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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,202
    • Most Online (within 30 mins)
      7,748

    PatBurnham
    Newest Member
    PatBurnham
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.