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- joleenrae replied to joleenrae's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5+ bloodwork - endoscopy.. then + bloodwork and another + bloodwork.. next endoscopy??
We have been tested and tested negative. But we have not done the gene testing. -
- cristiana replied to sillyyak52's topic in Coping with Celiac Disease12Family education
So true, @trents, I was a skeptic myself! -
- trents replied to sillyyak52's topic in Coping with Celiac Disease12Family education
Although I disagree with interjecting the element of dermatitis herpetiformis since this is not a real issue for the OP, I think Rogo72 gives good advice about how to navigate social situations as a celiac when finding yourself in unsympathetic company. It requires developing somewhat of a tuff skin and holding your ground in order to be safe. The psychology...- 1
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- EricaFilpi replied to Sicilygirl's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease4Enegy level extremely low
Hey SicilyGirl, I feel your pain, I am 51 and was diagnosed in August with Celiac and actually had to have iron transfusions because my iron was so low. I never had energy, going to one store wiped me out, it was horrible. Then the weirdest thing happened two weeks ago, I realized I had energy when I was talking on a phone and moving heavy Christmas... -
- Rogol72 replied to sillyyak52's topic in Coping with Celiac Disease12Family education
@sillyyak52, If it makes you feel any better, I have a sibling who thinks the dinner table (at fine dining restaurants, and less formal pub grub settings etc.) is a personal buffet table and dips into the food of whoever is sitting beside or opposite to them just to get a taste (no plate is safe!) ... never asks for permission ... and has no consideration...
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We have been tested and tested negative. But we have not done the gene testing.
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Although I disagree with interjecting the element of dermatitis herpetiformis since this is not a real issue for the OP, I think Rogo72 gives good advice about how to navigate social situations as a celiac when finding yourself in unsympathetic company. It requires developing somewhat of a tuff skin and holding your ground in order to be safe. The psychology of these situations is that family and friends try to make you as the celiac feel that you have a mental problem rather than a medical one. The fact is, they are the ones with the mental problem (ignorance and arrogance). It helps to avoid the brow beatdown to reframe it in that sense. But at the same time you must avoid the temptation to develop bitterness toward them which will destroy relationships. Rise above that and keep this one issue in its place so that it doesn't commandeer the whole of the relationships involved. As I mentioned above, I'm sure we can all remember times when we misjudged others because we were ignorant of the facts. One thing that sometimes happens in the celiac social experience is when some of those who were skeptical and critical of a celiac friend or family member find out they themselves have celiac disease. Boy, how that can change their attitude! And keep in mind, some studies have shown that almost 50% of the first degree relatives of those with celiac disease will themselves develop celiac disease. So, @sillyyak52, you may have the last laugh!
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By EricaFilpi · Posted
Hey SicilyGirl, I feel your pain, I am 51 and was diagnosed in August with Celiac and actually had to have iron transfusions because my iron was so low. I never had energy, going to one store wiped me out, it was horrible. Then the weirdest thing happened two weeks ago, I realized I had energy when I was talking on a phone and moving heavy Christmas boxes around like they were nothing, and then I ran off to make dinner. Talk to your doctor about your concerns and give yourself some grace. -
@sillyyak52, If it makes you feel any better, I have a sibling who thinks the dinner table (at fine dining restaurants, and less formal pub grub settings etc.) is a personal buffet table and dips into the food of whoever is sitting beside or opposite to them just to get a taste (no plate is safe!) ... never asks for permission ... and has no consideration of gluten cross contamination even though I've explained it diplomatically with articles, pictures of dermatitis herpetiformis (which I've had for years) like @knitty kitty and I both suggest you do. I avoid that sibling at restaurants now and sit at the opposite end of the table out of arms reach! I've had similar treatment at a recent siblings 60th BBQ with family and friends (brought my own food and burger), where I was told (in a very rude manner) "tough luck, there's nowhere safe ... just cook your burger on the BBQ" which was cross contaminated ... I stood my ground and asked for a clean frying pan to cook my burger safely and separately.
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