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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

What's With The Coffee?
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43 posts in this topic

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????

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Does your creamer have casein (or even carrageenan or soemthing)? It's possible it could bother you.

You could try the coffee without the creamer. See if that works. Some people can't handle coffee...but if you love the coffee, might wanna see if it's something in the creamer first. When you're new at gluten free, your gut may react strangely to stuff that's usually doesn't bother you while healing is taking place.

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Hi. I'm also having trouble with coffee. I hate the thought of giving it up, I've practically lived on coffee for as long as I can remember. I'm down to drinking it only in the morning....forget the afternoon pot that I used to make...I bloat up like a pufferfish before I even get the first cup down. But then again, everything is doing that to me. I've been on the diet for almost 3 months and still having lots of problems. The good news is, that at least now I'm having less problem at least some of the time. Hang in there!

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Coffee can react bad to the stomach especially in mornings on an empty stomach it can be bad. It could be something in it that is causing it. Is it just when you have coffee in the morning or anytime?

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The "non-dairy" creamer would do that to me, whether due to the casein, HFCS or who-knows-what.

(Just remembered that my little brother had the same issue, tho he wasn't celiac as far as we know)

Easy test tho.

Coffee alone, or creamer alone. I didn't catch whether the creamer is a liquid or powder, so obviously it's more doable if it's liquid.

I often use Pacific brand Hazelnut milk in coffee , tho I usually don't think my coffee needs anything, now that I've started buying GREAT coffee from little coffeehouses which have a roaster in-house.

Artfully roasted small-batches are SOOOOOOO good I've turned several former Starbuck's (aka charbucks to reflect the burnt flavor of over-roasting, which fully necessitates milk/creamers/flavorings) drinkers into anti-starbucks converts. :)

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I just have 1 cup in the Morning (on an empty stomach) and use liquid creamer. I plan to try coffee without any creamer tomorrow & see what happens.

THANKS SO MUCH!

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After being gluten free for 7 months I was still having problems regularly, and it was always after my coffee, which I had two cups every morning with that Coffee Mate Vanilla stuff, dairy and gluten free. I also found myself not eating any breakfast in the morning because it took my stomach a couple hours to settle down after I had the coffee and food was aggravating it, and I couldn't "not eat" since I was already losing too much weight. Plus I am a college student, and I need to feed my brain.

So this past summer, (after summer school let out) I did it.... I went caffeine free. I never thought in a millions years I would give up coffee for anything or anyone! But I was feeling so much better after going gluten free, except for the coffee... so I had to try it.

It was a tough couple of weeks, but soooo worth it. I am so glad I gave it up.

I now drink decaf with the same creamer every morning... and I can eat breakfast. I also am no longer a slave to caffeine and all the diuretic effects that go along with it.

So... I guess for me, the pain of staying on caffeine was worse than the pain of getting off. I have to tell you though, I almost gave up a time or two while I was decafing by body. In the end it was totally worth it in a huge way, and I am really glad I did it.

(Now I am hanging on to my wine... :)

Good luck!

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I've heard that the instant coffees actually have gluten in them to keep them from caking up and sticking all together. It is not listed on the label.

Brew only and see if it still happens.

ML

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So, I went 2 mornings without & had no problems, 2 mornings with & had the problem!!!

I was having problems for two months, went off coffee yesterday and this morning and I am feeling 10 times better. No running to the bathroom 30 mins after my coffee. I can't believe it took me so long to figure out it was the coffee. I don't think I wanted to even think about giving that up. I'm hoping that once my stomach heals again I can have some once and awhile. I've also cut out citrusy fruits, craisens and red wine. Seems to be helping! Whatever works right?

(gluten free 10 months, antibodies almost back to normal - not sure what caused the stomach upset in the beginning, maybe small glutening)

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I've heard that the instant coffees actually have gluten in them to keep them from caking up and sticking all together

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.

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When we omit the main antagonists from our diet we will often find that other food issues show up that originally were masked by everything else. It is likely that coffee has always been a problem but you just didn't notice it until the other things were taken away!

I noticed Emily that you seem to have problems with things like raisins and red wine. I can't drink tea, coffee or wine and it wasn't till I had a problem when my stomach was bad (pre gluten-free) with Slippery Elm which is supposed to be good for the stomach and discovered that it contains Tannin, that the jigsaw puzzle fell into place.

Tannins are in all these foods. I may find later, when my gut has healed that I may be able to tolerate them occasionally but for now they are definitely out of bounds. The only wine I can drink is the really low alcohol white wine, but I don't drink much of that as it can have a high sugar content.

Those who can't drink coffee may find that it isn't the caffeine that is the problem (although it does put an unnecessary loading onto already over-stressed livers!) but the Tannin. I am now just sticking to plain spring water with an occasional herb tea. Yes I miss my milky drinks, especially hot chocolate but what price is health? It may taste nice, but if it is harming me, I only have one body and can't get it back once it is ruined, so it is just not worth the sacrifice.

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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!

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I totally hear you, Jitters! That is my problem too. Have been gluten-free since Jan 08 (aside from all the mistakes and slipups we newbies make), then discovered dairy was a problem. Started drinking coffee black, but it seems any decent amount of caffeine from a regular cup of coffee just makes me feel as though my whole nervous system is having a bad reaction. I am hurting, grumpy, and frazzled! Now just the residual caffeine from a decaf cup is all I am ready to handle, just one cup a day, or every other day. Maybe I will switch to a tiny cup of Greek coffee of something, just because I am not psychologically ready to give it up entirely (still experimenting to see whether bad reactions to dairy, potatoes and tomatoes are going to be a permanent thing).

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Tannins are in all these foods. I may find later, when my gut has healed that I may be able to tolerate them occasionally but for now they are definitely out of bounds.

I was wondering about Tannins awhile back when I was trying to figure out the cranberries. When I researched it I noticed I was eating a lot of foods with Tannins in them. I must have missed the coffee (or subconsciously ignored it).

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Oops, in my post it should have said its NOT the creamers or sugars in the coffee. Its JUST the coffee itself that bothers me. Of course I've never tried decaf...

Looks like I'm going to have to research Tannins and maybe even switch to decaf for a bit, then quit that as well. I've quit coffee before numerous times and both times it has taken 2 full weeks before I felt like I was going to be ok without it. On the positive side it took about 4 days before I felt good again, so it was well worth sticking out the rest of the two weeks. Interestingly it takes about 4 days before it starts bothering me again once I start drinking it again. So then I feel like I'm doing good on it and it just MUST have been something else bothering me. Again, here I go hitting my head against a brick wall.... sheesh! When will I learn!!

I think I might try soy free as well, everyone I know who has gone soy free has done so much better on it. Does anyone know how long it takes after going soy free that you feel a difference?

Maybe we should start a "giving up coffee" support thread!!

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I think I might try soy free as well, everyone I know who has gone soy free has done so much better on it. Does anyone know how long it takes after going soy free that you feel a difference?

For me it was 12 days.

And it made for a downright miRACulous transformation.

I'd truly never even IMAGINED it was possible for ME to spend day after day happy as a kid on Christmas Morning.

It's not THAT great every single day anymore but it was 24/7 for ~4 months at first. :D

I'd thought I tested soy well enough a couple times prior, but those were just for 5 or 7 days.

PLEASE give it 2 weeks minimum!! :)

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Thanks Tom! I think I am going to go soy free, and give it a month at least. It can't hurt thats for sure! I'm just hoping that its not like gluten and its hidden in flavorings, etc. Ugh!

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Unfortunately for a lot of people, its not just gluten but carbohydrates per se that is the problem. They may feel better for a while but because they have just ended up replacing the gluten carbs with different non-gluten ones, they will eventually become intolerant of those too. Meanwhile, the gut is still not healing properly.

Some of us just aren't able to cope with carbohydrates at all. I have known for years that I don't cope with carbs but carried on eating them in spite of that (stupid woman)! The two times in my life I was well was when I went low-carb - you think I'd have twigged wouldn't you, but it wasn't till my digestion finally gave out in January that I really sat up took notice and started to figure it all out. Up till then I had just put up for years with the fatigue, Candida, IBS, aches and pains, mucous and constant catarrgh, etc., etc., etc.

Now I am gluten, dairy, sugar and virtually all carb free except for that in fruits and vegetables and a little honey and nuts, and it is really giving my gut a proper chance to heal. I am beginning to get some energy, am sleeping better, my digestion has settled down, I no longer get the restless legs and hot feet, my hair has stopped falling out, and I am now, after just a few weeks, able to tolerate a few foods that I couldn't. I am hoping once my gut has had a really good time to heal I will be able to cope with a lot more food - maybe even wine and coffee!!!

The lack of carbs is not a problem, I have not lost any weight (although I could do with it and it may come later once my body has sorted itself out and finished off-loading a lot of the crap!). I know we are all different and this may not work for everyone but I know there are a lot like me who have major problems with carbohydrates.

I have just ordered BioBalance2 by Rudolf Wiley from Amazon which indicates that there are three main types. Those whose genetic make-up indicates that they should eat mainly protein, those who should eat mainly grains and those who fall in the middle. Because I cope far better with protein foods than carbohydrates I think I am probably the former although I may be a mixed. It will be interesting to get the book and analyze our types as I am fairly certain my husband is different to me. Looks like we might be better off eating different foods for our meals!

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I'm wondering if after the gluten is taken out and inflammation goes down and healing begins to take place if the caffeine has a much stronger effect, not only on the bowels but the nervous system.

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I'm wondering if after the gluten is taken out and inflammation goes down and healing begins to take place if the caffeine has a much stronger effect, not only on the bowels but the nervous system.

That's a very interesting thought. I wish there were more studies on these sorts of things. I wonder if we all could have healed better if we went on a specific diet after going gluten free. I wish I had the time to become a registered nutritionist so I could have more tools to figure this all out!

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Just to complicate matters, I had my decaf (no milk, one/two tsp sugar) and felt achey and cranky for hours yesterday. Yet later in the afternoon I had full strength mug of English Breakfast tea (no milk, some sugar) and no bad reactions at all. This is my first clue that maybe it has nothing to do with the caffeine.

A registered dietician told me to switch to green tea because of its anti-inflammatory properties. She thought that it might give me my caffeine kick and help the healing process. May be worth trying out. Has anyone else received this advice before?

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CCM- While I've never actually gotten that advice from a doctor, my mom and I always switch from coffee to Black Chai Tea, then to Green Tea. We always use the Stash brand. The black tea has a little more caffiene in it so its an easier stepping stone to then go to green tea. While tea might have caffiene, its still not near as much as the coffee which I'm thinking bothers us so much because it's a bean (the whole leaky gut thing) When we are off the coffee and on tea we both feel SO SO SO much better. It's amazing! As for anti-inflammatory, I'm not scientifically sure but I do know that our rings start spinning around our fingers and our clothes are much looser after a day off coffee and on the tea.

Having said all that I am waiting right now for my cup of coffee.... seriously, you'd think I'd have learned by now!!! Tuesday is my day to quit coffee and start the tea again. I'm seriously thinking about a support group! :)

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Green tea is not fermented but the black tea is fermented and so are the coffee beans. It may or may not be a factor for you... who knows. Go with what your body tells you is best as we all react differently

The info. that I received on instant coffee with flour added to prevent caking and lumps came from a show called Your Health on tv with Dr. Becker. It was a show devoted exclusively to celiacs. I don't know where he got his information ... sorry.

ML

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Does celiac bend the brain or something? :(

I just spent weeks ruefully resigning myself to a life without tea, chocolate and Australian Shiraz because of the pretty dramatic reaction I have (the one where I swell up like a water balloon and my mouth ulcerates) while drinking gallons and gallons of coffee so strong you could stand the spoon in it...

:o

My dentist told me there is tannin in coffee, and coke...

But it is in so many more things too:

http://en.wikipedia.org/wiki/Tannin

Apples, smoked foods, red berries...

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Does celiac bend the brain or something? :(

I just spent weeks ruefully resigning myself to a life without tea, chocolate and Australian Shiraz because of the pretty dramatic reaction I have (the one where I swell up like a water balloon and my mouth ulcerates) while drinking gallons and gallons of coffee so strong you could stand the spoon in it...

:o

My dentist told me there is tannin in coffee, and coke...

But it is in so many more things too:

http://en.wikipedia.org/wiki/Tannin

Apples, smoked foods, red berries...

Since I last posted on this thread back in March I have done a lot of research.

The research has led me to the conclusion that a lot of our problems are due to rogue bacteria and gut dysbiosis. When the gut balance gets out of hand certain bacteria can trigger inflammation and leaky gut exacerbated by undigested carbohydrates. The gut cannot process carbs properly due to to the damage and the undigested carbs feed the rogue bacteria setting up a vicious cycle.

The leaky gut leads to more intolerances. Many typically find that although going gluten-free initially helps, eventually they seem to get worse. gluten-free foods are typically much higher in carbs which just ends up fomenting the problem.

I have had a problem with tannins but it may just be that tannin molecules are of a type that easily escape through my gut wall into the blood stream triggering a reaction.

I have been following the Specific Carbohydrate Diet since April. It is designed to remove the antagonistic carbs and crap processed and chemicalised stuff from the diet allowing the gut to heal. There are quite a few of us following it now and gaining good success.

We spend so many years throwing rubbish down our throats and then can't figure out why we get so sick! It doesn't seem like abuse because everyone else is also doing it but sadly for some of us it eventually comes back and bites us in the bum - big time!

There is a thread on this section on the SCD if you want to know more.

Regards, Ali.

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