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lily80

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  1. Hi everyone,

    I would just like to say that we all seem to have had similar experiences over the years trying to find out why we all felt different, bloated, ill, psychopathic, being labelled a hypochondriac, and simply misunderstood. It took me years to find out why I was suddenly constipated and then had 'the runs' quite badly. I laugh now at all the times I went to doctors with dermatitis, etc, etc, only to be told that there was nothing wrong, and to "be a good girl and go home and rest". I can laugh now as, I have the last laugh being diagnosed as a chronic celiac sufferer. In terms of the depression, I suffer that too. I hate having to explain to most people that I do not have a communicable disease that can be caught by simply being in my company. I have made it my ambition to try and educate the rest of the population about celiac disease, and that it has nothing in common with leprosy or SARS! :lol::lol: For all of those of you who are recently diagnosed, this is a life changing event. On the positive side, you WILL feel better, this is NOT in your head, you are NOT feeling ill to gain attention, you are NOT crazy! On the negative side, there will be persons who will not 'get it' and still try and feed you cake, biscuits, etc. You will feel isolated and a bit lonely sitting in the corner with your gluten-free lunch, trying to explain to your colleagues that you are not on a diet, but have dietary issues. Sorry, I sound very frustrated, but I am! Keep posting your messages on the board, and ask questions. It has been my experience that this is an individual thing, and some will have similar symptons and really suffer once they ingest gluten and others will not. I have found going to the gastroenterologist somewhat unpleasant as all he does is lecture me about my weight. He does not suffer celiac disease! I would also like to know if any of you have been diagnosed with other medical issues that are related to the celiacs. I have been diagnosed as having Osteopenia, which is the prelude to Osteoporosis. At the ripe old age of 35, this is a bit scary. I have also been told that having this disease also places us all at a 50% more chance of developing soft tissue cancers such as stomach, and bowel to name a few. Has anyone else been given this advice? Did any of you have to see a dietitian upon being diagnosed? I would like to know and if this was helpful. Talk to you all soon.

  2. Hi all,

    Thanks for being so open and honest about how you all feel. We are a minority group whether we want to be or not. I get very depressed at times with having this affliction, but I have come to realise that since my diagnosis that nothing will ever be the same, except that I am now in control. I know why I felt physically ill for so many years and that the medical profession, as clever as they think they are, miss diagnosed myself and so many others of you for so long. The simple fact is THEY DON'T KNOW!!!!!! We need to band together and keep this site going for support. At times this site is the only thing that keeps me from being committed. :lol: Thanks so much to all of you. :D

  3. Hi everyone,

    I have looked at this message board for months and have finally need to have my say. I live in Australia and was diagnosed with Celiac disease in November 2002. Prior to diagnosis I was dismissed by the medical profession and it was a chance meeting with a surgeon who persuaded me to undergo a biopsy. Surprise, surprise it showed I have celiac disease. I still struggle to cope with the disease as I have found so many are quite ignorant as to what it is and I think I will scream if one more person states "A little bit won't hurt you"! :angry:

    My biggest issue is the associated weight gain with the gluten free diet. I am 1.59m tall and weigh 80 kgs. I have put on 20 kgs since going on the diet. :( I find that none of the weight loss plans can assist as they all involve food that is inedible. I find diets difficult and exercise is difficult also. I need help. Does anyone have any good advice? Has anyone else experienced horrendous weight gain since going on the diet? I am 35 years of age and weight more than when I was at full term pregnancies with my children!!

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