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

Extreme Sleepiness

Beth in NC

By Beth in NC
in Coping with Celiac Disease

Recommended Posts

Beth in NC Contributor
Beth in NC
Posted

Yesterday I could not stay awake unless I was up and walking. I've had this one other day, a few weeks ago, and I just napped....two naps of two hours each and I was STILL tired. Yesterday I had a lot to do so I fought it, finally getting a Starbucks Latte at 5 p.m. so the caffiene would help.

It just dawned on me today that this might be part of me being glutened. Friday I had slight D, the sleepiness was Saturday and today I have been sore all over and had a stomach ache.

I do not know what I ate, if that is what this is. It would have had to come from CC, because I ate nothing that outright had gluten.

Could the sleepiness be from a glutening? It was like I was drugged!

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

Celiac.com Sponsor (A8-M):


Crystal Brown Rookie
Crystal Brown
Posted

I just had sort of a "wake up" call - literally..

I was diagnosed back in June of 2007 and followed the gluten-free diet to a T. The only problem.. I kept losing weight, kept feeling TIRED and was still having gastro symptoms..

I ended up in the hospital about 3 weeks ago.

- I was severely malnourished

- Weighed a whopping 93 pounds

- All my vitamin levels were on the floor

Wellllll... there was one little thing I never gave up after my diagnosis. Starbucks.

I always had them wash the blender with scorching hot water.. One day they even gave me my own blender container for my frapp drink.. Well, turns out the Starbucks was the culprit. The simple fact was no matter how hard they tried to keep things free of cross-contamination, the gluten was still sneaking in there. I suspect it was the lid they used or they may have been using the designated container during high traffic times.

So, I'm not sure how often you have Starbucks (I had them everyday), but it could be possible that you're getting contaminated from their equipment. Not so much the drink itself, but it is virtually impossible for them to keep the equipment free of gluten. Especially during the holidays when the spiced hot beverages arrive.

It's just a suggestion :P

How often do you get the sleepy feeling?

YoloGx Rookie
YoloGx
Posted

Sounds like a good piece of detective work to me!

Bea

Beth in NC Contributor
Beth in NC
Posted
  • Author

It couldn't be that because it was my first one since going gluten-free. The sleepiness started BEFORE I had the latee and was the reason I got it.

I probably won't do it again though because even with a lactaid, my belly gurgled like crazy afterwards.

SillyBoo Newbie
SillyBoo
Posted

Yes, gluten makes me extremely sleepy. But I found that sleepiness also results from eating anything else to which I have developed a sensitivity, subsequent to the gluten, such as dairy, soy, beans, nightshades, and chocolate. You might want to check out what other foods may be causing the problem, in addition to continued sleuthing into possible sources of gluten (lotion, shampoo, toothpaste, and such).

hawaiimama Apprentice
hawaiimama
Posted

Oh the starbucks makes perfect sense! We have an espresso maker at home and it sucks in little bits of the drink before until you seem it out (not sure I'm saying this right).

The last time I went to buckies I had a HORRID stomach ache and I realized they had done my friends soy drink before mine. Soy makes me feel SO gross.

And yes, I get sleepy. If fact before I was dx, I used to eat cereal at night because it would make me sleep DOH.

Gaye of PA Apprentice
Gaye of PA
Posted

After taking gluten out of my diet, I was able to realize that CORN makes me dead-dog sleepy. So I'm avoiding that right now, although I don't seem to notice it when I get small amounts, such as in xanthan gum. But if I should have some corn chips or a corn tortilla, it zonks me out.

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

Celiac.com Sponsor (A8-M):


Amyleigh0007 Enthusiast
Amyleigh0007
Posted

Yes! I get very tired. If fact, once I had to call my husband who was out on the golf course, to come home so he could watch the kids. I was so tired and kept falling asleep. It was after a gluten challenge. I had been gluten free for about a month and I ate three chicken strips to test myself. I won't be testing myself again.

susanm Apprentice
susanm
Posted

I always thought that the sleepy feeling I'd get after eating was normal "after-eating groggies". Then I started noticing it was only after I had a lot of pasta that I felt like that (which I love!!)

Do you mean I really have to give up Starbucks when I go gluten free?? :( I'm still waiting for the endoscopy, but I know I have gluten sensitivity.

MNBeth Explorer
MNBeth
Posted
Do you mean I really have to give up Starbucks when I go gluten free?? :( I'm still waiting for the endoscopy, but I know I have gluten sensitivity.

Well, I wouldn't think plain coffee would be a problem, but blender drinks would be hard to trust, as the blenders get used for gluten ingredients. As far as steamed or frothed drinks, I'd think they'd be okay, too, unless you have soy or dairy issues.

And, yes, I can hardly hold my head up when I've been glutened.

Archived

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

Go to topic listing

  • 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. Rejoicephd
      - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

      Wow what a helpful article!! I am just seeing this now but I hosted a small group of family for Thanksgiving at my house this year and I did some of these things- got a butterball gluten-free turkey, got gluten-free stuffing, had a few gluten-free sides, and a gluten-free nothing-Bundt-cake. I had other non gluten-free things there too for others, and I also...
    2. Scott Adams
      0

      Rainforest Cafe Fined After Child's Severe Allergic Reaction: What It Means for Gluten-Free Safety

    3. marion wheaton
      - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    4. trents
      - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a...
    5. BlessedinBoston
      - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,415
    • Most Online (within 30 mins)
      7,748
    KittyKatJill
    Newest Member
    KittyKatJill
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
×
×
  • 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.