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

Fatigue In A High Amount


beautifulmemories

Recommended Posts

beautifulmemories Newbie

i was recently diag. some months ago after going through every channel looking for answers on why i was so serverly sick.

i have gone completely gluten free to checking item products and ect. the only thing though is im so tired and fatigue to the point i can fall asleep even after 12hrs of sleep.

has anyone gone through medications or something similar and is there anything to help

right now i do 200 m. of b-12 and i did a 1000 cc of b-12 but im still tired

any help or ideas are welcomed


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



Celiac.com Sponsor (A8-M):



Metoo Enthusiast

You should get your vitamin levels checked.

When I felt like that my vitamin D level was 17 should be 55-100.

I could literally get up after sleeping all night and within an hour be crawling back into bed, and all day long would have to fight to stay awake. It was horrible.

lizard00 Enthusiast

I could literally get up after sleeping all night and within an hour be crawling back into bed, and all day long would have to fight to stay awake. It was horrible.

That sounds exactly like what I went through. gluten-free helped quite a bit, but the last piece was vit D.

I agree, get your level checked!

beautifulmemories Newbie

i have to get that checked out i havent done new blood test since going gluten free

before going gluten free all my levels were fine and great even b-12 was fine on the lower end but not def. the only thing i had main issues with is iron which i cant take a pill form cause i get ill from that so i do a multi vitamin and try to get foods with good iron.

i check on vitamin d as since i been ill i want to say seriously since going on about 2yrs this one issue has never gone away i did have gallbladder removed which kicked in the active stage of cel. which is was most likely active before i was just abel to tolerate things better

Austin Guy Contributor

Could be intolerances to other foods. I recently found that eating corn (kernel corn, chips, cereals...) makes me extremely fatigued. Rice too, but t a lesser degree. I suspect I should stay off all grains.

Tom2 Rookie

I can relate, I was sleeping 20 hours a day and was still tired along with a long list of other problems. You didn't say how long you have been gluten free or if you got worse after going gluten-free.

I agree that it could be other grains or you could be getting cross contaminated. From your description you are probably still very sensitive to gluten as your body is trying to heal. I was so bad that when I went gluten-free it felt like my body and brain completely shut down to heal. This lasted quite a while.

Also I found out from reading these valuble post's that I was being contaminated without even suspecting it. I have recently gave up soy about 1 week ago and have started to notice a difference.

Hope you get your strength back!

Skylark Collaborator

Could be intolerances to other foods. I recently found that eating corn (kernel corn, chips, cereals...) makes me extremely fatigued. Rice too, but t a lesser degree. I suspect I should stay off all grains.

I was about to say the same thing. I've cut out soy, dairy, and grains and am feeling a lot less tired. Now I have to figure out which one gets me.


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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

i was recently diag. some months ago after going through every channel looking for answers on why i was so serverly sick.

i have gone completely gluten free to checking item products and ect. the only thing though is im so tired and fatigue to the point i can fall asleep even after 12hrs of sleep.

has anyone gone through medications or something similar and is there anything to help

right now i do 200 m. of b-12 and i did a 1000 cc of b-12 but im still tired

any help or ideas are welcomed

Have your FOLATE levels checked. This can really tank with celiac and causes anemia. I was so wiped out and yet, my B-12 and D were supplemented and the levels came up just fine....so, what was it? I read about Folate deficiency with celiac and I went back and asked for this test and sure enough, that was LOW. Two months supplementation with prescription strength Folic Acid and that awful, dragging fatigue was gone.

beautifulmemories Newbie

when i last checked and at my endoscopy i was okay on the lower level but at okay levels i did the b-12 since i also suffer anxiety which got worse now somethings are balancing im still falling asleep and feeling sore. im going to be doing another blood pannel i currently see a gi and a pcp since im in the system where i became serverly ill

im on the gluten free ( i have rice and soy some corn) when i eat things that dont agree with me i get the skin rash thats ass. with celiacs which finally has calmed down and i been using a very sensitve skin friend lotion on my skin to help that area as i got it on my side of my neck and my wrist to slightly past upper elbow

my pcp thinks its chronic fatigue which seems to have carried through a pregnancy c-section gallbladder removal but def will do another blood pannel and see if its possible with the vit d or d-3

currently at 500mcg b-12 once daily seems to help slightly

AVR1962 Collaborator

Common problem and I did not read all the responses here but lack of proper amounts of magnesium, iron and vit d can cause also fatigue along with your B12. I was having a real hard time with it and my vits were helping but I found a big difference when I started putting foods high in vit D and B12 in my diet and spending more time outside. If you ahve not had your thyroid checked, hat is another possibility.

Skylark Collaborator

So-called chronic fatigue is often hypothyroidism. Doctors miss it because they rely too strongly on TSH and ignore symptoms. Read this article by David Derry.

Open Original Shared Link

PeachBlossoms Rookie

i was recently diag. some months ago after going through every channel looking for answers on why i was so serverly sick.

i have gone completely gluten free to checking item products and ect. the only thing though is im so tired and fatigue to the point i can fall asleep even after 12hrs of sleep.

has anyone gone through medications or something similar and is there anything to help

right now i do 200 m. of b-12 and i did a 1000 cc of b-12 but im still tired

any help or ideas are welcomed

HEY I'm dealing with the same issue. I can sleep 8-11 hours during the day AFTER getting a full night's sleep. I dealt with this for 5 years before I was diagnosed with Celiac Disease. After being gluten free and taking vitamins and having my hormones checked I was STILL just as tired. I found that I had become allergic or intolerant to many other foods. The food reaction is very delayed: I become extremely tired (almost drugged) 12 hours after eating the food so the reaction always happens the next day (usually the next morning).

I found that the WORST offenders were all grains, all legumes and the cruciferous family (kale, broccoli, cauliflower) but sweet potatoes will also do it. I can't eat the OILS that come from these foods either -- soybean oil, corn oil, etc.

It really helped to take a www.NowLEAP.com test. It was a blood test and they sent me a list of all my food sensitivities. When I removed those foods, I was able to wake up. But the test does not catch the INTOLERANCES (just the sensitivities) so if you still feel sleepy, I advice cutting out grains and legumes which are a common INTOLERANCE.

So try a VERY VERY STRICT diet for a week. Try eating only 5 foods for a week. Some people find red meat really causes them to become tired (they can't even get up in the morning). So try eating these foods which are usually considered pretty safe: salmon, blueberries, celery, romaine lettuce, olives/olive oil, zucchini with sea salt, black pepper and ONLY HERBS like rosemary, thyme and sage.

You can turn the romaine into a simple salad and use olive oil, white pepper, thyme and sea salt as an oil dressing.

You can sautee the zucchini in slices and season it with sea salt, white pepper and thyme.

Same goes for the celery.

See if you feel more awake. Then SLOWLY add in foods and see which ones are causing you to fall asleep.

Sarah P Rookie

I suffer from the same problem, but it comes and goes. I am a runner and take supplements so vitamin def. sounds very unlikely for me, although after reading this I will go get tested. I can sleep for 7 to 9 hours and 4 hours later I am falling asleep at my desk. I often have to go take naps at work and am sleep within minutes of laying down. I also have been experiancing strange bruises which makes me think I should look more into being def. in iron.

Let me know what you find, but know that you are not alone. Celiac seems to have so many strange symptoms and lingering problems, but luckly we all have each other :D

Reba32 Rookie

have you been tested for other auto-immune diseases? You said you get a skin rash, but if you're gluten free, it is unlikely to be dermatitis herpetiformis, unless you're still using topical products (soap, shampoo, lotions etc) that contain gluten. Have they taken a biopsy of the rash to confirm that it is DH?

Extreme fatigue can be from a lot of things, not just vitamin deficiencies. Thyroid disease, there are two of which are auto-immune and can be associated with Celiac disease; Hashimoto's and Grave's disease. Lupus can also cause extreme fatigue and a skin rash.

Diabetes can cause extreme fatigue as well.

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. - trents replied to Charlie1946's topic in Related Issues & Disorders
      9

      Severe severe mouth pain

    2. - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      9

      Severe severe mouth pain

    3. - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      9

      Severe severe mouth pain

    4. - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      9

      Severe severe mouth pain

    5. - trents replied to Charlie1946's topic in Related Issues & Disorders
      9

      Severe severe mouth pain

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

    • Total Members
      132,900
    • Most Online (within 30 mins)
      7,748

    sai4a
    Newest Member
    sai4a
    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

    • trents
      @Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs. Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations for being celiac safe. Most celiacs find that they need to depend on family members to advocate for them diligently or bring in food from the outside. Training of staff is inconsistent and there is the issue of turnover and also cross contamination.
    • Charlie1946
      @knitty kitty are you kidding?  I had no idea about the casein!! No one ever mentioned that to me at all!! I basically live off that milk! I have also wondered if I have Sjorgen's , but I haven't been to the doctor yet. Can you get the TTFD over the counter? I do have dysphasia and I have lysine I just haven't been good about taking it. I am so glad I found this group and all of you with all this helpful information!! I thought I was going crazy!!  I have sebaceous hyperplasia too- is that related to Celiac?  OH , and I wanted to ask if there is a site where I could find information on mental health issues , with celiac safe facilities??
    • Charlie1946
      @trents, Hi, thank you for the reply, I used to be pretty good at taking my vitamins and supplements, because I also have PCOS, I have Barrett's esophagus, it's just too expensive to have it stretched all the time, and I also get kinda panicked when trying to swallow pills because of getting choked a lot before.  I think maybe the thrush made it worse, I just can't figure out why I can't get it to go away 
    • knitty kitty
      Oh, my dear!  Get off that Fairlife chocolate protein shake!  That's got milk in it!  Egads! Some people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  If the villi grow back, they can resume making lactase again.   I react to casein and lactose both.  I get sores in my mouth and coated tongue, and inflammation, my Dermatitis Herpetiformis flares up, I get cold sores or shingles, and TMJ pain, well, joint pain in general, and my brain health is really affected, depression and anxiety.  So dairy is a really scary horror movie.     I take Benfotiamine and Thiamine TTFD  (tetrahydrofurfuryl disulfide).  These have anti-viral properties.   I've had chicken pox/shingles, and I also harbor the cold sore herpes virus which traveled to one eye through a nerve. It's broken now.  I had really bad nerve pain in my check at the time, then it turned into Bell's Palsy.  Thiamine TTFD helped clear up the dysphagia I was also experiencing then.  I took lots of Lysine to fight the herpes viruses as well.  Between the Thiamine TTFD and the Lysine, and avoiding dairy, mine stays dormant for the most part.   I also take a B Complex, and Magnesium Threonate to help the Thiamine TTFD work, Vitamin C, Vitamins A and D, and Zinc supplements to help Thiamine TTFD fight off those viruses. I have Sjogren's so I understand dry eye and mouth.  I found including Omega Threes, healthy fats, improved my problem.  You know how oil floats on top of water?  That's going on in our body, too.  Flaxseed oil supplements, and flaxseed oil to use on food is one way I increased my Omega Threes.  Choline and sunflower seed oil supplements are other choices I've tried.  Eat real food!  Eat fresh vegetables and fruit!  I had cooked stew in a crockpot until super mushy so I could chew and swallow it without lots of pain.  I got a bag of mandarin oranges, Cuties, whatever they're called now.  They're not too acidic.  Gluten free crackers don't have any nutritional value, no vitamins.   I followed the low histamine version of the Autoimmune Protocol Diet.  The book The Paleo Approach by Dr. Sarah Ballantyne has been most helpful.  She's a Celiac herself, and the diet has been shown to improve intestinal health. I have seen liquid vitamins on line.  Thiamine TTFD comes in a capsule, but tastes really strongly of garlic, so be prepared if your Gatorade tastes funny.   
    • trents
      @Charlie1946, celiac disease damages the lining of the small bowel which is the part of the intestinal track where all our nutrition is absorbed. Celiac disease, therefore, often results in nutritional deficiency related health issues. In addition, you describe a diet that sounds largely devoid of fruits and vegetables and dairy (for calcium). This does not bode well for good oral health or good health in general.  It can take two years or more for good healing of the lining of the small bowel after adopting a consistently gluten free diet. In the meantime, adding in good quality supplements can help compensate for poor nutritional absorption efficiency. Common over the counter vitamins and supplements are often optimized for shelf life rather than good assimilation/utilization by the body. We commonly recommend that those struggling with nutritional deficiencies start taking high potency B-complex, 5-10,000 IU of E daily, D3, Zinc and magnesium glycinate. They need to be checked to make sure they are gluten free since wheat starch can be used as a filler in pills and vitamins. Costco Kirkland Signature and Nature Made brands are often good choices. What is causing your swallowing problems? Is it the thrush?
×
×
  • 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.