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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.

Dairy And Ncgi
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9 posts in this topic

Hi -

Was DX about a month ago as esophagitis, gastritis, and was told I did not have celiac. Of course, knowing myself and my reactions to gluten, I went gluten free almost immediately following the endoscopy. I have been doing well since then most of the time.

Because I have read on here about avoiding dairy if you are Celiac or NCGI, I have done my best to do so. But for me it is hard because my reactions are very varied. For example, I can eat sugar free tapioca with no problem even though it is milk-based and can eat small quantities of butter as well. However, sour cream leaves me down for the count! I have been trying to eat Fage as I did before my DX to varied results. I ate a blueberry 0% fage and felt some minor cramping and a little gassy, but today, I had a strawberry fage and I have been in bed since 1pm with horrible abdominal discomfort and D. My question is two fold: 1) what is it about dairy that doctors will tell you to avoid it when you have gut issues? 2) why am I having reactions to some forms of dairy and not others? I think that's what is keeping me from avoiding all forms of dairy at this point...can anyone help?

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Generally speaking, according to the definitions of celiac disease (villous atrophy) and NCGI (no intestinal damage) if you are NCGI you 'should' be able to digest lactose (milk sugars). Those with villous atrophy usually cannot because the enzyme lactase is made at the tips of the villi which atrophy in celiac, so therefore it is absent until healing takes place. This is why they say that celiacs can normally 'resume dairy' once they are healed, but they really mean 'can digest lactose'. Some people also have problems with the protein called casein in milk which is digested by different enzymes, so it is often just recommended that you avoid all dairy at first and then try adding it back in six months. If you cannot handle casein you normally do not regain this ability. And for some, dairy is difficult to digest at best of times and especially after developing a sensitivity to gluten.

So where does this leave you? Let me give you my own example. I knew I was lactose intolerant before I knew I was gluten intolerant. I did not have any problems with yogurt, cheese, sour cream, butter, but I could not have milk, ice cream, cream or frozen yogurt, all high in lactose. Once I healed from the gluten onslaught (and I was never tested so have no diagnosis) I am now again able to eat these things as well.

The things you would be most likely able to digest if you were merely (perhaps temporarily) lactose intolerant would be butter and hard cheese like cheddar. Those would be the first to test yourself on. If those were okay, you could then try yogurt, although you say you are having trouble with Fage (I am not familiar with the product) and sour cream puts you down, so you know not to try that. Some grated parmesan on pasta would be worth trying, and Lactaid milk, or Lactaid tablets with regular milk or other lactose containing products, both of which contain lactase enzymes.

I hope this helps clarify it for you. :)

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Thanks, mushroom! Appreciate the reply and the explanation. It does make sense...my doctor recommended today that I stay off dairy for awhile. Like an idiot today, I tried my tapioca which I previously had been okay with and 5 minutes later, I got sick. Well, I guess if I needed proof, I got it - in spades!

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There are plenty of substitute milks out there to use - almond, hemp, rice (other than Rice Dream which is filtered with barley and many have problems with), even coconut; I personally do not recommend soy milk, but that is your choice :)

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Oh trust me, not about to touch soy milk. I was drinking flax milk for awhile which I really liked. I think I need to find some non-dairy substitutes for pudding because after what I have heard about lactaid pills, I don't really want to try them...besides I have enough meds and vitamins already, I really don't need to add another!

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... I think I need to find some non-dairy substitutes for pudding ...

I need mah puddin'! I need my puddin' now! :D

Seems like I saw a post about making chocolate pudding with avocados and chocolate powder a while back. And maybe one about making pudding using bananas or was it ice cream made with bananas? Probably there is something in the recipe section for it.

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I need mah puddin'! I need my puddin' now! :D

Seems like I saw a post about making chocolate pudding with avocados and chocolate powder a while back. And maybe one about making pudding using bananas or was it ice cream made with bananas? Probably there is something in the recipe section for it.

Hehe! :)

And ooh a pudding with bananas - I will have to check out that section! Thanks!

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Even after all this time, I only eat plain yogurt, never pre-flavored. If I want anything in it, I add it myself, from single ingredients I already know I do not react to. And I make sure it is as plain as plain can be, without added milk solids like dry milk or anything else, other than the lactobacillus cultures, because who knows what is in that stuff, really, re its true gluten status and whether or not all the lactose was processed out by aging. I don't have any trouble with the plain Fage, and believe me, I've reacted to a lot of different brands of allegedly "gluten free" yogurts. <_< I see my local store runs out of plain Fage often and is trying to sell the smaller, more expensive, flavored Fages, but I will just drive further to get the kind that I need. Same with sour cream, it's difficult to find a sour cream these days that is made from just "cream" and cultures. There are thickening agents which may not agree with your current gut status. You may have to go organic on this type of item to find one not loaded with additives. Try using some organic cultured butter, that has made a big difference for me in terms of being able to tolerate butter, instead of always having to use olive oil. I think part of these reactions are to an increased sensitivity with our damaged, leaky guts to the chemicals the regular cows are exposed to, then pass along in their milk. Since the last decade with the ongoing problems with the price supports for dairy, they've really pushed these cows to produce a lot more milk, and it stresses them. :(

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Thanks for the advice regarding the yogurt...I don't think I will try it quite yet, but when things start to heal, I will give the plain Fage a try...although the taste kind of scares me...maybe as you said, I'll add something I know I'm okay with to mask the taste...or just find something else.

I actually had a sweet potato yesterday with butter and while I had some mild discomfort, there was no running to the bathroom lime episodes for me, so I consider that a win, which is a good thing because I'm not sure what I would end up using as an alternative to butter!

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