have to go by is what he told me... no numbers to check anything... I rang their office afterwards and asked if I could have a copy of my blood test, because I was asked what numbers am I showing?.... and I have no idea?...... So could I please have a copy of the blood test.... I was told that the doctor has to give permission... and if I am allowed , they will email it to me... Well they didn't emailed it....So I am guessing he wouldn't let me have them? I am wondering if it is common pratice here for patients not to get copies of their blood works... and how do I find out just how low these results are?........... I'm kind of feeling frustrated here..... Everyone else seems to get their results and know the numbers ... I have no idea what so ever... I don't know how deep in a danger zone I am.... or even if I am really in a danger zone?.........
  13. Its a shame noone has answered this as yet....................because I too am going to see my doctor, and wanted some good question to ask, so I would leave more informed... But I guess it's hard to answer this post due to everyone having different ailments, and what is a suitable question for one person may not be suitable for someone else?
  14. hmmmmmmmmmmm I am thinking it is something in this part of the day... Smelled hot gluten, but moved right away. 3 minutes of exposure. Grocery store. Booked it through the bakery. Lady cooking something in the meat department. Smelled good. Felt sick. avoided the smell. Held breath through flour aisle. Yawned and yawned. Especially feeling sick and then started yawning... I'm thinking it may have happened before the flour aisle? It's not fair and not right!..............When you get glutened this way, It sucks.....and especially having to suffer for days to come because of it... and I agree with you... that gluten man freaks me out too...lol.. it's amazing how you can even hate a picture of wheat!............I wish there was something to take away the pain... I know how depressing it all becomes... and how sick you can feel... We need a magic way of thinking, when this happens to us, to help us get through it............. hugs go out to you... and know I understand!...
  15. Rachell, do you not feel pain after eating gluten?...........don't you get a foggy head?.. or headaches? or stomach pains?... or bad gastric? Cause I can assure you, if you keep on eating gluten, you will regret it, you will end up with all the above and maybe worst... You don't want to put yourself through that do you?.........having to go through pain and agony and mind altering problems , even from a simple accidental glutening?................ It's hell............and I can promise you , you will not get a moments rest from it..... Maybe it is easier for me to stay the hell away from gluten, because of all the damage and pain it has caused me..and continues to cause me, even looking at a picture of wheat gives me the heeby jeebeys.... I hate it, because of what it has done to me...IT IS POISON!.......... Maybe each time you grab for the gluten goodies.... picture it as a nail in your coffin?... not as yummy food... but as nails...placing you one step further to bigger problems......... Please sweetie..........look at the posts here, the pain and agony so many endure..........Why do you want that for yourself?.......... And when you look at gluten free stuff.........just tell your mind that it tastes great , and there is worst things you could have to eat.....instead of yummy fruits and vegetables and meat!... it's crunchy full of goodness... Please Rachell... be kind to yourself........... I must say though, when my family sit there and eat all the things I once enjoyed, I do get a little jealous, but that soon disappears when I think about the pain it causes me...........just replace the want and need with the thoughts of most excruiating pain ............because that is what will happen if you eat gluten!
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