Everything posted by melbahtoast
melbahtoast replied to melbahtoast's topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsThanks for the tip, I will. I think it's strange that he never actually showed me the results, however I trusted him... he's the doctor right?
melbahtoast posted a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsI forewarn all readers this this will be a long post, with that being said... I'm 22 years old and on a gluten free diet, but since the age of 16 I have been plagued with all sorts of digestion upset. Since the age of about 10 I knew I had some degree of lactose intolerance, so I've been drinking soy milk since then. The more "liquid" the dairy is, the worse my symptoms are. I can tolerate hard cheeses pretty well. My symptoms gradually got worse over the years, to the point where I couldn't eat anything without having diarrhea. I knew this couldn't be related to the lactose intolerance. It didn't matter what I ate, fruits, veggies, poultry, meats, grains... anything I ate would come out mostly undigested. I was having diarrhea up to 16 times a day. The only way I could curb this was by taking 2-3 immodiums everyday. I did this for 5 and 1/2 years (until last November when I went gluten free and my symptoms seemed to vanish). I went through a number of different tests/blood work when I was 18 with a GI specialist including a colonoscopy, endoscopy, upper/lower gi scan (I drank Barium and they watched it go though my system), a gastric emptying test (ate radioactive eggs and they watched that go though my system), swallowed a camera to take pictures of my inner workings, stool sample, and I was tested for Chron's, IBS, and Celiac (twice). My doctor told me that the first result for Celiac was inconclusive so he wanted to test me again. The second result was negative. He didn't tell me what exactly he tested for, or show me any of the results. He also found polyps in my colon and told me I had a hiatal hernia, but didn't explain what that meant. He diagnosed me with IBS, told me to go on a low fat diet, and come back every two years to check for polyps (I haven't since then, but I have one scheduled for the summer). Did the low fat diet, without any relief of symptoms. Family history was not taken into account since I am adopted from Colombia and don't know anything about my birth family. Aside from the GI symptoms, I was constantly tired, no matter how much sleep I got or coffee I drank. I had pain and stiffness in my joints. I've have knee surgery on both knees, the first one when I was 14 and the second on when I was 21 for torn meniscus. On the first surgery the doctor told me he saw the beginning signs of rheumatoid arthritis. I have carpal tunnel in my right hand (which has gotten much better since going gluten-free) and problems with my left shoulder. It pops and clicks often, and I wake up with pain every morning. Doctor said possible torn rotators cuff and instructed me to go to physical therapy. I had trouble concentrating on anything, couldn't seem to focus much for any amount of time. I was also almost always seemingly hungry, and was always somewhat over weight until about the age of 17. I also have to note that between the ages of 17 and 20 I suffered from Bulimia, and I know that engaging in this activity probably didn't help any of my symptoms, however all symptoms started before and continued after I received treatment for my eating disorder. I have not engaged in any bulimic behaviors since the age of 20. So in November of last year I was fed of with feeling miserable every day. I did much research on the web and talked to a few good friends who have lots of knowledge on nutrition, and came to the conclusion that I should try a gluten free diet. And what do you know, after a week symptoms were virtually gone. After 14 days of being gluten-free, I decided to test it (elimination diet) by eating something with gluten, a bagel. I immediately got a head ache followed by severe body aches. I was sick for 12 days afterwards with 1-2 days of each of these: diarrhea, vomiting, swollen tonsils, body aches, and joint pain. I was finally able to get out of bed on the 9th day to see my good old family doctor who said "Sounds to me like a gluten intolerance". Though I'm not exactly sure that was a diagnosis. I wanted to know if anyone here has done a gluten challenge, basically reintroducing gluten back into your diet to have a Celiac test done? I've been strongly considering this for my own piece of mind, as I have no family history, should I choose to have children some day, I want to have a solid answer as to weather I have it or not. I also want to know really how careful I should be with cross contamination if I continue to be gluten free for years to come, how much worse will my reaction be 10 years down the line to the bagel incident? Also should I choose to do this, I really feel like I should tell my doctor what to test for, as he put me through several tests and couldn't find an answer... so what are the proper tests for this? I have read that symptoms of gluten contamination for Celiac diseased people can include seizures. Can I be susceptible to this if I do really have Celiac rather than just a gluten intolerance? I am not in a completely gluten free house hold right now. My fiance does eat a lot gluten-free but not completely and I realized some of my symptoms are occasionally coming back, possibly because we use the same appliances? We try to keep everything separate, and cook my food first, but I'm sure we can't ensure all my food is cross contamination free. I apologize for the long post and I thank everyone who has taken the time to read it. It has been so frustration over the past seven months (there have been a few nights where I sat and cried a fit like a three year old because I couldn't walk into a pizzeria and "grab a slice"). Any insight would be much appreciated. - Mel
melbahtoast replied to melbahtoast's topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsMushroom, you're right. I guess part of me thinks that the bagel incident was some sort of huge coincidence, but the other part of me knows I'm completely out of my mind for thinking that. I guess I'm just concerned if a few years down the line new research or insight is available that concerns Celiac's but not gluten/intolerant or sensitive people. Or if I'm really allergic to it rather than intolerant. There have been a few times before I was gluten free that after eating something, the palms of my hands were itchy, but no hives or other symptoms. From my understanding an allergic reaction doesn't always have to manifest with hives and itchiness, but can include fever, upset stomach, vomiting, etc. I've had anaphylactic shock twice, but this was a reaction to allergy shots. Both times I believe the dose was increased too quickly, and both times I had to be rushed to the hospital. I noticed a few times since going gluten free severe itchiness/hives under my arms, and occasionally on my temples (usually right after a shower which could have been the shampoo), but not a full on allergic attack.