Trouble With Dairy?

[IChaseFrisbees]

Hello everybody, I'm a freshman in college and got diagnosed with gluten intolerance last wednesday. The test which confirmed it was a stool test, and from what I understand I do not have Celiac disease because I have still been absorbing nutrients while eating gluten, but I can't take gluten and am supposed to stay off of it permanently.

This was a pretty hard diagnosis to get, considering (let's be honest) that all I want to do is eat pizza and play beer-pong, but I've been dealing with it okay. I can still walk/run/sing/see/hear, right? Good enough.

I gave up gluten last wednesday, and as far as I know I haven't slipped up. I eat in a dining hall, and the manager was very helpful in pointing out what gluten-free options are available to me. They actually already have brown rice tortillas and rice bread, and they've started serving burgers/chicken etc. without the bun for those of us who're staying off bread, which has been very helpful (I go to UC Santa Cruz, which apart from my home in the bay area seems to be one of the hotspots for all kinds of alternative lifestyles.)

Before I gave up gluten, my symptoms were constant gassiness, 3-6 BM's per day, occasional stomach cramps, all variations in color, texture, shape and size of stool etc.

Since I've been gluten free I've had minor improvements, I'm going fewer times per day, it's usually more pleasant when I go, less gassiness, but still nowhere near normal (by normal I mean before I triggered this. I guess I should say that I was totally fine until I went to a big party, drank way too much beer and did some edibles, and ever since the day after that party I've had these problems, leading me and my doctor to the conclusion that that was when/how I set-off my intolerance. That was in late may of this year.)

I had a colonoscopy last tuesday, the day before I got my test results back (if I'd gotten them a day sooner I wouldn't have needed it! Doh!) the results of which were all normal, but the after effects were an increase of severity of my symptoms, most notably the cramps.

But anyway, my big question is while my symptoms seem to be improving, they got much worse the other day after I ate frozen yogurt. I checked the ingredients before I ate it and it was all gluten free, and I'm wondering if the dairy could be the issue? My lactose-intolerance test came back negative, but I've heard that eating gluten while you're intolerant can lead to issues with dairy. Is this true, and if so will I ever be able to eat dairy again? Or is the dairy a red-herring, and my flare up could actually have been caused by something else?

Thanks in advance for any light you can shine on this issue for me, and I'm sorry if this has been answered before in another thread, I was sort of anxious to tap into this well of knowledge, because a week into this I know almost nothing about how this is going to affect my lifestyle.

Your time and help is much appreciated.

[ShayFL]

It is tricky with food. ALL of the ingredients may "look" fine, but maybe it was processed on equipment that also makes cookie dough frozen yogurt and you got "cross contamination" or CC as we call it in here.

Many of us find we have to email or call companies to confirm gluten-free status. Unless the product specifically says gluten-free....you should call. To make matters even more complicated, now and again a company will claim gluten-free but use something like Barley or Malt in the food and people get sick from it.

No Wheat, Rye, Barley or Oats. And these things go by other names too. There is a lot ot learn.

You are correct that many Celiacs and gluten intolerants cannot do dairy. For some it is temporary while their intestines are healing and they can add it back in later. For others it is permanent.

Eating in a dining hall is a challenge. As helpful as they may be, they may not worry about the marinade on the chicken they serve you and it could be loaded with gluten. So even though you dont get the bread, you are damaging yourself with the marinade.

Also CC in a busy kitchen is VERY COMMON. Oops....crouton crumbs in the big salad bowl. They didnt even notice. But your tummy will later. Oops....the cut bread on the same cutting board that they cut your carrots on later. They dont even think about it, but you will when you are on the toilet.

You can get lots of gluten from a busy kitchen like that. Best if you can get your own food and know for sure you arent hurting yourself.

We are here to help.

[IChaseFrisbees]

Is everybody sensitive just to exposure to gluten? My acupuncturist's daughter is gluten intolerant, and apparently she got sick because crouton touched her salad. It's hard to tell how sensitive I am well I'm still in the recovery process...

[lizard00]

Is everybody sensitive just to exposure to gluten? My acupuncturist's daughter is gluten intolerant, and apparently she got sick because crouton touched her salad. It's hard to tell how sensitive I am well I'm still in the recovery process...

Some people are more sensitive than others. The intolerance doesn't differ, but some people react to the tiniest crumb, whereas others could eat the whole crouton and not feel any affects. The damage is still being done, though.

[IChaseFrisbees]

So, when you say damage, is there a difference between Celiac and regular intolerance? Or is damage caused no matter what you have?

[lizard00]

So, when you say damage, is there a difference between Celiac and regular intolerance? Or is damage caused no matter what you have?

Ok.. bear with me, it's late where I am, and I'm getting tired...

There is such a thing as non-Celiac gluten intolerance; which is a sensitivity to gluten w/out the autoimmune aspect. However, there is a lot of discussion about whether this is simply the beginnig stages of Celiac where intestinal damage is beginning, or has not been done to the extent to show up on a test.

You were dx'd off a stool test? is that right? Did a doctor run a Celiac panel, looking for specific antibodies/markers for celiac disease? How long between the time when you feel your symptoms started to the time you were dx'd? Remember, there are 22 ft of small intestine, so you can still be absorbing nutrients even though you have celiac disease. It takes quite some time for ALL 22 ft of it to be destroyed. And at that point, you'd be in REALLY bad shape.

So, it possible that you DO have celiac disease despite what you were led to believe.

By the way... Welcome to our site! It is a wonderful place to get information, as long as I'm not here late at night... LOL

Seriously, the folks here are great and really have a wealth of knowledge. So, feel free to ask away!!!

[IChaseFrisbees]

You were dx'd off a stool test? is that right? Did a doctor run a Celiac panel, looking for specific antibodies/markers for celiac disease? How long between the time when you feel your symptoms started to the time you were dx'd? Remember, there are 22 ft of small intestine, so you can still be absorbing nutrients even though you have celiac disease. It takes quite some time for ALL 22 ft of it to be destroyed. And at that point, you'd be in REALLY bad shape.

Okay, so reviewing my test results, it says I have "active dietary gluten sensitivity" and that if I don't go off gluten I'll cause damage to my small intestines, as well as a long list of other things. So I guess that answers my question about that.

I'd say it was about 4 months, give or take between my symptoms starting and my diagnosis.

It also says here: "You have an autoimmune reaction to the human enzyme tissue transglutaminase,

secondary to dietary gluten sensitivity."

I don't know what that means. I haven't been in to see my doctor because I'm at school, but I'm due to go in and talk to her in about another week to discuss how the gluten free diet is going. Does anyone know about this transglutaminase?

[mushroom]

But anyway, my big question is while my symptoms seem to be improving, they got much worse the other day after I ate frozen yogurt.

I once used to work across the street from a frozen yogurt shop. Often someone would go across the street in the afternoon and bring back frozen yogurt to share. Thirty minutes later I would be in the bathroom with D. Someone else in the office suggested I could be lactose intolerant. Once I eliminated lactose (and frozen yogurt), a lot of my problems went away; that is, until I developed rheumatoid symptoms and then psoriasis, both auto-immune diseases. That was how I cottoned on to the gluten problem causing my IBS- and fribromyalgia-type symptoms. I would say if you can't handle frozen yogurt you are definitely lactose intolerant. Now, if you google frozen yogurt it will tell you it is made from cultured yogurt. I don't believe a word of this. While it may well contain some culture, it is not the same animal as yogurt. I have continued to eat yogurt without problem, but frozen yogurt just kills me.

Now I am no expert on celiac testing, having never been tested myself, but my understanding is that if you have an auto-immune response to gluten you are most likely celiac. And at the very tip of the villi in your gut which are flattened by gluten are the parts of your body that produce lactase to digest the lactose. Without villi you will not be able to handle lactose. Do you have problems with any other dairy? I.e., milk, ice cream, cheese, regular yogurt, etc? If so, at the very least you need to eliminate lactose and maybe casein too. When your villi heal you may well be able to handle both of them just fine.

Anyone with further light to shed, please jump in here.

[ShayFL]

Those medical interpretations sure sound like Celiac. When you go, ask for a copy of your lab work. Was it blood?

If you are Celiac, then yes, damage can be happening in your intestines and elsewhere in your body even without symptoms if you are eating gluten. You MUST avoid it as much as possible shooting for 100% gluten-free.

[IChaseFrisbees]

For the most part I stopped drinking milk because I noticed early on, way before my diagnosis that my worst days were when I drank these protein shakes I used to have all the time, which I made with 2 cups of milk. It's been pretty tough to pinpoint, because before I gave up gluten everything I ate bothered me. EVERYthing. I'm assuming it felt that way because I would eat gluten, which would have me feel messed up for the rest of the day no matter what I ate, because when I have symptoms now it seems like they don't clear up at all for at least 24 hours.

But I seem to be able to handle small amounts of cheese and yogurt (I was eating natural, whole yogurt for a while but I can't afford to always go into town and buy it, but symptoms don't seem to noticeably worsen after eating processed yogurt either.) But ice cream and frozen yogurt set me off pretty good.

My diagnosis was based on a stool test, and I'll try to get the official results on here.

On another note, last night I ate chocolate that, though it was gluten free by ingredients, "may contain trace amounts of gluten" because it's processed in the same place as wheat. Doh! Knew I should have read the label, I love sweets, and since I have no trustworthy desserts here I got a little excited that chocolate is gluten free. Anyway, I'm wondering how d you deal with symptoms once you make a mistake like that? My reaction has been pretty bad, and usually when I have a flare up like this I just don't eat for fear of triggering diarrhea or some other unpleasantness when I'm in class or away from the bathroom. I'm assuming this isn't the healthy thing to do, but is it better/worse to eat in the middle of an attack? Or are there specific things you can eat to lessen the effects?

Thanks for all your help, I'm going to steer clear of dairy until I've been symptom free for a while. At this point that feels like it will never happen...

[fedora]

hi,

did you get the gene test done too?

also, when I first gave up gluten my digestion was crazy. My intestines were confused for sure. I did slow down with eating dairy then gave it up. I did not eat any for 7 months, then accidentally ate some. I was fine. Then I accidentally ate it again a week later. I was fine. So I have eaten a little every day this week. I had cheese on tacos last night. I am fine.

so it could be temporary till your guts heal and start functioning normal again.

good luck.

[happygirl]

It sounds like your tests were through Enterolab. Enterolab, by definition, cannot diagnose Celiac. However, it does not test for Celiac, so you won't know if you actually do have it or not.

[lizard00]

It's been pretty tough to pinpoint, because before I gave up gluten everything I ate bothered me. EVERYthing.

Thanks for all your help, I'm going to steer clear of dairy until I've been symptom free for a while. At this point that feels like it will never happen...

I was that way too. I ended up in the ER because my guts felt like they were on fire. Dairy is very irritating to an already irritated GI system. So is most processed foods. I lived off of chicken, rice, bananas and potatoes for about a week or so. Then slowly I started eating other stuff, but I was afraid to eat, too. Who wants to eat when you know that everything is going to cause you pain. It's easier to be hungry.

I stopped drinking coffee/tea, too, during that time. Caffeine is another major irritant.

I still can't eat dairy. It makes my gut burn still, among other things. And it will usually last a few days. So my advice is to eat very very simple and pure until food doesn't hurt. Then gradually add things back in, but lay off the processed food. Even though it's gluten-free, it will make you feel worse.

[IChaseFrisbees]

You're right, it was Enterolab. Is it worth getting more testing for Celiac when the treatment is the same? By the sounds of things, either way gluten is a major irritant of my system and always will be, so would diagnosing Celiac just be for my peace of mind?

That's great advice for a diet. Right now I mostly eat eggs/sausage or bacon for breakfast, plain grilled chicken/rice/fruit for lunch and dinner, plus any plain cooked veggies I can get in. Tea actually seems to help, I started drinking it because I heard mint especially was good for the digestive system. I don't know if I'm imagining it or not, but do you think it's absolutely negative, or could it be more personal?

[ShayFL]

Getting a dx of Celiac or not is up to you. You are right the cure is the same....a gluten-free diet. If you think you will "cheat" by not having a dx, then you should get tested for Celiac. But you would have to start eating gluten again and plenty of it for a few months before getting Celiac testing. You have to decide if you are willing to do that.

[fedora]

I drink mint tea when my belly is upset. I drink lots of herbal tea, but I had to give up caffeine after going gluten free- no coffee at first and then no green tea either. Herbal teas have no caffeine so they are different than green or black tea which do have caffeine.

Did you get the gene test also?

[photobabe42]

Having just visited my alma mater over the weekend and wallowing in memories of my Crohn's Disease diagnosis my sophomore year, I feel your pain. I have recently tested negative (blood work) for Celiac's but a gluten-free diet for the past month seems to have me feeling a LOT better. I've been having issues for who knows how long and attributing them to Crohn's disease. There are many similar symptoms and effects so it's been quite an interesting month of research, reading, and a lot of trial and error at mealtimes. To touch on your question specifically...

When I'm in a flare of Crohn's disease (and those in themselves always vary a bit) I have trouble with dairy. I've used Lactaid to an extent but sometimes it's easier to avoid dairy altogether and use the Lactaid in emergency situations where I haven't planned ahead and brought food somewhere and ice cream seems like the safest option. I've switched to soy milk for all drinking and cooking purposes, rice milk is also pleasing. Lately, since I've had the symptoms of gluten intolerance, I've also noticed trouble with dairy. As many have said, dairy is rather harsh. So is alcohol and caffeine and I find that I have to give up those too from time to time. BUT you may in the future be able to digest any of these as your current inflammation subsides. If I could make one recommendation... knock off the alcohol. It won't do a thing for you no matter what state of health you're in. I think you'll find that eventually if you keep getting sick from eating certain things you will learn to avoid them.

I was able to access a kitchen in the basement of my dorm and so I did a lot of cooking on my own and with friends. I wasn't eating gluten-free then but there was one Celiac in my group of friends and everyone made sure that both Colin and I could eat. The more you can provide your own food, the safer you will be. I find many great recommendations for "on the go" foods on the message boards.

Lastly, all colleges have some type of office to assist students with medical problems, physical and mental disabilities, etc. Ours was called the office of Institutional Equity. I had to bring a doctor's note and was "in." They could drive me to class or for other errands (like getting healthy food), assist me in notifying teachers that I might need special help or consideration during the quarter, and lobby on my behalf for things like getting a dorm room close to the bathroom or the kitchen access. Find this service on your campus and use it!

Good luck!

[IChaseFrisbees]

Umm I'm not sure. I got the blood test, if that's what you mean by gene test? It came back negative, but I've heard it has a 50% false negative outcome, so I don't know how helpful that is either way.

And yes, very good advice staying off the booze, I had my last drunken venture last saturday and the day after was AWFUL. I'm done for a while for sure, until I don't even want to try until I can get rid of some of these symptoms and heal some of the damage I've done.

So one more time, when I'm having an attack I don't eat anything, because honestly it feels like the more I eat the more I'll...expel, you know? Any yay or nay on this issue?

[CMCM]

I spent the first 55 years of my life believing I had issues with dairy. For years I took Lactaid tablets, but it didn't seem to help. I learned to minimize dairy, but still thought it was just the lactose thing. Although I had a mother who was diagnosed with celiac disease when I was about 15, I didn't think I had it because I wasn't deathly sick the way she was, and at the time she was diagnosed, that was the definition of it, that you'd be so horribly sick and underweight, which I was NOT. I just had never ending digestive woes.

Fast forward to about age 55, when I had reached a tipping point of sorts. I had for most of my life minimized both dairy and gluten....I just sensed I didn't do well with them. But in late 2005 I was really getting sick, dizzy, lots of problems. I got tested thru Enterolab, and discovered I have a celiac gene and a gluten sensitivity gene. The stool test showed antibodies to gluten. I also tested casein sensitive. Suddenly things came into focus a bit more.

After quite a few months gluten and dairy free, I tried a bit of dairy now and then and didn't seemingly react to it. Although Enterolab had said I shouldn't eat either gluten or casein (no dairy at all), I have continued to have really small amounts of dairy (mostly the milk in my cappuccino, that's it). When I've had much more than that, for example, a yogurt, I start to feel the effects. So mostly, I'm fairly limited with the dairy.

I sort of concluded that eating gluten made the casein intolerance worse. When I eliminated gluten, perhaps things healed a bit and my body could better handle small amounts of dairy once again. I think that really is the case, because on the several occasions where I've lost control and had some gluten in my diet, the dairy issues immediately resurfaced.

My mom also told me that from infancy I had problems with dairy.....I was fed goat's milk for my first year as that was apparently the only milk I could handle. I probably had ongoing gluten and dairy problems my entire life. Although I have a celiac gene, I have no idea if I've ever had celiac disease. At the point where I wanted to get tested, I had been minimizing gluten and on one blood test a couple of years before this, it was negative. So perhaps I'm only gluten sensitive despite having the gene for celiac disease. I don't want to do traditional testing thru insurance, so I got as much info as I could thru Enterolab and the rest of my observations come from results of a gluten free diet. Sometimes I wish I knew definitively because I have gluten lapses from time to time, and I have no way of kinowing if I could be causing damage to myself.

My mom has 2 celiac genes, which means she got one from both parents. My grandmother lived until 99, eating gluten all the way along, so herself may have only been gluten sensitive. She did break a hip at 92 or so, and had arthritis for a lot of years, so those things may have been caused by not eliminating gluten, who knows.