Search the Community

Hi everyone, 29 years old, got my diagnosis in September. This has been the longest 2 months of my life. This was my first real dx and I wasn't having much for symptoms before (1x bad constipation, irregular BM schedule). I struggle with pretty bad health anxiety and I've been freaking out pretty consistently for 4+months (when I was told I needed a colonoscopy). Basically since the colonoscopy was ordered in July, I started having small muscle twitching all over - this comes and goes but it's about 1 or 2 twitches every minute or so. I've also been super active this summer, riding 4k miles on my bike and accidentally losing 20lbs which I didn't really need to do. Since gluten free I've been all over the place diet/fitness/sleep wise and have had all sorts of weird symptoms: muscle twitching since July sinus(?) headaches since September extremely tired since October Dry eyes for the last 2 weeks worsening headaches in the morning especially and in the back of head/sinus area stiffness in body/neck/hands/joints general shakiness/weakness Vitamins levels from last week: Magnesium 2.3 (ref 1.6-2.3) B12 406 (ref 232-1245) Vit D 43.6 (ref 40-100) Folate 11.4 Glucose 84 (ref 70-99) Ferritin 117 (ref 30-400) Iron Sat 48 (ref 15-55) It's hard for me to know what is and isn't celiac related, and every rabbit hole I go down online leads me to horrible places. I'm just hoping there is some sort of light at the tunnel and that one day I'm going to feel better. I felt great until this diagnosis (as far as I could tell). Does anyone have any experience being relatively asymptomatic and then feeling like complete trash after gluten-free? Thank you so much.

Just found out recently that I’ve been officially diagnosed with celiac disease. I’ve been eating gluten free for a few weeks with about 50% effort, but now that I’m taking things more seriously I’ve realized that it is HARD. I come from a fast food family and am moving off for college in about 6 months, so I’m pretty crunched for time when it comes to teaching myself what I can eat and how to cook it. My post-diagnosis diet has mainly consisted of freezer meals and pre-packaged snacks; way less than ideal. If anyone has easy recipes they would recommend, or tips for gluten free fast food, or meal prep advice, or really anything at all- I would greatly appreciate it.

Hi everyone, I’ve recently joined this group because I’ve been experiencing symptoms for the past 6 weeks or so upon returning to the US from a trip to the UK that I feel could possibly point to celiac. I know symptoms associated with this disease are numerous and that presentation in adults can vary widely, but I just wanted to reach out to see whether anyone else has experienced anything vaguely similar. -2nd day before returning home, started feeling extremely bloated after eating. Nothing else, just overall very uncomfortable for several hours until it somewhat passed. Admittedly, I did eat a lot these last two days of the trip. -Once home, bloating continually got worse after every meal, and was soon accompanied by nausea, cramps, acid reflux, headaches, and worse constipation than my usual. -Symptoms continued for several weeks, along with decreased appetite. -Eventually, gastro symptoms abated slowly until my appetite mostly returned, though these symptoms still come and go, just to a lesser degree. -As gastro symptoms improved, the rest of my body seemed to go downhill. Worsened headaches, dizzy spells, and intense brain fog took over and affected my quality of life. -Have felt itchy all over my body on and off, but no signs of rash (could be a seasonal allergy thing, though?) -Started having occasional numbness in hands, knees, lower legs, and even lips. -Trouble sleeping (more so than usual), inattention, and forgetfulness from the brain fog caused difficulties when returning to work for the new school year (I’m a teacher) -Have had diarrhea twice, but the rest of the time is constipation -Just an overall feeling of “weirdness” that’s very hard for me to explain. What’s bothering me is that many of these symptoms kind of come and go, and it has me wondering if it’s all just in my head. I genuinely don’t feel as though it’s all due to anxiety, but I suppose anything’s possible. Anyway, I’ve met with a new doctor who’s ordered a celiac panel as well as an ultrasound, but won’t get the results until two weeks from now. I’m going to listen to whatever my doctor believes it is, of course, but until I know for sure, I’m just sort of twiddling my thumbs and wondering what else it could be if I do test negative. Does this sound at all like any of you who have been diagnosed celiac, NCGS, etc? Any other thoughts or suggestions you might have for me? Thanks so much for taking the time to read and comment.

My daughter (now 12) was diagnosed in Jan. 2020 and her tTG IgA was in the high 100s if I recall correctly. After a gluten-free diet for over a year, the number was down to 15. At her next follow up almost 1 1/2 years later, the tTG IgA was higher again, at 38. She has never been symptom free (main complaints are daily nausea, random sharp abdominal pain a few times a day). We are quite strict with diet, do not eat out (other than a couple of times a year at dedicated gluten-free restaurants). She does eat more processed foods (gluten-free pasta, bread, chicken nuggets etc) than is ideal. Our home is gluten-free, she takes lunch from home to school, etc. My question is, is this higher number and her symptoms clearly a result of continued contamination? I've seen members discuss those numbers being high due to other issues, but her GI didn't mention that possibility. I've combed through everything she eats and possible contamination sources and I'm at my wits end trying to figure this out. Any help would be greatly appreciated! Here are her test numbers: Endomysial IgA: negative (previously positive) IgA: 118 Glidadin (Deamidated Peptide) IGA Ab: 10.2 (previously 42) Gliadin (Deamidated Peptide) IgG Ab: 3.2 (previously 55) Tissue Transglutaminase (tTG) IgA: 38.9 (previously 15) Tissue Transglutaminase (tTg) IgG: 4.0 (previously 6)

Hello, I was diagnosed on the 18th of February 2021, and I've been on the gluten free diet for almost a week. I'm only 17 and have yet to figure out whether the trigger was the extreme stress of starting uni in COVID times and having no friends with me as well as no job experience, or if I was born with it and it just developed over time. I started experiencing extreme symptoms in the first week of uni, starting on the 2nd of February and thought I had developed extreme anxiety due to stress. My main symptoms are vomiting in the mornings even with no food in my stomach, bad nausea, fatigue, feeling uncomfortably full quickly during meals, no appetite, stomach bloating and muscle pain (primarily in my legs) as well as symptoms of depression and anxiety. I also lost about 3kg in just under two weeks. My mornings are horrible but I tend to get better as the day progresses (even when I was actively eating gluten) and at night I feel almost like my normal self, albeit more anxious and stressed. I've never had any experience with anxiety or depression and I've always been happy-go-lucky. Since it was such a dramatic shift from how I normally am, my mother rushed me to the doctor where I got blood tests, which my body reacts horribly to, as well as a pylori breath test. I have struggled with low blood sugar and pressure all my life and in the months predating my diagnosis I had started having symptoms of what I assumed was lactose intolerance but was never diagnosed. Since being diagnosed with Celiacs I've started having dairy again with only gas and no abdominal cramps (which I used to get). I've always been underweight and small; to put into perspective, I am 152cm tall and used to weigh 43kg, now only barely weighing in at 40. I've always struggled gaining weight and assumed I had a fast metabolism since I lose weight quickly. I've never experienced anything like this month. I was diagnosed with the blood test and have not done a biopsy or endoscopy as I'm deeply afraid of medical procedures, including blood tests and other tests. My sister and my dad are vegan so going for a gluten free household is not an option and I've always struggled with appetite and wanting to eat food, which has increased tenfold despite my body being the hungriest its ever been. I was recently glutened again when I made honeyjoys and accidentally used the butter my mother uses which is contaminated so I'm experiencing more symptoms and some are different, I've been having some memory and focus issues to an extent i've never experienced and my legs are really weak. I decided to join this website because I feel like I'm not handling this well and I have a lot of unanswered questions. Mainly, how do you keep weight on? I'm terrified of losing more weight and I have no idea how to gain and keep my weight healthy. I have more but I'd say that is my biggest one. As this is my first post, I apologise if I've done something wrong or if this is too long. I feel a smidge like I'm drowning and I'd really appreciate any support or advice to keep my head above water. Thank you!

I'm kind of at wits end here. I was diagnosed with celiac disease 4 years ago, I was 16, having stomach issues, etc. At first I didnt take the diet seriously AT ALL. like I just didnt care. I'm now rearing 20, and over the past 2 years or so I've been on and off and then on and off again the celiac diet. Sometimes I do great! I always fail though. I always just get a craving and i give in. i dont know what to do! I know I want to stop eating it. I have gained weight and I'm just MISERABLE. but I always seem to go back to it. Does anyone have any advice? I'm desperate. I live in a house full of gluten eaters, btw.