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

I Want A Cup Of Coffee So Bad Right Now


Poppi

Recommended Posts

Poppi Enthusiast

I can't seem to tolerate coffee. It makes me feel exactly like I've been glutened for about 4-5 hours. I have been drinking coffee all my life. We lived on a coffee farm in Jamaica when I was 8 and I started drinking a cup of day back then and continued that habit (and then some) for the next 26 years. I've had 2 cups in the past 3 months (dropped coffee a month before I dropped gluten in an attempt to figure out what was giving me headaches) and felt terrible both times.

This morning I'm tired, it's cloudy and cold, the kids are playing quietly and all I want right now is a piping hot double double to go with my gluten-free cinnamon bun. :(

I don't have many moments of self pity because 99% of the time I feel phenomenal and I am so thankful I was finally diagnosed with celiac. For the first time in my life I feel great!

But I want some coffee. ::Pout::

ETA: I just remembered, it's been 3 months without coffee, not 2 ... ::cries::


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



Celiac.com Sponsor (A8-M):



jackay Enthusiast

I can't seem to tolerate coffee. It makes me feel exactly like I've been glutened for about 4-5 hours. I have been drinking coffee all my life. We lived on a coffee farm in Jamaica when I was 8 and I started drinking a cup of day back then and continued that habit (and then some) for the next 26 years. I've had 2 cups in the past 2 months (dropped coffee when I dropped gluten) and felt terrible both times.

This morning I'm tired, it's cloudy and cold, the kids are playing quietly and all I want right now is a piping hot double double to go with my gluten-free cinnamon bun. :(

I don't have many moments of self pity because 99% of the time I feel phenomenal and I am so thankful I was finally diagnosed with celiac. For the first time in my life I feel great!

But I want some coffee. ::Pout::

I've been wanting coffee, too, but have been afraid to try it.

thegreatkatsby Newbie

I stopped being able to drink regular coffee years ago... way before I was diagnosed as a celiac in January of this year. I don't know why I can't tolerate it, but it is upsetting.

For some reason though, I can usually tolerate coffee drinks made with a lot of milk (i.e. lattes, frappacinos, etc). I don't know if the milk helps coat the stomach, or prevent against harm done by the coffee, but it is the exception to the "no coffee" rule for me.

The two things I suspect may be part of the problem are the caffeine and the oil (from the coffee beans--I'm not sure what else to call it? extract?).

lynnelise Apprentice

I started having trouble with coffee after going gluten free. At first I thought there was gluten in the coffee itself and tried dozens of different brands. Then I kept having issues plus I started having my mouth go all tingly when I drank it which does not happen with gluten for me. I had some allergy tests ran that showed a mild allergy to the coffee itself. I quit coffee all together for months and now I have it once or twice a weeek.

It's weird though, I can drink hot coffee with heavy cream, half and half, non-dairy creamer, or soy and be ok but if I use regular milk I have a reaction. Cold coffee I can tolerate with soy only or I will have a reaction.

kareng Grand Master

I have heard that a little milk cuts the acid in the coffee. I couldn't drink it black it would give me an immediate pain in my stomach, even with food (probably didn't have any dairy in the meal). Went to awards banquet catered thing & they brought out little chocolate pots filled with flavored whipped creams. I though I would suffer for that treat. Didn't. I do OK now with milk in it.

Can you drink tea? Maybe a strong one like Earl Grey or that Chinese Dynamite tea.

Poppi Enthusiast

I drink lots of tea. There is a great tea shop a few block away from me owned by a woman and her daughter who is celiac. They have promised me that all the teas are safe as they shop carefully and the celiac daughter has drunk them all.

My morning drink now is half hot milk, half strong brewed loose leaf chai and a bit of sugar.

I always drink my coffee with 18% coffee cream and I've tried a few brands (Tim Horton's, Starbucks and something else). I would like to try getting beans, rinsing them and then grinding them myself but I don't have a grinder and don't want to spend money on one if it turns out to make me sick anyway.

I guess I'll stick with my tea.

domesticactivist Collaborator

I feel ya. Hang in there. Tea is not the same, though good in its own right.


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



Celiac.com Sponsor (A8-M):



Strawberry-Jam Enthusiast

back when I started having trouble with caffeine I switched to roasted barley tea... which, haha, bad idea, but it tasted like coffee kinda without a lick of caffeine. There is a such thing as roasted buckwheat tea... try it maybe? If it's the roasted flavor that you like, it might be nice.

Jestgar Rising Star

I would like to try getting beans, rinsing them and then grinding them myself but I don't have a grinder and don't want to spend money on one if it turns out to make me sick anyway.

You could use the grinder for spices or nuts if the coffee didn't work for you.

dilettantesteph Collaborator
I would like to try getting beans, rinsing them and then grinding them myself but I don't have a grinder and don't want to spend money on one if it turns out to make me sick anyway.

That's what I do, maybe you've seen that before. I get organic beans. You can get a cheap grinder for $15 - $20. Might be worth a try.

luvs2eat Collaborator

My daughter was having trouble w/ coffee when she first went gluten-free. She switched to decaf and it helped tremendously. A few months later, she's back to regular coffee.

I would die w/o coffee. When dairy decided it didn't like me anymore, I had to drink coffee in a travel cup w/ a lid for a few weeks so I couldn't SEE it w/o milk. Now I love it black.

Monklady123 Collaborator

I am serious when I say that this entire diet is a piece of cake compared to what I think it would be like to have to give up coffee! :o:ph34r:

Now of course, if there was a true medical reason why I had to give it up I would. But... omg.

I feel for you. I'm glad you can still drink tea, but no it isn't quite the same thing. :blink:

cahill Collaborator

I gave up coffee back in December, just before I started an elimination diet. During the elimination diet I did try to reintroduce coffee but had a strong reaction to it.

Now that I eliminated my intolerances and allgerys my gut has healed a bit and I can drink a small cup of coffee once or twice a week with no problem.

Sunday night I decided to push this a bit and had two cups,, not good :blink: ,, I will stick to my 1 cup at a time once or twice a week.

love2travel Mentor

Coffee is one of the few things on this planet that holds no appeal to me whatsoever. But then I prefer vanilla (bean) over chocolate any time, too! :P

Monklady123 Collaborator

Coffee is one of the few things on this planet that holds no appeal to me whatsoever. But then I prefer vanilla (bean) over chocolate any time, too! :P

Well... everyone has their faults.

;) ;) ;):D

love2travel Mentor

Well... everyone has their faults.

;) ;) ;):D

:P So very, very true. :P

thegreatkatsby Newbie

Something I just learned today that made me think of this topic again... apparently there is a new test out from Cyrex Labs that looks for cross-reactive foods in celiac and gluten intolerance people (in cross-reactivity the body mistakes another food for gluten and reacts accordingly.). Coffee is one of the top offenders for this.

I first read about it in a forum, but I googled around and found a page with this on it:

"Coffee is surprisingly cross-reactive with gluten

However Cyrex researchers were surprised to find coffee has the highest rate of cross-reaction with gluten. In other words, some people

Poppi Enthusiast

I read something like that at one point too. In some celiacs coffee hits the same receptors as gluten and triggers a reaction. It's a bummer for sure but life goes on, right?

thegreatkatsby Newbie

I read something like that at one point too. In some celiacs coffee hits the same receptors as gluten and triggers a reaction. It's a bummer for sure but life goes on, right?

Sort of... once you finally figure out what all the problems are/were. :)

Skylark Collaborator

I saw that Cyrex thing on coffee too. I would be so sad if I started cross-reacting with coffee.

Harpgirl Explorer

I was wondering for those others who have issues with coffee, do you mean any coffee, or can you drink decaf? I haven't had regular coffee for almost 4 years because I've been either pregnant or breastfeeding. I would really hate to find out later that I'd have to give up decaf too! :blink: I love putting cinnamon in the brew basket, mmm...

Poppi Enthusiast

I was wondering for those others who have issues with coffee, do you mean any coffee, or can you drink decaf? I haven't had regular coffee for almost 4 years because I've been either pregnant or breastfeeding. I would really hate to find out later that I'd have to give up decaf too! :blink: I love putting cinnamon in the brew basket, mmm...

I don't think it's the caffiene for me. I drink lots of black tea and I'll have a Coke once in a while. Sadly, it's the coffee.

Harpgirl Explorer

I don't think it's the caffiene for me. I drink lots of black tea and I'll have a Coke once in a while. Sadly, it's the coffee.

*sighs* What a bummer! At least you're good with chai. I think if I had to give up both, I'd have a outright fit! :P

thegreatkatsby Newbie

It's definitely the coffee for me... decaf or not. The only kinds of coffee I can drink now and then are the fluffy ones with lots of milk/cream... and they have to be espresso drinks, not drip brewed. I don't know why the espresso is usually ok when the regular kind of coffee isn't... maybe it's the way it's extracted? Perhaps the high pressure has some kind of effect? That doesn't seem to make sense, because espresso is more highly concentrated than regular coffee... but I have had regular coffee in a mug 50/50 with milk, and it gave me gastro problems whereas the espresso drinks typically don't, so it's hard to imagine it's just the milk protecting me. (Note: sometimes the espresso drinks do make me feel sick, but not like regular coffee, which is guaranteed to make me feel sick).

I think my tolerance of espresso is decreasing though. :/

Harpgirl Explorer

It's definitely the coffee for me... decaf or not. The only kinds of coffee I can drink now and then are the fluffy ones with lots of milk/cream... and they have to be espresso drinks, not drip brewed. I don't know why the espresso is usually ok when the regular kind of coffee isn't... maybe it's the way it's extracted? Perhaps the high pressure has some kind of effect? That doesn't seem to make sense, because espresso is more highly concentrated than regular coffee... but I have had regular coffee in a mug 50/50 with milk, and it gave me gastro problems whereas the espresso drinks typically don't, so it's hard to imagine it's just the milk protecting me. (Note: sometimes the espresso drinks do make me feel sick, but not like regular coffee, which is guaranteed to make me feel sick).

I think my tolerance of espresso is decreasing though. :/

You know, I actually get that. Especially when it comes to certain brands of coffee. I can't handle Starbuck's drip brewed coffee no matter how much milk I put in it, but I have no trouble with the lattes. :huh:

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. - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

    2. - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    3. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

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

    • Total Members
      132,915
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • 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.