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
      133,258
    • Most Online (within 30 mins)
      7,748

    Tdodge
    Newest Member
    Tdodge
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • suek54
      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
×
×
  • 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.