Celiac disease looks like something different for everyone. For many, a run-in with gluten ends with an uncomfortable trip to the bathroom. For others, fatigue follows them around for days, making it hard to work. The thing is, there are over 300 symptoms of celiac disease, and it hits us all differently.
For me, gluten goes straight for my brain.
I’m having a hard time typing this right now as I suffer the lingering effects of gluten contamination from a few days ago. I ate at a restaurant, asked all the right questions, and was assured a safe meal. Now my fingers are struggling to make the connection between my brain and the keyboard as I attempt to tell you about it.
This is easily the scariest gluten contamination I have ever had since being diagnosed with celiac disease 5 years ago. Since Saturday night, I have felt completely out of control in my own body. Not only is it difficult to type, but I’m having a hard time talking in full sentences. I can’t quite seem to grab the words out of my brain. Walking is hard too, I keep running into doorways and tripping over my own feet. I feel drugged. And trapped.
I’ll probably come back later to add to this post and edit whatever might not make sense. But I wanted to push it out there in case anyone else is experiencing this and feeling alone.
You are not alone.
What does your celiac disease look like?
I get tired, so freaking tired. I’ll sleep 7 or so hours, but with I wake up it feels like I didn’t sleep at all. On top of that I get anxiety and canker sores. But the worst is the lethargy.
My blood test was negative for celiacs but I have so many symptoms that my doctor put me on a gluten free diet over three years ago. The longer I go, the worse my symptoms get when I get “glutened”. I find that makeup and shampoos and lotions and other cosmetics bother me.
I also get a weird circular rash inside my elbows.
My brain doesnt function properly. I can’t put together full sentences without breaking. I rethink and stutter. It gives me anxiety.
Then theres the long and painful trip the the bathroom and hours of discomfort in bed. I think little indians spear the insides of my intestines or something.
Is a biopsy really worth it if I know that’s what gluten does to me?
I hate when people say “Do you have Celiac’s?” and they don’t take me seriously when I say I don’t know, but I do have a sensitivity.
FYI: Just celiac, not ” celiac’s”. It is named for the blood vessl that supplies that area of your body, not a person.
I have the same thing happen when I get contaminated… its awful and its hard to make it so others can understand what is going on. You know know your not right….I also get the stomach stuff as well but when it hits my head and makes me foggy its the hardest. So sorry your going through this…
I’m so sorry, Alyssa! We have so much to learn about this disease… It seems we’ve only just begun to understand and educate. Thank you for being willing to share your struggles and use your pain to help others. Now rest up!
This sounds like a miserable contamination! I’m so sorry you’re struggling through this. I understand what a hardship Celiacs Disease, but I am fortunate to not suffer from it myself.
For the 30 years before I got my diagnosis, I lived my life in the fog. I kept trying to pretend I was me, but I was lost in the fog. Finally, when I stood up, I would feel like I was falling down. I got supplements that helped me tread water until I finally had to admit that even with them, every tissue in my body felt irritated. Finally, my doctor mentioned “gluten.” I had no idea what it was, but when I read the things it would cause, I believed that it would explain a few things. That was May of 2013 if I remember right. As time went on, I was found to have super-sensitive celiac and allergy to wheat. I have learned to eat by myself (in the car) in all weather while my family goes in a restraunt. I have lived with food sensitivities to nearly everything. BUT I have continued to get better and for that I am grateful. The last accident (that I know about) I spent the evening in the bathroom likely due to bacon with “natural flavoring.” Let’s just say that myself and my family have learned to be extremely careful with my food choices. I even call factories to ask what else they produce. Other symptoms that attack me are extreme swelling in the belly, and extreme fatigue. I am glad to say that these rarely happen to me anymore. I would just like to encourage anyone with celiac to keep fighting with care and get better.
I’m so sorry. Don’t know what to say other than that I’m sorry. I hope we all live to see the day that restaurants and others take us seriously. I don’t ever feel safe eating in a restaurant unless it is exclusively gluten free. We have one in Tucson and we need more.
Five years gluten-free. It seems worse every time I get glutened. Happened a couple days ago…Tired, so tired, cranky, I don’t feel like myself. I’m sick physically. My brain refuses to function in any normal capacity at all, and I fight to retain focus and get through my workday. My skin breaks out in dry rashes and cracks. I get blemishes. My muscles and joints ache deeply in a way I can’t even really describe. My knees won’t function and I have to lift myself up if I crouch down. My hips ache so that at night that I cannot sleep. Headaches for weeks.
I understand how you feel. I was glutened 6 days ago at a restaurant I’ve eaten at before without issue. But since then I have been dealing with extreme fatigue, stomach pain, and diarrhea (yep I said it). #celiacproblems. Needless to say it will be a long time before I eat out anywhere again. Hope you are feeling better soon!
I am so sorry I know how you feel I have celiac and a wheat allergy. I think I just got sick from meat from Whole foods there could be cross contamination even though it might be small amounts. I get horrible brain fog, dizziness, fatigue, stomach issues, and its hard for my mind to function. Thank you for sharing this! Hugs and love to you hope you are better soon.
I’ve been increasingly sicker & more swollen since I ate the “not so gluten free” Cheerios. When I looked 15 months pregnant with triplets, I went to the ER. Imagine my shock when I was told I have Cirrhosis of the liver! Two doctors admit it’s likely Celiac related, due to years of inflammation. The others are creepy about it.
I live in Memphis, so my primary care doctor is referring me to the team that kept Steve Jobs alive far longer than he could have hoped for. I’m praying I’m not going to have to get on that transplant list.
There is a chance for healing & regeneration. My doctor says he has seen worse cases recover, and others less damaged than me get worse and need a transplant or die. He’s on my side, thank goodness, and gives me hope.
Forty years of undiagnosed Celiac takes a toll! A year with no health coverage does too!
If what I’m going through influences others to be more Celiac aware or understand the devastation of not having access to decent healthcare, then my suffering is redemptive. Still, I pray recovery is part of my story, too!
I am a Dietetic Technician, Registered. I subscribed to you solely to learn about what people with celiac go through. I did not know about brain fog and many other symptoms.
I will certainly remember all of you and your experiences when I speak to my clients with celiac.
I’m so glad my experience can help you in this way. Thank you!