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Hello everyone! I am new here. I went to urgent care for nerve pain last week (hands and feet going numb, tingling, burning etc) My doctor did not want to see me and told me to go to urgent care. I thought the pain was caused from my back because I have a ton of back problems. Anyway, at urgent care the doctor asked if I have celiac disease. I said "No but my grandma does." she straight up said "you have it." no tests nothing, but she has it and said my symptoms reflect the disease. Anyways it makes sense to me and I think I might have it. I have a lot of symptoms and I would like others input. Here is a list: I am a 24 year old female. I am average weight and height. Migranes every day since I was 14. I had to get a cat scan after I fainted in class. They found nothing and put me on meds that didn't work. When I was 15 I had anemia. At 16 I was vitamin D deficient. I got blood work done a few months ago and no longer have anemia After that I had terrible anxiety and depression. Put me on meds that didn't work. Back problems for no reason (started when I was 18) herniated disk, multiple bulging disks, my disks are loosing fluid, scoliosis, Stomach problems, 2 years ago I started to feel nauseous every day, worse in the morning, I'd dry heave every morning or puke. Some days I'd puke up bile. This is still going on. They ran tests on my liver (high liver enzymes and fatty liver) and a gallbladder test, came back normal. I go poop 5-10 times a day. The stool is always loose. Once in awhile it is solid. Sometimes I go so much, when I wipe I start to bleed and it is painful. I have 3 breaks at work, I go before my break and right before it ends. Its embarrassing. So some days I go number two at work 6 times in one day! I always feel like I am on my period, I have skinny days where I can wear a size 9 but somedays for no reason I swell up and my size 11 pants are tight and hurt because my pelvic area is tender. I had an ultrasound, they found one cyst. A few months back I lost 15 pounds in two weeks, I could barely eat I felt so sick all the time. Then a few months later I gained 20 pounds in two weeks. I till wasn't eating. I went up multiple sizes and it just hurt. I never have an appetite. I started to get a random rash, my scalp itched, my knees and my elbows. It went away it was just weird. It lasted about a month and my doc said it was ecsema. Now I can't loose the weight. I am vegetarian, tried working out but can't loose anything. (by working out I mean walking. I literally don't have energy to do anything else) I get puffy eyes. Bad allergies, and sinus pressure every day of my life. On allergy meds that kinda help. I noticed a lot of these symptoms get worse after I eat gluten. I just started keeping track after the doctor mentioned this. I also have just been getting nerve pain, my arms and legs cramp up, my feet cramp up and get stuck, my hands and feet go numb, tingle, and BURN. I am tired all day every day even if I sleep 10 plus hours. Everyday I feel like I lifted weights and did full body work outs and everyday I feel hungover even though I did not drink any alcohol. I get tired from folding laundry and can barely function. All I want to do is lay in bed. Some days I drink 5 cups of coffee and an energy drink and I'm still tired. I also have brain fog and bad memory problems lately. I am messing up at work with the way I feel. I literally feel like my body is telling me something wrong. Sometimes my body aches so much I think I have fibro or (cancer) thats really how bad I feel. One day after my legs were cramping all day I had weird red patches all over my legs. I was freaked out. Any input would be great. Of course having celiac would suck but I feel so bad every day an answer to my problems would be amazing. I can't keep living like this. I noticed after I eat gluten, about an hour after, I feel depressed for no reason. Sometimes I cramp up and my stomach is tender. I don't know what to do.
I hope I’m posting in the correct place... I’m looking for answers for my 84 year old grandmother who was diagnosed with celiac disease about 8 years ago. Her health was beyond poor when she was finally diagnosed, and though much better, she still continues to struggle in many ways. One of the most troublesome symptoms she experiences is SEVERE pain in her lower right abdomen, through to her back. And this is not a woman who likes to admit she’s in pain, or has a low tolerance for such. If she says it’s bad, it is. Today it was so bad she actually went to the ER. Something she avoids at all costs. But I know she’s frightened they’re missing something serious as this is not her first time with such pain. In fact, she has had this off and on for years now, though it has become more severe/frequent. I just kept thinking this is related to her celiacs disease, as I know for a fact she is not strict about her diet. She had an ultrasound today. Nothing. She’s had multiple scans, etc over the years. Nothing. Typically they tell her she has a bladder infection and put her on antibiotics. But she does not have a bladder infection every time the attack’s occur. She also had her gallbladder removed long ago. I hate watching her suffer with no answers. I’ve sat in the ER with her in the middle of the night while she’s moaning in pain. Could this possibly all be from her celiac disease? Does anyone else get severe pain through to their back? I’d so love to be able to tell her that it could all be the result of her not being strict about avoiding gluten. That there is a relatively easy solution..
Hi Everyone, First off, this is my first post on this site. I apologize that this may get a bit long, but I'm really hoping someone on here can help me and if you make the committment to read all of this I thank you dearly and appreciate it more than you know! I also apologize if I'm rehashing something I should be able to find somewhere else on the forum, but I'm really at a loss right now. A little about my current situation: I'm a 22 year old guy, 160 pounds, in pretty good shape, and have played sports/eaten fairly healthy my whole life. I've been fighting this for over 3.5 years and am simply out of ideas. I've seen every doctor I can think of, and no one seems to be able to find anything wrong with me. However, my symptoms are so severe I can barely make it through the day anymore. I'm worn out, exhausted, and ready to give up. I've been prescribed 30 mg Adderall and 200 mg Tramadol per day (for 3 months now), and I still feel like I'm just making it through. I'm sick of drugging myself up every day just to get by, but I don't have a choice at the moment. I'd like to list my symptoms and see if anyone else has had the same experience. I'm wondering if this is some sort of gluten intolerance/food allergy. Or, if anyone has any other ideas I am more than willing to listen! Here we go... 1. Sore throat – This is the main one. I've had it since August 2009. I've always gotten sore throats since 6th grade, usually for a month at a time, once or twice a year. I got this one in August '09, and it just has never gone away. It's a constant pain, every day. I feel it when I'm not talking, but mostly it makes me want to not speak. Every syllable hurts. Which is really annoying since I used to be super outgoing and make friends with complete strangers all the time. 2. Fatigue – This has gotten bad the last year. If I don't take the Adderall, I lay in bed all day. I usually try to take the weekends off my meds, and I hardly leave my bed. I have no motivation to do anything. It doesn't matter if I sleep 4 hours or 12, I'm exhausted. I'll sleep 12 hours, wake up for 2, then go back to bed for a 2 hour nap. It's insanity! 3. Running out of breath easily – I'm not sure if this ties into the fatigue, but it has started the past year. It's strange because I'm in fairly good shape (I was doing triathlons a little over a year ago), and now I start breathing heavily from going up one flight of stairs. (I did have a procedure done 2 weeks ago where they cleaned out phlegm from the tube that runs into my right lung, this has helped greatly, but I still have some trouble) 4. Lactose Intolerance – This is the one that cued me in to the idea of gluten sensitivity. At one point in high school I used to drink 1/2 gallon of milk/day, and then probably about 2 years ago I developed an intolerance and have been avoiding dairy ever since. 5. Excessive Appetite – I've always had a fast metabolism, but lately it has gotten insane. I eat literally every 2 hours. If I don't eat in 3, I start feeling exhausted and painfully hungry...If I wait 4, I will fall asleep. I recently had a glucose tolerance test (to test for diabetes) and I wasn't able to eat for about 5 hours, and I almost passed out driving back to work afterwords. My blood sugar was extremely low, which I found out later, 54 mg/dL, when I left the hospital. Anyways, it's gotten to the point where I don't enjoy food most of the time. It's a burden. I feel like I have to eat...it's become work. 6. Back Pain – I've had this for a while, but it has gotten really bad the last year. Somedays my throat pain dominates my mental state, some days my back pain does. 7. Acid Reflux – I've had to drastically change my diet to avoid some of my favorite things (orange juice, etc.). I tried omeprazole (prilosec) for a while, but it didn't seem to help. I've also tried holistic ways of dealing with it (aloe vera juice, probiotics), but to no avail. If I stick to a good diet though this doesn't bother me that much anymore. I avoid coffee, tea, and energy drinks. 8. Difficulty Swallowing – This started about 4 months ago, and is part of what has prompted me to really try to tackle this stuff. It feels like my throat is closing up on me and as if I'm forcing food down a narrow hole as I swallow, even though the doc says my throat is plenty open. It doesn't feel like it. Sometimes I'll choke on my multivitamin in the morning. I also choked on shredded chicken in my chicken noodle soup (gluten free) the other day. I appreciate anyone who has read this far! Just a little more I want to share on the testing I have had done. My glucose tolerance test was negative for diabetes. I had a celiac blood panel done, and I don't have the exact numbers in front of me but it was negative. I've been on a gluten free diet for the last 2 months and haven't seen any improvement, although I have noticed I was glutened 3 times after rechecking labels later. I'm trying my best, but I'm still learning. My younger sister (21) and brother (18) have both been DNA test for celiac and were found to have DQ2.5/DQ8 and DQ2.2/DQ8 genes. I had an upper GI endoscopy recently and the doc stretched open my throat and also ruled out eosinophilic esophagitis. He didn't check for celiac though, and I hadn't considered/thought of it until literally the next day! I had a sleep study 3 weeks ago and ruled out sleep apnea/other sleep disorders. I've been to 3 different ENTs and had multiple scopes, but all they've been able to give me has been omeprazole and blank stares. I've been tested twice for mono and had a CT scan of my neck that found nothing. I had an allergy test 3 years ago when this first started, which found I was mildly allergic to milk and beef, but the doc said it wasn't really significant (can food allergies change drastically over time? maybe something would be more apparent now that this is more progressed?). Could it be a mineral/vitamin deficiency? I also tried a course of prednisone 3 weeks ago, but I developed a rash on the second day and stopped taking them. I might retry that though when I see my doc next week. I also want to try a 24 hour PH monitor. I've also elevated the upper end of my bed for the past year or so, to no avail. Sorry this is so long, and also sorry if it's a bit jumbled. But, anyone have any thoughts? Thank you for listening. Much love. Merpaul