Intermittent Fatigue

[ChrisDun]

My husband was diagnosed with celiac disease approx one year ago.  Even since changing his diet, he experiences bouts of fatigue, almost like a light switch - he’s fine one minute, then the next has to go lay down. 
he was diagnosed in March 2024.  Then felt better almost immediately after changing to a gluten free diet.  Felt almost back to himself all summer.  But since November/December, he’s been feeling fatigue off and on, and it’s interfering with every day life. 
has anyone else experienced this? 

[knitty kitty]

Welcome to the forum, @ChrisDun!

Has your husband been checked for nutritional deficiencies?  Many newly diagnosed are short on the B Complex vitamins (especially Thiamine), Vitamin D and minerals like magnesium and iron.  

Talk to the doctor and nutritionist about supplementing the eight essential B vitamins while healing.  

I had episodes where I would "hit a wall" and had to stop and rest.  I was very deficient in Thiamine and the other B vitamin.  The B vitamins are water soluble, and so are easily excreted if not needed, but the difference supplementing them was enormous, especially with Thiamine in the form Benfotiamine which promotes intestinal healing.  

Remember, gluten free processed foods are not fortified nor enriched with vitamins like gluten containing products.  The B vitamins need to be supplemented.  The gluten free diet can be short on them.

Hope this helps!

Edited April 28, 2025 by knitty kitty
Typo correction

[trents]

Chris, has your husband had a recent checkup with detailed bloodwork (CBC and CMP)? Has he been checked for vitamin and mineral deficiencies?

[ChrisDun]

Yes he has had recent blood work.  Other than low ferritin everything else was normal 

[trents]

I would make sure he gets checked for B12 and D deficiencies at the minmium. Ferritin is a storage protein for iron. If it is low, it could mean his iron needs are currently being met by robbing from storage but the storage is not being replenished. I find it interesting that his fatigue set in during the winter months. If you live in a northern latitude or where there is a lot of cloudy weather during t he winter months, your husband could be experiencing low vitamin D levels. Even aside from geography and climate considerations, people who spend most of their time indoors are often vitamin D deficient. Low vitamin D levels is a chronic problem in developed countries where people's livelihoods keep them indoors during the day.

[knitty kitty]

Doctors don't usually test the levels of all the B vitamins.  B12 is frequently the only one checked.  

Ask for an Erythrocyte transketolase test to check Thiamine Vitamin B 1  levels.  The eight B vitamins all work together, so they should all be supplemented.  Additional thiamine in the form Benfotiamine can be taken.  

[Michelle Amirault-Packard]

He should definitely have his vitamin D and Vitamin B12 checked.  I have celiac and i always felt tired, sometimes i described it as dopy.My vitamin D is always low at times extremely low which can affect you. But  I also did some research and contacted my doctor to see if she checked my Vitamin B12 and She said she didn’t check my vitamin B-12 because a wasn’t Anemic and the normal protocol is , if you are not Anemic they don’t test for B-12.  She had no problem doing the test for me and it came back super super deficient . So I was given a shot of B12 once a week for 4 weeks and I give myself 1 shot intramuscular once a month now for 18 years. Once your B12 is low it can take a long time to bring it back up and sustain it. I think it took about 6 months to get a decent number and about a year to get it right. I do get my Vitamin D checked but not yearly more like every other year because it is a more expensive test and I tend to always be low. I do take a vitamin D supplement but I would talk to your doctor before taking a supplement to make sure you don’t take too much especially if you are already taking a multivitamin. Because too much D can also have some bad side effects.  Celiacs tend to be able to take a higher dose due to our digestive and malabsorption issues but always talk to your doctor before taking. Other things could be making him feel extremely tired  like new allergies like pollens, animals, molds etc.. sleep apnea is a huge one( cause extreme fatigue) and some medications. Just other things he can have checked! Good luck 

[knitty kitty]

There are thirteen essential vitamins:  eight B vitamins, four fat soluble vitamins, and Vitamin C.  They all work together.   If you are deficient in one, you are probably low in the other dozen.  Celiac Disease affects the absorption of all the vitamins, and the dozen or so essential minerals, as well. 

Cobalamine Vitamin B12, needs Folate B9 and Pyridoxine B6 to function properly.  Pyridoxine B6 needs Riboflavin B2.  Vitamin C is needed to interact with B12 as well.  Thiamine B1 and Niacin B3 are also needed to provide the energy for these vitamins to function properly.  If one is also low in Folate and Pyridoxine, B12 Cobalamine is not going to be able to function properly and the body doesn't bother to absorb it.  

Vitamin D is safe even in high doses.  Vitamin D3 should be supplemented.  Vitamin D2 is not as well utilized because it's synthetic, not a form the body can utilize easily.  Vitamin D must be activated by Thiamine Vitamin B1.  Insufficient Thiamine B1 will make one feel "dopey".  Thiamine is needed for brain function.  The brain uses as much energy just thinking as your muscles do while running a marathon.  

Multivitamins do not contain sufficient amounts of essential vitamins to correct nutritional deficiencies.  Supplementing with ALL eight B vitamins, extra Thiamine (don't use the form thiamine mononitrate because it's not absorbed nor utilized well), Vitamin C and the four fat soluble vitamins will be more beneficial than just supplementing one or two vitamins by themselves.

With sufficient amounts of essential vitamins, the immune system gets regulated and becomes less reactive to other things like pollen, molds and animal dander.  Sleep apnea is frequently found in Thiamine insufficiency.  The eight essential B vitamins are water soluble and easily excreted if not needed.  The B vitamins all work together.  Supplement them together.

Thiamine deficiency disorders: a clinical perspective

https://pubmed.ncbi.nlm.nih.gov/33305487/

 

Edited May 1, 2025 by knitty kitty
Added link

[Michelle Amirault-Packard]

Thank you for this information!