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

It's Official

Poppi

By Poppi
in Coping with Celiac Disease

Recommended Posts

Poppi Enthusiast
Poppi
Posted

What the heck? I love coffee. Love is in fact not a strong enough word to describe how I feel about coffee. Sweet brown nectar of the gods.

But I get this weird mini-gluten reaction to it. I'm fine, I drink a cup of coffee and about half way through I feel super sleepy, my stomach just get unsettled and nauseous and my back pain starts to flare up. It only lasts a couple of hours and luckily it passes and I don't deal with 5-10 days of inflammatory symptoms like I do with gluten but it still makes me sad.

I just went a full month with no coffee and then got my son to grab a cup from the shop across the street. Same reaction. :(

Oh well. Now I know, right?

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

What the heck? I love coffee. Love is in fact not a strong enough word to describe how I feel about coffee. Sweet brown nectar of the gods.

But I get this weird mini-gluten reaction to it. I'm fine, I drink a cup of coffee and about half way through I feel super sleepy, my stomach just get unsettled and nauseous and my back pain starts to flare up. It only lasts a couple of hours and luckily it passes and I don't deal with 5-10 days of inflammatory symptoms like I do with gluten but it still makes me sad.

I just went a full month with no coffee and then got my son to grab a cup from the shop across the street. Same reaction. :(

Oh well. Now I know, right?

Sounds like the trial separation is going to end in a divorce. No more coffee for Sara! :(

kiwibird75 Newbie
kiwibird75
Posted

Oh Poppi! I feel your pain :( I go from a normal tummy to massive D with coffee, especially if it has milk in it (I know, duh, lactose...) but the coffee had to go. My coffee guy is probably noticing the lack of funds!

Tea is better for me, but not nearly as satisfying at the moment, but hopefully with time... right???

Chin up chicky - There are worse things in the world.

xx

K

txplowgirl Enthusiast
txplowgirl
Posted

Hi poppi, I have never been able to drink coffee because it also made me sleepy and sick to my stomach. I found that it has something called tannins in it as well as in cigarettes too. Anything with tannins in it does that to me.

adab8ca Enthusiast
adab8ca
Posted

crap crap crap

that is too bad...but at least you know (small teeny consolation)

Darn210 Enthusiast
Darn210
Posted

Poppi, just wanted to let you know that you are not alone as I have seen this on the board before (I'm not actually a coffee drinker, I prefer tea). I have seen that some people have successfully reintroduced coffee after giving their guts a chance to heal. Also, some have successfully switched to decaf instead as caffiene was the problem. You might want to try a milder roast or even just go with 1/2 a cup . . . but you might want to wait until you've been gluten free a little longer. I don't want to get your hopes up, just wanted to list a couple of possibilites.

Lisa Mentor
Lisa
Posted

\

I just went a full month with no coffee and then got my son to grab a cup from the shop across the street. Same reaction. :(

Oh well. Now I know, right?

What's the shop across the street? Does home brewed bother you also?

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

Celiac.com Sponsor (A8-M):


Jungle Rookie
Jungle
Posted

Some coffee shops put msg in their coffee.

ElseB Contributor
ElseB
Posted

I've been gluten free for 3 years, very strict adherence to the diet, and now I'm suddenly having problems with coffee. It started last week. I get bad gas before I"m even halfway through the cup. I don't drink a lot of coffee, at most 4 cups a week, but I ENJOY those 4 cups!!! I like tea too, but I WANT MY COFFEE!!! I think I'll try a trial separation...maybe my gut is just cranky at the moment.

Poppi Enthusiast
Poppi
Posted
  • Author

What's the shop across the street? Does home brewed bother you also?

It's a Tim Horton's. I've also tried a local shop that roasts their own beans and a couple varieties of the Starbucks Via packets. Same reaction every time.

I haven't made any coffee at home since a month before I went gluten free because I was hooked on the Caramel Starbucks Via.

mushroom Proficient
mushroom
Posted

I haven't had any caffeine since 1972 :o but I drink decaf capucchinos all the time :lol: For me, it's the caffeine, so I drink herbal teas also, no coke!!

kareng Grand Master
kareng
Posted

It's a Tim Horton's. I've also tried a local shop that roasts their own beans and a couple varieties of the Starbucks Via packets. Same reaction every time.

I haven't made any coffee at home since a month before I went gluten free because I was hooked on the Caramel Starbucks Via.

You have a Tim Hortons across the street? Does that greasy donut smell drive you nuts? Not in a " I want donut" way. We loved them when we have been in Canada & not gluten-free, but they smell greasy.

Maybe give it a couple of months and try some plain home made coffee?

kareng Grand Master
kareng
Posted

Some coffee shops put msg in their coffee.

Who puts msg in coffee? What? Aghhhh!

But really, who does that?

Poppi Enthusiast
Poppi
Posted
  • Author

You have a Tim Hortons across the street? Does that greasy donut smell drive you nuts? Not in a " I want donut" way. We loved them when we have been in Canada & not gluten-free, but they smell greasy.

Maybe give it a couple of months and try some plain home made coffee?

Well it's not exactly across the street more like kitty corner from our back yard and there is an Earl's in between the Tim's and our house so we mostly smell their wood burning ovens which is quite nice.

  • 4 weeks later...
juj2003 Newbie
juj2003
Posted

Ohh- My first post here, and something I can actually help with (maybe).

If you have access to a Teavanna I would highly recommend their JavaMatte Tea. It is delicious and is reminiscent of coffee (also has the kick).

kareng Grand Master
kareng
Posted

Ohh- My first post here, and something I can actually help with (maybe).

If you have access to a Teavanna I would highly recommend their JavaMatte Tea. It is delicious and is reminiscent of coffee (also has the kick).

You may have the most significant & important post of the year! :D

Tea that tastes like coffee! :blink:

We will be expecting big things from you now! Welcome!

Adrienne2823 Newbie
Adrienne2823
Posted

After a full year I have just been able to tolerate one type of coffee: Folgers Simply Smooth. Every other type of coffee wrecks my gut so bad...

No Starbucks

No super strong coffee brewed at work either :P

But if you are willing, give the simply smooth a try.

kellynolan82 Explorer
kellynolan82
Posted

In terms of gluten free, you can never go wrong with long-black! Then you'll know for sure whether it's the impact of gluten :)

Archived

This topic is now archived and is closed to further replies.

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. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    2. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    3. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
    4. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many...
    5. Scott Adams
      - Scott Adams replied to ElenaM's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      I think I am gluten intolerant

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS). 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. Your situation is a classic p...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,906
    • Most Online (within 30 mins)
      7,748
    Dakota4
    Newest Member
    Dakota4
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  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.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.