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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.

Lactose Intolerant Too?
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16 posts in this topic

Well, I have a few stomach issues besides celiac. Once in awhile I get stomach upset but way different than gluten problems. Just a little excess gas here and there and stomach upset once after certain meals. Well I decided to do a test and ate alot of nachos to see and sure enough it bothered me badly! I still have a yucky stomach ache this morning from last night.

Is this what lactose intolerance feels like? Does it cause damage at all or is it just unpleasant? Im wondering if I can still eat dairy once in awhile without causing damage if I can tolerate the side effects.

Thanks

Autumn :)

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Autumn, you may want to be tested for a casein intolerance as that can cause villous atrophy just like Celiac. However, many Celiacs are lactose intolerant in the beginning. If it is just a lactose intolerance, it may get better. Sorry I couldn't be of more help.

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Hi Autumn,

The way I understand it is, when the villi are damaged by gluten, they are unable (in some cases) to handle lactose. I believe lactose is absorbed by the tips of the villi, and until those are healed, lactose will be a problem.

Some people with this problem will find that after 6 months or so, they can tolerate lactose again.

Lactose does not damage the villi--even when you get symptoms from it. My son, who is not Celiac, is lactose intolerant and uses Lactaid when he consumes dairy products.

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Lactose intolerance is due to the body not producing enough lactase enzyme to break down the lactose. It's often associated with villous atrophy because lactase is normally produced in the small intestine...when the villi are damaged, lactase production is affected.

Reactions to lactose can vary from person to person. The severity of my reactions is based on the amount of lactose in food. Ice cream, for example, will produce severe stomach cramps and diarrhea within minutes of consumption (I think that the added sugar in the ice cream compounds the problem.) Drinking milk or exposure to lactose in a prepackaged product may show a more delayed reaction with cramping over several hours along with an intermittent need to void, but being unable to. I liken it to a brick moving through my intenstines: prolonged pain finally ending in diarrhea hours later.

Some products, though, I am able to tolerate better: hard cheeses & yogurt are okay for me. To be on the safe side, I always carry Lactaid with me. If I don't have any, I don't consume milk products.

Michelle

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Thanks so much :) Im not sure which one it would be lactose or casein but my side effects after the initial diarrhea and cramping is constipation all day today, just like michelle listed. I feel like I have to go but nothing happens.

I was starving yesterday, I had been on the go and had not ate anything but 8 grapes for about 7 hours, my daughter ate while we were out but it was glutened stuff so I didnt eat. I came home and I was ready to just stuff myself. I had a huge migraine from not eating all day. I made a half stick of velveeta cheese :blink: and melted it and covered it in gluten free tortilla chips. Plus I have been curious to see if I do have a problem. I didnt eat it all but darn near close, I pigged out and paid for it.

I should get tested but have not yet for intolerances. Maybe I'll do another test when Im up to it to see if its lactose. I'll take lactaid and eat some ice cream and see if I get another reaction. Im having other medical problems (vision problems) and unfortunately dont have the money for more testing for me.

You all have helped me alot :)

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It's also possible to buy pure lactose from a beermaking supply store for not very much money if you've got one locally. That would probably test the lactose end of it for you.

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Thanks so much :) Im not sure which one it would be lactose or casein but my side effects after the initial diarrhea and cramping is constipation all day today, just like michelle listed. I feel like I have to go but nothing happens.

Just to clarify, it's not constipation for me (although that's my main "IBS" symptom unrelated to lactose intolerance). When I am reacting to lactose, I get horrible gut-wrenching cramps and the sensation that I suddenly need to run to the bathroom, but the minute I sit on the toilet, the sensation passes. When I lie down again, I suddenly have to go...again the sensation passes. When it finally does happen, it's diarrhea. Once the diarrhea passes (takes a few bathroom trips) then my lactose "attack" is over. I haven't noticed any constipation afterward...at least not related to lactose intolerance. :)

I was starving yesterday, I had been on the go and had not ate anything but 8 grapes for about 7 hours, my daughter ate while we were out but it was glutened stuff so I didnt eat. I came home and I was ready to just stuff myself. I had a huge migraine from not eating all day. I made a half stick of velveeta cheese :blink: and melted it and covered it in gluten free tortilla chips. Plus I have been curious to see if I do have a problem. I didnt eat it all but darn near close, I pigged out and paid for it.

I should get tested but have not yet for intolerances. Maybe I'll do another test when Im up to it to see if its lactose. I'll take lactaid and eat some ice cream and see if I get another reaction. Im having other medical problems (vision problems) and unfortunately dont have the money for more testing for me.

You all have helped me alot :)

I hope that you find relief with the Lactaid. Lactose intolerance can be "tolerable" with it, certainly easier to cope with than casein intolerance.

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I have casein intolerance and get symptoms much like a glutening when I get casein. Since casein can cause damage, and lactose "just" discomfort, I woud test to see which you have. You can either do as someone mentioned and try pure lactose. Or you can take lactaid next time you have lactose. If you still get sick with the lactaid, you can assume it's the casein. Of course, you'd want to be sure that everthing else you ate that day was pure!

Casein intolerance is permanent. Lactose intolerance can go away as your villi heal.

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Thanks so much :)

Sorry I havent been on in a week. My husband's grandmother passed away and had family out of state here with us. My daughter had surgery and is recovering from it. Its been a busy week.

Autumn

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Hey Autumn,

I too am lactose intolerant and I absolutely love cheese. I was afraid I might have been casein intolerant but after doing some talking with a nutritionist I found out that if I was casein intolerant I would not be able to tolerate any sort of milk product. I decided to do an elimination diet and cut out all of the "unsafe" lactose containing dairy and eat the allowed cheeses such as cheddar, swiss, montarey, muenster, guoda, and a few others (i love chedder so that's really all i eat). And I am absolutely fine with them!! While this may not be the case for you it might be worth trying. I had iced cream on saturday night and had horrible stomach issues, including indigestion all day on Sunday. Everyone will react differently so its hard to compare symptoms. As some also have suggested you may want to get tested for an intolerance to casein. I was thinking about that in the begining also however it is expensive and if you can figure it out on your own it might be worth the money saved. As you may also know many of us can have other food intolerances. Maybe it was the corn in the nachos or soy? Corn doesn't always agree with me and I cannot tolerate soy at all. Sticking to whole foods (like fruits, veggies, and protein) while slowing experimenting with other gluten-free foods and added them back in have helped me to figure out what I can and cannot eat. When I do eat non safe dairy I always get sick. I am hoping this is temporary since I love yogurt and cottage cheese. I have also heard that cold dairy is the worst for those who are lactose intolerant (I am okay with drinking a cappuccino because the milk is heated and steamed). I hope you feel better soon!

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Hey Autumn,

I too am lactose intolerant and I absolutely love cheese. I was afraid I might have been casein intolerant but after doing some talking with a nutritionist I found out that if I was casein intolerant I would not be able to tolerate any sort of milk product. I decided to do an elimination diet and cut out all of the "unsafe" lactose containing dairy and eat the allowed cheeses such as cheddar, swiss, montarey, muenster, guoda, and a few others (i love chedder so that's really all i eat). And I am absolutely fine with them!! While this may not be the case for you it might be worth trying. I had iced cream on saturday night and had horrible stomach issues, including indigestion all day on Sunday. Everyone will react differently so its hard to compare symptoms. As some also have suggested you may want to get tested for an intolerance to casein. I was thinking about that in the begining also however it is expensive and if you can figure it out on your own it might be worth the money saved. As you may also know many of us can have other food intolerances. Maybe it was the corn in the nachos or soy? Corn doesn't always agree with me and I cannot tolerate soy at all. Sticking to whole foods (like fruits, veggies, and protein) while slowing experimenting with other gluten-free foods and added them back in have helped me to figure out what I can and cannot eat. When I do eat non safe dairy I always get sick. I am hoping this is temporary since I love yogurt and cottage cheese. I have also heard that cold dairy is the worst for those who are lactose intolerant (I am okay with drinking a cappuccino because the milk is heated and steamed). I hope you feel better soon!

Marissa, have you tried yogurt? It is supposed to have similar or lower lactose levels than hard cheeses, because the bacteria consumes the lactose. I have a horrible time with milk (including steamed milk!) and ice cream, but can tolerate yogurt with no problems at all.

Michelle

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thanks :)

Well I do believe it is just lactose intolerance. Because if I have yogurt I have no problems and cheddar cheese on my salad doesn't bother me either. I'll do a more thorough test at home to see. I just sent away to get tested by enterolab for me and my daughter so funds are really tight. I didnt have the extra money but put it on the trustworthy visa for the gene and antibody for both of us.

I appreciate greatly all the help :)

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Marissa, have you tried yogurt? It is supposed to have similar or lower lactose levels than hard cheeses, because the bacteria consumes the lactose. I have a horrible time with milk (including steamed milk!) and ice cream, but can tolerate yogurt with no problems at all.

Michelle

really? thats very exciting. im starting to get sick of my boring breakfasts. do you have a particular favorite yogurt? i hear most of the flavored ones contain gluten.

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Yoplait gogurt frozen kind are gluten free. Yoplait yogurts I was told are all gluten free unless they have granola in them. They are one of the companies that lists the ingredients and doesn't hide them. Sam's club carries both of them at a good price.

marissa- regarding the corn, it is also a possibility. I had problems with corn when I was younger. I hope its not though, corn is in everything processed.

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Oh no! :angry:

Marissa you were onto something. I just had corn chips only and it only took about 20 minutes to verify. Ah well, its just verifying for me to stick to paleo diet. I'll do testing on it in six months when my bum can take it :blink:

Thanks everyone again :)

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really? thats very exciting. im starting to get sick of my boring breakfasts. do you have a particular favorite yogurt? i hear most of the flavored ones contain gluten.

I don't have a particular favourite, and am not gluten-free yet (have to wait until after my gastroscopy in November) so I can't recommend a particular brand...though, as Autumn mentioned, Yoplait is supposed to be a good brand for gluten free diets.

Michelle

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