Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Is All Of This Exhaustion Normal?


pogirl1786

Recommended Posts

pogirl1786 Apprentice

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



YankeeDB Contributor

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

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

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

  • 2 weeks later...
hafadai43 Apprentice

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

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

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Badreligion0204 Newbie

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

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
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

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!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

    2. - Lkg5 replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

    3. - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

    4. - Aretaeus Cappadocia posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,097
    • Most Online (within 30 mins)
      7,748

    Hana B
    Newest Member
    Hana B
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Charlie1946,  Sorry I sidetracked your thread a bit.  Apologies. Proton pump inhibitors, like Omeprazole, change the pH in our gastrointestinal systems which allows opportunistic microbes to move in and take over.  Have you been checked for SIBO?  There's a significant link between length of Omeprazole use and SIBO.  I had SIBO, thrush (Candida) and lichen planus and other problems while I was on Omeprazole.  I had to stop taking it.  It was a horrible time, so I understand how painful and frustrating it is.   You change your microbiome (the bacteria and microbes living inside you) by changing what you eat.  They eat what you eat.  Change the menu and you get different customers.   I changed my diet.  I cut out dairy because I was reacting to the casein and lactose.  I cut out all processed foods and most carbohydrates. I ate meat and veggies mostly, some fruit like apples and mandarin oranges.  By cutting out all the excess carbohydrates, lactose, and empty carbs in processed gluten-free foods, the opportunistic microbes get starved out.  SIBO bacteria send chemical messages to our brains demanding more carbs, so be prepared for carb cravings, but don't let the microbiome control you!   The skin and digestive system is continuous.  The health of our outside skin reflects the health of our gastrointestinal system.  Essential B vitamins, like Thiamine B 1 and especially Niacin B 3, are needed to repair intestinal damage and keep bad bacteria in check.  Niacin helps improve not only the intestinal tract, but also the skin.  Sebaceous Hyperplasia is linked to being low in Niacin B 3.  Lichen Planus is treated with Niacinamide, a form of Niacin B 3.   Vitamins are chemical compounds that our bodies cannot make.  We must get them from our food.  If our food isn't digested well (low stomach acid from Omeprazole causes poor digestion), then vitamins aren't released well.  Plus there's a layer of SIBO bacteria absorbing our vitamins first between the food we've eaten and our inflamed and damaged villi that may have difficulty absorbing the vitamins.  So, taking vitamin supplements is a way to boost absorption of essential nutrients that will allow the body to fight off the microbes, repair and heal.   Doctors are taught in medical learning institutions funded by pharmaceutical companies.  The importance of nutrition is downplayed and called old fashioned.  Doctors are taught we have plenty to eat, so no one gets nutritional deficiency diseases anymore.  But we do, as people with Celiac disease, with impaired absorption.  Nutritional needs need to be addressed first with us.  Vitamins cannot be patented because they are natural substances.  But pharmaceutical drugs can be.  There's more money to be made selling pharmaceutical drugs than vitamins.   Makes me wonder how much illness could be prevented if people were screened for Celiac disease much earlier in life, instead of after they've been ill and medicated for years.   Talk to your doctor and dietician about supplementing essential vitamins and minerals.   Interesting Reading: The Duration of Proton Pump Inhibitor Therapy and the Risk of Small Intestinal Bacterial Overgrowth: A Systematic Review and Meta-Analysis https://pmc.ncbi.nlm.nih.gov/articles/PMC12250812/#:~:text=The long-term use of,overgrowth dynamics is less clear. Lichenoid drug eruption with proton pump inhibitors https://pmc.ncbi.nlm.nih.gov/articles/PMC27275/ Nicotinamide: A Multifaceted Molecule in Skin Health and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC11857428/
    • Lkg5
      My sebaceous hyperplasia and thrush disappeared when I stopped all dairy.
    • Charlie1946
      @knitty kitty Thank you so much for all that information! I will be sure to check it out and ask my doctor.  I am just at a loss, I am on my 2nd round of miracle mouthwash and I brush and scrape my tongue and (sorry this is gross) it's still coated in the middle 
    • Aretaeus Cappadocia
      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods regarding their product "Organic Brown Rice Vinegar" (product of Japan) to ask how their product is made. They gave me a clear answer that they >do< use rice and they >do not< use wheat or barley in preparing their koji. FWIW, the product itself does not contain any labeling about gluten, gluten risk, or gluten safety. Based on Eden's statement, I am going to trust that this product is gluten safe and use it.
    • Scott Adams
      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.