'I don’t want a cure. I don’t care to eat gluten.' This is so relatable to me! I know some people disagree, and I respect their opinion, but I think expanding knowledge of celiac disease to make food and dining places safer for us is way more important
Hi Ariella, thanks for bringing awareness to this disease. I have coeliac disease and a number of other auto immune diseases. Looking back I think I was born with it too but didn't get diagnosed until I was around 40. I was a mess both mentally and physically. I hate it when you say you need gluten free food in a restaurant and you get the look. It is an illness not a fad - I have ended up in tears in restaurants due to the lack of understanding. I don't eat out much anymore it is just not worth getting glutened and the consequences of that happening. Sorry for the rant - I just wanted to say that I understand and get it. x
Dear Ariella, it was moving to meet your mother this way. Will you please give her our love? It goes with ours for you, and our pride for your clear sightedness despite your brain fog, and your courage despite obstacles. Take care 🌹
Thank you for all you shared, Ariella! My children were diagnosed in 2013; they were 17 and 19 years old. Like you, my daughter suffers from other conditions/diseases. It's frustrating when people don't take it seriously or joke about it.
My daughter had a good friend who is celiac, so is her mother and sister. They work so hard to stay safe and I watched it as an outsider. They brougth their own food to weekend sports tournaments, to birthday parties. My daughter has an autoimmune disease - Periodic Fever with Apthous Ulcer- PFAPA. From 2 years of age on, she got a fever monthly that knocked her out - no energy, no appetite, sore throat, mouth ulcers. The only thing that helped was acupuncture. Then her fevers came every 2-3 months. She was supposed to grow out of it by 11 or so, she is 23 and still gets fevers, but not as often. So she and her friend with celiac could commiserate in having a little known or understood illness that made you miss out on things.
I am so sorry that your celiac has given you so many other autoimmune diseases. I appreciate your sharing and I wish you good health!
Sad you suffered so much for so long and still have to worry about anything you haven’t made yourself. But glad you can tell us about all of it and that there is legislation- however much of a long shot, to address content labeling 💯
No questions: you wrote comprehensively about symptoms, dx, tx, political/medical/food labeling issues. Thank you for being so disclosive: it will help many understand sumptoms, dx, tx, and other issues.
I’m aware. I don’t have celiac, but I’m allergic to wheat and a variety of other foods, and it can make eating meals with friends and family difficult sometimes. Actually, my friends have often been much more careful and accommodating than my family. I sooo appreciate it when people understand and make a point of serving allergen-free meals.
Ariella, my dad was diagnosed with celiac in his fifties (I think--it might have been later) after suffering for several years. It was the late seventies or early eighties. At that time no one knew about the disease and there were no special foods made for celiac sufferers. I was tested once but I didn't seem to inherit it, thank goodness. It's a miserable disease and I sympathize! I will contact my legislators.
Ariella, my dad was diagnosed with celiac in his fifties (I think--it might have been later) after suffering for several years. It was the late seventies or early eighties. At that time no one knew about the disease and there were no special foods made for celiac sufferers. I was tested once but I didn't seem to inherit it, thank goodness. It's a miserable disease and I sympathize! I will contact my legislators.
'I don’t want a cure. I don’t care to eat gluten.' This is so relatable to me! I know some people disagree, and I respect their opinion, but I think expanding knowledge of celiac disease to make food and dining places safer for us is way more important
Hi Ariella, thanks for bringing awareness to this disease. I have coeliac disease and a number of other auto immune diseases. Looking back I think I was born with it too but didn't get diagnosed until I was around 40. I was a mess both mentally and physically. I hate it when you say you need gluten free food in a restaurant and you get the look. It is an illness not a fad - I have ended up in tears in restaurants due to the lack of understanding. I don't eat out much anymore it is just not worth getting glutened and the consequences of that happening. Sorry for the rant - I just wanted to say that I understand and get it. x
Thank you for sharing. What a journey!
Dear Ariella, it was moving to meet your mother this way. Will you please give her our love? It goes with ours for you, and our pride for your clear sightedness despite your brain fog, and your courage despite obstacles. Take care 🌹
Thank you for all you shared, Ariella! My children were diagnosed in 2013; they were 17 and 19 years old. Like you, my daughter suffers from other conditions/diseases. It's frustrating when people don't take it seriously or joke about it.
My daughter had a good friend who is celiac, so is her mother and sister. They work so hard to stay safe and I watched it as an outsider. They brougth their own food to weekend sports tournaments, to birthday parties. My daughter has an autoimmune disease - Periodic Fever with Apthous Ulcer- PFAPA. From 2 years of age on, she got a fever monthly that knocked her out - no energy, no appetite, sore throat, mouth ulcers. The only thing that helped was acupuncture. Then her fevers came every 2-3 months. She was supposed to grow out of it by 11 or so, she is 23 and still gets fevers, but not as often. So she and her friend with celiac could commiserate in having a little known or understood illness that made you miss out on things.
I am so sorry that your celiac has given you so many other autoimmune diseases. I appreciate your sharing and I wish you good health!
Sad you suffered so much for so long and still have to worry about anything you haven’t made yourself. But glad you can tell us about all of it and that there is legislation- however much of a long shot, to address content labeling 💯
No questions: you wrote comprehensively about symptoms, dx, tx, political/medical/food labeling issues. Thank you for being so disclosive: it will help many understand sumptoms, dx, tx, and other issues.
I’m aware. I don’t have celiac, but I’m allergic to wheat and a variety of other foods, and it can make eating meals with friends and family difficult sometimes. Actually, my friends have often been much more careful and accommodating than my family. I sooo appreciate it when people understand and make a point of serving allergen-free meals.
Ariella, my dad was diagnosed with celiac in his fifties (I think--it might have been later) after suffering for several years. It was the late seventies or early eighties. At that time no one knew about the disease and there were no special foods made for celiac sufferers. I was tested once but I didn't seem to inherit it, thank goodness. It's a miserable disease and I sympathize! I will contact my legislators.
My uncle was diagnosed in the 60s. I think when it was called the banana diet and they still had no idea what was causing it.
That must have been tough!
Ariella, my dad was diagnosed with celiac in his fifties (I think--it might have been later) after suffering for several years. It was the late seventies or early eighties. At that time no one knew about the disease and there were no special foods made for celiac sufferers. I was tested once but I didn't seem to inherit it, thank goodness. It's a miserable disease and I sympathize! I will contact my legislators.