Hellokittez
-
Posts
9 -
Joined
-
Last visited
Hellokittez's Achievements
About Me
I am from Utah and we moved to Pennsylvania when I was 2. I met my now fiancee and we recently both escaped very abusive family situations and currently have an apartment together. The worst of my celiac symptoms started when my body couldn't hold out anymore and it actually killed my gallbladder and almost killed me. I was diagnosed 2 years after they discovered I had bile acidosis, jaundice and sepsis and had to remove it. Since diagnosis I have saved the lives of 6 people like me who had the same symptoms and I told to go and demand the gallbladder contrast test and a celiac test and all of them tested positive for both. My autistic attention to detail and obsession with medical care has actually set me apart from the general population in being able to spot when things are not right. I have a laundry list of allergies, I have fibromyalgia and autism pain disorder (yes it is a real thing) and so much intestinal damage that I will never fully recover. I often can't care for myself because of all my problems and I have an epi pen on standby. My fiancee had heart surgery a year ago and the sternotomy was horribly botched, so I am still caring for him. I am sure there is more that I will probably cover, but honestly if you read this far I applaud you. I once heard a saying: you don't win, you just do a little better each time. So true of life itself.
-
Hellokittez reacted to a post in a topic:
Celiac Caused By Mold?
-
Hellokittez reacted to a post in a topic:
Celiac Caused By Mold?
-
knitty kitty reacted to a post in a topic:
Celiac Caused By Mold?
-
I was exposed to horrific levels of black mold as a child. The exposure was so bad that I was coughing up blood daily and was violently ill 24/7. After the exposure I discovered that I had developed severe celiac disease, turned out that my father, sister and half sister likely had it, so there is a genetic component. My mother recently started showing...
-
Hellokittez changed their profile photo -
Hellokittez reacted to a post in a topic:
So a warning to all celiacs and the gluten sensitive
-
Hellokittez reacted to a post in a topic:
So a warning to all celiacs and the gluten sensitive
-
Hellokittez reacted to a post in a topic:
So a warning to all celiacs and the gluten sensitive
-
Hellokittez reacted to a post in a topic:
So a warning to all celiacs and the gluten sensitive
-
Hellokittez reacted to a post in a topic:
So a warning to all celiacs and the gluten sensitive
-
Hellokittez reacted to a post in a topic:
Gluten free Wookies
-
kathysnydersaccone reacted to a post in a topic:
So a warning to all celiacs and the gluten sensitive
-
Gluten free Wookies
Hellokittez replied to Danny Fernando's topic in Gluten-Free Foods, Products, Shopping & Medications
I think that's a great idea! Just I beg you, please don't do what everyone else does and put potato, walnuts, or even mushrooms in it. (I found mushrooms in a chocolate bar once.🤢) You might want to check into the name wookies though and make sure there won't be any legal backlash from Disney and those that own Star Wars. (From what I understand Disney ha... -
We still aren't sure. I have had erratic bleeding for a while and the doctors haven't been able to find anything conclusive, so it has been a rather puzzling mystery to say the least. We know there is something and we know it causes bleeding, but around here, unless it is textbook the doctors have no clue.😩
-
I also wanted to note that I tried some of the Hersheys heath mini bars, also labeled with the same type of gluten and allergen free statement as on the brookside chocolate bag and became sick from those as well. I am certain it was a gluten reaction, as it was one that included symptoms I only have when glutened.
-
So I wanted to post and warn everyone, since social media my post and the company ignored me. I discovered that Hersheys Chocolate Company has been lying to celiacs, the gluten free and those with allergies. I first discovered it with their brookside dark chocolate pomegranate bites. I was eating them to help with cravings, as part of a new dietary plan...
-
So for those of you who read my topic question, the pcp, gynecologist and gastroenterologist all ran and are still running tests. The gyno says everything seems fine and wants to start hormone therapy even though we still don't know what it is (that seems to be the answer for everything😑.) I hate that it is so acceptable for a doctor, or specialist to just start prescribing things without even knowing what something is! I like my gyno, but I am so dang frustrated! The PCP had zero ideas and no way to test for them and told me to go visit the gyno and the gastro. The gastro did a celiac panel and it all came back negative, he did a few other tests and they didn't come back with much, but he is hung up on selling the diagnosis of constipation before he has even finished testing and I have a feeling that he is not going to let that one go, even if we find something else. The problem is that I kept trying to tell them that the constipation was a secondary issue and it comes and goes with little effect on the problem at large. Of cou...
-
Scott Adams reacted to a post in a topic:
Are these conditions creating interrelated problems?
-
Are these conditions creating interrelated problems?
Hellokittez replied to Hellokittez's topic in Related Issues & Disorders
So to update I have been set up for several tests, have been to the er twice waiting to get to appointments and finally managed to see a gyno specialist and then another one whom I found I trust the judgment of a lot more. They are putting me on progesterone to stop things and hopefully control some of the bleeding until we get a better handle on things... -
Scott Adams reacted to a post in a topic:
Are these conditions creating interrelated problems?
-
Are these conditions creating interrelated problems?
Hellokittez replied to Hellokittez's topic in Related Issues & Disorders
Honestly I think it's just doctors personal bias getting in the way at that point. I had several tell me that I was just stressed, or it was all in my head, even after I kept vomiting from the celiac killing my gallbladder and my skin turned yellow. I finally recieved a solid diagnosis of gallbladder disease and they were all like "oh" so she really wasn... -
Are these conditions creating interrelated problems?
Hellokittez replied to Hellokittez's topic in Related Issues & Disorders
I am actually referring to the tumor and the celiac disease. I was wondering if they have any kind of direct connection. I know that when I get glutened it causes pain with the tumor, but beyond that it's kind of a mystery and a curiosity to boot. -
Okay so I wanted to start by saying that I am new to the group, but not to celiac disease. I had all the failure to thrive growing up (when I was a newborn the doctors actually accused my mother of starving me. You can bet that didn't go over very well.) There was also the lack of appetite, my growth was permanently stunted and I actually developed a form...
