Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

What's With The Coffee?


Mera

Recommended Posts

AliB Enthusiast

Oh and yes, it can 'bend' the brain. One of the most common symptoms of gluten intolerance is 'brain-fog'. Some say it's the gluten, I believe it comes back to bacterial activity and the toxins they release when they are chomping on the gluten and other carbs..........


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



Celiac.com Sponsor (A8-M):



LadyWicklow Newbie

Thanks Ali,

(Just realised you are right next door in Wales)

To be honest, since I *faced it* a couple of months ago (before that I knew about it, but denied by dismissing the whole idea as, faintly Wiccan, superstition...WHAT IS WITH the denial thing?) celiac is the fast track to a PHD in biochemistry for me too....and everything you say fits everything I have figured so far for myself.

Though, personally I have always had some kind of tannin intolerance. For many years tannin gave me migraines, but, perhaps, only over certain levels, or in certain combinations. Let me tell you how that worked in case you can factor it in to your thinking anywhere...

Until 2001 I smoked up to 50 a day for 28 years, which is LOADS of tannin. During that time, I could either drink tea habitually, or coffee, but if I mixed them (had a cup of tea during a coffee drinking period, or vice versa) I would get migraine. I got migraine, and sick from beer and red wine too, and could not stand the taste of red wine at all.

BUT

After I quit smoking I fell in love with Red Wine...though, mostly, low tannin Shiraz and Merlot, and suffered no particular ill effects (beyond the usual :blink: *hic*). It always puzzled me, why I couldn't stand the taste of red wine until after I quit smoking...I just figured my taste buds had healed or something.

After I quit smoking I started getting severe odema (which has plagued me all my life, and now turns out to be some kind of allergic histamine reaction) if I drank sherry.

So it seems as if I could tolerate a certain amount of tannin before it affected me. Maybe I still can, or will be able to when it all finally settles down...but, if so, I think I'll save that metabolic "allowance" for fruit and veg...not speeding caffeinating my bewildered brain while I stain my teeth brown!

I discovered the SCD recently and it really is a lifesaver...as long as you remember to pull all your other allergies off the legal food list.

Here is a very helpful page I found about tannins in food, with foodlists:

Open Original Shared Link

Apart from "brain fog" (which I have for so many different reasons a little celiac wouldn't notice :rolleyes: ) I wonder sometimes if any food sensitivity is a mind bender? In the sense that your body will tend to tell you what it needs through taste, cravings and revulsions...except sometimes the cravings and revulsions seem to get upside down...and you start to crave the very things you must not eat?

LadyW

AliB Enthusiast

I actually think that those little beasties in your gut actually make you crave the stuff they feed on! If Candida is a problem then the added problem with alcohol is that the yeast carb digestion turns into Ethanol - hence the record of people being 'drunk' without actually having had any alcohol.

I have not been able to tolerate alcohol for years, except perhaps a quaff of Lambrini (if you can call that alcohol by any stretch of the imagination) or occasionally a well-diluted Pimm's (on the rare occasion we actually get a summer!). One drink of 'normal' alcohol and I'm under the table (when I think I used, as a teenager, to drink 6 or 7 martinis and then drive home! Ah, the risks I took before I developed a Christian conscience!) It also seems to go straight to my bowels for some reason. It makes me cough. Oh yes, and I have never had to deal with the added tannin-fest of smoking (well only briefly during that short conscience-devoid foolish-teenager section when I would spend a fortune on the things and end up giving most of them away to make friends and influence people!).

Tea always made me feel queasy and I could never stand the taste of old fags after having coffee but it wasn't until my digestion collapsed back in January and I was taking some Slippery Elm and feeling worse instead of better that a bit of research on what was in it finally clicked the rest into place.

As I am starting to heal now, it may be at some later stage I could tolerate alcohol when, and if, I ever get the Candida under control, but to be quite honest I have never really worked up a taste for it and not having had it for so many years I don't miss it. Chocolate however.........

Again, with the brain-fog thing I am sure that it comes back down to bacterial activity. The toxins these little beggars throw out can affect any part of the body. I have a friend with RA. She is gradually getting worse and I am desperately trying to get her to go on the SCD. Trouble is, her brain just doesn't really function well enough for her to cope with it so she is in a cleft stick. She is terrified that she is losing her mind.

The SCD is about breaking the vicious cycle but you have to have a degree of clarity in order to cope with it. Mind you, my husband has Fibromyalgia and his brain-fog has cleared a lot since he went gluten-free with me in Jan - I just can't persuade him to come on the SCD with me though - he has a pathological and totally unjustified aversion to yoghurt!

When you say 'next-door' and with a name like Wicklow am I right in assuming you are in the Emerald Isle?

Ali.

LadyWicklow Newbie

Now there is a funny thing Ali,

***

I could never stand the taste of old fags after having coffee

***

I get a really nasty aftertaste after tannins too, that is how I am learning to recognise when I have had them, if I keep taking them it, it becomes a very sore mouth in the end...

Not really worth it, but what on earth else can I drink?

Ah well, at least we can get p*ssed cheaply...one teaspoonful at a time ;)

...and yes, I definately am just "across the sea in Ireland..."

LadyW

AliB Enthusiast

You can drink well-diluted grape juice from a wine glass if you don't want to be left out, and just pretend it's alcoholic - if you're a good enough actress, no-one would ever know!

The Apostle Paul said to Timothy, "take a little wine for the sake of your stomach". Who knows, without the leaky gut and taken a teaspoon at a time it might well work!

Jessicak Newbie
On my 7th day Gluten free,, but still having problems every morning after having my coffee & gluten-free creamer. Within 10 minutes after drinking it I'm running to the restroom. So, I went 2 mornings without & had no problems, 2 mornings with & had the problem!!! SO, I should not have it, RIGHT? but my question is WHY I react like that? I don't like milk, but have no problems with sour cream or cheese. No problems with Dr.Pepper or tea. Any thoughts????

7 days is not very long. Although you may feel better in many ways immedietely, it can take 6 months to a year to completely heal up your intestines to the point of being able to handle anything acidic. Many people eliminate dairy for the first 6 months and find that they are able to re-introduce it at a later point. (I went dairy free for 4 months and then began eating dairy again). I would highly recomend you cut coffee for awhile. Many people that have no problems with celiac cannot deal with coffee in their system, its very harsh, along with any spicy foods, or highly acidic foods. It has been almost ayear now for me and i still can't tolerate coffee, but neither can my best friend and she is not gluten intolerant or celiac. Good luck.

chatycady Explorer

THe only coffee I can tolerate is Starbuck's decaf. I use gluten free Coffee mate. I've tried different brands of decaf and have symptoms - (racing heart, dizzieness, exhaustion, upset stomach).

I love my coffee. FYI. :D


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



Celiac.com Sponsor (A8-M):



mltjq Newbie
I have the same problem with coffee. For me its the the creamers or the sugars. Its literally just coffee no matter what brand or whether its brewed or instant. It makes me grumpy as well. I'm so addicted that its like beating my head against a brick wall. I know it bothers me, but I keep hoping that its something else and it won't bother me "just this time". For me it isn't digestive issues, its more neurological with fatigue and pain. Good Luck!

I feel better you saying this. I think this is what happened to me today. I ordered a small cup of decaf and i think it was full caf. I feel like my heart is going to beat out of my chest any moment. I hate this feeling. Iam never touching anything remotely caffeinated again.

nutrifoodie Apprentice

I got allergy tested for food intolerances through IgG ELISA testing, and coffee came up OFF the charts! So no more coffee for me.. The last coffee I remember having, was like 10 years ago when I was 9 and I had one of those Starbucks mocha things in the little glass bottles. I didn't feel good after that :o I have never been a coffee drinker, so it wasn't a big deal for me to give it up.

  • 6 months later...
GFinDC Veteran

Well, I am off the coffee and tea now. I was drinking plain black tea but then added instant coffee a few months back. I ended up drinking more and more coffee to keep alert and feeling ok. But it seemed to make me crash real bad after a few hours. So I stopped drinking coffee and tea both last Thursaday and feel a lot better now. No more of that stuff for me!

samcarter Contributor

I used to get a headache whenever I drank coffee with cream. I tried soy creamer, still had the same effect. It was a headache right above my nose, between my eyes, and very annoying. Felt like a sinus headache.

So I switched to black tea, and my allergies got worse. Then I learned that mold can be present in black teas.

Now i drink iced coffee with rice milk, and have no headaches. I think it was the dairy and soy that was bothering me, personally.

A lot of this is detective work, and everybody's body is different! I know I loooove my iced coffee in the morning. I only drink it then, if I have any past noon then i know i'll have difficulty sleeping.

  • 6 months later...
smichelle1592 Newbie

I just thought I would let you know that coffee can contain barley, which is one of the things we need to look out for. Caffine bothers me too as of right now, but I've done A LOT of research and coffee does contain barley. Be sure to read the ingredients when picking up a bag.

lovegrov Collaborator

Please provide the names of some specific coffees with barley. I can't remember finding any. Definitely some teas, and it seems to always be listed in those cases.

chatycady Explorer

I have been reading through this topic and I think I know why I react to coffee, tea and chocolate. It's tannin!

I looked up the foods that contain tannin and they are all ones that give me trouble.

Most wines (Chablis and Pino Grigio are ok)

Beer

Coffee,

Tea,

Walnuts, pecans, and almonds

(blanched almonds and skinless peanuts are okay)

strawberries (all berries)

chocolate

grapes

commercial fruit juices (grape, apple juice, orange juice, etc.)

black beans

these are just some of the foods with tannin.

Symptoms are: headache (sometimes migraines) anxiety, rapid heart rate ataxia. If a person is sensitive it can cause iron anemia, B12 anemia, stomach ache, digestive problems and it can cause carbohydrate malabsorption!!!! This may be the last piece of my puzzle.

  • 1 year later...
Anchi Newbie

Well, this just isn't true. As everyone keeps stating, with the new labeling laws, they just couldn't do that without telling us. The instant coffee's are 100% coffee, just the same as the regular coffee's, the decaf's are just decaf, the same as regular decaf. I have been gluten free for almost 8 yrs and have only been glutened once by coffee. A gas station/convience store employee had mistakenly made a pot of hazelnut coffee in a regular pot and I was glutened by one swallow of that hazelnut. Many flavored coffee's do contain gluten, as do many flavored teas.

I just purchased a jar of Folger's Instant Decaf to take on vacation with me and it states on the jar, 100% Pure Coffee, which is the very same statement on the regular cans of coffee.

That explains a lot. I have been gluten free for a year. I still drink coffee and have no problem when I make my own French roast with milk. Once in a while I buy a coffee and add a touch of hazelnut coffee for flavor. On those days I feel tired, brain fog, aches in my legs, sore at the base of my neck, and of course, intestinal issues....etc. So today I looked to see if Hazelnut flavoring in coffee has gluten. Can't seem to find a direct answer, but I'm guessing it does based on my symptoms and based on your statement above.

  • 3 weeks later...
Laurie-Ann Newbie

Hi

New here, and just diagnosed with gluten allergies. I too after removing all gluten from my diet still felt horrible after drinking my morning coffee (plain 8 o'clock coffee and evaporated milk) . I also have Hashimoto's, and when I asked my doctor about the coffee, he said that coffee has the same molecular structure as gluten and my body cannot not tell the difference, so it attacks my thyroid, and thats why I feel miserable. I have to say I never would have figured that one out on my own, but I have had to cut out coffee completely.

sa1937 Community Regular

Hi

New here, and just diagnosed with gluten allergies. I too after removing all gluten from my diet still felt horrible after drinking my morning coffee (plain 8 o'clock coffee and evaporated milk) . I also have Hashimoto's, and when I asked my doctor about the coffee, he said that coffee has the same molecular structure as gluten and my body cannot not tell the difference, so it attacks my thyroid, and thats why I feel miserable. I have to say I never would have figured that one out on my own, but I have had to cut out coffee completely.

I've never given up coffee and feel fine. My daughter, also celiac, is hypothyroid and also has never given up coffee. I question your doctor's theory that your body can't tell the difference between coffee and gluten. Since you are newly diagnosed, you might not tolerate coffee well and your tummy might just be too sensitive.

You might want to give up dairy as many of us do not tolerate it well at first (and some not at all ever).

ETA: You might want to switch to a non-dairy creamer to see if it makes a difference. My daughter said she's switched to almond milk in her coffee.

  • 3 months later...
cavernio Enthusiast

Yeah I know this is old, but might still be pertinent to browsers. I'm no expert, but coffee and caffeine itself is a nervous system stimulant, so celiac or not, it can cause you to run to the bathroom for #2. If you drink it all the time and then go off it, you can find that you're constipated without it; has happened to me occasionally. Coffee's been a go-to drink for my PMS for a long time just to help with the bloating and constipation, and of course for the energy levels. Of course I wasn't gluten-free so the bloating of PMS in addition to my regular bloating was just awful.

I'm still unsure how if I react to coffee differently now since going gluten-free, although I know I should really not drink it at all. If I have it a couple days in a row or more I get really snappy, and then when I don't have any the next day I'm usually more fatigued than usual and I'll get a headache. Also have sleep issues from it. And if adrenal fatigue is a real thing I definitely have that, and coffee's just making that worse.

Now that I think about it, my mom and a few relatives on that side of the family, the side that we suspect might be the carrier for this celiac problem (we're getting it tested slowly but surely), react really strongly to coffee. One cup upsets their stomachs and their hearts start racing. (Occasionally I've had this reaction.) But that's what you'd expect from it if you had like 4 or 5 cups. It is also odd because 3 or 4 cups of tea doesn't have the same effect even though the caffeine amount similar by that time; there's definitely something else in coffee besides caffeine that causes its effects in my family.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jacki Espo replied to Itsabit's topic in Dermatitis Herpetiformis
      3

      SkinSafe

    2. - Russ H replied to Itsabit's topic in Dermatitis Herpetiformis
      3

      SkinSafe

    3. - trents replied to Itsabit's topic in Dermatitis Herpetiformis
      3

      SkinSafe

    4. - Itsabit posted a topic in Dermatitis Herpetiformis
      3

      SkinSafe

    5. - trents replied to Cathijean90's topic in Introduce Yourself / Share Stuff
      1

      I’m terrified it’s too late for me😭


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,317
    • Most Online (within 30 mins)
      7,748

    JFord
    Newest Member
    JFord
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jacki Espo
      For me I gave up oat products and it finally cleared. I had a whole body reaction for months. Two additional culprits for me: shared grill at a restaurant or a shared toaster.  Hope you have relief soon. 
    • Russ H
      It can take between 6 months and 2 years for the dermatitis herpetiformis rash to resolve. The symptoms of dermatitis herpetiformis arise from deposits of certain antibodies building up in the skin. These deposits attract immune cells leading to inflammation and blistering. It can take 10 years for the deposits to be reabsorbed although symptoms resolve long before this.
    • trents
      Welcome to the forum, Linda! Many on this forum can sympathize with you. It can be extremely difficult to get reliable information about gluten when it comes to meds, supplements and oral hygiene products. This is especially true since so much of this stuff is generic and comes from over seas. I will deflect with regard to your question about meds and oral products but take you in another direction. Have you tried a low iodine diet. Iodine is known to exacerbate dermatitis herpetiformis and some find that a low iodine diet helps reduce the number of outbreaks. By the way, have you had your celiac antibodies retested recently? If they are elevated that might be a clue that you are getting gluten in your oral hygiene products or meds.
    • Itsabit
      Hi. I’m 70 years old, and a 22 year survivor of head and neck cancer treated with chemo-radiation, which resulted in non-existent submandibular salivary glands and extreme dry mouth and altered oral mucosa. I have been using dry mouth toothpaste, Rx oral dentrifices and moisturizers for years.  I’ve recently been diagnosed with severe celiac dermatitis herpetiformis. I was being treated with oral Dapsone, but it was not effective and I developed some serious side effects. So, the medication was stopped and I was started on Doxycycline (another antibiotic) for inflammation. I’ve been using Rx Betamethasone steroid ointment with little to no effect. I have tried every oral and topical antihistamine treatment available OTC. None have touched this horrible relentless itching. That is my history.  Now to my question. Does anybody know about gluten free toothpastes and mouth moisturizers? I ask because a very common dry mouth brand stated to me that they were indeed gluten free. But as I am not getting any better with my dermatitis herpetiformis, I was wondering if I was getting glutenized some way other than diet as  I have been following a strict clean gluten free diet, but I am not seeing any improvement at all. So, I started looking up the toothpastes and moisturizer ingredients individually and nine (9) of the eleven (11) or so listed showed up as   containing gluten or that may have gluten! Am I getting glutenized orally by these products?  As an aside, I checked on my favorite lavender scented baby lotion which is supposed to be gluten free, but many of those ingredients when investigated separately, show they  do contain or may contain gluten as well. I stopped using the lotion. But I cannot forgo my dental care. I was unable to get any information from the manufacturer of my current brand of chewable multivitamins either. They told me to check with my doctor. If THEY don’t know what’s in their product, how do they think a PCP will?  In light of all this, I am confused and angry that I might keep getting contaminated with gluten through products I am using that are supposedly gluten safe. *I should also state that I have a nickel allergy since I was about 12-13 years old. And I developed a contact allergy to latex (gloves) when I was a student nurse at 19 years old.  I know and I’m sorry that this is so lengthy. I’m trying to do everything I can to combat this condition, and I’m feeling very confused, anxious and angry about not getting adequate information as I try to educate and advocate for myself. I’m hoping someone here is more knowledgeable than me of how to navigate through all of this. Can anyone offer any advice?  Thank you for your time.  Respectfully,  Linda
    • trents
      Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992. Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago. The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is.  The good news is, it's still pretty rare as a whole. Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart! But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?
×
×
  • Create New...