I hope this makes sense but my brain is pretty fuzzy right now. I'm trying to be as brief as possible, but I don't want to leave out any important details, so I apologize if it seems too long and detailed.
Celiac runs in my family. I have the genes for it (tested 5 yrs. ago) but was told I didn't have it at the time, but could develop it later. I got tested again 15 months ago and it came back negative. I didn't think I had celiac, so continued on my regular diet. Then I was injured, had surgery, and was in a wheelchair for about two months. I've heard the disease can manifest after surgery and stress, and that situation was definitely stressful. Then I was convinced by family members to go gluten-free anyway, and I started that, but when I ate a bagel again, I got some serious brain-fog. I decided maybe I should try to get a diagnosis before going gluten-free for good.
I'm not sure how long I was really gluten-free. It could've been a month or it could've been a month and a half, I'm just not sure. But I think I was going gluten-light for maybe a month before that. Now I'm trying to do a gluten challenge and I don't know if I can do it. I'm having so many strange symptoms, I had a few days of dropping everything I tried to pick up and move around in my hands, like q-tips, utensils, etc., just having really poor dexterity, numbness around my lips, getting headaches frequently, jaw tightness, pains all across my facial bones, swelling in my gums, teeth pain, feeling like a new form of migraine I'd never experienced (used to get migraines but they pretty much stopped years ago) weird pressure changes in my head cavities (hard to explain), pressure in my palate, feeling like my ears need to pop, heaviness in my arms, searing, tear-inducing pain in my right arm, moving to my back around my shoulder blade, hips, cramps in my calves, horrible pains in my feet and heels, knee pain, ankle, wrist, tailbone/sacrum, I've had tightness in my throat, lump in my throat feeling, difficulty breathing, fatigue, feeling like I need to lay down 3 minutes into a shower, feeling like it's hard to raise my arms to comb my hair, then forgetting which way to turn the hot and cold shower faucets to regulate the temp., then trying to brush my teeth and thinking I had the toothbrush in the wrong hand shortly after. It took me a bit of looking down and thinking about it to realize it was the correct hand. I can't remember anything like that ever happening to me.
I've had days where I felt totally lethargic in the morning and then at night this super irritable, restless leg syndrome kind of feeling, just really uncomfortable and amped up kind of feeling. I've had a lot of trouble finding the right words. Like for instance trying to ask someone about "bingo" and what came to my head as I was grasping was "bicycle race". Trying to explain things or speak is super frustrating, and when my boyfriend asks me questions that require explanations I sometimes just have to tell him I can't answer. It's like my brain is stuck, and it just makes me really frustrated. I've been really touchy and emotional, and cry.
Another thing is that my period came at the normal time, but was very light and then just stopped. It's definitely the weirdest period I've ever had. Usually they are regular/predictable/similar in length and flow. I've also had more stretch marks seem to appear overnight. I got stretch marks on my stomach after the surgery and gained a bunch of weight. I was already overweight but I probably gained 50 lbs. since then. The weird thing is that you'd think once I got back to walking and using my legs, some weight would come off, but it seems like I'm gaining more than I did in the wheelchair time.
I explained some of those symptoms to the doctor and she said she had no idea, and when I talked about the breathing problem and the tightness in my throat she said it was probably a panic attack. I used to get panic attacks-- it was nothing like that. That's the thing about all of these symptoms-- they're not things I've experienced before. I tried to chalk it up to stress, or think of the possibility that it could all be in my head, but it just doesn't add up. Could I really will my joints to ache?
The thing that is especially driving me crazy is the possibility that I'll get another negative test. So I want to keep doing this gluten challenge thing but I'm not sure I can hold on much longer. And it's so hard to get definitive answers about how long the challenge needs to be. If I'm having symptoms, will I still test negative? I know I could be gluten-sensitive rather than celiac, but I really want a definitive diagnosis.
I've looked up my symptoms and they point to hypothyroid. I know Hashimoto's goes with celiac sometimes. Some of the symptoms seem to overlap.
So why am I writing all this? Well, in part to see if symptoms match anyone else, in part to vent, and also maybe hoping someone can shed some light on the gluten challenge and how much longer I have to endure this.
Thanks for reading!
Megan1980Member Since 25 Oct 2012
Offline Last Active Dec 03 2012 10:39 PM
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