Frustrated :(

[SleepyBunny]

Hello everyone! I'm so glad I found this site. Hopefully you guys can help me feel better. I haven't "officially" been diagnosed yet. My blood work is supposed to come in next week. Before all of this I wouldn't just sleep I would hibernate. 10-12 hours of sleep was my 7-9 hours for other people. On days were I didn't have to do anything I would just sleep until I woke up and would end up with a sleep hangover. Total brain fog just feeling like crap. After a while it started getting to where I would have sleep hangovers and a migraine to top it off. Pain over my right eye that would last forever. After I started the gluten free diet 2 weeks ago it actually got better. I work nights so a lot of times I would go to bed between 4-6 am. I was actually going to bed around 2 2:30. Yay! And waking up around 11 or 12 which is early for me. And for the longest time I wouldn't have dreams. Now I'm actually dreaming! But yesterday and today I'm sleeping a lot again. No real sleep hangover feeling. I'm just so worried this might just be normal for me and I can't stand it. On my days off I sleep through half of them. I'm still new to all of this but I don't think I glutened myself. This is all so frustrating. I feel like I'm trying hard to get this right. You read the ingredients and get something. Then you go home eat some then go online and double check just to find out there's a "chance" there could be gluten in what you just ate. You never know if you are feeling a certain way because you ate gluten or maybe it's just a normal thing that happens to anyone eating that particular thing. I'm just so confused I just want to feel normal. I was actually feeling the brain fog going away and I'm afraid that's going to come back too. I'm sorry this is so long. I hope some of you can help

[eatmeat4good]

For several years I slept as if I were in the twilight zone...Woke up stumbled to the bathroom then to the kitchen to eat some toast and tea and then back to bed. I had no idea what was wrong with me....absolutely no energy and at one point I felt like I was going into a coma...I slept 24 hours and didn't know what day it was. None of this happens to me now...I sleep normally and wake on my own after 8 hours of sleep. The migraines were the worst...there was nothing that would stop the pain...and walking around in a foggy brained state...Yes it could all be related to gluten. You have to be really careful about CC. For a while I tried eating in gluten free restaurants but it just didn't work for me. My good days slowly started becoming more frequent and my bad days less frequent...but only if I cooked my own food. Your sleepiness could be related to the opiate effect that gluten has on the brain. It should get better as time goes by. The longer you are gluten free, the less sleepy you will be. But only if there is no trace gluten. That is how it is with me. When I get that exhausted, sleepy, fatigue and a migraine headache, I know I have been glutened. However, for you, you haven't been gluten free that long and you could still be sleeping it off due to the withdrawal effects of gluten. It happens to a lot of people. It isn't just you. Hopefully it will get less and less for you as it did for me. Good luck. I was not alert at all for years until I stumbled upon the information here...that was less than a year ago and I'm actually funcitoning normally now. Give it some time...

[SleepyBunny]

For several years I slept as if I were in the twilight zone...Woke up stumbled to the bathroom then to the kitchen to eat some toast and tea and then back to bed. I had no idea what was wrong with me....absolutely no energy and at one point I felt like I was going into a coma...I slept 24 hours and didn't know what day it was. None of this happens to me now...I sleep normally and wake on my own after 8 hours of sleep. The migraines were the worst...there was nothing that would stop the pain...and walking around in a foggy brained state...Yes it could all be related to gluten. You have to be really careful about CC. For a while I tried eating in gluten free restaurants but it just didn't work for me. My good days slowly started becoming more frequent and my bad days less frequent...but only if I cooked my own food. Your sleepiness could be related to the opiate effect that gluten has on the brain. It should get better as time goes by. The longer you are gluten free, the less sleepy you will be. But only if there is no trace gluten. That is how it is with me. When I get that exhausted, sleepy, fatigue and a migraine headache, I know I have been glutened. However, for you, you haven't been gluten free that long and you could still be sleeping it off due to the withdrawal effects of gluten. It happens to a lot of people. It isn't just you. Hopefully it will get less and less for you as it did for me. Good luck. I was not alert at all for years until I stumbled upon the information here...that was less than a year ago and I'm actually funcitoning normally now. Give it some time...

Thank you so much!! I was wondering if withdrawal could be it too. Maybe that's it. I know I have to give it time. I've just been feeling like this for so long and am happy to finally know what might be causing it. I'd tell my dr about how I was sleeping all the time and he prescribed a med they give to people with narcolepsy (Provigil). Luckily the insurance didn't want to pay for it so I didn't take it. I have been having tummy issues too and I went to a different dr and he's the first one to suggest this. I even went to a gastro. dr before and he just said take this this and this. So I just have to keep taking these meds all my life? Yup. That was it. No testing or anything. After about a week gluten free I actually felt "awake" for the first time probably ever. My tummy feels a lot better too. Just still trying to balance everything with the right amount with meds. I just don't want to go backwards. I can deal with the stomach problems but not the sleeping and brain fog. I don't want to feel that way anymore. Is there anything to do for this withdrawal? Do I just have to wait it out?

[eatmeat4good]

I'm not sure how long it lasts. Mine varied month to month but then of course I was making a lot of newbie mistakes and getting CC until I figured it all out. I stopped eating out and only cooked my own food. That was the best help I gave myself. I was sometimes frustrated about being tired and thought I should be feeling better by now. But then I would remind myself that I had been sick for 7 years and that is a long time...then I got a little more patient and a little more vigilant and about 4 months into it I was feeling alert almost every day. Then the secondary food intolerances started to show up...ugh...it has been a year long science experiment. But well worth it to feel awake every day. I know exactly what you mean when you say you felt awake and alert for the first time probably ever. Now I feel pretty good every day. But then I'm 48 so all of this might heal quicker for you if you are younger. The research does show that younger people recover more quickly! So that's good news! I don't know what to tell you about the meds...you will have to decide. I did find that I was nauseous a lot as the baby villi healed...and there was a lot of stomach rumbling too. I took promethazine to deal with the nausea for a while. Keep hoping, and checking labels and get extra rest when you need it!

[rosetapper23]

Oftentimes when someone first goes gluten-free, it's tempting to buy gluten-free substitutes of those foods you're most accustomed to eating. However, it is MUCH better to simply eat all-natural foods that don't contain gluten while you are trying to heal. Many of us never return to eating processed foods because we get used to eating natural foods. Believe me--you won't have to worry about foods containing secret gluten if all you're eating is meat, vegetables, fruits, rice, nuts, etc. Also, many people react poorly to the xanthan gum that's used in gluten-free processed foods. Another positive is that natural foods generally have higher nutritional value....and you should start feeling better sooner. Good luck!

[AVR1962]

I too was sleeping 10+ hours a night, one of my first signs besides my blurred vision, and docs gave me prenatal vitamins but of course then no one knew what was going on and the real hard symptoms had not hit yet. The tests are not always reliable which you will read if you keep searching for info about testing so be very careful when you get your results. You could very well have Celiac or at least a gluten intolerance and your tests won't indicate it.

My suggestion would be to really tighten that diet and stick to your fresh veggies, fruits, meats. Look at all labels and see if you find a difference. Gravies, packages rice mixes, soy sauce of all things, and lots of packaged and frozen foods have wheat in them.