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LindaJoy

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About LindaJoy

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  1. I do believe I've asked this years ago here, when I was looking for answers to what's wrong with me, but here I am again since it's not much better. Believe it or not, I was living on ground lamb and white potatoes for over a year as that seemed to be what I didn't react to, but recent circumstances, and very poor health, have led me to eating some other foods again, and I'm doing the weird reactions after eating. Does anyone here with celiac do this after eating? --feel tingling in feet that spreads to legs, like nerves being severely stimulated --legs ache --itching, especially in thighs --feel nauseous --feel like you'll pass out or have a seizure --heartrate increases, as does blood pressure --feel awful, like the flu --start to shake --want to cry --feel panicky --goose bumps, chill --guts gassy and active --sweaty, arm pits, back of head --buzzing in ears I know most of these symptoms are neurological. I have adrenal insufficiency and take hydrocortisone for it (these symptoms appeared long before this), Dysautonomia and Mast Cell Activation Disorder. Do any of you do the above with celiac? I've been tested many times and found to not have it. I just don't know anymore. Oh, these symptoms will start within minutes of eating, sometimes even while eating. Thank you. Lindajoy
  2. Hi, Happygirl, Yes, from what I've read, lymphocytes from colitis are in the large intestine (colon), not the small bowel, and that's where my lymphyocytes are. From what I've been told, my my new gastro at CCF and a nurse from a celiac specialist's office in Maryland, and from several other people, including those at the Celiac Foundation, there are hundreds of things that can cause scalloping and lymphocytes in the small bowel. Celiac disease is the most prevalent of those things. I also have Eosinophilic Esophagitis, and the nurse from Maryland told me that EE could cause the scalloping I have. I've not heard of that. I did return to the Cleveland Clinic for more testing a few days ago. My doctor said that they ran all of the celiac blood work, even the one to show if I have the antibodies that will make sure the tests are accurate, and he's sure I don't have it. A woman from the Celiac Foundation said pretty much the same thing. I'm being tested for parasites, infections, bacteria and viruses, I think. Also, does anyone here have a high IgE level? Linda
  3. Oh, I'm sorry. I don't think I was clear about the lymphocytes' location. They were found in my small bowel, during biopsy, along with neutrophils and some inflammation. I know the neutrophils are probably rearing their little, short-lived heads because of the inflammation, but the lymphocytes in my small bowel are my concern. I looked up lymphocytic colitis. Thanks for the suggestion. I do have the symptoms; they're the same as in celiac, and too, the colitis comes as a result of another autoimmune disorder. Guess what the number one disorder was that they attached to lymphocytic colitis--celiac. A gluten-free diet is definitely in my future. Right now I'm living on beef and pork, both shredded very minutely since I also have gastroparesis, Jell-o, and millet or buckwheat bread. Ugh. I need to get to the store! Linda
  4. Wow, what a welcome. Thank you. I feel at home here already@ Yes, I've been gluten-free for three days now, and maybe it's my imagination or just wishful thinking, but I feel like I have a bit more energy. My guts are still EXTREMELY sore, I still have diarrhea and back pain, but I know it will take awhile for my guts to heal. I have a question. Give me time and I'll come up with a million more, but for right now, I have a question about the increased lymphcytes. I thought I had read that lymphocytes increase with any celiac person. Is that right, or did I read that wrong? I know I saw that lymphocytes increase with refractory sprue, and that scared the heck out of me. I hope I don't have that. Anyway, do lymphocytes increase in people with celiac? Thanks, everyone. I"m so glad I found you all! Linda
  5. Hello, everyone. My name is Linda Parsons. I am a 42 year old who lives near Lima, Ohio. I have had a heck of a year. I've been in the hospital eleven times this year. Docs still don't know what's wrong with me. But, here's where celiac comes in. I've had 5 EGD's and two colonoscopies since August. The first four EGD's showed gastritis and eosinophilic esophagitis. Little more. THis fifth one that I just had done showed "mild scalloping of duodenal folds." Also "increased intraepithelial lymphocytes extending to the villous tips" with "focal intrepithelial neutrophils." My "villous architecture is well preserved." I have had abdominal pain, sometimes severe, since March, along with severe diarrhea. I've lost over 20 pounds, get dehydrated quickly, have rashes, and hourds of other symptoms. I had the blood work done for celiac. All came back normal, so my docs said, no, you don't have celiac, eat what you want. My question: After internet research, I'm finding that I may still have celiac. But if not, what could be causing my celiac-like findings? Also, how could it be missed through four other EGD's (another at Cleveland CLinic, two at Mayo, and one at home), plus two complete blood work ups? My gastro here at home has thrown his hands up and won't help me anymore. The gastros at CCF say it's not celiac but they don't know what's going on with me. Along with the EE, I also have gastroparesis and gastritis. Please let me know your thoughts. I can use all the help I can get. I'm desperate here. Thanks you. Linda Parsons poetess1_26@yahoo.com
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