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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.

How Did You Come To Realize You Had A Dairy Issue?
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14 posts in this topic

My dh and I are wondering if we should cut out dairy and are wondering what led to your decision if you have cut it out. Please explain your symptoms that led to your decision. Thanks so much. :)

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Stuffy nose. Ear and sinus infections. The big D.

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For me it was the bloated belly, all i could wear was sweat paints or a bathing suit. (elastic wastband) It was very painful an unsightly. GFINDC yep ole hosehead recommended i try an give up dairy. I did give up dairy an it went completly away!!! Now even a trace amount of dairy an it comes back within 5-10 mins. extremly painful for 3-4 hours just with a trace amount of dairy. If you think dairy might be giving you a problem try an give it up for a month, when you try an reintroduce it i recommend only use a teaspoon an see what happens.

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I've had it my entire life, but I know when I consume milk or ice cream that there will be a lot of payback in the form of diarrhea, stomach pain, bloating and internal hemorrhoids. Sometimes even a bit of oily stool. It's rough, it hurts and it's never worth it.

I switched to Lactaid milk and I take a dietary enzyme (lactase) - 2 pills of 9,000 units each - when eating cheese or other dairy. I drink the milk nightly (well, it's Lactaid and Hershey's syrup) and that helps because the lactose is removed. The cheeses seem to be fine with the enzyme.

Lactose intolerance is fine with an enzyme for many with intolerance like myself. They're cheap as well. Target brand Up & Up pack of 12 was less than $3. Worthy investment for lactose intolerance.

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Dairy was the toughest for me to figure out. I removed it once shortly after gluten and did not notice a difference so added it back in.

Much later I removed it along with many other foods during a strict elimination diet for several months. When I trialed each dairy item separately I was able to tolerate butter, some cheese and cooking with milk/cream. Was not able to tolerate yogurt at all. When I completed the elimination and added butter, cheese and milk back into my cooking on a regular basis I became consistently bloated -- removed those items and bloating went away.

I remain hopeful that I will get dairy back once my stubborn digestive system heals.

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..GFINDC yep ole hosehead recommended i try an give up dairy...

:D Hah Hah Dave, you caught me! :) We hoseheads have to stick together I guess. :)

My lactose intolerance started after a virus went around. After i got over the virus I got bloated and D every time I ate dairy. Stupid virus hit most everyone in the office but I don't remember anyone else having that happen. That was 7 years before gluten-free.

I did use lactase for quite a while and it helped. Lactase is the enzyme that breaks down dairy sugar in the gut. After going gluten-free I thot things would improve and they did. But I still had symptoms and finally cut diary out completely. Cow dairy has a protein called casein in it and lactase doesn't do anything for that. So if you are intolerant to casein you just have to stop eating it. I've tried it a few times the past several years. Things start not too bad but get worse every day. Gut pain, C, D etc. I start getting bloody stool after 3 days or so and wise up. So I don't think dairy likes me much.

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My problems with dairy started about 10 years before I stopped eating dairy. My arms developed itchy red bumps. Then more. Then it started on my tummy. It kept getting worse, not better, so I finally realized it was something I was consuming daily. The bit of milk in my morning cappuccino was the culprit. For a while I could still tolerate ice cream but that soon stopped. I went off dairy for years. Then I started with little bits of dairy (meals at others' houses, for example) and took lactaid. That seemed to help.

Once becoming gluten free I started eating more dairy, mostly in the form of yogurt and with lactaid, as I thought it would help heal my guts. The itchy rash came back. So I'm back to dairy free, though if there's absolutely nothing else to eat that is the one from my list that I can tolerate a bit of, as in, better dairy than the 3 day misery called gluten, or the migraine headache called corn, of the headache stomach ache called soy. The stomach ache from nightshades isn't so bad either, but probably not conducive to healing.

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It became obvious that dairy was bothering me a few months after cutting out gluten. Within about 15 minutes after ingesting dairy, my stomach began to cramp and I became very bloated. Then the diarrhea began. I went off lactose for a few months which helped and re-introduced it. At first it was fine for several months but the last three months or so whenever I ingest dairy the same thing happens nearly immediately. So, now I eat very little cheese (unless it will be worth it to me and then I take Lactaid, i.e. when in Paris recently) and drink/cook with Lactaid milk. I really hoped this would not happen again but it is. :(

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I was so sick for awhile that I cut gluten and dairy at the same time out of desperation. So when i added dairy back in (for a split second) I realized that dairy was actually what was giving me the severe diarrhea. I think gluten was doing a lot of things to my body, but the dairy was what chained me to the bathroom. My daughter (child) also gets those itchy rashy bumps from dairy. I don't seem to get that.

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A co-worker suggested it when I would run to the restroom half an hour after eating frozen yogurt. Long before gluten was realized as a problem, I might add.

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I cut out dairy last year after struggling with sinus problems and dizziness. After all the inner-ear tests came back clear and the doctor looked at me like I was nuts, I read that salt and dairy can contribute to sinus problems, so I cut back on salt, then cut out milk (well, milk, then ice cream, then yogurt, then cheese ---i miss cheeeeese!--- and finally anything with dairy in it).

May I note that there's a difference between lactose intolerance, which is a reaction to the sugars in cow's milk, and casein intolerance, which is a problem with the milk protein. Casein is similar in structure to gluten, so one theory is that for people with Celiac, our bodies can think casein is gluten and have a similar reaction to it. Also, unlike lactose that can be removed, casein is in ALL milk products, and in smaller amounts in goat and sheeps milk as well.

i'd say at first you should try lactose free and/or lactose digesting aids and see if that helps. If not, it might be casein and you're going to have to cut dairy completely.

I'm still clinging to hope that I'll be able to go back to eating some cheese eventually. Butter and ice cream I have good substitutes for, but cheese cannot be replaced.

Good luck figuring it out!

Peg

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I cut out dairy last year after struggling with sinus problems and dizziness. After all the inner-ear tests came back clear and the doctor looked at me like I was nuts, I read that salt and dairy can contribute to sinus problems, so I cut back on salt, then cut out milk (well, milk, then ice cream, then yogurt, then cheese ---i miss cheeeeese!--- and finally anything with dairy in it).

May I note that there's a difference between lactose intolerance, which is a reaction to the sugars in cow's milk, and casein intolerance, which is a problem with the milk protein. Casein is similar in structure to gluten, so one theory is that for people with Celiac, our bodies can think casein is gluten and have a similar reaction to it. Also, unlike lactose that can be removed, casein is in ALL milk products, and in smaller amounts in goat and sheeps milk as well.

i'd say at first you should try lactose free and/or lactose digesting aids and see if that helps. If not, it might be casein and you're going to have to cut dairy completely.

I'm still clinging to hope that I'll be able to go back to eating some cheese eventually. Butter and ice cream I have good substitutes for, but cheese cannot be replaced.

Good luck figuring it out!

Peg

Have you tried Daiya Cheese? I can't eat dairy or soy. Daiya is gluten, dairy, soy free cheese and as good as any regular dairy cheese I've eaten. BTW, I've been dairy free (after dx of IgA mediated casein allergy) since 2004. I've found good replacements for all my former dairy favorites (yogurt, cheese, milk, ice cream, margarine, etc.) I know I can't ever return to eating dairy w/o bad reactions, because I had a few accidental consumption incidents over the past 8 years. Each one was more severe and more lengthy recovery time. If you're doing well w/o dairy, I would not advise returning to eating dairy, unless you really enjoy your reaction symptoms.

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I am one of the rare folks who was born with lactose intolerance -- couldn't even tolerate mother's milk! Parents went crazy until they figured out I could only handle goat's milk. (I was 6 weeks preemie, apparently that goes with being lactose intolerant).

Later it went away, but in recent years it has come to rear its ugly head again (I'm 55). Symptoms are extreme gas and bloating very soon after drinking milk or eating ice cream, most yogurts and some cheeses.

Hard cheeses like cheddar are fine, thank goodness. I love my cheese.

I swear by chewable Lactaid tablets (2 at a time) but I still have a hard time remembering to take them!

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Burdee, yep, I've had Daiya. It's ok but just not the same. I've used it for pizza and mac-and-cheese(like substance), but mostly it's gone untouched in my fridge.

However, as an experiement, (and also to make sure I won't keel over in the UK next week, where gluten-free is easy, but dairy free is pointless) I had a few small pieces of hard, aged cheese and, aside from a rather mild, temporary headache, I was fine!! No problems later either! YAAY! Of course, I tried a bite of soft cheese and immediately my body said No. No way. So: hard and old, ok for a little bit. No binging. Not often. But now I know it won't kill me. (maybe it is lactose and not casein after all... or maybe all the digestive enzymes and general caution has helped. Either way, it's promising)

Of course, you're going to have to figure out what/how much you're still ok with. I'd say cut it all out for now, and try it again in at least 6 months.

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