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Cross-reactivity?
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Judy- no worries, i didnt give up my 5x/day peanut butter habit :ph34r: and you shouldnt have to either! Michelle- i think the food rotation thing is supposed to work well (i dont know the medical reasons for it but it seems to make sense)...I am getting ready to reintroduce lactose w/ lactaid (my self-test for lactose v. casein) but its hard to do b/c i have been feeling so good! Isnt it weird how i miss milk SO much but dont want to drink it b/c im scared?! i guess none of you will find that weird b/c thats the way i feel about gluten as well as im sure you do too...

hey Stefi - yeah, I want to eventually try to reintroduce milk too. Have you tried goat's cheese and that sort of thing? (there is also sheep, buffalo). Anyway, from what I have read, they are just different enough than cows milk to make a difference. I eat them (especially goat), but I have to rotate - but as long as I don't eat too much, I seem fine on them. It may be worth a try first if you are afriad.

Apparently from what i understand if goat's milk, etc bother you, then cow's milk almost certainly will bother you more. I miss real milk too - I used to drink a ton of milk (crave it). Anyway, I just recently have been very sucessful with rotating the goat's milk. So eventually I will try cow's milk again.

Also, remember (I learned this because my mom is super allergic to milk) that there are three reactions from milk: lactose intolerance and casein allergy which you already know (and casein is in the goat, sheep, etc.) AND general dairy allergy. the general dairy allergy is for cows only, but it means you are allergic to all cow milk parts (but not necessarily goat casein for example - though there are some people who ARE allergic to all forms of milk), which include the cow casein, cow lactose as well as other things like the whey, milk protein, and all cow milk particles. anyway, if you are afraid, you should try the goat cheese before venturing into a big glass of milk with your gluten-free cookies (oh god, that sounds good).

let us know how the experiment goes.

-michelle

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Michelle-- thanks so much for the advice... I actually have been avoiding all cheese for the time being b/c i never really ate too much of it anyway, so i figure i am better off avoiding it in all forms for now (except parmesan which i use sparingly). I do LOVE raw sheep cheese though- i am so psyched to start eating that again! BUT today i finally did it- i broke my 1 month retreat from dairy-- I didnt exactly have a big glass of milk but i did have a small cappuccino- i thought that was a good start b/c it was small and it has much less milk than my usual latte. Anyway, i took lactaid and i feel ok! I'm not totally positive im in the clear yet but it has been a few hours and no symptoms yet (a little gas but not bad at all). I guess for me, that probably means that im going to be ok w/ dairy on a limited basis - like once a week or something WITH lactaid. I'm not sure what i will do yet about reincorporating cheese or yogurt, etc. But the good news of today is it seems like lactose and NOT casein! BTW, please correct me if i'm going about this wrong, but i am assuming that since the lactose seemed to work i dont have to worry about casein? Unless i experience a delayed reaction....keep your fingers crossed for me!

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Mookie,

I hope you continue to do well with the dairy. :)

Not to put a damper on things but just to warn you casein intolerance usually causes delayed reactions. Many times I thought I was ok with dairy but my reactions always came....just not until the next day....or sometimes a few days later. I didnt even figure out I was casein intolerant until last week because of the delayed reactions (I've been gluten-free almost one year now). I did get noticeably bloated with all dairy but just thought I was lactose intolerant. Its a bummer not having dairy. I'm still hoping maybe when I'm healed I can have ice-cream once in awhile....like on my birthday or something. Maybe a Starbucks once in awhile? Its hard to imagine linving w/out this stuff. :(

Does anyone here have casein intolerance and occassionally indulge? Hmmm...I think I'll ask that question in another thread.

P.S. Sorry to call you Mookie but I just like the name. :D

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Rachel, I'm really glad you warned me b/c if i did have a delayed rxn, i would certainly try to convince myself it wasnt the dairy- now at least ive been warned! I totally agree w/ u- the things that really get me are starbux and ice cream once in a while...those are my two indulgences. I saw the thread u started and hope you get positive responses. My guess is that if it is not the same as gluten (which im not positive if it is or isnt) then it would be ok to eat casein on a limited basis. I wouldnt worry too much about the cravings, i mean i substitute gluten-free cookies for regular ones and it doesnt make me crave the regular ones more! (unless they are bad cookies, in which case of course it does!)

And of course, you can call me mookie, its much more interesting than stefi anyway :rolleyes:

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Hi Guys, so glad i posted b/c I get the alert emails and can keep up the reading.

I'm learning so much..wanted to ask you guys, I've fought urine incontinence at times ...why at times?? who knows, but am learning though my food diary's that now list leaking urine when trying to get to the bath room in the middle of the nite after dairy...I have illiminated it almost..almond breeze vanila milk, etc no milk in cooking ever..BUT maybe once a week i'll have a small dish of gluten-free ice cream, edy's french vanilla.

I can make it all nite if not ice cream and no leaking...

anyone notice this happening to them?

also, this Zonulin--printed it all out but haven't read it..is this something that's susposed to help us heal, 'close the gate' to other proteins in leaky guy?

Judy in Philly

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Judy,

I've noticed that since I've *stopped* having dairy I'm having to race to the bathroom constantly. I'm urinating very frequently and can't hold it for very long. Had a few near misses. This happened to me when I first went gluten-free also. I wonder what thats all about? :unsure:

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Judy,

I've noticed that since I've *stopped* having dairy I'm having to race to the bathroom constantly. I'm urinating very frequently and can't hold it for very long. Had a few near misses. This happened to me when I first went gluten-free also. I wonder what thats all about? :unsure:

HI Rachel--see this is why I'm just getting so confused..why one person reacts SO DIFFERENTLY from another. I know we have to listen to our bodies, but this is just weird. You'd think there would be some constants..like D or C and some people, like you it seemed after cheese get C..???? :blink:

This whole cross-reactivity issue is amazing to me..I was just getting the leaky gut..It all does make sense in someways,, but just so much harder to adhear to but...if I would have known this 9 months ago, not sure i could have handled it.

Are you still so happy with the bio med drs. as you were in the beginning? I can understand so well, not posting and being 'quiet' for awhile..sometimes i just need to pull back from all the info..just gets overwhelming... ;)

I'm so glad we are all here for each other.

Judy in Philly

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I know- this is a lot to ponder. Does anyone else get C from lactose, rather than D? It used to give me D, but now I suspect it gives me C. Ugh! Sometimes this stuff is so hard to figure out.......

OK- my question is this. I keep a really detailed food journal (for the last year since I went gluten-free) and I just can't see any patterns. I feel like maybe I'm looking so hard that I'm missing the big picture- I don't know. But I'm really frustrated.

One question I wanted to ask you guys is what are your lingering symptoms that you think could be related to cross-reactivity? For me, I've gotten much better (but I would say I have only been able to say that in the last two months) on the gluten-free diet. I've limited lactose, but I had started limiting it a long time before I went gluten-free because I was first diagnosed as lactose intolerant/IBS (of course- my old GI's answer to everything).

I've gained back the weight, stopped having the foul stools, foul gas, night sweats, being freezing cold all the time, much less nausea. Those are the big ones that come to mind. BUT I have gone from going to the bathroom like 4x a day to being constipated a lot. I feel like I'm finally starting to heal.

What's really left for me are constipation and extreme sensitivity to gluten (I think- but like I said, I've been trying to track all these other foods for awhile). So, could I chock that up to cross-reactivity? I'm trying the rotation thing and it seems to be helping in general. I'm having far fewer reactive days and the reactions seem much less severe, but the "I can't even look at gluten without getting sick" remains.

Sorry, I'm just trying to brainstorm here (verbal D :P ) but if you guys wouldn't mind sharing what symptoms you still have, it would help me. Thanks, Beverly

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Beverly,

I get gas and slight D from dairy and soy. It is not as pervasive as a gluten rxn, but is definitely not right. but in many ways, it feels like a gluten rxn, which is why i thought to attribute it to cross-reactivity rather than intolerance. I have never had C, seriously not a day in my life, so i dont know about that. All i know is that from what you described, it DOES sound like your healing! (CONGRATS :D ) When i dont react to dairy or soy, I feel like you do (no more foul stools/gas or night sweats), but when i do, it feels like a minor gluten rxn, which is why at first i thought it was CC. One thought, your C might be related to not getting enough fiber-- i dont know what you are eating, but i did find that once i started feeling good, i noticed my fiber intake had gotten really low, and that i would only go if i had my morning coffee B) You might want to try flaxseed meal- i mix it w/ granola sometimes...But ya, ive been feeling really great too, most of the time, after a month of eliminating dairy. But i would like to be able to have dairy at least 1x/wk or so, so i guess thats where im at now. (Still no rxn to yesterday's cappuccino btw :D )

I dont know what to say to Rachel and Judy about the incontinence- Rachel what are you having instead of the dairy that might be acting as a diuretic? And Judy, when you DONT have ice cream, do you have something less liquidy instead? B/c i find that if i eat anything liquidy before going to bed, i wake up having to pee, but if i have something like crackers, i am fine. Just a thought... I also think that when we change our diets, we tend to subconsciously drink more water- i know i do- which is a good thing, but also obviously increases your bathroom visits :P

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Mookie,

In my case before I went gluten-free I had a ton of fluid retention. I could easily gain 8 lbs. of just fluid in one day. When I went on the diet I think I had to pee so frequently because I started losing the fluid. There was so much fluid it was actually hiding my weight loss so people didnt notice how skinny I got until after I started the diet.

I noticed when I ate a block of cheese 3 weeks ago the next morning I had tons of fluid again. I've had some amount of fluid retention the whole time anyway because I was never casein free until now. Things became really obvious to me after the cheese incident. I think I might be losing the water weight again like when I first went gluten-free.

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Rachel and Judy- I wouldn't be surprised if it was your body releasing fluid because think about how much bloating gluten causes (my stomach blows up like a balloon). If we're having the same reaction to other things and then we stop them, it would make sense that your body is releasing fluid again.

Mookie- I know I'm not getting enough fiber despite my best efforts, but I also think that lactose may be causing my C. Which is weird because my whole life I had C, but when I first got sick, lactose gave me D, but now I'm back to C. Ugh!

One thing I can say for sure is that soy does not agree with me and while I'm not totally keeping it out of my diet (it's in so much) I won't go near soy milk, cheese, ice "cream," soy energy bars, the tropical Ssource gluten free/dairy free chocolate- anything that is MAINLY soy. It definitely doesn't agree with me at all. I feel like Ii'm better off having a little lactose.

I don't drink milk. When I have cereal, I use rice milk. But I do eat a fair amount of parmesan and some of the drier cheeses (wouldn't touch cream cheese) which have less lactose (I think :blink: ). occasionally, I'll indulge in a little ice cream. But i wonder sometimes if I'm in denial about lactose because, like you guys, I like it way more than gluten. And since, i don't have soy....?????

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Beverly- i think i can handle soy in small amounts, as long as i dont go overboard (and if i do it just makes me gassy and i get slight D, nothing as bad as gluten). But i agree w/ u, sometimes it is worth just going all out with the milk! Question: did you ever get tested for dairy? Are you sure that it is the lactose that bothers you? The reason i'm asking is this:

Just as Rachel predicted (thanks Rachel!), i all of the sudden am experiencing symptoms...i can only assume it is the dairy from yesterday b/c i havent had anything suspect today...but all of the sudden that foul gas :ph34r: ...i havent had D yet but i am pretty sure this is a rxn to the dairy. So heres my question: do i have to get tasted for Casein? Or should i try again w/ lactaid but with something less than a latte (yogurt??) I mean, I'm just not sure what the best way to proceed is but i'd rather not get sick again...though i am kinda thinking i would like to know which it is for sure so that i know if it is even worth experimenting w/ lactaid. Rachel, i am particularly interested in your advice since i know u just got tested...what tests did you do? I am not sure i can afford the testing right now, but im interested in knowing what's out there.

Thanks, guys, this thread has been SO helpful!

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One more thing... we keep talking about this temporary lactose intolerance while healing...if i am just experiencing that, or perhaps cross-reactivity (getting back on topic!) would the lactaid not work properly? If thats the case, is it premature to assume it is not lactose intolerance, thus that it is permanent casein sensitivity? Sorry for all the questions :)

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Mookie,

I didnt get tested recently. I've been sick for several months now....like if I was eating gluten still. It just took me awhile to figure out it was from the casein. There is no way its just a lactose problem for me...the symptoms are the same as before I went gluten-free and I dont feel like I've healed much at all.

My Enterolab test for casein was negative last year. It was a 9 (10 being positive). I was mostly off dairy for about 4 months prior to testing so maybe that lowered the number and it should have been positive. All I know is I got happy about those results, added dairy back in small amounts (along with alot of other foods soy, etc) and have progressively worsened since last August.

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Rachel,

I'm so sorry to hear you haven't been well.

Lost those 2 weeks in CA and really haven't caught up with you since then.

I thought you were doing so well with the nw clinic and loved the dr's and were doing alot of tests and finding the answers. I've been following your posts here and now wonder if your getting better at all.

You seemed to have all the answers and was on that drug that was making you so sick to heal some bateria??

I'm learning so much from this thread but don't get why your not healing...???

hugs judy

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I so appreciate all your special posts to me. I'm sure reading them but not posting right now as just so overwhelmed and trying to spend my time 'eating just the basics'--spending less time oncompter'-and spending time in the garden 'tending to my soul' my body is just going to have to cope...with just the basic foods...we'll see.

PS...i posted somewhere a couple of nites ago that i tried a small dish of gluten-free ice cream the other nite..just my way of dealing with 'EASTER' Mom, Jason being gone, rain, WELL.....NO DOUBT IN MY MIND...When you wake up the next am and need 2 canes to get around....I CAN'T HAVE DAIRY...Isn't is odd how we grieve the comfort foods when we are sad and down????

HUGS TO YOU ALL

PANSIES CALLING TO ME.

JUDY

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Judy- Go tend to those pansies!!!!

Mookie- I haven't been tested for lactose vs. casein. I'm supposed to do a lactose breath test, but haven't yet because I've got to drive an hour and a half to do it. :( But i will do it. But my question is, if I'm not lactose intolerant, I could still have problems with casein because lactose is sugar and casein is protein, right? Or no? Also, I think if you were just lactose intolerant, Lactaid would help (but probably not while you're healing) but if it's casein, Lactiad works on the enzyme, not the protein.

But I still keep thinking about leaky gut. And irritating body parts. For example, on the thread with radman about how strict we need to be, we were talking about reflux (which I've had since I was 18). Just because you take Nexium or Prevacid or whatever, it makes the symptoms go away, but essentially, you still have reflux because it's a physiological abnormality. You might not be getting stomach acid in your esophagus anymore, but food is still coming up because your sphincter doesn't close correctly. So, you are still irritating your esophagus and it is this chronic irritation that leads to esophageal cancer (bad news).

So, I'm not sure what my point is. I just keep coming back to leaky gut and thinking about that and its long-term effects.

Rachel- I'm so sorry you don't feel like you're healing. You've been through so much. :(

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Rachel- I'm so sorry you don't feel like you're healing. You've been through so much. :(

I am also frustrated for you Rachel. After years of suffering I thought the gluten-free diet was the ticket with my Celiac--like "I've finally figured it out! Everything is up from here now!" However, I seem to have more problems now then before at times. That is frustrating--for you it has definitely been like peeling back the layers of an onion--one after another and another! :blink: Hang in there and hope you reach a turning point soon!!

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Yes, Rachel, i really hope that once you have removed casein, you will finally find some peace of mind w/ all these problems...it is like one big guessing game isnt it!!

Beverly- thats the same question i have with the lactose v. casein issue...but it seems like getting tested may or may not provide the answers im looking for, as rachel pointed out, which is frustrating as well. But i think if i was tested for anything it would be casein, b/c i think if i was negative for casein, it would def be lactose intolerance, even if only temporary. One thing that occurred to me is that maybe one lactaid wasnt enough with drinking a cappuccino- b/c i didnt feel AWFUL afterward, just a bit of that old feeling i used to have... Im also wondering if lactaid would work at all as my gut is healing and if maybe i didnt wait long enough before trying to introduce milk... So much to figure out :unsure: The only thing i know for sure is that my body does NOT want dairy right now, even though my brain does :)

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I thought you were doing so well with the nw clinic and loved the dr's and were doing alot of tests and finding the answers. I've been following your posts here and now wonder if your getting better at all.

You seemed to have all the answers and was on that drug that was making you so sick to heal some bateria??

I'm learning so much from this thread but don't get why your not healing...???

hugs judy

Judy,

I think I wasnt healing because I had dairy in my system pretty much everyday. I wasnt aware that it was making me sick.

I still go to the clinic. The antibiotics for the bacteria didnt change anything as far as my symptoms. I went to a new GI...he said the bacteria could have been overgrown but NOT causing me any illness. He said since nothing changed with treatment its probably not the cause of my symptoms. He just said it was good that I took the antibiotics because the bacteria can turn nasty on me at any time.

The GI thinks I have Celiac and nothing else. I'm having a colonoscopy done tomorrow and some blood tests showed elevated liver enzymes but CT scan looked good.

The doctor from the clinic is stumped as to why I havent gotten better. He ordered a heavy metal test since my symptoms started after dental work 3 years back. Still waiting for those results. The day after I took that test I realized I was having problems with the casein. Now that I'm totally gluten, casein, and soy free I'll see how I do in the next few weeks.

I basically felt glutened every day for the last 3 months. I was taking colostrum (given to me by the doctor)...I got up to 6 pills a day and was getting sicker. When I looked up colostrum...I found out its basically cows milk. No wonder it tasted so good to me. Anyways, I had thought I was off dairy but I really wasnt.

thats the same question i have with the lactose v. casein issue...but it seems like getting tested may or may not provide the answers im looking for, as rachel pointed out, which is frustrating as well. But i think if i was tested for anything it would be casein, b/c i think if i was negative for casein, it would def be lactose intolerance, even if only temporary.

Mookie,

Since you really havent been casein free for any length of time you could probably do the enterolab test and get accurate results.

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Yes, Rachel, i really hope that once you have removed casein, you will finally find some peace of mind w/ all these problems...it is like one big guessing game isnt it!!

Beverly- thats the same question i have with the lactose v. casein issue...but it seems like getting tested may or may not provide the answers im looking for, as rachel pointed out, which is frustrating as well. But i think if i was tested for anything it would be casein, b/c i think if i was negative for casein, it would def be lactose intolerance, even if only temporary. One thing that occurred to me is that maybe one lactaid wasnt enough with drinking a cappuccino- b/c i didnt feel AWFUL afterward, just a bit of that old feeling i used to have... Im also wondering if lactaid would work at all as my gut is healing and if maybe i didnt wait long enough before trying to introduce milk... So much to figure out :unsure: The only thing i know for sure is that my body does NOT want dairy right now, even though my brain does :)

I can seem to only tolerate cultured dairy, like yogurt and cheese. A frappucino sends me straight to the bathroom, but that may have something to do with coffee. I just feel kind of yucky after milk or pudding and stuff for an hour or so then I seem to be ok. Maybe a bit bloated, but ok. I find that I have to take 2 lactaid for milk stuff, or it doesn't really work. I'm starting not to like milk stuff much, which, as I've learned in the past, is my body's way of telling my brain it doesn't like it. It worked that way first with nuts (allergic), then breads and pasta (celiac), now milk.

Other than the lactose issue, dairy is pretty rich anyway, and our intestines probably don't like that while we're healing. :unsure:

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lactose vs casein....so i know a lot of you are trying to figure out if it is lactose or casein that you have problems with and i came up with a self-test idea when i was at the store yesterday....a lot of soy cheeses and rice cheese have casein in them, but are lactose free - so maybe you can check it that way - by eating one of those products. if you have a problem with them, (assuming that you don't have a problem with soy or rice, of course) then you may certainly have a casein problem. if not, then maybe it is lactose that is the problem. anyway, i know this is totally unscientific and all - but it was just an idea. oh and be sure to monitor yourself for several days. i've read that for both lactose AND casein - it can take as long as a week to have a reaction from it (and the thing that i read also said that most people DON'T react right away, that it is usually at least 24-48 hours before there is a reaction). okay, hope this helps someone. i'm going to try it myself..i just ate a gluten-free (and the factory is a dedicated gluten-free factory) pizza with soy cheese (but the soy cheese has casein in it). i'll let you all know how it goes.

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lactose vs casein....so i know a lot of you are trying to figure out if it is lactose or casein that you have problems with and i came up with a self-test idea when i was at the store yesterday....a lot of soy cheeses and rice cheese have casein in them, but are lactose free - so maybe you can check it that way - by eating one of those products. if you have a problem with them, (assuming that you don't have a problem with soy or rice, of course) then you may certainly have a casein problem. if not, then maybe it is lactose that is the problem. anyway, i know this is totally unscientific and all - but it was just an idea. oh and be sure to monitor yourself for several days. i've read that for both lactose AND casein - it can take as long as a week to have a reaction from it (and the thing that i read also said that most people DON'T react right away, that it is usually at least 24-48 hours before there is a reaction). okay, hope this helps someone. i'm going to try it myself..i just ate a gluten-free (and the factory is a dedicated gluten-free factory) pizza with soy cheese (but the soy cheese has casein in it). i'll let you all know how it goes.

That's exactly what I did. I was trying to experiment with dairy so I ate small amounts of gluten-free rice cheese that had casein in it. I definitley reacted. The reactions were minor, but enough for me to know I shouldn't eat casein. Just make sure to pay attention to things beyond the GI issues. One of the things that happens to me when I eat casein is I get majorly congested. I hope everyone solves their dairy problems soon. I don't think there are too many humans who can properly digest pasteurized cow milk protein though.

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Good idea! why didnt i think of that - seems more reassuring than than trying to test w/ lactaid...

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    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
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