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

Coffee Issues

lynnelise

Recommended Posts

lynnelise Apprentice
lynnelise
Posted

I have recently started drinking coffee in the mornings. Last week I drank the Millstone cinnamon hazelnut and the vanilla nut without issues. This week I started on the Millstone Caramel Truffle and got sick with GI "issues" Sunday and Monday. It is my understanding that all Millstone varieties are gluten-free but I decided obviously something is in the caramel that doesn't agree. So last night I went out and bought Folger's Vanilla Biscotti (feel kind of stupid saying I bought something that said biscotti on the label) because I read that all Folger's flavors are gluten free. Well drank my first cup this morning and had even worse issues than with the caramel! Plus I have a weird itchy rash on the top of my hand which I've never gotten before. (I do get rashes on my legs, around the knee when I consume gluten but never anywhere else.)

So I guess basically I'm wondering whether there is anything else in these flavors that I could be reacting to and also where can I find good flavored coffee that is safe. I don't think coffee itself is the problem since I often get Starbucks coffee on my lunch break and do not have issues. I also don't think it's the

Almond Breeze I put in the coffee because I use it in smoothies without issue. Thanks for any help/advice you can provide! :)

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Alot of the flavored syrups are gluten-free (check to be sure a few flavors aren't). I like vanilla Silk creamer with plain coffee. Good luck. Its also possible something else is bothering you. If Starbucks flavorings don't bother you, you can buy them for your coffee at home.

lynnelise Apprentice
lynnelise
Posted
  • Author

I guess I could try the syrups. I don't use anything with Splenda in it so it would add some calories to my morning coffee. I would still love to find ground flavored coffee that set well with me.

I called Folger about the vanilla biscotti but got the CYA statement that they can't guarantee it's gluten free because there are numerous times between harvesting and processing that it could have came into contract with gluten. All she could say was that coffee beans themselves are gluten-free. She wouldn't discuss what natural and artifical flavorings were used. Frustrating.

pammygb Newbie
pammygb
Posted

So sorry you are having issues with coffee. I do know that any coffee flavoring can contain gluten which may be irritating you.

Korwyn Explorer
Korwyn
Posted

Have you ever been in one of the packaging facilities for the mass coffee houses? There are only four in the US, and they handle all the coffee for all the brands. Folger's, MJB, Hills Bros, etc. The production lines used there handle a variety of blends, additives (including some which would contain gluten), etc. There is a huge CC issues. I don't trust any of the mass packaged coffees. I got green coffee beans (for about $3.80 to $4.50 a pound) and roasted my own coffee. Takes about a 1/2 hour to roast enough coffee for my wife and I for a week.

lynnelise Apprentice
lynnelise
Posted
  • Author

It guess I never thought about how coffee was produced and packaged! Thanks for the tip! Looks like I can order unroasted beans online. This is probably a stupid question but, do I need to buy a special coffee roaster or can they be roasted in the oven?

Korwyn Explorer
Korwyn
Posted

Hot air popcorn popper is what we use. Wear-ever popcorn pumper model works great and you can find them on E-bay cheap ($8-$15). Search for 'wear even popcorn'.

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

I had no idea coffee beans could be CC. Seems like gluten is everywhere.

For flavored coffee, you can put some stick cinnamon in with the grounds, or add a drop of vanilla extract with the cream and sugar. Hershey's syrup is really good too if you don't mind the sugar. Frangelico liqueur is amazing in coffee, but I only do that on weekends when I don't mind a tiny bit of alcohol. B)

  • 1 month later...
lynnelise Apprentice
lynnelise
Posted
  • Author

Well yesterday I went to the allergy doctor because after I posted this topic my issues started getting stranger in that I was having tingling around my lips and gums and a strong metallic taste in my mouth after drinking coffee. Turns out I have developed a coffee allergy. I just thought I should update it so if anyone searched the forums they wouldn't be scared to drink coffee.

I still think the information about the mass packaging plants and home roasting was good advice!

GFinDC Veteran
GFinDC
Posted

I have a reaction to coffee also. Just wanted to mention tea. There are a ton of flavored teas and plain teas you could substitute. But same deal, some of them have gluten in the flavorings. So be careful of them also. Plain tea should be ok. If you have hayfever the flavored teas with flowers etc are usually a problem also.

  • 5 months later...
Kinshasav Newbie
Kinshasav
Posted

I just broke out on my elbows after having Milestone Caramel Truffle coffee. I decided to check online to see if anyone else has problems with flavored coffees. It is difficult to know what is safe. I have random breakouts, with food that don't seem to have gluten in them.

I have recently started drinking coffee in the mornings. Last week I drank the Millstone cinnamon hazelnut and the vanilla nut without issues. This week I started on the Millstone Caramel Truffle and got sick with GI "issues" Sunday and Monday. It is my understanding that all Millstone varieties are gluten-free but I decided obviously something is in the caramel that doesn't agree. So last night I went out and bought Folger's Vanilla Biscotti (feel kind of stupid saying I bought something that said biscotti on the label) because I read that all Folger's flavors are gluten free. Well drank my first cup this morning and had even worse issues than with the caramel! Plus I have a weird itchy rash on the top of my hand which I've never gotten before. (I do get rashes on my legs, around the knee when I consume gluten but never anywhere else.)

So I guess basically I'm wondering whether there is anything else in these flavors that I could be reacting to and also where can I find good flavored coffee that is safe. I don't think coffee itself is the problem since I often get Starbucks coffee on my lunch break and do not have issues. I also don't think it's the

Almond Breeze I put in the coffee because I use it in smoothies without issue. Thanks for any help/advice you can provide! :)

Salax Contributor
Salax
Posted

I know this thread was started earlier this year. But I too have been having weird things happening to me and I think it's the coffee. For over a week I have had the swollen, itchy tongue, with D and tummy issues going on. I also saw a gray/white film on my tongue the other day. I did some research and I think I have a coffee/caffine intolerance. Apparently the mouth issues with the gray/white tongue is also related to caffine toxicity. So, those of you that experience any of these symptoms might want to try caffine free and see if it helps. That includes; no coffee, no tea, no caffinated soda, chocolate, etc.

*cry* going to miss my chocolate. :blink:

No bread or chocolate, you have got to be kidding me. *falls over, gets up and grabs some letuce.*

*sigh* :( Food just isn't fun anymore.

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. DebD5
      - DebD5 commented on Scott Adams's article in Spring 2026 Issue
      1

      The Dark Side of Gluten-Free: Counterfeit Labels and Global Food Safety Failures

      Exactly. What about King Arthur gluten free flour selling a gluten free bread flour containing “gluten free wheat starch” and says in allergens “contains wheat.” I don’t care if it contains a trace amount of wheat ok’ed by the food industry. For a celiac…100% gluten free and that’s all is acceptable. Hard alcohols and ciders and hard seltzers say gluten free...
    2. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Doctors
      6

      Second chance

      Thats the thing, diagnosed in 1994 before foods eliminated celiac by biopsy colonoscopy at Kaiser in Santa Clara now condo's but it has to be somewhere in medical land.1999 got married, moved, changed doctor's was with former for 25 years told him I waz celiac and that.Fast forward to last year.i googled celiac specialist and what popped up was a former...
    3. trents
      - trents replied to EssexMum's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Concerning GP advice

      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the...
    4. Scott Adams
      - Scott Adams replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      Here are some articles on cross-reactivity and celiac disease:
    5. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      327

      Terrible Neurological Symptoms

      @HectorConvector, Here are some articles about "dry Beriberi" and neuropathy. I hope you've been able to acquire thiamine hydrochloride or Benfotiamine. I'm concerned. Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,641
    • Most Online (within 30 mins)
      7,748
    JennaK23222
    Newest Member
    JennaK23222
    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)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Jmartes71
      Second chance

      By Jmartes71 · Posted

      Thats the thing, diagnosed in 1994 before foods eliminated celiac by biopsy colonoscopy at Kaiser in Santa Clara  now condo's but it has to be somewhere in medical land.1999 got married, moved, changed doctor's was with former for 25 years told him I waz celiac and that.Fast forward to last year.i googled celiac specialist and what popped up was a former well known heard of hospital. I thought I would get answers to be put through unnecessary colonoscopy KNOWING im glutenfree and she wasn't listening to me for help rather than screening me for celiac! Im already diagnosed seeking medical help.I did all the appointments ask from her and when I wanted my records se t to my pcp, thats when the with holding my records when I repeatedly messaged, it was down played the seriousness and I was labeled unruly when I asked why am I going through all this when its the celiac name that IS what my issue and All my ailments surrounding it related. I am dea6eoth the autoimmune part though my blood work is supposedly fabulous. Im sibo positive,HLA-DQ2 positive, dealing with skin, eye and now ms.I was employed as a bus driver making good money, I loved it for the few years my body let me do until I was yet again fired.i went to seek medical help because my body isn't well just to be made a disability chaser. Im exhausted,glutenfree, no lawyer will help and disability is in limbo thanks to the lax on my health from the fabulous none celiac Google bay area dr snd team. Its not right.
    • trents
      Concerning GP advice

      By trents · Posted

      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
    • Scott Adams
      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      By Scott Adams · Posted

      Here are some articles on cross-reactivity and celiac disease:      
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      @HectorConvector, Here are some articles about "dry Beriberi" and neuropathy.  I hope you've been able to acquire thiamine hydrochloride or Benfotiamine.  I'm concerned.   Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pubmed.ncbi.nlm.nih.gov/30862772/ Dry Beriberi Manifesting as Acute Inflammatory Demyelinating Polyneuropathy in a Patient With Decompensated Alcohol-Induced Cirrhosis https://pmc.ncbi.nlm.nih.gov/articles/PMC7707918/ A Rare Case of Thiamine Deficiency Leading to Dry Beriberi, Peripheral Neuropathy, and Torsades De Pointes https://pmc.ncbi.nlm.nih.gov/articles/PMC10723625/
    • cristiana
      Concerning GP advice

      By cristiana · Posted

      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
×
×
  • 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.