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How Do You Cope W/ The Fatigue?

Jenn2005

By Jenn2005
in Coping with Celiac Disease

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Jenn2005 Contributor
Jenn2005
Posted

My husband has been so tired lately. I was wondering how some of you dealt with the extreme fatigue? Its been a while since his vitamin levels have been checked & I'm going to call & make an appt. to have this done. Last time his vitamin B12 was at 240 with the normal range being 200 - 1100 (with a note from the lab that people with levels of 200 -400 may experience side effects of low B12 levels). His Dr. said everything was normal and wasn't worried about it. Has anyone else had levels in this range but feel the effects? I'm really worried because he seems to feel more tired everyday instead of better.

Jennifer

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KaitiUSA Enthusiast
KaitiUSA
Posted

Make sure you guys are getting your vitamins and minerals. Liquid ones may help more effeciently because of the way they are absorbed.

In addition to that you also may want to take a sublingual B12 vitamin which helps alot with that. They even taste good :)

floridanative Community Regular
floridanative
Posted
My husband has been so tired lately.  I was wondering how some of you dealt with the extreme fatigue?  Its been a while since his vitamin levels have been checked & I'm going to call & make an appt. to have this done.  Last time his vitamin B12 was at 240 with the normal range being 200 - 1100 (with a note from the lab that people with levels of 200 -400 may experience side effects of low B12 levels).  His Dr. said everything was normal and wasn't worried about it.  Has anyone else had levels in this range but feel the effects?  I'm really worried because he seems to feel more tired everyday instead of better. 

Jennifer

<{POST_SNAPBACK}>

My B12 was low normal but don't know actual number. Since I went back on iron pills (anemia), I haven't felt great but I can get through the day at least. I started taking a B-complex pill every day two weeks ago and yesterday I felt like a normal person. Today I also feel good. However, there is no B12 in the pill as I checked yesterday. So I'm going to speak to my doctor to see if should add the B12 as well. All I know is that at least the B-complex is definitely doing something good for me. I hope your husband gets to feeling better soon. Before all this started I was one who didn't put much stock in supplements but now I know without them I can't function at all.

Jenn2005 Contributor
Jenn2005
Posted
  • Author

Thanks for the suggestions we will give them a try.

Jennifer

armoorefam Newbie
armoorefam
Posted

My two celiacs (hubby and daughter) recover from fatigue quickly with sublingual B12. As a matter of fact, we have learned not to do that at bedtime. LOL. This works significantly after you have been gluten free for a while without infractions (hubby has been on gluten-free diet for 8 years and our daughter has been for 8 years). With an infraction of gluten is is less dramatic.

Do consider the underlying cause if you are feeling tired and yet haven't had gluten slip in. It could be that anemia is a culprit. My daughter, even with daily iron, seems to always be borline anemic. Thyroid support meds have also been a help for my daughter as well. Both have had trouble sleeping quite often. About two months ago, I bought melatonin at the health food store to see if that might help them get off to sleep faster. Hubby passed on it since he has to use heavy equipment sometimes - just in case it didn't wear off well. But is was a big help for my daughter! She fell asleep within twenty minutes instead of it taking the usual two hours of laying there. After about three weeks she was able to stop using them and has been pretty consistent in getting to sleep ever since. She has even started getting up earlier than the boys pretty consistently - that was such a shock the first week. LOL. She also mentioned that it was a help to get up and open the curtains as soon as she woke up instead of lying there in a darkened room and going back to sleep. It helped her to turn her bio-clock around. She has felt much more rested.

Claire Collaborator
Claire
Posted

I have posted this reply before but here goes again.

By June of this year I had total fatigue - wiped out completely many days - too tired to get out of my own way. I was discouraged and depressed because I just couldn't accomplish anything. I got tired combing my hair!

In July I started taking CoQ10. This is not a medicine. It is an enzyme.

I am certainly not back to my former self but I am so greatly improved that I feel like a great weight has been lifted off of me. I got back out into the garden - without having to mentally talk myself into it and then push myself out the door. I still have a few bulbs left to plant.

Today I cleaned house, did the laundry, prepared a dinner for four (two guests) and haven't laid down all day.

It might not work as well for your family members - but then it might work even better. Worth a try. Claire

Jenn2005 Contributor
Jenn2005
Posted
  • Author

Claire - Is all CoQ10 gluten free or can you tell me the brand you take and where you get it?

I got the sub-lingual B-12 for him to start taking and a liquid multivitamin is the CoQ10 ok to take with these also?

We will try anything at this point. Thanks for all the suggestions.

Jennifer

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KaitiUSA Enthusiast
KaitiUSA
Posted
Claire - Is all CoQ10 gluten free or can you tell me the brand you take and where you get it? 

I got the sub-lingual B-12 for him to start taking and a liquid multivitamin is the CoQ10 ok to take with these also?

We will try anything at this point.  Thanks for all the suggestions.

Jennifer

<{POST_SNAPBACK}>

It should be ok to take with it but make sure it is gluten free.

Make sure the vitamins and sublingual B12 are gluten free as well because some are not ok.

Carriefaith Enthusiast
Carriefaith
Posted

I struggled with fatigue for a very long time, about 1 year into the gluten free diet. I am doing much better now though. Vitamins should help and try getting them from natural sources or in liquid form. Also, try to avoid caffeine.

cornbread Explorer
cornbread
Posted

I created a post about this a while ago... I found that sublingual NADH is really helpful for fatigue/brain fog after I'm glutened. I pop 40mg (4 10mg tablets) as soon as possible, and then have one or two whenever I need a pick up. It's totally natural, you can't OD. :) You can buy it at health stores. Sublingual works best. There's a brand I get (ENADAlert) which is around $18 for 10x 10mg pills. I'm sure you can find it cheaper online, I just pick mine up at Whole Foods.

Claire Collaborator
Claire
Posted
Claire - Is all CoQ10 gluten free or can you tell me the brand you take and where you get it? 

I got the sub-lingual B-12 for him to start taking and a liquid multivitamin is the CoQ10 ok to take with these also?

We will try anything at this point.  Thanks for all the suggestions.

Jennifer

<{POST_SNAPBACK}>

Many companies market this product. I personally buy mine from Swanson Health Products - request a catalog from their website or call 1-800-437-4148. I have requested info on all their products that I use including this one and have been told that they are gluten free.

After your first catalog you will get a new one each month. I have had no complaint for anything I have bought from them. Their service is excellent and they were most courteous with gluten questions. Some of these were email requests and others were by phone to Customer Service. Claire

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
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