Gluten Free And Exhausted - Related?

[Rich2390]

Hi everyone, this is my first time posting but ive been reading for quite awhile now and i just wanted to say this is a great site.

So i was diagnosed with celiac disease back in may, and with the exception of the couple weeks after my diagnosis have been completely gluten free. My doctor told me that after going on a gluten free diet i should feel much better within a few days, which didnt happen. In fact, my intestinal problems continued with varying symptoms up until maybe a month ago, when i started a probiotic. This post isnt so much about my intestinal problems i just figured i would give a little background .

When i was first diagnosed my doctor also told me i was low on vitamin D and vitamin B, so he started me on a daily vitamin D supplement and vitamin b12 shots once a month. Again, i was told that after my vitamin b12 shots i would feel like a totally different person. Now when i first started getting these shots i didnt really feel all that energetic, but i was still able to function, although when it came time to get my shot i would be more exausted that i had ever felt in my life. This particularly came into effect about a month and a half ago when i started sleeping practically all day and even when i was awake i didnt have the energy to do anything. I was also having vivid dreams all night, which wasnt so much a problem, except for the fact that i knew it was unusual for me, and it didnt always feel like i was actually resting while sleeping. Now i attributed this to needing a b12 shot, but after i got it i didnt feel any better. For the past month and a half i have had little to no energy at all.I used to go to sleep at midnight and wake up at 5:30 and now some days i go to sleep at 8pm and wake up at 11am and am still too tired to do anything. Some days are alright, and other days i only have the drive to do something for about a half an hour, the rest of the day is just my brain taking a vacation. This is extremely frustrating for me because for the first time in a few years im feeling good enough to go out and see my friends, and im too tired to do anything. Im only 20 years old and had to drop out of college due to my undiagnosed celiac disease and am hoping to go back in a couple months for the spring semester, but i cant afford to go and have to leave again. I went to see my doctor and he told me that fatigue is one of the hardest things to diagnose, so he wants me to have some tests. He did do a blood test, but he didnt see anything abnormal, and my vitamins were all in the normalish range(although from what ive read on this site, for people with celiac low vitamin levels might not be enough, so im currently waiting for the actual numbers to see what it says). He also wants me to have a glucose test and assuming nothing shows up, perhaps a sleep study.

My reason for this post is mostly just confusion on my part as to if these symptoms are a result of me "detoxing from gluten"(although to be honest im not exactly sure what people mean when they say that so i dont know if it applies to me) and if this really is connected to celiac disease or if i should be looking elsewhere. Sorry for the wall of text, im a rambler, and im sure i forgot something, but i wanted to see if any of you had experienced this before or had heard of someone who had. It took me 4 years of being sick to figure out what was wrong, and i dont want to have that happen again, im looking for the light at the end of the tunnel. Im at the point where i dont care what i have to do, i just want to start living my life again.

Thank you for taking the time to read this ^^

Rich

[chronicowie]

I know what you mean by the unrelenting fatigue...

I think there is a very good chance that your "normal" vitamin levels are on the low side of things. This happened to me actually. It wasn't until I found a new doctor who was very schooled in celiac disease who explained my past bloodwork to me in terms of ranges. I technically wasn't out of range for anything except vitamin D, but pretty much everything else was on the low end. Same thing with the thyroid (have you had that checked?).

Another thing she mentioned was that the recommended daily dose on the back of bottles isn't always enough to make up a deficit...I'm on 4 times the daily recommended dose for vit d.

[Dixiebell]

Welcome Rich!

Your vitamin levels are a great place to start. It could be that your vit D is still to low. Has your Dr. ran a thyroid test yet? My understanding is that it can be very closely connected to celiac.

Something else to think about- have you been eating more of any type of food or drink? Soy maybe?

Yes, I agree, everyone here is great.

[Syl]

Hi everyone, this is my first time posting but ive been reading for quite awhile now and i just wanted to say this is a great site.

So i was diagnosed with celiac disease back in may, and with the exception of the couple weeks after my diagnosis have been completely gluten free. My doctor told me that after going on a gluten free diet i should feel much better within a few days, which didnt happen. In fact, my intestinal problems continued with varying symptoms up until maybe a month ago, when i started a probiotic. This post isnt so much about my intestinal problems i just figured i would give a little background .

When i was first diagnosed my doctor also told me i was low on vitamin D and vitamin B, so he started me on a daily vitamin D supplement and vitamin b12 shots once a month. Again, i was told that after my vitamin b12 shots i would feel like a totally different person. Now when i first started getting these shots i didnt really feel all that energetic, but i was still able to function, although when it came time to get my shot i would be more exausted that i had ever felt in my life. This particularly came into effect about a month and a half ago when i started sleeping practically all day and even when i was awake i didnt have the energy to do anything. I was also having vivid dreams all night, which wasnt so much a problem, except for the fact that i knew it was unusual for me, and it didnt always feel like i was actually resting while sleeping. Now i attributed this to needing a b12 shot, but after i got it i didnt feel any better. For the past month and a half i have had little to no energy at all.I used to go to sleep at midnight and wake up at 5:30 and now some days i go to sleep at 8pm and wake up at 11am and am still too tired to do anything. Some days are alright, and other days i only have the drive to do something for about a half an hour, the rest of the day is just my brain taking a vacation. This is extremely frustrating for me because for the first time in a few years im feeling good enough to go out and see my friends, and im too tired to do anything. Im only 20 years old and had to drop out of college due to my undiagnosed celiac disease and am hoping to go back in a couple months for the spring semester, but i cant afford to go and have to leave again. I went to see my doctor and he told me that fatigue is one of the hardest things to diagnose, so he wants me to have some tests. He did do a blood test, but he didnt see anything abnormal, and my vitamins were all in the normalish range(although from what ive read on this site, for people with celiac low vitamin levels might not be enough, so im currently waiting for the actual numbers to see what it says). He also wants me to have a glucose test and assuming nothing shows up, perhaps a sleep study.

My reason for this post is mostly just confusion on my part as to if these symptoms are a result of me "detoxing from gluten"(although to be honest im not exactly sure what people mean when they say that so i dont know if it applies to me) and if this really is connected to celiac disease or if i should be looking elsewhere. Sorry for the wall of text, im a rambler, and im sure i forgot something, but i wanted to see if any of you had experienced this before or had heard of someone who had. It took me 4 years of being sick to figure out what was wrong, and i dont want to have that happen again, im looking for the light at the end of the tunnel. Im at the point where i dont care what i have to do, i just want to start living my life again.

Thank you for taking the time to read this ^^

Rich

Hello Rich, very sorry to hear about your situation! Chronic fatigue is certainly a part of Celiac's Disease, and I myself am still suffering from it day in and day out. I see your doctor found low levels of a few vitamins, but did not recommend a good liquid multi vitamin? A very large problem that Celiac's disease causes is malabsorption which causes you to digest less of the vitamins and minerals you need from food due to the damage gluten has done to your villi. Because of this your body is crying out for the nutrients it needs and there are a few ways you can aid to help your healing. I was diagnosed in June of 2010 by blood tests and confirmed by biopsy just last month so I've learned a thing or two in the time I've been gluten free.

1) Instead of vitamin shots alone I would highly recommend you discuss other nutritional supplements like a multi vitamin. I am currently using Country Life Liquid Multi and when I started that about a month ago it didn't take long for me to finally see increased energy levels again due to more nutrients actually being absorbed. My 2nd worst symptom has been Chronic Fatigue so I can certainly identify with you there.

2) Eat as many whole, natural foods as you can!! When I originally went gluten free I did not do this and continued to eat a lot of processed foods which I later learned is not very helpful for the healing process. Your diet is KEY to your getting better so the less ingredients the better! There are so many questionable ingredients we must avoid, not to mention ones that just aren't healthy in most processed food that its best you stick to whole fruits and vegetables, organic things, minimum ingredients, etc. I home cook my every meal to make sure I know every last thing thats in it. Its not easy as I've learned myself, but it makes a difference, I know that now.

3) You mentioned going gluten free, but is that all? Its not unusual for someone with celiacs to have other food allergies along with intolerance. For example, I am intolerant to dairy, lactose, and even tho an allergy skin prick test showed I am not allergic to things like Soy I found I have an intolerance. This is a very important step because even if you are avoiding gluten if you are ingesting other foods that you are allergic or intolerant to you only add to the problem. The inflammation that is a result will continue to cause you not to heal as you should. I've learned this myself through trial and error over the months

These are some important things for you to investigate, but certainly not all you can be doing. Living with Celiacs and fighting it is no easy task, but the more you learn the better you'll be able to fight it and overcome the damage its done to you. I myself am only 24 years old and have been suffering from it unknowingly for a few years so I know all too well what its like to feel completely unmotivated or unable to do anything because of fatigue. The best advice I can give you is READ! There is a ton of information on not only this forum, but everywhere from the net to your library. I would start with talking to your doctor about the Multi vitamin, perhaps getting some allergy testing done, and eating more whole foods.

I think most important of all - KEEP YOUR HEAD HELD HIGH! Theres no quick fix, but you will get that energy back soon enough and be able to enjoy life to the fullest again! This website and the community that makes it are a blessing to anyone with the disease so be sure to take advantage of everything they have to offer (I know I have.) Hang in there!