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I've been lactose intolerant since I was little, and I started taking lactaid pills or generic brand alternatives at age 18. I always did really well with them. Now I feel icky when I eat a lot of dairy. It's like a gluten reaction, but milder. I get pains all over my stomach, and bloating, and my head feels all blah, even when I take enough lactaid or equate dairy digestive enzyme pills. (And I checked to make sure the pills were gluten free.)

I've been trying to do some research, but I'm a little confused. I know a lot of people with gluten issues also have dairy issues, including my mom.
1. Is it because leaky gut just causes all kinds of chaos at once? 
2. Is it something lactaid pills can't help? Because I only found articles about dairy allergy vs. lactose intolerance, and it doesn't seem like a dairy allergy at all, so one would think lactaid pills would fix the problem, but they're not. 
3. Is it because it has to do with what the cows eat? If I had dairy or beef from a grass fed cow, would I feel better than if I had dairy or beef from a grain-fed cow? And If dairy is only a problem because it has gluten in it from what the animal eats, then wouldn't certified gluten free foods with a symbol still be safe because they were tested? (I felt icky after a Freschetta gluten free pizza, which is certified. So if dairy is only an issue because it's glutened, then that would've been picked up when the product was being tested, right?)

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Some folks have an issue with casien (milk protein) rather than lactose (milk sugar).  Lactaid replaces an enzyme that the celiac damaged villi can't produce until we have healed but if your issue is milk protein then lactaid wouldn't help.

You may want to drop dairy, even the stuff that says lactose free, for while and see if it helps then when you have fully healed add dairy back in to see if you then tolerate it.

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I have had issues with lactose and whey for over 10 years and nothing helps. Casien does not bother me oddly, came up allergic to whey, and lactose has made me feel sick and throw up. Just changed over to nut and seed milks, found cashew milk to be really creamy along with certain brands of almond milk, and good karma flax milk. 

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Yep, lactase doesn't fix every problem.  Lactase can help with digesting diary sugar, but not dairy protein.  IF you take a break from all dairy for a few months (maybe 6 months) it may give your immune system a chance to relax a bit and kind of stop the dairy reaction.  Then you may be able to eat it again.  But that doesn't work for everyone.   There are alternative dairy substitute products available as Ennis said.  I like Daiya cheese sub because it is also soy free.  Soy causes reactions in a lot of people and is one of the top 8 allergens in the USA.  So I avoid it except for soy lecithin, which doesn't bother me.  So I suggest avoiding the dairy subs if they have soy protein also.

Edited by GFinDC

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Thanks for the replies!

I'm getting a little scared, to be honest... I've avoided dairy for the last two days and now I feel really weak and tired and sore, and like I'll get dizzy if I try to go about my business. And I have veeeerrrry slight chest pain. Like if I wasn't listening to my body right now I wouldn't notice it. It could partially be because I didn't sleep well last night (but that's pet-related, not health-related). 

I'm confused because I gave up gluten 7 months ago and it seems like I'm only getting new symptoms instead of healing. Plus, I'm 5'3", and last spring when I gave up gluten I weighed 112 lbs. Now I weigh 94.5 lbs. I feel like I'm just skin and bones, and I only ever feel hungry and faint, or bloated and dazed like what I ate was wrong. 

A lot of the stomach aches and headaches I had before giving up gluten are gone, except for occasional cc glutenings. Is that why I'm still having issues? Am I only having dairy issues because my intestines are still damaged?

 And if I do give up dairy for 6 months, will I really be able to reintroduce it? My mom told me I'd be able to reintroduce gluten, but that's been a lie. The longer I go without it, the worse my reactions to trace amounts are. And other people have said the same. Is giving up dairy the same kind of life-long commitment giving up gluten is? And do I have to be just as careful about cross contamination with dairy as with gluten? 

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1 hour ago, DrummerGirl231 said:

Thanks for the replies!

I'm getting a little scared, to be honest... I've avoided dairy for the last two days and now I feel really weak and tired and sore, and like I'll get dizzy if I try to go about my business. And I have veeeerrrry slight chest pain. Like if I wasn't listening to my body right now I wouldn't notice it. It could partially be because I didn't sleep well last night (but that's pet-related, not health-related). 

I'm confused because I gave up gluten 7 months ago and it seems like I'm only getting new symptoms instead of healing. Plus, I'm 5'3", and last spring when I gave up gluten I weighed 112 lbs. Now I weigh 94.5 lbs. I feel like I'm just skin and bones, and I only ever feel hungry and faint, or bloated and dazed like what I ate was wrong. 

A lot of the stomach aches and headaches I had before giving up gluten are gone, except for occasional cc glutenings. Is that why I'm still having issues? Am I only having dairy issues because my intestines are still damaged?

 And if I do give up dairy for 6 months, will I really be able to reintroduce it? My mom told me I'd be able to reintroduce gluten, but that's been a lie. The longer I go without it, the worse my reactions to trace amounts are. And other people have said the same. Is giving up dairy the same kind of life-long commitment giving up gluten is? And do I have to be just as careful about cross contamination with dairy as with gluten? 

No one can say if you will be able to successfully reintroduce dairy. Many of us can but there are some that can't.

That is a lot of weight for you to have lost. Considering that you are still having a lot of problems are you talking to your doctor about them?  It would be a good idea to make sure you don't have something going on in addition to the celiac. Your GI may want to redo your celiac tests and the endo to see how you are healing.

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11 minutes ago, ravenwoodglass said:

No one can say if you will be able to successfully reintroduce dairy. Many of us can but there are some that can't.

That is a lot of weight for you to have lost. Considering that you are still having a lot of problems are you talking to your doctor about them?  It would be a good idea to make sure you don't have something going on in addition to the celiac. Your GI may want to redo your celiac tests and the endo to see how you are healing.

I actually haven't been tested for Celiac yet. 
I know gluten messes me up a lot, so I joined the forum to get answers from people who know about living gluten-free better than anyone, but I don't know if I have Celiac or non-Celiac gluten sensitivity. 
I was going to the doctor all summer to try and stomp out Gastritis. Only took 3 months of antacids before she realized that wasn't the way to go. She put me on a medicine normally prescribed to people with yeast infections and for whatever reason that seemed to fix my stomach. She dismissed the idea of me having Celiac disease because my symptoms didn't seem severe enough, but agreed I should stay away from gluten. 
I guess since I'm home for Christmas vacation now would be the time to go to a doctor. I can only go to Urgent Care while at school. I'm just terrified because of all the tests I went through when I was eight and nine that got me my IBS diagnosis. Blood tests, an upper GI endoscopy, a barium x-ray, and a colonoscopy... and all they gave me was a catch-all diagnosis.
And I'm worried going back to the doctor will all be for nothing because it sounds like these Celiac tests give more false negatives than positives. And then there's the biopsy thing, and having to fast for a day before procedures which I have no idea how I'm going to do now because I'm in excruciating pain if I don't eat for 5 or 6 hours. 

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The doctor wouldn't be able to test for celiac because you are already gluten free. You would need to do a gluten challenge before testing.  They would be able to check you for other problems though.

When you are at school are you eating in a school cafe or can you cook for yourself?  Some schools and restaurants have a good handle on gluten free but many don't.  If you are getting CC'd a lot that would keep you from healing.

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15 minutes ago, ravenwoodglass said:

The doctor wouldn't be able to test for celiac because you are already gluten free. You would need to do a gluten challenge before testing.  They would be able to check you for other problems though.

When you are at school are you eating in a school cafe or can you cook for yourself?  Some schools and restaurants have a good handle on gluten free but many don't.  If you are getting CC'd a lot that would keep you from healing.

Oh gosh... a gluten challenge? That doesn't sound like a fun thing.
If I still feel bad though, and get glutened occasionally, isn't that enough for a test? Do I really have to ingest gluten deliberately? 

At school I eat in the cafe. It's a 4 star restaurant and they try to be really careful about gluten. They make all their sauces gluten free and label things with a G when they're gluten free. I was also introduced to some of the chefs by the manager and they know when they see me to change their gloves and warn me about anything that contains gluten. They also have their daily menu up on their website so I can check and see what I want before I even get there and read the ingredients. 

I didn't get to meet to all of the chefs though, so sometimes there are a few who are still careless. A new guy was reaching into all the dishes and using his gloved hand to dish up gluten things, then gluten free things, so when I got to the front of the line I was sweating because I knew he already ruined everything. I emailed the manager and he talked to him. Another time a chef at the omelet station only wiped a pan with a towel really quick and rinsed off the silicone spatula instead of using the designated gluten-free pan and getting a new spatula. So for the most part, I do really well at school. It's easy to avoid dairy there, too, if I want. But every now and then, someone does something they know they shouldn't.

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The gluten challenge is 2 weeks for the endoscopy and 12 weeks for blood antibody tests per U of Chicago celiac center.  There's not much point doing the testing if you can't do the challenge period.  It would probably be a waste of money and wouldn't tell you anything definite.

If you are having different symptoms after giving up dairy for a couple days, that could mean dairy is causing you a problem.  Any change of symptoms when giving up a food is an indicator something is going on because of that food.

Whenever you ingest gluten the immune system reaction is kicked off and may last for weeks or months,  So staying completely gluten-free all the time has to be the goal if you want to give your gut a chance to heal.  The gluten-free diet is not like a weight loss diet, you can't cheat/get glutened and get away with out issues.  The gluten-free diet is a medical diet.  I am not saying you are cheating on purpose, but getting glutened even by accident has the same effect on the immune system reaction.

The dairy issue is variable and we can't say for sure what your dairy issue is.  If it's lactose intolerance it may resolve after being gluten-free a while.  If it is casein intolerance that is more like an allergy and won't easily resolve.

You can do a simple enough test on yourself.  Eat hard cheese like cheddar and see if you have a bad reaction.  Hard cheese has little lactose in it so the problem would be casein.

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1 hour ago, GFinDC said:

The gluten challenge is 2 weeks for the endoscopy and 12 weeks for blood antibody tests per U of Chicago celiac center.  There's not much point doing the testing if you can't do the challenge period.  It would probably be a waste of money and wouldn't tell you anything definite.

If you are having different symptoms after giving up dairy for a couple days, that could mean dairy is causing you a problem.  Any change of symptoms when giving up a food is an indicator something is going on because of that food.

Whenever you ingest gluten the immune system reaction is kicked off and may last for weeks or months,  So staying completely gluten-free all the time has to be the goal if you want to give your gut a chance to heal.  The gluten-free diet is not like a weight loss diet, you can't cheat/get glutened and get away with out issues.  The gluten-free diet is a medical diet.  I am not saying you are cheating on purpose, but getting glutened even by accident has the same effect on the immune system reaction.

The dairy issue is variable and we can't say for sure what your dairy issue is.  If it's lactose intolerance it may resolve after being gluten-free a while.  If it is casein intolerance that is more like an allergy and won't easily resolve.

You can do a simple enough test on yourself.  Eat hard cheese like cheddar and see if you have a bad reaction.  Hard cheese has little lactose in it so the problem would be casein.

This is getting confusing... people on here say you need a diagnosis if you want anyone to take you seriously, and that you should never cheat on a gluten free diet, but people also recommend I poison myself for weeks just to get a diagnosis? I have to nearly kill myself just to get help from a doctor and get people to stop rolling their eyes and scoffing at me? 

A change in symptoms from giving up a food could also mean that I'm not eating enough because I have no idea what to eat now. I ate a big bowl of peas earlier and then made some gluten free and dairy free spaghetti and that seemed to help with my weakness. I think the fact that the other symptoms I had the other day stopped does more to prove I should stay away from dairy... I wish it didn't.

I'm very aware of the dangers of cheating and cross contamination and the damage it does. That's why I'm going completely paranoid here trying to avoid it like the plague and literally having nightmares about my mom cooking with flour in the kitchen because I'm afraid of inhaling the particles. My mom doesn't even bake but this is where my research is getting me. At school I have to eat in the cafe and I watch the chefs like a hawk and email the manager when something goes wrong, and I flat out refuse to eat what they put on my plate if I see it mishandled and then I go to the gluten free salad bar instead. At home I clean off the stove before I cook, use my own pan, spatula, and sponge to clean the pan and spatula, and I never put my dishes in the sink or leave them to dry in the same strainer as the other dishes. I never set them down until they are clean, dry, and carried back to my room where I keep them in a clean hope chest. For all I know my malnutrition symptoms could be because I'm just not eating enough, as scared as I am to eat anything.

I doubt lactose intolerance will resolve after being gluten free for a while... I started having lactose issues when I was in elementary school and stopped eating dairy in 6th grade. I was a Lactagen guinea pig in 7th grade and it worked for a while but then stopped, so I went off dairy again. At 18 I started taking lactaid pills or off-brand equivalents and they worked. I started having symptoms of gluten problems at the age of 23 and I'm now 24. It's only been the last couple months that I've had any mild dairy issues, even with taking the lactaid pills, so I know I can rule out lactose intolerance as being the cause of my symptoms. Since I did well with lactaid pills for nearly six years and I'm only now having dairy issues, it's got to be either casein, or something in the milk because of what the cows eat... ugh, what's next? Eggs? Soy? Water? This is exhausting. :( Does it ever get easier? Do people ever figure out their exact needs and how to live symptom-free lives? 

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Yeah first few years are rough, took me awhile to get my calorie count, and nutritional balance right. I also got constantly glutened til I gave up eating prepared foods by others outside my house, and MADE my own gluten free kitchen with all dedicated appliances, cookware, and ingredients. Still get issues with random food products getting contaminated at the store but normally months between flare ups caused by these.

You should probably work with a dietician to get your diet balanced. If you damaged intestines you could be having issues getting nutrients from certain foods (we are all different in this respect) and need to adjust your intake or supplement. I myself have issues getting B vitamins, iron, and magnesium, this leads to skin and nerve issues, anemia, constipation, and a fatigue when I miss supplementation.

As for calories the removal of dairy leaves a big void, i found using non dairy cheese, nuts and seeds filled that niche, Almond butter, Almond cheese, Coconut yogurt, avacado works nice also. Always having seeds/nuts for snacks or making seasonings and pesto with them. And Braggs Nutritional yeast has been a game changer using it in everything.  But as I said we all are different. -_- I sorta want to offer up cooking for you for a few weeks and see if we could find a balance lol. An

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Hi Drummergirl,

Being diagnosed is up to you.  It doesn't get you a gold star if you are diagnosed or not.  You still have to eat gluten-free if you are officially a celiac or unofficially a celiac.  Or you should anyway, IMHO.

Yes, symptoms can get better and fatigue can get better too.  It may take some time for that to happen though.  A recent study showed some children hadn't healed their guts after 18 months gluten-free.  So it's not too early to get started on healing if you can.

When your gut is irritated and inflamed it can react to many foods.  Some of those same foods may not be a problem after the irritation and inflammation is gone.  Or they could still be, it's not a 1+1=2 situation.

An elimination diet is a good way to identify problem foods.  I doubt you can effectively do an elimination diet if you are eating at a cafe regularly though.  It just doesn't seem like it would work.  If you are celiac then the most important thing to do is eliminate all gluten from your diet.  How you do that is something you'll need to ponder out.

We do have a thread for beginners called Newbie 101 in the Coping with section.  It might help some.

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Thanks. I'll see about the Newbie 101 section. 
Eating at my school's cafeteria will have to be a must this next semester. My dorm wing doesn't have a kitchen... and even if it did I'd be sharing with 30 other girls. The little microwave we have already scares me... and the crumbs all over the counter... *shudders* 
I think my best bet for next semester will be talking more with the cafeteria manager and meeting with each and every chef. There are 3 chefs there I really trust to do everything in their power to keep me from getting glutened. The others... not as much. Because they weren't there when the manager was introducing me to chefs. They just hear from their boss about random faceless students who don't eat gluten and then forget to keep up the standard. Those who know what it does to me really take care of me, though. And their kitchen in the back is split into a gluten side on the right side of the double doors, and a no gluten side on the left half on the other side of the double doors, so salads and things are never made near where paninis are assembled.
After next semester, I plan on moving into the house my bestie moved into. She was my roommate and is taking a break from classes so she had to find alternative housing. The woman she's living with is gluten free and a nurse, so I think that'll help me a lot. I plan to stay there during summer and senior year.
I'm very sad to announce that since giving up dairy I feel much better and even my acne has cleared up considerably. I am currently drowning my sorrows in Haagen Dazs mango sorbet.
Of course I'd have to give up dairy right after buying a new bottle of lactaid pills, a gluten free pizza, Miltons cheese crackers, a box of gluten free mac n cheese, Glutino chocolate chip cookies, etc. =P But Haagen Dazs still loves me. 

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Hmm, are you sure the Haagn Dazs loves you?  The ingredients list includes wheat and dairy, and little soy just to make things extra obnoxious.  I am not sure how they fit all those nasty things into sorbet, it doesn't seem like really helpful ingredients for making sorbet to me.

https://www.haagendazs.us/products/2488/sorbet/mango-sorbet/?gclid=COGD68muidECFTToMgodFRgHlw&gclsrc=ds

Mango Sorbet

nutritional facts

ingredients: WATER, SUGAR, MANGO PUREE, LEMON JUICE CONCENTRATE, PUMPKIN JUICE CONCENTRATE (FOR COLOR), CARROT JUICE CONCENTRATE (FOR COLOR), NATURAL FLAVOR, PECTIN. []CONTAINS: MILK, EGG, WHEAT AND SOY INGREDIENTS.

Hmm, I hope your chefs are reading labels too... :)

Learning to be / eat gluten-free is not a simple thing for many of us.  We are so used to eating whatever we grab that looks edible it is hard to adjust and learn new habits.  And eating whole foods is not something most people are used to any more.  But the good thing about whole foods is they have very few ingredients to trip us up.

If you are going to eat processed foods, or eat foods prepared by others, it is pretty important to check all the ingredients that are used.  There really is no other way to do it.  Trusting others to keep you safe in your diet is a bad idea.  But it sounds like your school has a pretty good idea of what they are doing in preparing gluten-free foods.  What I would do in that situation is still not totally trust them though.  I'd eat the plain veggies or plain meats, but I wouldn't trust them to make things like gravy or more complex dishes safely.  Trust is something that has to be earned.  When I do eat out, which is pretty infrequent, I get things like veggie side dishes, and a steak.  And I ask them to prepare the streak in a separate clean area or separate pan.

You know best what is workable for your situation though, so you are the expert for your diet.  With time I believe you can work out a workable plan of eating that will keep you reasonably gluten-free and dairy free.  I guess we all get hit sometimes, but we need to try and limit those instances to stay healthy.

At least you have some nice things to donate to your roommate now! :)

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1 hour ago, GFinDC said:

Hmm, are you sure the Haagn Dazs loves you?  The ingredients list includes wheat and dairy, and little soy just to make things extra obnoxious.  I am not sure how they fit all those nasty things into sorbet, it doesn't seem like really helpful ingredients for making sorbet to me.

https://www.haagendazs.us/products/2488/sorbet/mango-sorbet/?gclid=COGD68muidECFTToMgodFRgHlw&gclsrc=ds

Mango Sorbet

nutritional facts

ingredients: WATER, SUGAR, MANGO PUREE, LEMON JUICE CONCENTRATE, PUMPKIN JUICE CONCENTRATE (FOR COLOR), CARROT JUICE CONCENTRATE (FOR COLOR), NATURAL FLAVOR, PECTIN. []CONTAINS: MILK, EGG, WHEAT AND SOY INGREDIENTS.

Hmm, I hope your chefs are reading labels too... :)

Learning to be / eat gluten-free is not a simple thing for many of us.  We are so used to eating whatever we grab that looks edible it is hard to adjust and learn new habits.  And eating whole foods is not something most people are used to any more.  But the good thing about whole foods is they have very few ingredients to trip us up.

If you are going to eat processed foods, or eat foods prepared by others, it is pretty important to check all the ingredients that are used.  There really is no other way to do it.  Trusting others to keep you safe in your diet is a bad idea.  But it sounds like your school has a pretty good idea of what they are doing in preparing gluten-free foods.  What I would do in that situation is still not totally trust them though.  I'd eat the plain veggies or plain meats, but I wouldn't trust them to make things like gravy or more complex dishes safely.  Trust is something that has to be earned.  When I do eat out, which is pretty infrequent, I get things like veggie side dishes, and a steak.  And I ask them to prepare the streak in a separate clean area or separate pan.

You know best what is workable for your situation though, so you are the expert for your diet.  With time I believe you can work out a workable plan of eating that will keep you reasonably gluten-free and dairy free.  I guess we all get hit sometimes, but we need to try and limit those instances to stay healthy.

At least you have some nice things to donate to your roommate now! :)

There is something odd about the way the mango sorbet ingredients are shown on the website - it says gluten free and there are no soy, milk, egg or wheat ingredients listed.  looks like some sort of mistake on  the website. I am pretty sure it doesn't say that on the container - because I have eaten it with no issues.

 

"

product information

do your products contain gluten?

as a general rule, the gluten in our frozen dessert products is present only in added bakery products such as cookies, cake, or brownies. all products that are gluten-free are clearly marked as such on the packaging and the website."

https://www.haagendazs.us/faq/

 

Edited by kareng

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I thought it was a little strange too Karen. It's not obvious where the gluten would be hiding in the sorbet from the ingredient list.  Perhaps it is a website mistake.

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I felt pretty good after the sorbet.  I checked their website and saw the thing Karen found about how only the flavors with chunks of cookie or brownie or whatever else have gluten. I even clicked a filter on their website for gluten free and dairy free and the 4 sorbets were the only things that came up. They have a gluten free symbol on the containers, and I read the ingredients over and over to check for dairy. There was no allergy warning that says "contains" and then lists some of the big 8 under the ingredients list on the container.
Maybe they slap the same allergy warning under every product on the website? Even before clicking on the ingredients list (just looking at the product) under the list of symbols for gluten free and two others, it says: "MILK & CREAM FROM COWS NOT TREATED WITH THE GROWTH HORMONE rBST†." But there doesn't seem to be any milk in the product. So maybe that's another thing they just put on all their product pages... like how hamburger bun packages always say "May be topped with sesame seeds," and it would confuse me when I was little and I'd be like, "What do they mean 'may be?' Aren't they sure? Isn't it obvious?" lol Might be worth an email to Haagen Dazs to check, though. 

I'm already pretty careful about reading ingredients. I had years of practice with my lactose intolerance growing up. Now I also look for things like Red 40 because artificial colors are just horrible! 

I also check all the ingredients of things at school. My school cafeteria's website puts up their menu each day online and lists all the ingredients they put in stuff. A lot of the time, their vegetable or potato dishes just say "potato, olive oil, salt, pepper," or "carrots, broccoli, cauliflower, olive oil, salt, pepper." So a lot of their stuff is whole foods or close. It's just a matter of talking to them and making them super aware of the long term affects of gluten on my system, I guess.

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My husband can not have cow sourced products.  Many generations of men in his family have to give up cow sourced products in adulthood. He found as his father advised he can have sheep or goat based cheese. He does almond milk.

My son does no dairy. 

My daughter can not have cow based  2 percent or whole milk since weaned as a baby. She gets terrible stomach/gi pain within 10-35 minutes of consumption. Her DR.  said at the time of discovery  it was ok to do skim with her and she continues to do so. She can handle cow based skim milk and has no problem with cheese or ice cream sourced from cow milk. She knows to tell me if she does. 

I have researched the topics as you have mentioned  above and two other factors as well due to our unique spectrum. The processing of the milk within the food industry or the breeding of cows are other hypotheses. I know I have given  you more questions not answers. It's the science loving brain in me.

I don't believe any of the other alternatives hypotheses you listed or I researched ( than casein or lactose proteins/sugars gluten-free in DC pointed out) have been thoroughly researched much from a scientific or diagnosing  medical based perspective. The others fall under agriculture , food science, and food manufacturing and sometimes much time passes before the different disciplines intersect. Sometimes they don't intersect at all on issues even if perhaps it would be prudent to do so. Also the ever present issue of funding in the research world can limit investigation all around.

As for me at one time I could do cow sourced milk and until 2016 I could do cows based cheese. In 2016 I've experimented with dayia, sheep, and goat cheese. It's been a tough year and it does not appear to be a true allergy IgE based on my test results, but my multiple intolerances are a plenty this year following my gluten challenge. They did not give me the lactose breath test.

I still try small amounts as time passes they are baby steps. It's a delicate balance of experimentation and threshold. My joints and myalgia tell me thresholds in my food intolerance experimentation land. So for me personally I'm going with leaky gut, since I consumed it before and I can't consume it now after my gluten challenge, but that doesn't mean I believe that for everyone. 

My opinion it sounds like you are intolerant to likely another component of milk and it is no longer just the lactose which is why the lactaid pill is no longer effective. Maybe casein joined the club too as ravenswood suggested.

The other posters gave you great ideas good luck.

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Have you discussed Refractory Sprue with your doctor?  Even with a gluten-free diet, celiac symptoms continue and other treatments are required.  The odds are small ... but it happened to me.  Took about two years before everything was under control (and I still have some symptoms when I shouldn't) but it took more than just a strict gluten-free diet. 

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To have a negative effect from a food or anything really, you don't technically have to be "allergic" to it, just sensitive to it in a particular way.  That sensitivity can manifest in different ways in different people.  My husband had IBS for 55+ years.  Going gluten-free with me helped, but until he went AIP, it was never really ended.  Leaky Gut causes particles to enter the bloodstream that were never intended to be there.  This causes antibodies to develop and try and fight the intruder.  This fight gives off byproducts that cause us to react.  Sometimes you have to peel away one food, or catagory, at a time to realize you have sensitivities to many different things.  Eating less processed foods is essential in this.  Eat extra veggies in a wide variety of colors.  Make sure you are getting enough good fat in your diet.  We make fat bombs from unrefined coconut oil that are delishious!  Eat protein for EVERY meal along with fat.  We are now making up grilled hamburgers, freezing them and eating them for breakfast and alternating with eggs, homemade chorizo, coconut milk smoothies, etc.  Junk food is junk food... gluten free or not.  It doesn't nourish your body and help you heal.  Reading on Paleo helps to think of food differently and get ideas of what to eat.  Fortunately you are young and have a good chance of healing and avoiding some of the other Auto-Immune diseases associated with Leaky Gut.  By the way, Gluten is associated with 55 different diseases... it isn't  "good" for anyone!

Good Luck!

Debbie

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On 12/26/2016 at 3:14 PM, ERH said:

Have you discussed Refractory Sprue with your doctor?  Even with a gluten-free diet, celiac symptoms continue and other treatments are required.  The odds are small ... but it happened to me.  Took about two years before everything was under control (and I still have some symptoms when I shouldn't) but it took more than just a strict gluten-free diet. 

I haven't talked to my doctor about that. I did a little research after I saw your suggestion and it doesn't quite sound like what I have. The page I found says the symptoms are like untreated Celiac disease, though more severe and disabling. While I notice anything in my body that's even slightly off (possibly due to Asperger's and the sensory processing issues?) I'm not disabled by the symptoms dairy gave me. It was still milder than what gluten does to me (and giving up gluten got rid of so many other issues). The day I felt awful after some gluten free pizza, I spent the afternoon coat shopping with my parents (though again, I felt pretty awful). I felt anemic the day or two after giving dairy up, and then I started feeling amazing. Except now I'm hungry all the time. I've been eating fruits and vegetables more, but they don't really fill me up. 
I'm thinking it's just leaky gut causing more food sensitivities to develop... And I know that avoiding gluten and healing leaky gut are two different processes that need to happen together. A lot of Celiacs don't heal because they only go gluten-free and don't work on healing their gut.

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7 hours ago, deb_rn said:

To have a negative effect from a food or anything really, you don't technically have to be "allergic" to it, just sensitive to it in a particular way.  That sensitivity can manifest in different ways in different people.  My husband had IBS for 55+ years.  Going gluten-free with me helped, but until he went AIP, it was never really ended.  Leaky Gut causes particles to enter the bloodstream that were never intended to be there.  This causes antibodies to develop and try and fight the intruder.  This fight gives off byproducts that cause us to react.  Sometimes you have to peel away one food, or catagory, at a time to realize you have sensitivities to many different things.  Eating less processed foods is essential in this.  Eat extra veggies in a wide variety of colors.  Make sure you are getting enough good fat in your diet.  We make fat bombs from unrefined coconut oil that are delishious!  Eat protein for EVERY meal along with fat.  We are now making up grilled hamburgers, freezing them and eating them for breakfast and alternating with eggs, homemade chorizo, coconut milk smoothies, etc.  Junk food is junk food... gluten free or not.  It doesn't nourish your body and help you heal.  Reading on Paleo helps to think of food differently and get ideas of what to eat.  Fortunately you are young and have a good chance of healing and avoiding some of the other Auto-Immune diseases associated with Leaky Gut.  By the way, Gluten is associated with 55 different diseases... it isn't  "good" for anyone!

Good Luck!

Debbie

I definitely need more healthy fats. Maybe I should have some avocados. And everything I've heard about coconut products sounds amazing. I should look into that.
I've given up most processed foods now, though I admit I do still eat plain Rice Chex (dry) in the morning. I've found hey're the most gentle thing on my tummy first thing. I've been eating a lot more fruits and vegetables (and turkey, now that we have Christmas leftovers). 
My new plan for snacks while I'm at school consists of grapes, apples, bananas, carrots, peas, cashews, and sunflower seeds (if I can find nuts and seeds without cross-contamination... I'll do some research first).
I'm also keeping a food journal now with anything I ingest on the left and any weird thing my body does on the right and I'm doing a little research on healing leaky gut. Sounds like I'll need a bunch of vitamin, enzyme, and probiotic supplements along with whole foods. I kinda want to check in with my doctor before the probiotics, though... last time I tried those I did not feel great. Or maybe it was a case of too much too soon? 

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On 12/21/2016 at 7:47 PM, DrummerGirl231 said:


I'm very sad to announce that since giving up dairy I feel much better and even my acne has cleared up considerably. I am currently drowning my sorrows in Haagen Dazs mango sorbet.
 

I have struggled with acne for some time now, and i thought finding out i had celiacs was gonna clear me up, well, unfortunately here i am and no such luck.   i have read online that giving up dairy for others had helped. im glad to hear it was worth it for someone, gives me confidence to take the step myself. 

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