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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.

Been Told To Avoid Milk, Though I Have No Milk Allergy...
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16 posts in this topic

I recently tested positive for Celiac Disease (138.8/30) and was told I had a very high sensitivity to Gluten. However, I tested negative to milk.

I have recently been told by someone familiar with Celiac to avoid milk and go dairy free, even if I was tested negative (and I was). I was wondering why I would do this and if I should? Also, I have heard controversy over oats and Celiac disease.

For example, I used to love to eat Honey Nut Cheerios (and regular - yummmm :)) and now have Gluten-free cheerios but it contains oats. Is this considered okay or should I also avoid this?

Thanks for your help. I have to say that addressing what foods to eat/avoid has been challenging, but not impossible. But milk and oats concern me. If you can think of anything else, I'd appreciate it!

Hope everyone is finding answers and getting better.

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I never eliminated milk products. I cut back on cheese but don't drink milk. Avoiding dairy for the first few months is advised because the part of your intestines that digest milk is the part damaged by Celiac. It isn't about a milk "allergy" but about an inability to digest it (think lactose intolerance). If it isn't bothering you, you can eat it.

Celiac Disease is not an allergy, FYI.

Oats- Some Celiacs react to oats with the same autoimmune response as they react to wheat, rye and barley. It is recommended by Celiac experts that you don't eat them for 6 months - 2 years. Wait until you are completely healed and have the gluten-free diet under control. Then try gluten-free oats & see how you do with them.

Oats must be gluten-free oats. The oats in products like regular Cheerios are not gluten-free. If a cereal is labelled gluten-free and has oats, they should be the gluten-free oats. Regular oats often have a lot of "accidental" wheat in them due to growing, harvesting. processing, etc practices.

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I agree - celiac is not an allergy and is more than gluten sensitivity.

Many celiacs are also sensitive to milk (not allergic).

My understanding - gluten compromises the gut, affecting permeability of the walls of the intestinal tract and can therefore make the intestinal tract more sensitive to other things like milk, soy, etc....not allergic (no test will pick it up, it's a matter of trial & error with what you eat).

I live in a household of 5 and am the only gluten free one. I believe I occasionally get bits of gluten although I am very careful - my own pans and strainers, an island away from other counters where they keep their bread, my own condiments, etc. Milk & I do not get along ! I also avoid too much soy and processed foods (lots of additives) as they don't seem to agree with me. It's a pretty individual thing - as I said trial & error. What works for some doesn't work for others. I gave up on cereal - can't have milk and milk substitutes don't seem to work either.

Good luck !

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What Karen and NorthernElf said. And by the way, welcome to the board!! :)

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Thanks for the replies. Now I understand. Well, this is a shame because I really enjoy cereal. I have been eating milk and gluten free cereal recently, which I suppose I shouldn't do. Any recommendations for breakfast, besides eggs? Of course, I am going to eat eggs, but recently I've had too many because I am still trying to figure out what to eat and what not to eat. Also, being Gluten Free is expensive - it's just insane.

I guess I'll avoid Oats as well. Goodbye cereal. Let me know if you have any super (super!) easy breakfast ideas. Also, thanks for the warm welcome.

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You don't necessarily have to give up cereal for breakfast. General Mills has a number of Chex cereals that are gluten-free (obviously not Wheat Chex) and Kelloggs has come out with gluten-free Rice Krispies (the box is clearly marked gluten-free). They're available is most supermarkets as well as Wal-Mart.

I gave up dairy products for awhile when I first went gluten-free, however, I did buy Lactaid milk, which has the lactose removed.

Breakfast doesn't necessarily have to be breakfast-type foods...it can be leftovers from last night's dinner, for example.

You might want to check the "What's for Breakfast" topic for more ideas.

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Thanks for the replies. Now I understand. Well, this is a shame because I really enjoy cereal. I have been eating milk and gluten free cereal recently, which I suppose I shouldn't do. Any recommendations for breakfast, besides eggs? Of course, I am going to eat eggs, but recently I've had too many because I am still trying to figure out what to eat and what not to eat. Also, being Gluten Free is expensive - it's just insane.

I guess I'll avoid Oats as well. Goodbye cereal. Let me know if you have any super (super!) easy breakfast ideas. Also, thanks for the warm welcome.

You do not have to say goodbye to cereal! :) And for oats, just buy certified gluten-free oats. Bob's Red Mill, Glutenfreeda, etc. make them.

There are MANY gluten-free cereals to choose from.

For "milk", I use So Delicious Coconut Milk. Tastes GREAT.

As the others have explained, with celiac, the villi are blunted. The tips of the villi are where lactase is produced (which helps us digest lactose in dairy). Once healed, your ability to tolerate dairy should return.

Many of us give it up for the first few months just to help the gut heal.

This seems a bit complicated at first, but it gets easier. So that I do not repeat info others have heard many times, may I direct you to this thread? there are some meal ideas in there.

Best wishes and welcome!

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I never gave up milk and had no problem. If it bothers you, don't drink it; if it doesn't, don't worry.

richard

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I never gave up milk and had no problem. If it bothers you, don't drink it; if it doesn't, don't worry.

richard

Same goes for gluten-free cereals! I love my (gluten free) Rice or Corn Chex with Almond milk every morning! If they don't bother you, enjoy...

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There are also MANY brands of specialty gluten-free cereals. They are more expensive than traditional cereal, but they come in several different varieties. You can get them cheaper by buying them in bulk (usually 6 boxes at a time) from amazon once you know which kinds you like.

On the milk issue...I agree - if it isn't bothering you, don't get rid of it. The diet is difficult enough to navigate in the beginning. But if you still feel yucky in the gut you can try giving it up. Here are a couple tidbits about lactose though...

1) Aged cheeses and yogurt are very low in lactose, so if you do end up giving up dairy you may be able to keep those. As mentioned, it is a problem with the villi being damaged at the tips which is where the enzyme needed to break down lactose is found. Some people have a mild lactose intolerance until their gut heals. Others who have more damage may take longer to get back to being able to digest lactose.

2) If you do go lactose free for awhile, when you re-introduce it you need to go slowly. Your body has to be exposed to lactose to know to creat ethe lactase enzyme. Too often people go full bore ahead after being lactose free for a long time and do things like drink a big glass of milk. The body isn't ready yet and it reacts poorly (gas, bloating, the big D, etc.). But if you introduce it slowly you body can start producing lactase again and then you're good to go!

On oats, gluten-free oats can be a great way to get fiber into your diet. But if you've been gluten-free for awhile and getting low amounts of fiber, again, go slow. Your body needs to be able to adjust. If you down 3 big bowls of oatmeal out of the blue you're going to shock your system and end up with a belly ache.

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I never gave up milk and had no problem. If it bothers you, don't drink it; if it doesn't, don't worry.

richard

You can always count on Richard to give straightforward and good advice! I just like the way you communicate.....if it bothers you, don't eat it.

If it doesn't, don't worry! I couldn't agree more and this is from a Celiac who cannot drink milk and it's been 7 1/2 years gluten-free for me. :)

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You can always count on Richard to give straightforward and good advice! I just like the way you communicate.....if it bothers you, don't eat it.

If it doesn't, don't worry! I couldn't agree more and this is from a Celiac who cannot drink milk and it's been 7 1/2 years gluten-free for me. :)

I do not drink milk either. I think a big old glass of that would put me under. :lol:

YET, I can-- and do!!-- sometimes enjoy homemade ice cream, some sour cream and cheese.

Oh, boy, do I love cheese. But, it took me a while to get it back--- and now, I have pizza and sometimes, cheese and crackers.

Like most things with celiac, take it out, heal ...and then, see how it goes. Never say "never".

If I believed that, I'd "never" be where I am right now. Alive, healing and coming back from the "walking dead". ;)

Gluten-free oats killed my gut for awhile, too--and now, we're pals again. :)

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Thanks for all of the great replies. I've learned from recent experience that I definitely need to avoid milk. I had significant problems after drinking a glass - I thought milk was fine, of course, because Celiac.com recommended to drink it due to Vitamin D deficiency but all of your information helps out a ton.

I'll keep on avoiding. But I will be eating cereal as hand food :D

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I'll keep on avoiding. But I will be eating cereal as hand food :D

Maybe you missed the recommendations, but we offered that many of us use almond milk or coconut milk on our cereals. Tastes great --and provides calcium and protein.

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Thank you. I'll definitely look into it.

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I definitely notice that lactose makes me run to the bathroom, but I have also personally noticed other symptoms to non-lactose dairy, starting immediately with a dry-tongue eventually followed by feeling achy or like I'm getting a flu. Almond milk, soy milk and coconut milk are all very tasty alternatives. (Just double-check for gluten in whatever brands you can buy, there are a lot of them and a couple brands may contain it.) I have yet to find a good cheese alternative though :-p

"I recently tested positive for Celiac Disease (138.8/30) and was told I had a very high sensitivity to Gluten. However, I tested negative to milk."

Well, I don't know what your numbers represent but I'm pretty sure that just because you have an IgA or tTG levels consistent with celiac disease, they don't measure any sort of gluten sensititivity specifically. I mean, yeah, you have celiac disease because there's nothing else that they know of that causes those levels to be so high, but it's not like a regular allergy test where they prick you with allergens and see if there's a skin reaction.

So considering that, I find it a little confusing when they say that you tested negative for milk. Did they test you for a milk allergy at the same time? Did you get tested for a wheat or gluten allergy too (which is a different test than would be for celiac disease)?

Regular allergy tests involve a category of antibody, IgE, that isn't involved in celiac disease. And regular allergy tests are the only ones that I know of that test specific foods. It's possible that you have no milk allergy or even no lactose intolerance (if your intestines aren't too badly damaged yet) but still have, for example, an IgA reaction to dairy. There is at least 1 paper I've read that shows that in vitro (so in the lab, not in a real person), showing that some celiac tissue samples will elicit an IgA reaction to some dairy proteins or caseins (I forget which one it was.) And I don't know about where you live, but I asked my GI about it and there's no way I can figure out if my IgA levels could possibly be dairy related using some sort of test short of participating in research or something myself.

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