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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.
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Going Dairy Free
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33 posts in this topic

I'm not feeling all the way better with my stomach and still having some C. I felt much better after going gluten free and I was regular until I got glutened over 2 weeks ago. I have been having some cramping and bloating along with gas. Its common for many people to go dairy free as well as gluten free at first. I have cut out all gluten, so I am getting my carbs from dairy. I love dairy. I need dairy. I haven't been drinking milk for over a month. Now I am cutting out cheese and yogurt.

Do I need to cut out butter?

Can I cheat sometimes with dairy? I have a lactose blocker but I don't know if it works.

Do I have to worry about dairy in things (brownies, cookies, pancakes)?

Also one quick question: Is candy corn gluten free?

Thanks for all the help and my doctors app. is on thursday. B)

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I'm not feeling all the way better with my stomach and still having some C. I felt much better after going gluten free and I was regular until I got glutened over 2 weeks ago. I have been having some cramping and bloating along with gas. Its common for many people to go dairy free as well as gluten free at first. I have cut out all gluten, so I am getting my carbs from dairy. I love dairy. I need dairy. I haven't been drinking milk for over a month. Now I am cutting out cheese and yogurt.

Do I need to cut out butter?

Can I cheat sometimes with dairy? I have a lactose blocker but I don't know if it works.

Do I have to worry about dairy in things (brownies, cookies, pancakes)?

Also one quick question: Is candy corn gluten free?

Thanks for all the help and my doctors app. is on thursday. B)

Although I thought I had lactose intolerance and used "Lactaid" drops, tablets and/or milk for several years before my celiac diagnosis, I was diagnosed with casein allergy along with gluten intolerance (and celiac markers). So I realized I was not digesting the casein protein in dairy products, not just the dairy sugar 'lactose'. From then on I abstained from all forms of dairy, anything which contained casein, rennet or whey, because I hated those waves of cramping pain, sinus infections and constipation reaction symptoms from dairy. To answer your questions:

Yes, you need to find a safe casein/dairy free butter substitute. If you tolerate soy, Earth Balance (yellow container) is a great substitute. If not, the red carton Earth Balance product is equally good.

Cheating sometimes with dairy just means you'll get more intense reaction symptoms than if you never stopped eating dairy. The longer periods between consumption cause even stronger (more painful) reactions. If you're going off dairy, find good substitutes so that you won't feel tempted to cheat. I went off dairy in July 2004. Since then I've found more and more great (soy free) substitutes for all my former favorite dairy products.

YES, you'll have to abstain from products with contain small amounts of dairy. Read labels. Shop at stores which carry allergy free products. You will find dairy free products. However, you can make your own brownies, cookies, pancakes for much less than you can buy them. There are gluten-free pancake mixes to which you can add either rice, soy, coconut, hemp or any nut milks. I cook with rice milk (because it's cheap) unless I want a higher fat content in my end result. Then I'll use either coconut or hazelnut milk (I don't have nut allergies).

Yes, candy corn is gluten free.

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This is too depressing. I might just go back on gluten and pretend like my "symptoms" are the norm like I always have. >.<

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This is too depressing. I might just go back on gluten and pretend like my "symptoms" are the norm like I always have. >.<

That won't solve your problem, Boog! C'mon now!

Giving up dairy is temporary for most celiacs. A few months so the villi can heal and you don't feel like crap.

Get coconut milk (So Delicious brand), you won't notice any difference. High in calcium, tastes great. They make a great coconut "ice cream" too.

Get Earth Balance soy free spread.

You can do this. :)

Here, read this:

Interview with Dr. Stefano Guandalini, Director of the University of Chicago Celiac Disease Center:

In general how long does it take for lactose intolerance secondary to celiac disease to resolve?

“Lactose intolerance (if present: in many patients, and particularly those who come to the diagnosis with minimal GI symptoms, even lactose can be fully digested) would persist until an adequate intestinal absorptive surface is reconstituted; again, this is variable between different patients, but typically 2-3 months should be enough to allow for regeneration of adequate amounts of lactase."

Feel better?

I admit, I had to wait much longer than a few months to digest dairy, but I was very ill for many years. Everyone is different. Some celiacs can NEVER digest dairy again, but that is not the "norm".

Don't get frustrated, you're still healing. Hang in there!

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Well according to my biopsys: Everything looks normal. So does that means there is no damage? Or no visible damage? What if the blood results were just a false positive? Is that possible? :angry:

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False positive blood results are actually extremely rare. :rolleyes: False negatives are quite common :)

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False positive blood results are actually extremely rare. :rolleyes: False negatives are quite common :)

shroomie, we all seem to know this, yet this recent article claims:

"false positives are not unusual"...what the heck?? How could they write that? There are more things in the article to take issue with,but that bothered me terribly.

http://www.nytimes.com/2011/11/13/magazine/diagnosis-hurt-all-over.html?_r=1

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Well according to my biopsys: Everything looks normal. So does that means there is no damage? Or no visible damage? What if the blood results were just a false positive? Is that possible? :angry:

It is my understanding that it just means the damage is not extensive yet, or the biopsied areas were not damaged?

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shroomie, we all seem to know this, yet this recent article claims:

"false positives are not unusual"...what the heck?? How could they write that?

Well, as it turned out, they were not "false positives" were they? :rolleyes: Perhaps the doctor just 'believes' there are false positives and that makes them so?

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Well, what are your symptoms when you eat dairy, anyway ? If the hard aged cheeses don't bother you, and the yogurt doesn't bother you, it may just be the lactose in milk. When I first went grain free, I would "cheat" with just a little dairy sometimes in cheese, and it didn't seem to make any difference. The freaking yogurt was another thing. I gave up after I must have tried every brand in the store and reacted as if it had lactose anyway. Ideally, I would be on organic yogurt, but even the way they processed that with extra added dry milk solids would be too much. Took several years to find something that was plain and not screwed up with thickeners. That was when I pretty much gave up using dairy in baking, because I kept trying yogurts and it was a great way to ruin a batch of bread for me. <_<:angry: Now if I would do something for somebody else, I might put butter in it, like cookies, but I don't use very much at all, still, for myself. I have made pancakes out of almost everything, and "butter" and "milk" is completely superfluous to the process.

You can put condensed coconut milk in coffee. Once you start doing this, if you add other flavorings, like spices and heating it up, you may actually start preferring it to regular milk. High quality, extra virgin Olive oil can be used in most places that butter went before. Mild olive oil can even be successfully used in many types of baking. Coconut oil is also good for cooking, besides the moisturizing. :) Avocados are great where cheese might go as a garnish.

Some of the gluten free commercially baked substitute ingredients just slay me still today. I am not good with flax, I suspect tapioca isn't doing me any favors either, and soy flour, which is, for reasons only known to God, a common contaminant in gluten free mixes, does not set in my digestive tract nicely at all. And I can't do much white fluffy carbohydrates/sugars anyway.

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I keep going back and forth from dairy allergy to not; however, the symptoms say allergy and not intolerance. There is a lot of overlap in the symptoms; however, the bloody sinuses and extreme fatigue leads me more to allergy. A decent test is a week without to see how you feel. That is my goal for this week.

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Well, as it turned out, they were not "false positives" were they? :rolleyes: Perhaps the doctor just 'believes' there are false positives and that makes them so?

EXACTLY my point. Thanks for the back-up. ;)

The criteria for "diagnosing" needs to be revamped. They're all missing the boat--look at all of US!! The whole tone of the article was off-putting to me anyway. The "savoir doctor" swoops in and "saves" the day??? PUL-LEEZ!!!

Five minutes with this woman and WE could have told her she was a celiac. :rolleyes:

Just sayin <_<

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I keep going back and forth from dairy allergy to not; however, the symptoms say allergy and not intolerance. There is a lot of overlap in the symptoms; however, the bloody sinuses and extreme fatigue leads me more to allergy. A decent test is a week without to see how you feel. That is my goal for this week.

Chad,

Not sure how long you have been gluten-free, but the bloody nose/fatigue can still just be from celiac, too. It may resolve soon enough.

I had sinus congestion & pain, swollen throat & puffy face, difficulty swallowing, sneezing, swollen eyelids, a swollen, burning tongue and lips, headaches...I was a mess for 2 years with that stuff. Was it dairy allergies? lactose or casein intolerance? Dust or seasonal allergies? my cat--suddenly I am allergic? :blink:

Extensive (and expensive)testing said NOPE!!! IgE, IgG, etc. Allergist looked at me like I was crazy, yet there I was, eyes & nose dripping, raspy throat, exhausted and ditzy in the head.

All gone now. :) What was causing it? Gluten. :angry:

I agree with you totally. The only way to know what food may be causing the problem is TO REMOVE IT from your diet. I would say give it a month or two.

Best wishes!

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Also one quick question: Is candy corn gluten free?

I think Candy Corn is gluten free itself, but watch for shared facilities. I was looking at some Brach's candy corn at Halloween and it was processed in a facility that also processed wheat.

As for going dairy free, I feel your pain. I think that's harder for me to give up than the gluten. I love cheese. I've been doing "dairy light" recently in preparation for going fully dairy free after the holidays. It's hard, but the dairy has a big impact on my sinuses.

I watched an interesting movie on Netflix the other night called "Forks Over Knives." Basically the movie supports a plant-based, vegan diet. But one of the interesting things in the movie was how dairy really is bad for us. We are the only species that drinks the milk of other animals. And countries that have the highest milk intake, like the U.S., actually have one of the lowest rates of calcium absorption. They talk about how this big push for dairy being an important part of our diets was created by marketing done by the dairy council. And that it, just like wheat, is not really necessary to have a healthy diet.

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you could try ghee (no casein, no lactose)

Pure Indian Foods is a good brand.

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you could try ghee (no casein, no lactose)

Pure Indian Foods is a good brand.

yes, Great idea! :) ( I forgot--I used ghee for months with no issues)

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Thanks for all the input everyone. I think I will start dairy light. Stil use small amounts of butter and milk in baking products this week. Next time we go grocery shopping we'll buy some dairy free milk. Is silk a brand anyone uses? I see it all the time.

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I keep going back and forth from dairy allergy to not; however, the symptoms say allergy and not intolerance. There is a lot of overlap in the symptoms; however, the bloody sinuses and extreme fatigue leads me more to allergy. A decent test is a week without to see how you feel. That is my goal for this week.

If your gut is bad and autoimmune system is on fire, I'd recommend more time for healing, like six or even (Yikes!) 12 months. of avoiding what hurts you. That could just be my experience though, and it seemed like everything I ate was making me ill. I'm doing much better and reintrducing foods now.

I'm only adding this as friendly advice.. maybe a week work's for you, if so, that's great!

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If your gut is bad and autoimmune system is on fire, I'd recommend more time for healing, like six or even (Yikes!) 12 months. of avoiding what hurts you. That could just be my experience though, and it seemed like everything I ate was making me ill. I'm doing much better and reintrducing foods now.

I'm only adding this as friendly advice.. maybe a week work's for you, if so, that's great!

Thanks, Marilyn for adding this in support of what I said earlier..... I sound like a broken record on here, :rolleyes: but the truth is, when your gut is so ravaged, EVERYTHING seems like it is a problem. I drove myself insane with that stuff "is it this, that, the air I breathe??" :blink: Rotations diets, elimination diets, blah blah blah.

I know many do not like to hear the "it could take months to a year answer"...but sadly, with celiac " it just is what it is ...until it isn't."

I thought I had MULTIPLE FOOD INTOLERANCES, I was so sick, even for 6 MONTHS after going gluten-free. I could not even swallow some things! Even veggies hurt. Citrus? like battery acid! Food was like razor blades. I am not kidding. I was down to rice and water at one point. I just hung in there and now,

I eat everything! :)

Time. Heals. All.

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My go to "butter" is Earth Balance (not the soy, i don't do soy) and Fleishmanns UNSALTED sticks (for baking/frosting and the like). My son has Celiac as well as allergies that include dairy. I make 90% of our dinners gluten-free/DF (as well as peanut, tree nut, egg, coconut/palm, banana and blueberry free).

It isn't that tough once you get the hang of it.

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As for going dairy free, I feel your pain. I think that's harder for me to give up than the gluten. I love cheese. I've been doing "dairy light" recently in preparation for going fully dairy free after the holidays. It's hard, but the dairy has a big impact on my sinuses.

Totally agree with all of this! It's hard! I'm experimenting with dairy free (going dairy light to start). I've done a few days at a time and then I fall off the wagon, I adore dairy. Dairy and wheat used to be my two main food groups :-) I'm lactose intolerant so I've mostly ditched yoghurt, cottage cheese etc, lactose free milk is awesome but it doesn't work with my insulin resistance. I've recently been eating cream cheese muffins (no base) and they are so yummy, but using up a packet of cream cheese today (swearing I wouldn't buy more) I now have a big stomach ache from the ones that I just ate. Meh. I need to remember this feeling.

Coconut cream is great! It's really good for you too. They rave about it constantly over at Mark's Daily Apple (where they are also totally down on grains so those recipes are very gluten free friendly)

Be careful with your food intake if you drop dairy suddenly. I cut out milk and yoghurt and suddenly lost about 50gs carb a day, it was a bit of a shock to my body (I'm already pretty low carb). Those calories need to be replaced somehow (unless of course you're eating tonnes of food and could afford to cut back)

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If your gut is bad and autoimmune system is on fire, I'd recommend more time for healing, like six or even (Yikes!) 12 months. of avoiding what hurts you. That could just be my experience though, and it seemed like everything I ate was making me ill. I'm doing much better and reintrducing foods now.

I'm only adding this as friendly advice.. maybe a week work's for you, if so, that's great!

Booo. lol. I really need to get serious with no gluten, dairy, and soy. Been too lax here lately.

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Booo. lol. I really need to get serious with no gluten, dairy, and soy. Been too lax here lately.

Yep, going half way doesn't get you there - it only gets you half way :D

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I'll just throw in my 2 cents here:

I've been in denial about issues with dairy for probably a couple years (since going gluten free), probably because I never would have expected to have the symptoms I do because of it (sinus congestion/pain, headache, mild vertigo, some nausea but not much in the stomach department). Recently I've tried cutting down on salt and dairy to help manage the vertigo and wham! While salt also aggravates it, dairy gets me going immediately as well. I'm pretty sure it's an intolerance to casein, and am now going to try going dairy free for a few weeks.

I think you have to stick to a certain diet for a couple weeks at least before you can be really sure you're getting better or worse. Our bodies need time to heal or adjust. Some of the proteins in milk (if it's casein you're having trouble with) are similar to gluten in structure and could be causing similar problems.

Not drinking milk is no problem, but resisting cheese, butter, and yogurt is definitely a difficulty and an ajustment. But same as accepting that you can't have that piece of cake or pint of beer you've always enjoyed, you find things to replace it with, get better, and never look back!

(also, about that article, amazing how hard some doctor's have to think about whether it's celiac or not. Even if it had been a "false positive", any doctor with half a brain should tell them to go on the gluten-free diet away. My bloodtest was negative, I've never had a biopsy, and I know I have it. If you get better on the diet, the tests really don't matter all that much.)

Good luck!

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Not drinking milk is no problem, but resisting cheese, butter, and yogurt is definitely a difficulty and an ajustment. But same as accepting that you can't have that piece of cake or pint of beer you've always enjoyed, you find things to replace it with, get better, and never look back!

I Agree!!! ...cheese was harder for me to give up than gluten... :(

I went many months DF (except for butter)---just added some cheese and yogurt back in. Still use coconut milk, though. So far, so good. IN MODERATION. ;)

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