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

Caffeine consumption masking symptoms of Coeliac?

Keight

By Keight
in Coping with Celiac Disease

 Share

Recommended Posts

Keight Enthusiast
Keight
Posted

Hi. I am new to Celiac.com and only had my bloods come back super high. Waiting for my biopsy in 10 days' time. 

I want to ask if it makes sense that my reliance on coffee to get through every day over the last 8 years could have masked, and even contributed to, my Coeliac symptoms? 

Lately, I have been avoiding coffee as it makes my symptoms worse since getting more glutened due to this challenge. It has made me aware how I thought I was ok, when really, my malnourushment was band-aided by my caffeine consumption. 

A part of me wants to get rid of caffeine, but I am scared of the slump I am falling into. Each days seems harder and harder to lift my body up and be 'normal'. 

Am I right to consider caffeine detrimental to my current mal absorbtion?

 

Thank you. 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted
(edited)

Plain coffee is gluten free.  It can be cross contaminated with  gluten in a shop or if flavors are added.  You must read the label and if in doubt, contact the manufacturer.  

If your small intestine is damaged from undiagnosed celiac disease, coffee may be bothering you.  It is pretty acidic.   It might be wise to give it up until you are feeling better.  

I drink coffee daily and I have healed from celiac disease (confirmed repeat biopsies).  I must admit, I am addicted to it. Often I need it to get through an afternoon slump.  That is usually when I ask my doctor to check my thyroid as I have Hashimoto’s Thyroiditis (which is commonly linked to celiac disease).  Usually, an adjustment to my thyroid hormone replacement is needed then.  You can also ask your doctor to check you for vitamin and mineral deficiencies which usually resolve once you have been gluten free for a while.    

Edited by cyclinglady
Keight Enthusiast
Keight
Posted
  • Author
(edited)

Thanks, cyclinglady. I guess as I am already low in so many nutrients, it makes sense to lay off the caffeine til I am healed. Just depleting more nutrients, really. 

Edited by Keight
Fredo Rookie
Fredo
Posted

Greetings,   As a few on here know, I am about 4 years post diagnosis, and freely share my experience.  I too am an avid coffee drinker.  Over the past  8 years or so I had noticed that even coffee failed to give me that morning "umph" to get my day going, or give me that occasional "pick me up" in my day.  Well, last month my care provider ordered a blood panel and extended the search to include my vitamin levels, as my fatigue periods were increasing for no apparent reason.  Come to find out that I am deficient in B12 and D vitamins.  My care provider ordered B12 shot, the kind that last " a month"...  I added to my intake, over the counter vitamin D 2000 IU once a day.    HOLY COW what a difference!!!!   I have felt the closest to being normal than I have in years!  

Might be worth a check and ask your doctor to look into your vitamin levels, people  with celiac, as I have notice in research, are prone to be deficient in there vitamin levels....   

In my case adding a simple vitamin has made a world of difference.

Best of luck to you...

GFinDC Veteran
GFinDC
Posted
(edited)

Hi Keight,

I was fatigued before going gluten-free but also found it hard to sleep.  Racing mind and such.  Some things that helped me are time on the gluten-free diet, selenium, and vitamin D.  Lately I am taking boron and calcium citrate.

You are correct that malabsorption can cause fatigue.  Caffeine also causes me fatigue after drinking it for several weeks.  And it dehydrates me.  Doesn't matter if it's coffee or tea.

Coffee can also make D worse so that's a good reason to avoid it while healing.

Edited by GFinDC
Keight Enthusiast
Keight
Posted
  • Author

Thank you, Fredo. My bloods done mid last month showed low in all. Really, the only thing to do is stay off the coffee, or at least enjoy the one I do have. I appreciate you taking the effort to respond. 

Hi GFinDC. Seems I am on the right track with my thinking. Hoodwinked myself into thinking I was ok all this time. Time to start healing, hey?

Keight Enthusiast
Keight
Posted
  • Author

Oh, I should clarify a few things. My Coeliac blood tests were in the very high range, so a biopsy should confirm a Coeliac diagnosis. 

Blood tests for various vitamins and minerals all came back low on the range of normal. I eat extremely healthy, clean food and am an avid body builder. That was a huge red flag for my dr. 

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

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

Hi Keight,

Yep, it's a good idea to take it easy on your gut when you have celiac disease.  While healing easy to digest foods and low spiceyness is good.  Some times avoiding sugar and carbs helps to limit gas/bloating.  Pepto Bismol and peppermint Altoids or peppermint tea can help too.

You might want to try avoiding dairy for a few months also.  Celiac damage makes it hard for the gut to digest dairy sugar (lactose).
This lactose intolerance can be temporary or permanent, there is no way to know.

A gluten challenge is necessary for testing, but it sure doesn't sound like any fun!

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
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.