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Hey there! Before I get into the details, I just wanted to start off by saying how grateful I am to have come across this website. It is so comforting to know that there’s a community of people out there who understand the difficulties of celiac disease first hand. So thank you all for sharing your experiences. Below I’ve listed three main issues I’ve started seeing and I am seeking some advice. For context: I’ve been following an 100% gluten free diet for about 6 months now, but just started noticing these symptoms within the last couple of weeks or so. I’m not sure if anyone else has experienced these problems too but just thought it wouldn’t hurt to reach out. LACK OF APPETITE: Has anyone else experienced a lack of appetite after following a strict gluten free diet? I’ve personally always had a great relationship with food and eating regularly. But ever since following a gluten free diet, I haven’t been eating much, or anything at all for that matter. Sometimes I won’t even realize that I haven’t eaten anything by dinner time. I genuinely don’t feel hungry. Can others relate? Any tips? INSOMNIA: It just these last couple of weeks where I have been experiencing the worst insomnia. I can’t sleep at all anymore. I’m lucky if I fall asleep around 2-3 o’clock. It’s been so incredibly frustrating for me to deal with. I just feel so lost with this. I’ve tried googling and to my understanding, no gluten in my diet makes it harder to get tired? Idk. Feel free to correct me on that one. I’ve tried sleeping pills but I really want to avoid relying on them if possible. I have a vitamin b-12 deficiency, and have read that others have found that taking b-12 before bed has improved sleep. Im willing to try anything at this point, so I’ll see if it works. Haha as I’m writing this at 2:30 am. NAUSEA: I’ve noticed as I’m lying down to sleep I feel slightly nauseous. I just have to sit up which makes it harder to sleep. Disclaimer, i haven’t actually thrown up yet. It’s weird, it doesn’t reach or get to that point really, but I’ll still feel nauseous. Mainly at night but sometimes during the day. Has anyone else experienced this? If you have any advice please share.

hi guys, i have recently (July) been diagnosed with celiac disease however via blood results my ttg iga was 128 which is ten times over normal and endomysial was a strong positive. I also had high lymphocytes and low vitamin B12. My GP advised due to how high to start a gluten free diet immediately which i did, my bloating, brain fog, bowels etc got how they should be and anxiety also. The Gastro dept have contacted me asking for me to go onto a gluten diet for 8 weeks for a biopsy which i have been glutened and has caused me utter hell in past. My concern is why on celiac foundation website are we told if it is ten times over normal count that pt should not necessarily need an Endoscopy. I have had a MRI due to brain fog, and they had found white matter on my brain that is linked to celiac. PLEASE HELP I HAVE NO IDEA WHAT TO DO, HE JUST TOLD ME TO GO ON GLUTEN DIET NO ADVISORIES NOTHING, EVEN WHEN I AM A STRONG POSITIVE!!!! and i really do not know if it is worth the trauma.

Hey y'all, I will try and make this short and sweet. Hoping someone can help me figure out what my next move should be! I was tested July of 2021 by my endocrinologist and told I "need to stop eating gluten". I wasn't given follow-up appointments with any other doctors, or even told I would need to do that. Fast forward to now, I have been DILIGENTLY gluten-free (I don't even dine out at restaurants anymore for fear of CC) since I was given that "diagnosis". I saw an allergist recently who did the genetic panel, after viewing the result she told me that i am "very low risk" for celiac. I dug out the old bloodwork online from the Endo, it was as follows: ttg dGp Positive ** Endomysial antibody IGA negative ** ttg IGA <2 The current tests from the allergist: HLA-DQB1*02 Negative ** HLA-DQB1*3:02(8) Negative HLA-DQA1*05 Positive I don't know what to think, or where to go from here. I have an appointment with a GI next week, but I am not sure what to ask for. Previous to July of '21 I had my gallbladder out because of a huge stone that caused me debilitating pain. The reason for the testing in july of that year was I was still having awful gut issues. I also now have TERRIBLE acid reflux, if I don't take famotidine and pantaprozole daily it is so bad I'm afraid to eat anything at all. Any insights are so incredibly appreciated, I am at a loss here. Google just further confuses me at this time- too much information! Thank you in advance!!

I was diagnosed with celiac disease back in August 2019. Prior to my diagnosis I was struggling with a severe eating disorder, switching back and forth from binging and purging to starving myself. I gained 20lbs in 3 months but I’m now down 30lbs since then. And that didn’t happen by following the diet and taking care of myself.. I will starve myself and then binge on pizza or fast food and sometimes purge after. And obviously I end up in excruciating pain and sick from the gluten. I have recently become extremely ill, no energy, constant bloating and cramping, anemic, hypo thyroidism etc. To the point my family has become aware and is very concerned. As well as my doctor looking into possible crohns or cancer. My fiancé knows about my eating disorder and is trying his best to help me but I hide it from him. I know this is crazy and I’m essentially killing myself. I don’t know what’s wrong with me. This started in September 2018 and I stoped when I got my positive blood test but when I had to eat gluten before my scope I completely relapsed and haven’t been able to fully stop. I’ve been seeing a psychiatrist and psychologist and they put me on vyvanse which makes me feel completely out of sorts mentally but gets rid of my appetite completely. This has gotten to the point where I’m wondering if I should be checking myself in to an eating clinic or something. This has consumed me entirely and I’m not sure how to get this under control..

I need help! I’m not sure if it’s gluten or a fatty intolerance that I have but I can hardly eat anything without having a leaky gut ? even just the smell of fast food can trigger my body, and it can happen up to 3 or 4 times within an hour. I am getting checked for it in April (so far away I know) and it’s always leaky gut never vomiting or anything like that. And it just happens, it’s something I can’t control... this all only started happening in December, I was told celiac but I feel like it’s more then just that.