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

So Tired, Can't Stay Awake.


beth01

Recommended Posts

beth01 Enthusiast

I was wondering if anyone else ever has bouts of extreme tiredness?  Like can't stay awake for anything in the world tired, compelled to sleep for a few days?  I know I haven't been glutened, but it seems like if I have foods that I seem intolerant to the sleep is the first things that happens.  I have been ok with small amounts of soy, but I must have over done it.  I had to call my mom to come and get my kids because I just can't stay awake.  Just wondering if it happens to anyone else.


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



Celiac.com Sponsor (A8-M):



SMRI Collaborator

Yes---just woke up from a nap :D.....how's your sleep at night?  Do you snore?  

beth01 Enthusiast

No snoring and I sleep like the dead most nights. This happened to me a week or so ago and I slept for almost two days straight, was up maybe a total of 4 hours in two days.

beth01 Enthusiast

I was having insomnia really bad before but that has gotten so much better and I can sleep again.  But now I am on the opposite extreme

GottaSki Mentor

When i did a strict elimination diet geared toward Autoimmune Disorders i found that legumes are like sleeping pills for me.

 

Beans, Peas, etc make me very sleepy.

Peanuts make me tired but also very emotional.

 

Perhaps there is something besides gluten causing you trouble.

icelandgirl Proficient

Oh Beth...I'm sorry...that sounds rough. Before I was diagnosed I was like that, but have seen improvement. Had to go back to my Dr though because I'm still pretty tired. They are running a thyroid panel on me to see if something is up there. I'm hypo, but have never been tested for Hashi's. Has yours been checked recently to see if your on the right dose? What about your fibromyalgia? Did you start a new med and could that be causing it?

I'm glad your mom is there to help! I have to run to pick up kids. It's thundering and the new school policy is that if there is lightning you have to go all the way in to the classroom to get them. They won't release them outside...Ugh. Last time we ended up in a long line of parents waiting to get in and got soaked.

I hope you figure out something that helps. PM me if you need to talk!

millerb68 Newbie

Yes, this is one of my primary symptoms, even being 10 months gluten-free, and what made me go to my now-former primary care doc three years in a row (he told me three times "you are doing too much."). Some days I can barely hold my eyes open at work, so I have to get up and walk outside. For me, it's got to be another food sensitivity/allergy/intolerance and the leaky gut. I wish I had advice to offer, but I'm hoping others do, because it's really debilitating, and people don't understand the overwhelming sense of fatigue is not just being tired. 

 

Edit: to add that I was also diagnosed by my new doc with subclinical hypothyroid. Maybe that's a possibility?


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



Celiac.com Sponsor (A8-M):



beth01 Enthusiast

I had made some chicken and gravy last month and had some in the freezer and had it for dinner last night.  There must have been soy in the concentrated stock I used since I didn't have enough of my own.  I was making the kids lunch and fell asleep standing in my kitchen next to the stove. Damn food.

bartfull Rising Star

I'm another one who went from insomnia pre-gluten-free to craving constant sleep post-gluten-free. It's only lately (over three years in) that I have gotten my energy back. With my corn intolerance on top of celiac, I couldn't find any vitamins I could take. But I finally found some and after taking them for a few months I can actually sleep 7 or 8 hours at night and get through the day. Before I could sleep 12 hours straight through and STILL need a nap in the afternoon.

1desperateladysaved Proficient

I use to fall asleep between words on a spelling test.  I got better as my nutrient levels came up.

Dee

dilettantesteph Collaborator

That's one of my glutening symptoms.  I also have no energy to do anything but lie on the couch in front of the TV.  I fall asleep and wake up on the couch with the TV still on in the middle of the night.  Then the insomnia hits.  It goes away after I remove that gluten source.

 

I hope you feel better soon.

Serielda Enthusiast

Bingo, that sounds eerily familar here, from the last time I had an acccident and  was exposed to gluten. That lull in your mind and body that wants sleep, except for me the horrid cramping and bloating interfers and makes the cycle even more vicious.

   Also feels like me for the past few days, not sure what I came in  contact with as my hubby and I have a strict no gluten in the house policy due to cc concerns and that I am  still newly healing from years of damage that was done.

  This thread is one that caught my eye as of late as noted previously in this post is  I feel beyond exhausted, followed by the familar upset stomach symptoms. I usually do  a probiotic  soy free suplement smoothie/drink to help with that and past two weeks my store I buy it from was out, and the other options was not  vegan, or I felt didn't offer a whole lot of good to it. Could you have those symptoms by not suplimenting a probiotic for a short while?

I know from my logs on what I eat, plus no gluten was in the house, that it looks highly doubtful it was/is that unless something somewhere cc'd my safe food.

 

 

That's one of my glutening symptoms.  I also have no energy to do anything but lie on the couch in front of the TV.  I fall asleep and wake up on the couch with the TV still on in the middle of the night.  Then the insomnia hits.  It goes away after I remove that gluten source.

 

I hope you feel better soon.

  • 2 weeks later...
GF-30 Newbie

Hello everyone, new to this forum! Diagnosed with Celiac last month at the age of 31, and since then have been gluten-free! But there are days when I cannot keep my eyes open..especially after the lunch. Have avoided all gluten i could [though i do get gluten free flour from the market - is there a doubt that it is not gluten-free??) and then veggies and legumes and curd. No processed food at all...

 

So not sure what is really causing so much lethargy and sleepy feeling!

cyclinglady Grand Master

Welcome gluten-free@30!

Check out the newbie section under "Coping". There are invaluable tips! Here is the link:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Keep asking questions. We are here to help each other.

As far as being exhausted, you are sick. Time will heal as you are learning how to go gluten free. You might want to have your thyroid checked. That is a common problem with folks around here.

Hello everyone, new to this forum! Diagnosed with Celiac last month at the age of 31, and since then have been gluten-free! But there are days when I cannot keep my eyes open..especially after the lunch. Have avoided all gluten i could [though i do get gluten free flour from the market - is there a doubt that it is not gluten-free??) and then veggies and legumes and curd. No processed food at all...

 

So not sure what is really causing so much lethargy and sleepy feeling!

dilettantesteph Collaborator

Bingo, that sounds eerily familar here, from the last time I had an acccident and  was exposed to gluten. That lull in your mind and body that wants sleep, except for me the horrid cramping and bloating interfers and makes the cycle even more vicious.

   Also feels like me for the past few days, not sure what I came in  contact with as my hubby and I have a strict no gluten in the house policy due to cc concerns and that I am  still newly healing from years of damage that was done.

  This thread is one that caught my eye as of late as noted previously in this post is  I feel beyond exhausted, followed by the familar upset stomach symptoms. I usually do  a probiotic  soy free suplement smoothie/drink to help with that and past two weeks my store I buy it from was out, and the other options was not  vegan, or I felt didn't offer a whole lot of good to it. Could you have those symptoms by not suplimenting a probiotic for a short while?

I know from my logs on what I eat, plus no gluten was in the house, that it looks highly doubtful it was/is that unless something somewhere cc'd my safe food.

 

I do notice feeling worse if I forget to take my probiotic.  Maybe that's it?  It is so hard to tell.  I keep a log too, and that does help.

  • 2 weeks later...
GF-30 Newbie

Thanks all for the reply! Yes, the things have started to improve a bit now - much more energy. This is a great place to share all such questions, and since there is no live community here in India. Thanks again.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748

    Blough
    Newest Member
    Blough
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.