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Is All Of This Exhaustion Normal?

pogirl1786

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pogirl1786 Apprentice
pogirl1786
Posted

i've been gluten free for about 4 or 5 months, and although i've improved tremendously, i still have bad days. my stomach still hurts on some days, probably cause by stress, but mostly what is frustrating is how tired i get. i'm 17 and i used to be able to run around without feeling really tired. some days i wake up and i'm just physically tired, as if i had worked out a lot the day before, but of course i didn't do anything but go to school and come home. i was wondering if anyone else feels like this sometimes. i know that it takes time to heal and be completely better, but i just wonder how long this will take. my friends are really understanding about my sick days and my tired days, but i hate having to bail out on things when i don't feel well because i feel that since i've used my celiac disease as a reason for my not feeling well enough to go out on several different occasions, that i don't really have a legitimate excuse...i'm just tired of being tired and having to deal with all of this. does anyone else feel the same?

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YankeeDB Contributor
YankeeDB
Posted

I asked a gi doctor who has Celiac Disease himself this same question. He said it can take a long time to heal so you need to be patient. I wonder myself about other sensitivities--yeast, eggs, dairy, corn, maybe others. He told me not to worry about these things but I've found that keeping a food diary with a record of how I feel seems to help me make better diet choices. I'm hoping with complete healing that I won't have to be so vigilant. As it is now, I eat NO dairy and eat minimal of the other items I've mentioned. Even soy I wonder about sometimes, though I can have smallish amounts and feel ok.

Good luck to you!

  • 3 weeks later...
AntiGluten Rookie
AntiGluten
Posted

Hey pogirl,

I'm 20 and was diagnosed when I was about your age. I started feeling a little better too, my diarhea stopped immediately and haven't had much trouble with since for that the past few years. But I still feel tired a lot. I keep a food diary like Yankee does and through trial and error found out that I react to soy. I cut it out of my diet literally about one week ago. Since then I've actually felt a little more alert and awake most of the time. My friend told me that I seem more energetic also. So maybe you're reacting to foods other than just gluten. I know that's not news you want to hear, gluten free is bad enough. But if you can figure it out and elliminate it, you'll feel 10x better. I'm starting to.

You should look in the Sleep section under a thread called "Can't Stay Awake." There are a couple pages where people have replied with our same problem and give many good suggestions. Might be something good for you to check out. I know it's hard and very frustrating, but keep with it. Eventually you'll figure it all out and feel better than you ever have. I'm not quite at that point yet after 2.5 years, but I've actually felt better this past week than I have in quite a long time.

pogirl1786 Apprentice
pogirl1786
Posted
  • Author

thanks to both of you :) i'm looking into the soy thing...once again, thanks for the encouragement!

  • 2 weeks later...
hafadai43 Apprentice
hafadai43
Posted

I'm 18, almost 19, and I was diagnosed just over a year ago. It's a good day for me to read your message on here, because I'm having one of those "bad days." Actually about a bad week. I have been gluten free for a year...and I lately I've had some stomach aches...like I'm extra sensitive to anything that isn't fruits or veggies or rice. Today I am feeling so tired I can barely keep my eyes open while I'm at school...which is a little depressing because I have to work tonight too! I just wanted to let you know that you are not alone, and I have had to bail out on a lot of things as well, and stay home on friday and saturday nights because I"m just way too exhausted to do anything...although I'm not exercising really. I used to exercise nearly everyday and its important to me...but I barely ever have the energy to do it anymore. So I know what you're talking about! Hang in there.

pogirl1786 Apprentice
pogirl1786
Posted
  • Author

Thanks for your reply! It's nice to know that others feel the same way that I do from time to time. It's so frustrating! Thanks for the encouragement and I hope you get to feeling better this week.

  • 2 years later...
egiap10 Newbie
egiap10
Posted

hey, yeha im 17 and im sick of feeling like an old woman too.. ive been really sick for the past yr, and its suppose to improve a bit within a couple of years, im not sure if it has to do with the long term substance abuse (ie gluten). ive nly been gluten free (and lactose free) for about a 2 yrs and fairly recently been diagnosed as having celiac disease.. its annoying because i dont think friends understand it and its kind of hard to explain it to them, always having to go back to "im allergic to bread rolls, they make me sick" etc really simplifying it. i know what you mean when you feel absolutly exhausted from nothing, and if you have the tiniest bit of gluten you feel terrible.. do you get really bad stomach pains?. i feel like my 'teenage years' are wasting away from being sick on the dreaded GLUTEN. meh. im glad ive got the chance to talk to other ppl suffering from celiac disease.

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Badreligion0204 Newbie
Badreligion0204
Posted

Im almost 25 years old and I was diagnosed when i was 21 (21st bday actually) and I understand what you all are saying. It is especially hard to make friends and relatives understand the severity of the situation. Common replies will always include "a little bit wont kill you !". When explaining it I usually just refer to it as an allergy which it is clearly more than, but to sit and explain what it is to every single person would be exhausting. No one really knows the damage gluten can have on our bodies. I go back and forth with how I feel. sometimes im fine but many times I feel it in my joints (especially knees and hands) most of the time. Does anyone ever have pains in there neck/back of head? Been having this problem for a little while now, my gluten-free jokes and says my neck cant support my big head. I find the lactose intolerance that came one with the celiacs to be the biggest hurdle for myself. if I could only give up lactose products id feel much better more often and have less stomach pains.

Lizzz88 Rookie
Lizzz88
Posted

Hey,

I'm 18 years old and I was just diagnosed with celiac disease about a month ago. I was wondering how long it took y'all to start feeling better after being on a gluten free diet. Sometimes I feel like this will never get better and i'm feeling very frustrated. i've had to completely change my school schedule because i've felt so sick. I was taking 17 hours and i had to change to all online only taking 12. I have a lot in front of me and I just want to know that it'll get better. I'll take any advice I can get! thanks! :)

Sillyyakdidi Apprentice
Sillyyakdidi
Posted
Hey,

I'm 18 years old and I was just diagnosed with celiac disease about a month ago. I was wondering how long it took y'all to start feeling better after being on a gluten free diet. Sometimes I feel like this will never get better and i'm feeling very frustrated. i've had to completely change my school schedule because i've felt so sick. I was taking 17 hours and i had to change to all online only taking 12. I have a lot in front of me and I just want to know that it'll get better. I'll take any advice I can get! thanks! :)

Hey, technically I'm not a teen, I'm 21, but I'm close enough, because I'm young like you. I had to cut down my courseload when I was in "crisis" before they figured out it was celiac. And, my biggest complain to my dr, although i also have some other stuff wrong, was that i felt like a 90 year old! And, the good news is, it goes away, i promise!! I've been gluten-free for a year and a half, and feel "young" again, and have energy again, It gets better! Hang in there! Every day should be a little better, but it does take months for your insides to heal depending on how damaged they are. On the bright side, now you can go to class at your computer in your Pjs!! =D hope things get better

quantumsugar Apprentice
quantumsugar
Posted

I'm not quite a teen either (22), but I'll pretend. I had the same problem... after the stomach issues started clearing, my biggest issue was the exhaustion I had all the time. Every single day, my body felt tired; getting less than ten (!) hours of sleep would make it even worse. Two years later, and I'm finally feeling close to normal in that regard. It does get progressively better, but (for me at least) it was really quite slow.

I had a lot of problems finding the energy to hang out with friends in the beginning, too. I felt like such a flaky friend, I just didn't feel like it (partially because it was really difficult to get used to spending time with people and feeling abnormal for my different eating habits). The good thing is, after you start getting better, you get to spend more and more time with them.

Finding other food sensitivities can help as well. I would have stomach problems and increased tiredness even from eating the amount of soy in a candy bar or pasta sauce (not much)... There are a few other things my body reacts to as well. You might try an elimination diet to see if anything else is causing you trouble, or if it's just natural healing time.

Good luck!

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    • trents
      Outgrow celiac?

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      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
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