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So I havent been diagnosed. But was experiencing some pretty terrible stomach pains, And started paying attention to what i was eating. And that's when I realized that wheat and bread really do not agree with me. So it's only been a few days of trying to eat gluten free, And it's so terrible. This sounds so dumb, but I feel like life is over because i won't be able to eat some of my favorite things. And the idea of being infertile from this absolutely terrifies me. I'm only 23. And I keep googling things about celiac and making it worse for myself and freaking myself out. This sucks so bad. Even trying to be gluten free, it's just so hard. Everything has gluten. I'm just having a rough time coping with the idea of this already. Any tips on how to get better at This? And how long it takes to feel better? And if you have any amazing recipes, please do share.
After 6 years of having many many medical issues (I am now 20), I finally got tested for Celiac and it came back a big fat NEGATIVE. In the past I have been scoped in upper and lower but all the doctors could find was gastritis causing my episodes of acid reflux. Years have passed..a topical ointment for this rash...a migraine medicine for that migraine headache....that sinus surgery...here's a steroid...I just don't understand why you need all these root canals...you have many swollen lymphnodes...the asthma...the dizzy spells....the weakness....I am only 20 and needing to take supplements for a Vitamin D deficiency when there was no reason for me to even have it in the first place! So after talking to my GI doctor, we decided it was IBS and nonceliac gluten intolerance (which he has yet to put on my chart but he said it was that if it wasn't celiac). It has been a week since that diagnosis and quite frankly, I just don't know how to feel. Like it's like one day you just walk in your doctors office, they give you a diagnosis, expect you to make this big change, and just send you on your way forever with no follow ups. So I feel quite lonely but okay. I am pretty sure another reason why i feel lonely is because my family just doesn't believe me. It is plain and simple like that. I tell them I can't eat something and they will say "well I worked hard to make it after working all day so just have a little bit" ... and then they wonder why I am in my bed all night long with the ice, heating pad, and meds that don't work. Ever since the diagnosis I was not taken seriously at all. The gluten free diet has made me feel FANTASTIC!!! But they don't see it. They think I "just need to chill out" when I explain that I will literally get heart palpitations if I were to eat gluten. They think my gluten driven rash (which my GI doc said is the gluten rash) is just some form of STD or something. The other night my chinese food was contaminated and I was so nauseous for 2 days and my mom just couldn't wrap her brain around that cross contamination bothers me and blamed it on "sleep deprivation". The list goes on people. After tonight I was just done with it all. I live with my parents because I am in nursing school and it is the most convenient. My mom made me dinner and swore it was gluten free. I ate it and felt off. I had worked a long day and was just like "well okay". My brother brought home breaded chicken wings which I was very attacked for not eating. Then around 20 min after my consumption of dinner, I broke out in my rash, got stomach cramps, diarrhea, nausea, a headache, acid reflux, etc. I told my mom I think her dinner had gluten in it and she was just walking around and huffing as if I had actually ruined her life by stating that. She even dug through the garbage ready to prove me wrong until she found the soup can...yes it did have gluten. And all she can say was "oh well sorry" and barely even spoke to me for the rest of the night regarding any of it. Didn't even turn to me to talk when i was speaking to her. Why does my family act this way and how can I deal with this? Why do they act so annoyed because my body is reacting to something? I explained to them millions of times what will happen if I ate it but they honestly don't care about it. They just don't. I dont have celiac but gluten obviously makes me react to it, even in very severe ways. So why should I have to eat gluten and suffer because of them? Why would they even be expecting such a thing? Non celiac gluten intolerance is real right? I just feel silly for doing something for me for once instead of taking care of their needs like I usually have to do. In the past I have gotten called hypochondriac by them to the point where I dont wanna even see the doctor for a sinus infection because I am afraid all doctors think the same of me. If anybody has any advice, I would greatly appreciate it!
With the holidays approaching, I feel some sadness about being deprived of the holiday foods I used to enjoy. Then I remember Sammy (not his real name). He was a four-year old patient of mine when I was working as a pediatric hospital pharmacist. Sammy used to visit me every day in my 3rd floor pharmacy satellite. He would come strolling by with his IV pole and his nurse. They would stand in my doorway and dance to the music I played in my satellite. His nurse told me it made his day. I know it made mine. I so looked forward to seeing Sammy. He was in the hospital a lot. Sammy never ate any food. Never. All his nutrition came from IV admixtures. He never smelled, or tasted, or enjoyed any food. Not any Halloween candy, no Thanksgiving pie, no Christmas cookies, no Birthday cake. Ever. Sammy almost made it to adolescence. Now when I feel deprived, I remember Sammy and my sadness or even anger turns to gratitude for all the pleasures I do enjoy. Maybe it can do the same for you.