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

Dealing With Celiac

roxanne40

Recommended Posts

roxanne40 Newbie
roxanne40
Posted

I just had my 3 year anniversary of being diagnosed with Celiac Disease. I have a family and I am so tired of dealing with this disease and all of its ramifications on a daily basis. How do I get over this hump? I am gluten free but feel so tired a lot of the time. Do other people feel this way? Any ideas would be helpful.

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

Celiac.com Sponsor (A8-M):


kbtoyssni Contributor
kbtoyssni
Posted

By tired do you mean emotional or physical fatigue? If it's physical, maybe you still have some underlying health conditions that you haven't discovered yet. If it's emotional, I'd recommend seeing a therapist.

Is your entire family gluten-free? I now live alone. My entire apartment contains no gluten so I don't have a daily struggle with the disease. When I go to visit my parents I constantly have to be thinking about it because there's gluten in the house. I don't think it's too much trouble for an entire family to have gluten-free personal care products and for food to be mostly gluten-free. Maybe have one shelf of gluten food for the other family members. I also wouldn't make gluten food for the rest of the family. If they want it, they can prepare it themselves.

tarnalberry Community Regular
tarnalberry
Posted

part of it depends on how often it's hard to deal with it. if I'm having to go out all the time, I get tired of it too. if I'm just operating under a normal schedule and cooking at home like I prefer to, I hardly notice a difference. adjusting a bit to make it a more normal aspect in your life can help make those things easier. (of course, it depends on the cooperation of those around you - if they're not cooperative, you get to start practicing 'no'. :-/)

Mayflowers Contributor
Mayflowers
Posted
part of it depends on how often it's hard to deal with it. if I'm having to go out all the time, I get tired of it too. if I'm just operating under a normal schedule and cooking at home like I prefer to, I hardly notice a difference. adjusting a bit to make it a more normal aspect in your life can help make those things easier. (of course, it depends on the cooperation of those around you - if they're not cooperative, you get to start practicing 'no'. :-/)

I thought that when you go gluten free your energy returns? I thought the lack of energy is from eating gluten? Some docs believe people shouldn't eat any grains. Our bodies weren't design to eat grains.

Sarah8793 Enthusiast
Sarah8793
Posted
I thought that when you go gluten free your energy returns? I thought the lack of energy is from eating gluten? Some docs believe people shouldn't eat any grains. Our bodies weren't design to eat grains.

At times when I have felt drained, a little closer examination upon my eating habits usually reveals 1 of 2 problems. Not enough protein or not enough complex carbohydrates. I am hypoglycemic also so I have to eat for energy. So I have learned some things about this. Check how many grams of protein you are getting and compare it to the reccomended amount for your weight. If you are getting adequate protein, next check your carbs. Are you eating enough vegetables and fruits and gluten-free carbs like rice etc.? Make sure when you snack you are getting a protein and a carb together. For example, a handful of peanuts with some raisins. Hope this helps!

Sarah

Rikki Tikki Explorer
Rikki Tikki
Posted

To me it's just like I would imagine any chronic condition would be. There are going to be some good days and some not so good days. I think it has probably taken me about 3 years to feel pretty healthy. Is there something going on in your life that is making things difficult now? Are you 100 % sure everything is gluten free?

roxanne40 Newbie
roxanne40
Posted
  • Author
To me it's just like I would imagine any chronic condition would be. There are going to be some good days and some not so good days. I think it has probably taken me about 3 years to feel pretty healthy. Is there something going on in your life that is making things difficult now? Are you 100 % sure everything is gluten free?

I think you hit it right on. There are good days, and bad days. I think I am going through bad days. I think I was feeling really good and then I started a new medication for something else and perhaps that is what is bringing on the mood swings, b/c I think I am gluten free. Thanks.

At times when I have felt drained, a little closer examination upon my eating habits usually reveals 1 of 2 problems. Not enough protein or not enough complex carbohydrates. I am hypoglycemic also so I have to eat for energy. So I have learned some things about this. Check how many grams of protein you are getting and compare it to the reccomended amount for your weight. If you are getting adequate protein, next check your carbs. Are you eating enough vegetables and fruits and gluten-free carbs like rice etc.? Make sure when you snack you are getting a protein and a carb together. For example, a handful of peanuts with some raisins. Hope this helps!

Sarah

Thank you for the tips. I think my protein consumption is definitely down. I am not a big meat eater so I look for other sources, and lately, have been slacking on them. It's summer and we are just running around and I have been slacking! Thanks.

By tired do you mean emotional or physical fatigue? If it's physical, maybe you still have some underlying health conditions that you haven't discovered yet. If it's emotional, I'd recommend seeing a therapist.

Is your entire family gluten-free? I now live alone. My entire apartment contains no gluten so I don't have a daily struggle with the disease. When I go to visit my parents I constantly have to be thinking about it because there's gluten in the house. I don't think it's too much trouble for an entire family to have gluten-free personal care products and for food to be mostly gluten-free. Maybe have one shelf of gluten food for the other family members. I also wouldn't make gluten food for the rest of the family. If they want it, they can prepare it themselves.

It is physical fatigue. I have started thyroid medication and it is stabilized now. But I am still so tired. I'm puzzled by it, because I want to feel good and get on with life!

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

Celiac.com Sponsor (A8-M):


zip2play Apprentice
zip2play
Posted

I try to look at it like an extreme allergy, much like Peanut allergy! It is difficult at times, especially when on vacation or such, eating out is difficult. That is when I feel sorry for myself too!

If you energy is really bad, keep with your DR! I felt better initially but my energy never came back up. They just found I have issues with my thyroid! I have a cyst and nodules on it. That doesn't help me either!

Heck, if it isn't one thing, there seems to always be something else! ;)

hez Enthusiast
hez
Posted

You might want to have your thyroid levels checked. I am on synthroid (do not have a thyroid due to cancer) and if I have too little medication I am tired. Just a thought?

Hez

roxanne40 Newbie
roxanne40
Posted
  • Author
You might want to have your thyroid levels checked. I am on synthroid (do not have a thyroid due to cancer) and if I have too little medication I am tired. Just a thought?

Hez

I am on thyroid medication, and maybe it needs to be adjusted again. I will have another check-up since I just started 6 months ago. Thanks.

I try to look at it like an extreme allergy, much like Peanut allergy! It is difficult at times, especially when on vacation or such, eating out is difficult. That is when I feel sorry for myself too!

If you energy is really bad, keep with your DR! I felt better initially but my energy never came back up. They just found I have issues with my thyroid! I have a cyst and nodules on it. That doesn't help me either!

Heck, if it isn't one thing, there seems to always be something else! ;)

I am already on thyroid medication but I think I will go and have it re-checked to make sure I am getting the correct dose. And you are right-- if it's not one thing it's another. I spent half of last night in the bathroom and don't know why. I cooked my own meal and it was all gluten free. Go figure.

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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      @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...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      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...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      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...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • 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.
×
×
  • 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.