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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

May Have Found A Huge Answer...but Still Confused (Possible Dairy Allergy)
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zebaldwin    1

I've had many chronic symtoms over the past probably 7 or 8 years...getting worse over the past 2 years.

The core symtoms are chronic nauseous, dizzy, headaches/migraines (nearly every day), general fatigue and weakness, and brain fog.

I've seen MANY doctors. Multiple GPs, multiple neurologists, a GI, an ENT, eye doctors, dermatologists, therapists, you name it. Have also had a brain MRI and have been tested multiple times for celiac (blood and biopsy, all negative).

For a while I thought it might be celiac and went on a gluten free diet for several months with no results whatsoever.

The past few months I sort of gave up.

About 3 weeks ago I decided to completely cut dairy out of my diet after reading an article on food allergy related migraines.

Well, my migraines disappeared for the most part. One night I ate pizza to "test" things out, and exactly 24 hours later the migraine hit.

So I came to the conclusion that I had diary related migraines with a 24 hour delay (which I've heard is common).

A lot of things clicked. When I was eating gluten free, I was dairy free for about a week, but re-introduced it so that I could get more protein.

One of the weeks I remember feeling pretty good I was in Ireland and ate no dairy that I can remember.

However, today I got the headache. Yesterday I ate absolutely nothing with any trace of dairy.

I guess my question is, what in Dairy would be giving me the headaches? Is it something that could be in other foods that I'm not aware of? Am I wrong that dairy is causing my problems since I got a headache today?

I got really really excited that I had at least a small breakthrough and figured out one of my problems...but today I am just depressed thinking of why the headache would be back.

I'd appreciate any input that anybody might have...sorry if this is a little vague. I'm trying to sum up A LOT in a few words.

Thanks guys!!

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Lisa    457

I would suggest that you be tested with these:

The following are the celiac specific blood tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

Are these the tests you had taken for Celiac? There is such as thing as Non Celiac Gluten Intolerance, meaning that you have symptoms of Celiac or Gluten Sensitivity, without testing positive. But there is no reliable test for that at this time.

If you like to be retested for Celiac, you must be on a full gluten diet for about three months. If not, you may go FULL gluten free (not sort of).

If you choose the diet, we can walk you through it. But it must be as 100% as possible. If you have no other options to relieve your migrane's, why not try. :)

....and welcome!

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I've had many chronic symtoms over the past probably 7 or 8 years...getting worse over the past 2 years.

The core symtoms are chronic nauseous, dizzy, headaches/migraines (nearly every day), general fatigue and weakness, and brain fog.

I've seen MANY doctors. Multiple GPs, multiple neurologists, a GI, an ENT, eye doctors, dermatologists, therapists, you name it. Have also had a brain MRI and have been tested multiple times for celiac (blood and biopsy, all negative).

For a while I thought it might be celiac and went on a gluten free diet for several months with no results whatsoever.

The past few months I sort of gave up.

About 3 weeks ago I decided to completely cut dairy out of my diet after reading an article on food allergy related migraines.

Well, my migraines disappeared for the most part. One night I ate pizza to "test" things out, and exactly 24 hours later the migraine hit.

So I came to the conclusion that I had diary related migraines with a 24 hour delay (which I've heard is common).

A lot of things clicked. When I was eating gluten free, I was dairy free for about a week, but re-introduced it so that I could get more protein.

One of the weeks I remember feeling pretty good I was in Ireland and ate no dairy that I can remember.

However, today I got the headache. Yesterday I ate absolutely nothing with any trace of dairy.

I guess my question is, what in Dairy would be giving me the headaches? Is it something that could be in other foods that I'm not aware of? Am I wrong that dairy is causing my problems since I got a headache today?

I got really really excited that I had at least a small breakthrough and figured out one of my problems...but today I am just depressed thinking of why the headache would be back.

I'd appreciate any input that anybody might have...sorry if this is a little vague. I'm trying to sum up A LOT in a few words.

Thanks guys!!

Casein and whey are milk products that are used in quite a few foods you wouldn't suspect. Learn about what milk derivatives are called and read labels (just like gluten). Also, its not uncommon to have more than one trigger and as you discover one you find another. Sucks, but is true.

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Juliebove    93

Are you sure there was no dairy? Did you read every label? Eat any prepared food? There is dairy in many canned soups, even in McDonald's fries. But there are plenty of other things that can cause migraines too. Wine and chocolate are two of them.

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zebaldwin    1

I would suggest that you be tested with these:

The following are the celiac specific blood tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

Are these the tests you had taken for Celiac? There is such as thing as Non Celiac Gluten Intolerance, meaning that you have symptoms of Celiac or Gluten Sensitivity, without testing positive. But there is no reliable test for that at this time.

If you like to be retested for Celiac, you must be on a full gluten diet for about three months. If not, you may go FULL gluten free (not sort of).

If you choose the diet, we can walk you through it. But it must be as 100% as possible. If you have no other options to relieve your migrane's, why not try. :)

....and welcome!

About a year ago I actually became a member here and was very active on the board, thinking I definitely had celiacs.

I got most of the tests you listed as well as a colonoscopy and biopsy.

On top of the that, on my own, I did a FULL gluten free diet for about free months (down to all new cooking utensils and shampoo) with ZERO positive results.

At that point I assumed it was safe to rule out gluten.

And like I said in the earlier post, the only long term relief from the headaches I've had in years was when I completely cut out dairy.

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zebaldwin    1

Are you sure there was no dairy? Did you read every label? Eat any prepared food? There is dairy in many canned soups, even in McDonald's fries. But there are plenty of other things that can cause migraines too. Wine and chocolate are two of them.

For yesterday, I am sure. I checked every label. All I ate was oatmeal with water and sugar, a sandwich with turkey, lettuce and tomato on whole grain white with 100% natural potato chips, and then popcorn chicken and frozen french fries later in the day...checked he label and saw no dairy.

However, the day before, I had pasta with a SMALL amount of parmesan cheese. I guess there is a possibility it could be a 2 day delay...not sure

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zebaldwin    1

Casein and whey are milk products that are used in quite a few foods you wouldn't suspect. Learn about what milk derivatives are called and read labels (just like gluten). Also, its not uncommon to have more than one trigger and as you discover one you find another. Sucks, but is true.

I actually was thinking that was a possibility too since I eat a lot of lunch meat and things with "caramel color, natural ingredients, etc etc" that I have read could contain casein.

However, over the past few weeks where I was headache free I did eat some of those things problem free...which is why I'm confused (and discouraged)

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Lisa    457

About a year ago I actually became a member here and was very active on the board, thinking I definitely had celiacs.

I got most of the tests you listed as well as a colonoscopy and biopsy.

On top of the that, on my own, I did a FULL gluten free diet for about free months (down to all new cooking utensils and shampoo) with ZERO positive results.

At that point I assumed it was safe to rule out gluten.

And like I said in the earlier post, the only long term relief from the headaches I've had in years was when I completely cut out dairy.

There are several food that can attribute to migraines. I would assume you have researched those...cheese is one and MSG. Maybe you have found your answer.

I apologize if I have over looked some of your statements.

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mommida    158

Usually with a reaction (intolerance) it is to the protein. The protein chain in dairy is casein. Maybe you notice the reaction to the amount of what you have ingested.

My daughter was starting to be reffered to a nuerologist for the possibility of abdominal migraines. You mentioned you had been to nuerologists, but was it ever discussed as a possiblity? (most testing needs to be negative and then the possiblity of abdominal migraines can be diagnosed off a checklist)

Are you keeping a very detailed food journal?

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Juliebove    93

For yesterday, I am sure. I checked every label. All I ate was oatmeal with water and sugar, a sandwich with turkey, lettuce and tomato on whole grain white with 100% natural potato chips, and then popcorn chicken and frozen french fries later in the day...checked he label and saw no dairy.

However, the day before, I had pasta with a SMALL amount of parmesan cheese. I guess there is a possibility it could be a 2 day delay...not sure

Most bread contains milk. I have a hard time finding any that does not.

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Juliebove    93

freihofer's whole grain white doesn't have any milk

Must be something local. We don't have that here.

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T.H.    404

Hmmmm...

Perhaps you have a true intolerance rather than an allergy? If that's the case, amount may be a factor in whether you get a migraine. From what I remember from our allergist was telling us, it takes a few days for dairy to get out of our systems. So while dairy one day may be fine, or tiny amounts of dairy cc might be okay, you add them up over a few days and get whammied.

So if you, say, ate the cheese the day before, like you did this time, and then got just a little bit of contamination in your processed food the next day, that might be just enough to push you over the edge. I know you mentioned not having any dairy ingredients in your food, but could there be traces from dairy cc due to processing, by any chance?

Like perhaps the dairy free bread might have been made on an equipment line or in a facility that does have dairy, so it might get just a little bit of contamination. That sort of thing. Not enough to usually give you a migraine, but maybe with the little bit of cheese the day before, it was enough to zap you, you know?

I can't think of a lot of dairy things that might cause headaches that you wouldn't be noticing with other issues as well. Although cheese mold (that's used to make the cheese) can cause problems with some folks, so it might be worth checking to see if it's any dairy or if it's just cheese.

An elimination diet journal that also records amounts that you are eating might be useful. That was helpful to me when I ended up having an intolerance that was amount based - it IS hard to figure out, definitely! Because you feel like you ate it find one day, and then got sick the next. But if you can track amounts, or types of processing of dairy, perhaps that might have some of the answer for you.

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zebaldwin    1

Hmmmm...

Perhaps you have a true intolerance rather than an allergy? If that's the case, amount may be a factor in whether you get a migraine. From what I remember from our allergist was telling us, it takes a few days for dairy to get out of our systems. So while dairy one day may be fine, or tiny amounts of dairy cc might be okay, you add them up over a few days and get whammied.

So if you, say, ate the cheese the day before, like you did this time, and then got just a little bit of contamination in your processed food the next day, that might be just enough to push you over the edge. I know you mentioned not having any dairy ingredients in your food, but could there be traces from dairy cc due to processing, by any chance?

Like perhaps the dairy free bread might have been made on an equipment line or in a facility that does have dairy, so it might get just a little bit of contamination. That sort of thing. Not enough to usually give you a migraine, but maybe with the little bit of cheese the day before, it was enough to zap you, you know?

I can't think of a lot of dairy things that might cause headaches that you wouldn't be noticing with other issues as well. Although cheese mold (that's used to make the cheese) can cause problems with some folks, so it might be worth checking to see if it's any dairy or if it's just cheese.

An elimination diet journal that also records amounts that you are eating might be useful. That was helpful to me when I ended up having an intolerance that was amount based - it IS hard to figure out, definitely! Because you feel like you ate it find one day, and then got sick the next. But if you can track amounts, or types of processing of dairy, perhaps that might have some of the answer for you.

Thanks Shauna! Ya...I'm still confused. I get a migraine usually without fail about 21 hours after eating dairy (mainly cheese)...yet some days where I didn't have cheese or anything dairy the day before I still get a migraine. So I am in the process of doing a daily, in depth food journal. (something I should have started years ago...but better late than never!)

Thanks for the response

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mushroom    1,205

This is taken from a post you made in May 2011:

When I first heard about what celiacs was and its symptoms I was so excited. I have been sick for so long, with nothing even close to an answer.

Quick recap: my main symptoms include some digestive problems (upset stomach every morning, after some meals, etc. Bad brain fog for the last 6 or 7 months, bad/nauseous headaches almost every day for at least the last 2 years, weakness in my arms and legs, get chills easily, etc. and some other smaller symptoms. I got the blood tests for celiacs (before I went on the diet), they were negative.

I have been 100% gluten free for about 3 months now, and cannot pinpoint any positive changes. About half of that time I was dairy and soy free as well.

The brain fog is just the same (if not worse), I still get my headaches, and my digestive problems are actually worse than when I started.

I did not keep a journal of symptoms or anything, but I have sat down recently and looked back on everything and cannot see any progression.

Is all this still true today? Absolutely no change? (I went back to check out dairy and soy-free periods :) ) Just interested if anything at all has changed?

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Pegleg84    50

Hey

While I don't get migraines (as far as I know. I'm afraid one of these days I'll get whammied), last year I had a lot of trouble with dizziness, nausea, sinus pressure, what felt like a sinus/inner ear problem. After a bunch of test that determined there was nothing wrong with my ear, I did some reading and decided to cut out dairy. So much better! Not perfect, but much better. I'm pretty sure it's an intolerance to casein, as I can't have goat or sheep's cheese either. I also cut out soy and that's helped as well.

If it is a casein intolerance that's triggering your migraines, then I can imagine that even if you're avoiding it, just like gluten, small amounts have a cumulative effect and are slowly doing damage though you don't feel it until a while later. Also, like gluten, it takes time for your system to flush it all out and heal.

I'd keep it up. Be extremely careful what you're eating, and see if it gets better. For me, cheese is the hardest thing to replace, but I've been drinking almond milk mostly, using Earth Balance instead of butter or margarine (which might still contain casein. check!), and found this pretty decent "Parma veg" stuff that's ground nuts and kale and such, but make a good parmesan substitute. I've tried a couple vegan cheeses, but it's just not the same.

I think you've found what's bothering you. Just give it more time to settle out.

Cheers

Peg

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