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

horrific damage by coffee!


GodHelpMe

Recommended Posts

GodHelpMe Newbie

Hi everyone

I was diagnosed with celiac finally last month.  As a child I was diagnosed with "gluten intolerance" by a doctor but my care-givers didn't take things seriously and while they let me refuse bread (I had a natural dislike of bread and all wheat products), they still forced me to eat stuff like pasta and other products containing wheat and other glutens.  I was ill throughout my childhood and also had intolerance to all dairy products.

 

Because I naturally disliked wheat and similar products, I had not eaten wheat or other gluten products in at least 10 years by the time I was diagnosed with celiac.  The most exposure to gluten would have been when I ate out in restaurants (typically about twice a month) and might have been exposed to meals containing soy sauce with gluten in it or cross contaminated foods.  Other than that I completely cooked from scratch at all times.

 

My doctor was convinced that I was "cross reacting" to eggs (I'd vomit violently within minutes of eating even half a boiled egg), dairy (I'd become very, very ill even from a little butter), coffee and sesame.  I had been consuming coffee daily for years and was eating sesame in the form of tahini several times a week.  It was only when I eliminated coffee and sesame that I began to feel healthy again.  My gut issues pretty much resolved as soon as I stopped the coffee and tahini. 

 

But I've noticed that some people write off this idea of "cross reactivity" as a myth and think it's nonsense?


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



Celiac.com Sponsor (A8-M):



kareng Grand Master
1 hour ago, GodHelpMe said:

Hi everyone

I was diagnosed with celiac finally last month.  As a child I was diagnosed with "gluten intolerance" by a doctor but my care-givers didn't take things seriously and while they let me refuse bread (I had a natural dislike of bread and all wheat products), they still forced me to eat stuff like pasta and other products containing wheat and other glutens.  I was ill throughout my childhood and also had intolerance to all dairy products.

 

Because I naturally disliked wheat and similar products, I had not eaten wheat or other gluten products in at least 10 years by the time I was diagnosed with celiac.  The most exposure to gluten would have been when I ate out in restaurants (typically about twice a month) and might have been exposed to meals containing soy sauce with gluten in it or cross contaminated foods.  Other than that I completely cooked from scratch at all times.

 

My doctor was convinced that I was "cross reacting" to eggs (I'd vomit violently within minutes of eating even half a boiled egg), dairy (I'd become very, very ill even from a little butter), coffee and sesame.  I had been consuming coffee daily for years and was eating sesame in the form of tahini several times a week.  It was only when I eliminated coffee and sesame that I began to feel healthy again.  My gut issues pretty much resolved as soon as I stopped the coffee and tahini. 

 

But I've noticed that some people write off this idea of "cross reactivity" as a myth and think it's nonsense?

Open Original Shared Link

 

"There is not yet reliable data about cross-reactivity. As for the alleged possibility that many gluten-free foods or drinks (such as coffee, milk, orange juice, etc.) would trigger symptoms in celiac individuals due to hidden antigens mimicking gluten or cross-reacting with anti-gluten antibodies, it must be clearly stated that this is all false information, devoid of any scientific basis, and must be rejected as untrue.  "

 

You can have a problem, intolerance, allergy, etc. with eggs or coffee or whatever food....  People without Celiac have issues with them sometimes, too.

GFinDC Veteran

Hi,

Karen is right.  You can have food intolerances to any food.  And they may develop as a side affect of having uncontrolled celiac disease.  That doesn't mean though they are exactly the same reactions as in celiac disease.  If they were actually cross-reactive foods, many of us would have those reactions to the same foods, and our symptoms would be the same as for a glutening, right?  And the recovery time from eating them would be the same also.  I have other food intolerance besides gluten, but I don't have the same symptoms or reactions as I do when eating gluten.  I also get over the symptoms faster than from glutenings.  That doesn't mean they are fun though!

Many members have other food intolerances beyond gluten.  It's probably because of the gut irritation we have from eating gluten.  I don't think there have been any serious attempts to identify the causes of those additional food intolerances yet.  Regardless, it's a great idea to identify them through an elimination diet and then avoid them.  Sometimes people have food intolerances for life, sometimes the other food intolerances are temporary.

My bad list is gluten, dairy, soy, nightshades, carrots, celery, caffeine (not just coffee).  Probably something I'm forgetting at the moment.  Those all cause me symptoms, but that doesn't mean they are cross reacting.  We usually call them additional food intolerances around here.

Welcome to the forum! :)

  • 3 months later...
Plonkers Rookie

Oh man, you and I are in the same boat.  I cannot tolerate sesame (tahini) for some reason and ... my beloved coffee.  It is the last thing that I haven't really given up even though I feel better without it.  I have GERD-like symptoms with my celiac and coffee mimics some of the pain (although not as severe as gluten).  What can I say, I'm a coffee addict.  I give it up for a bit, then sneak a  cup, and it's downhill from there, rinse and repeat.  I also can't eat dairy.  I blame undiagnosed celiac for all of my random food intolerances (avocado, walnut, banana, kiwi, portobello mushroom, tahini).  They have come on one by one over the years.  Let's hope now that I'm gluten-free I don't get anymore!

Good luck!

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. - 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.

    2. - 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.

    3. - 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.

    4. 0

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

    5. - 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.

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

    • Total Members
      133,332
    • Most Online (within 30 mins)
      7,748

    Nicolah
    Newest Member
    Nicolah
    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
      @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
      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
      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
      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
×
×
  • 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.