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tinap

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  1. I should have mentioned that i know for a fact the celiac gene came from my family. Since my daughters diagnosis, my sisters daughter has also been diagnosed. I appreciate the information about periodic retesting but I cant wait a few years to get retested. The mental fog is making me crazy.
  2. I know there are alot of you out there that have been diagnosed with celiacs in a variety of ways. Here's my background - I have a 5 year old with celiacs - positive diagnosis by blood test and endoscopy. I have many of the symptoms of celiacs - which seem to be getting worse (i think because we eat gluten-free meals at home so i eat substantially less gluten but when i do eat gluten i feel real bad). I've had a negative endoscopy and my GI will not give me a blood test because i cant have celiacs - since he's already given me the ultimate test of diagnosis. Whatever..... Are there advantages of a medical diagnosis vs just a dietary response to gluten-free eating? For example - with a medical diagnosis is there a problem purchasing life insurance? Do you get better medical treatment for the other disorders associated with celiacs. And the reverse for a dietary response.....health insurance providers dont know you have an auto immune condition. For women - no additional concern by your dr. that you may develop osteoporosis due to malabsorption so you cant get a bone density test done. I'm going gluten-free 1st of the year but if it makes a difference - I will insist that my general practitioner give me the blood test. Any suggestions?
  3. hi - and welcome. i am new to the board as well. my 5 year old was diagnosed 7/06 with celiacs. as everyone else has stated - it's very important to get started on the gluten-free diet as soon as possible. kids are amazingly resiliant and change is easier for them than for us. i cried for a week thinking about how she would never be able to enjoy a birthday party, a sleepover or the after game pizza. the jokes on me because she is doing great and never missed a beat when changing her diet. she is too young to know what is gluten-free and what is not, but smart enough to ask about everything (away from home) before she eats it. and it's much easier to change her diet now while you can control it and it becomes a way of life. i dont know how parents of pre teen or teenages do it. same as posted above - always have frozen treats on hand. the other kids think it's cool that she brings her own. and i have had a few parents who have said their kids want to bring their lunch to daycare too! i would recommend reading "kids with celiac disease" by danna korn. i also found "gluten-free diet - a comprehensive resource guide" by shelley case to be helpful. and look to see if you have a local support group - they have incredible resources and information. and you will be very surprised how many other celiac kids and adults you will meet along the way. we all help each other during this journey. we've all been where you are now and it does become a way of life very quickly.
  4. I'm brand new to this message board. Let me give you some background - my 5 year old was diagnosed w/celiacs 7/06 (post surgical - who knows when we would have found it otherwise). Since then my niece has been diagnosed as well, so I know my daughter received it from me. I was quite sure I had it based on my symptoms.......constipation, gassy, hair loss, attention deficiency, exhaustion, anemia. I was referred to a GI and I requested we skip the blood test and just have the endoscopy. To my surprise he found no indication I had celiacs. Diagnosed me w/IBS instead. Believe me - I wouldn't wish this disease on anyone - but I thought I had an answer to why I was feeling crummy. Should I have the blood work done? Could I have celiacs w/a clear endoscopy? I would appreciate any guidance you could give me.
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