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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.

Hey guys! I'm new to the gluten free lifestyle. It's been about 10 days and the dizziness anxiety and constant hunger are making me wanna loose my sh!t! Has anyone else experienced these symptoms after quitting gluten? I don't have tummy issues aside from the fact that I was backed up all of my life! Never thought it could be gluten because all I ever heard was diarrhea and stomach cramps. I would like to try exercising but I'm afraid the dizziness will get worse. From the research I've done these are all withdrawl symptoms but I'm hoping it doesn't last much longer because I do not take pharmaceuticals. The constant feeling of anxiety in my stomach tends to ease up a bit when I'm out of the house with other people but I'm mostly alone at home so it escalates. I meditate and ground and do qigong take deep breaths hot baths use essential oils drink herbal teas etc etc. So I'm exhausted and thinking it's just a matter of time.

I was diagnosed with Celiac Disease 8+ months ago, overall have seen improvement in gut issues, however, I have continued to experience dizziness (feels as if I am on a boat upon movement) and severe fatigue each and every day. My symptoms are by far worse in the morning, as well as worse following physical activity. I have been passed around from specialist to specialist (multiple GI doctors, endocrinologist, cardiologist, neurologist, dietitian), and none have come up with an answer as to why I am still experiencing these symptoms. I am aware full intestinal recovery can take up to 2 years post-diagnosis, however, I was wondering if anyone else has experienced these symptoms and how long it took for them to finally feel better? As one can imagine, I'm drained from trying to function daily with these symptoms concurrently, as well as I'm becoming very discouraged despite staying positive to the best of my abilities. As far as diet goes, I am very strict with myself and have not had any type of gluten product in my household since time of diagnosis. I have had other food allergy testing performed, although all results come back insignificant for all other foods (eggs, corn, dairy, etc.). I am currently on a 6 week low FodMAP diet as prescribed by my dietitian, but have yet to see any positive results. The only other supplements I have recently began are riboflavin, feverfew, and magnesium, all prescribed by my neurologist for migraine prevention. I am open to any and all possible suggestions and encouragement! Thank you!

Hey guys, quick background on me. I am a highly active, 30 year old male, and was diagnosed with Celiacs a little over two months ago, immediately went gluten free and many of my symptoms began to resolve within about a month (diarrhea, major weight loss, extreme fatigue, tiredness, brain fog, headaches, to name a few). I returned to working out like I have the majority of my life (primarily weight lifting with high volume 5-6x/week) and have remained extremely diligent in proper diet. However, at approximately the two month mark of being strictly gluten free, I’ve began feeling extremely sickly again without reason I can identify (extreme fatigue has returned, have come close to passing out multiple times, frequent nausea, whole body weakness, dizziness, tinnitus, headaches have returned). Aforementioned, I have remained gluten free, have even significantly limited dairy/lactose, but still feel horrible and on the brink of anxiety each day. Mornings are by far the worse time for me, as I am extremely nauseous, dizzy, and feel as though I will pass out with any activity. Furthermore, I know it has only been around 8 weeks since diagnosis, however, I have been unsuccessful in putting any weight back on despite going on a high calorie diet (3,500-4,000) each day. As a former athlete and still extremely active today, my body has been used to accepting high caloric days as normal. From a diet perspective, I have switched from whey protein to soy/pea proteins, take a recommended multivitamin daily, take an iron supplement daily, take a recommended prebiotic/probiotic/digestive enzyme supplement, eat plenty of lean meats, fruits and veggies, rice and beans, and refrain from eating any type of processed food. I had food sensitivity blood testing done and all food categories came back insignificant or negative for sensitivity (except tTg-IgA testing at time of diagnosis for gluten of course). My overall question is, why all of a sudden is my health beginning to deteriorate again after when I thought I was making good progress after going gluten free? Has anyone else experienced this by chance? Is there some type of “rebound effect” associated with going gluten free that anyone else may have experienced around the 2-3 month mark? I welcome any and all feedback, please! I am becoming extremely frustrated, worried, and anxious as this is a major life change for me. - Eric P.

Hi All, I was diagnosed with celiac about 4 months ago and am having persisting symptoms. I'm looking for some advice. Since January of this year I was having gastrological symptoms (sharp abdominal pain after consuming gluten or acidic foods, constipation, acid reflux, bloating, mild weight gain). Throughout the year I noticed other symptoms like face puffiness, especially around my eyes, mouth, and under my chin. I went gluten free in June because I realized it alleviated some intestinal symptoms. They tried to give me omeprazole for the acid reflux but it made me very nauseous so I stopped. I also found out I was anemic and began taking iron supplements. In August I went back on a gluten diet for two weeks in order to have the celiac blood test, which came back positive. The next available appointment for an endoscopy/biopsy wasn't until November and my doctor said I could remain gluten-free because it would put me in too much pain, but that it may cause a false negative in the biopsy. So I decided to act as if I had celiac-- I stuck to a VERY strict gluten-free diet and started to really pay attention to cross-contamination. I got all new cookware, etc. However, at that point a whole host of other symptoms began, mostly neurological. I started getting debilitating brain fog (like I couldn't think clearly at all, couldn't pay attention, felt brain dead), my anxiety and depression went through the roof, I felt dizzy constantly (like the room was spinning), headaches, fatigue. The intestinal symptoms got better-- no more sharp pain, no acid reflux unless I got gluten sick, less bloating. My skin and face also began to suffer-- it started looking dull and sagging like I was aging (I'm 24 and otherwise healthy), acne got worse, my face was more swelled than before, my eyelids started drooping (the left one droops all the way to my eyelashes). But the neurological symptoms were the most difficult to endure because it made functioning in daily life almost impossible. I suspected a thyroid issue and got that tested but the results were normal. I finally had my endoscopy and the biopsy results were negative other than some "mild chronic inflammation." Slowly over the course of 4 months there has been some improvement (my face looks less puffy some days/acne has cleared up), my dizziness is better but still persistent, my brain is still foggy but better than before. My first clue to getting gluten cross-contaminated is a bout of dizziness followed by a panic attack and acid reflux, constipation the next day, and pretty bad brain fog for a few days until I level off. I have little to no other gastrological symptoms. Despite being better than before, I still haven't felt "normal" in 4 months since August. I had been feeling like I was improving slightly but recently I feel like it's leveling off and I'm stuck at this half-sick stage. I am very strict with my eating habits and I eat mostly vegetables and meat. I exercise multiple days a week. I don't understand why these neurological symptoms came on so suddenly when I had already been on a gluten-free diet for a few months... I don't understand why I'm not getting better. When I consulted my doctor about this she said I might be having physical manifestations of anxiety/depression (since they came on so quickly after I was formally diagnosed and that could've triggered it). But I feel like there is more going on in my body. I just want to feel like a normally functioning human again. So I'm asking for some advice on what to do next? Why am I not improving? Do I just need to give it more time? Any other tests I could be taking to see if something else is going on? My doctors have been so unhelpful. Thank you!

I’m the parent of a nearly 15 year old daughter. 5 years ago we finally found something that made a difference in her pain. A natural doctor did a blood test showing her to be severely gluten intolerant. Regretfully, we did not know to test her for celiac before removing gluten from her diet. Without that diagnosis, many doctors have made us feel gluten intolerance isn’t that serious. Very long story. Anyway, after 5 years of strict gluten avoidance, we were on vacation and let our guard down. Served what we thought was rice, she ate a portion. It ended up being ORZO. Pasta that looks like rice. That night she was dizzy, faint, even developed a fever. She slept most of the next day not eating much at all thinking she was coming down with a cold. Then, severe stomach pain and headache. Then, she threw up everything she ate for a few days. Ready to take her to the ER, we realized it was gluten! Picked up some digestive enzymes, anti-nausea medications, ginger, peppermint, tea, you name it. Today was the first day she could eat proper in a week. Still having some discomfort. Joint pain starting now too. My main question is: Is this typical for just gluten intolerance or does it sound more like celiac? She has been severely vitamin d deficient taking as much as 10,000 iu a day in liquid D and never bringing her levels to normal and menstral cycle never regular although she started at 10. Goes for months without and then when it does come, crazy heavy lasting weeks. Doctor still wasn’t horribly concerned. Just exhausted trying to be our own doctor. Insurance constantly changing making us look for new doctors. I wish I was rich. So expensive and frustrating having to try to get enough bedside time with each new doctor to reexplain her whole journey. Any information appreciated. She was doing much better by strictly avoiding gluten all these years but this last episode has me researching again to do what I can. Again, what do you think? My gut says “Celiac” but I guess we might not ever know for sure.

I have been trying to put all the pieces together since my diagnosis 1.5 yrs ago. I have been having lingering neuro symptoms that no one can figure out. I have been checked for seizures, all other autoimmunes etc...and of course, my file at the hospital needs it's own zip code. I know there is something else wrong....could it still be the damage from the celiac? Of course, but in my gut (no pun intended) I believe it is more. I have been logging lately, and it came to me this morning. OMG, could it be RICE? I am extremely sensitive to gluten exposure. I react insanely to gluten-free oats. The celiac doc put me on the Fasano diet. I did well, and there was some improvement with sleeping through the night. Neuro symptoms were still present, and to me, seemed worse. My brain would have a fluttering sensation at times, extreme dizziness/ lightheadedness, weakness to name a few symptoms (bone pain, back pain, arm pain etc) odd episodes where I could barely walk or speak from weakness. My psoriasis has been very angry lately What did I rely heavily on during the Fasano? RICE. The week I was away at the cottage, what did I eat for almost 2 meals a day? RICE. That was probably my worst week. The past few days, the dizziness has returned...I had chicken coated in a heavy brown rice flour mix, and made banana bread from a rice flour blend (which I generally don't eat). However, I cannot really find a link with rice and neuro issues. So maybe I am just grasping at straws here. But it seems to be a big coincidence. Also, when I was extremely ill before my dx, I could barely eat or keep food in. My neuro symptoms were off the charts then. I lived on rice cakes......sometimes twice a day....

Hi all, I’m new to this group. I’ve been gluten free for a year now with celiac. I’m very careful at home, but find I get diarrhea every time I eat out. Recently we moved and I’ve been having a severe flare up. I’m experiencing what I think is brain fog, dizziness, vertigo, to the point that it’s affecting my everyday functioning-similar to when I’ve forgotten to take my medication for a few days. I’ve been on generic Zoloft for years without issue, but I recently read that a reader found that a flare up prevented the absorption of medication. Has anyone ever heard of this? Am I just experiencing brain fog?? Any suggestions are welcomed. Thanks in advance. Nicole

I have been gluten free since Feb 2012. Many of my symptoms have subsided, but there are some alarming ones that have maintained and persisted. To the extent I had gone back to the dr. b/c I believed them to be something separate from the celiac disease. Now I'm not sure. The dr.s have no clue and I believe they are ready to send me for a psych consult. The neurologist alluded to a conversion disorder...psychosomatic etc.....I know that is not it. My celiac dr had put me on the Fasano diet, b/c I am so sensitive to gluten, and the 3 accidental exposures I have had have laid me out for 5 weeks at a time. I have been doing better since the Fasano diet, but these things have stood out glaringly. I have persisting dizziness and lightheadedness. Fatigue is severe. I wake up fine, and do as much as I can before I am a waste case for the rest of the day. That is between 6-9 am... and then I am exhausted for the rest of the day. If I rest, I can get a little energy back and it is gone quickly I feel like a cell phone that can't hold a charge. I have episodes when I am walking, I start to slow down, balance is off...weakness takes over, I can barely walk, or hold a conversation. My face goes grey, my eyes are sunken. I need assistance getting into a chair. It takes a few hours before this passes. I feel like I am trapped in my body. Sometimes this comes with a sensation of a shivering or fluttering sensation in my brain. It is very concerning. However, the neurologist has never heard of this before. (thankfuly my celiac doc told me yesterday that he has had patients with the same fluttering....No other dr!) When these episodes pass, they leave me exhausted for hours to days. Please can someone advise if they have had some of the same symptoms? My ANA is high, 640 My ttg is around 29. I live in 100% gluten free house. Including all of my beauty products.