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- Scott Adams replied to KathyR37's topic in Coping with Celiac Disease1New here
What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are fee... -
- KathyR37 posted a topic in Coping with Celiac Disease1New here
I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels... -
- Scott Adams replied to Colleen H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease3
Celiac attack confusion and anxiety
This article, and the comments below it, may be helpful: -
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- nanny marley replied to nanny marley's topic in Related Issues & Disorders13Manitol and mri
Oh yes I can understand the tiredness after going threw all that, must be exhausting especially on the mind I have high aniexty so I can understand that , I wish there more easier ways for people to get help , I had a MRI on my spine some years ago without anything it was really quick and no prep , I understand the need for them to see better with the bowel...- 1
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By Scott Adams · Posted
What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up! This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.): -
I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels and vomiting. All that just made me sicker. Eventually I chucked it all and went back to eating like I had all my life. Now I am from the south and biscuits and gravy are a big part of our food, as are breaded foods, pasta, and sandwich bread. Through the years I would try to do the gluten free thing again and am doing it now. It has not helped any. Within and hour of eating I have to run to the bathroom. I am now 75 and am wondering if I should just forget it and eat what I like, take Immodium and live the best I can. I cannot eat before going anywhere for fear of embarrassing myself. Family and church dinners are out of the question unless I eat and run straight home. I am so frustrated I just want to sit down and cry or throw something. Does everyone go through all this?
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By Scott Adams · Posted
This article, and the comments below it, may be helpful: -
By nanny marley · Posted
Oh yes I can understand the tiredness after going threw all that, must be exhausting especially on the mind I have high aniexty so I can understand that , I wish there more easier ways for people to get help , I had a MRI on my spine some years ago without anything it was really quick and no prep , I understand the need for them to see better with the bowel ,but you think they would use something a little less traumatic for ibd sufferers on the bowels by now ,I hope your feeling better today 🙏 -
I wonder if tingling burning feet are part of it.. I'm not sure if it's the med reaction that people with gluten intolerance get or the food we ate It's frustrating because a person who did not want to admit to himself I had this condition wanted me to eat this chicken sandwich and now I'm stuck with a variety of symptoms plus now I'm hungry on top of it.. I'm new to this so I forget that "one bite" of the wrong thing can hurt us.😔. Do we stop eating if someone exposed us to gluten ?? My stomach is rumbling but my joints hurt ... It's weird because I can feel the anxiety coming on. I get joint problems , I don't know if anyone ever got hot flashes?? I suppose if it affects people head to toes you can get that too. It's weird...hard to decipher what is what. Also how long do I have to deal with this attack?? Makes me feel like not getting up out of bed. I get too many symptoms which horrible. Thank you for your response..
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