strangedays posted a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsHello, After a long process, I've finally been referred from my doctor to a GI for an endoscopy this coming Wednesday. I had my consultation today, however, and found out my doctor didn't forward most of my info over so that all the GI knew about me and my symptoms were brief notes from referring doc and what info I could cram into the brief consultation: He knew I had an h pylori infection in August that was treated with "h-PAC" medication. I told him I've been having abdominal pains, switch between D and constipation, light headedness, and weight gain without a change in diet. Because I couldn't link the pain I was experiencing to a certain food, he interpreted my symptoms as not having to do with celiac. When I asked him what he thought was wrong, he said maybe nothing or maybe an ulcer. I really don't think it's either! He also said he might take a biopsy. I'm worried that after all this waiting, my GI may not really be informed on celiac, and my chance to get a proper dx will be wasted. When getting an endoscopy done, would there be any visible signs/damage that could point to celiac? Anything that would support the dx? Also, in Ontario, if I asked him to take the biopsy for celiac testing, would he agree? Should I bring a complete list of symptoms with me to show him the day of? I'm 22 and still learning how to advocate for and take care of myself, so any advice/personal experiences would be greatly appreciated. -
strangedays posted a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsHello, I've been so distraught about all this for the past couple months, and I don't know where to turn/how to get the help I need. I am female, 22 years old, and live in Ontario. For the past couple of years, I've had general crappy feeling issues - regular headaches, light-headed, almost daily headaches, unsettled stomach, constipation, diarrhea. After suffering, I decided to go to the doctor and was told I had IBS and that there wasn't really much to be done. I think I wasn't taken as seriously as I have a history of anxiety/depression, and think my issues were chalked up to nothing more than stress. Several months ago, I began having a lot of pains in my chest and upper stomach that were sharp and pulsing, then disappeared. After going to three different doctors, I was finally tested for h. pylori, and the results came back negative. I was told to take the h-pac (8 pills a day of antibiotics and acid meds I believe?). While it helped, I still had symptoms and was put on a PPI. I was still feeling incredibly weak, light-headed, foggy, exhausted, and asked to have a blood test which my physician reluctantly agreed to. She told me if there were any issues, that she would call, otherwise, come back in a month. A month later (now), things had not improved, and I went back to see her. At this point, I am experiencing the following: -headache (almost daily) -nausea -extreme fatigue (even with sleeping 8 hours a day) -light-headed -can't focus -need to lie down a lot -diarrhea, or just having very heavy BMs -constipation -tingling in my left hand that comes and goes -hard to explain, but when I close my eyes, my brain feels weird My blood test from beginning of October showed (don't have exact numbers, I didn't get my own copy): -very low iron, hemoglobin -very low vitamin B12 I've been crying a lot because I feel so hopeless and trapped. I was also so angry that I had lived a month with such low levels of iron and B12 considering I've been feeling like a zombie all month and she forgot to call with my positive results. Does it seem possible that I have Celiac? What are the best ways to know for sure? My doctor said she's going to refer me to a GI for an endoscopy, but that process is going to take months. Is there a way I could speed this up? Would going to my ER be an option? I don't know how much longer I can handle these symptoms/constantly feeling awful. Also, has anyone else experienced a link between H. pylori and Celiac? I have read things about Celiac being started by some kind of event/infection that really exacerbated symptoms? Any advice/support/information or places to go for support would be so appreciated. I'm barely an adult and facing this wall of daily symptoms has really taken a toll on me.