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Thanks for checking, Marliss - I did have a genuinely lovely holiday, and a nice time at a pretty food-focused open-house today. The host gave me a tour of the table, and what I could/couldn't eat, in such a way I was confident I was relying on her knowledge of the food, and not of my sensitivities - nicely done, hostess K!! I *love* the idea of getting together and drinking water.
Tex, I really am noticing this now, how almost no one my age is in the weight range of what middle-aged folks were like when I was a teen, and how much time is spent talking about food, and using the vocabulary of depriving, or 'cheating' - or "being good"... what are we, four year olds? No, we're not - because 4yo kids don't eat when they're not hungry, and they don't feel guilty about eating things they like. I'm not saying they have the best judgment, nor am I about to hand them my car keys, but...
xox/S
Conflicted Thoughts About Norman
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Unbelievable! People think that we're so deprived by doing without gluten, even my GI's nurse. I think that the main disadvantage to being GF is that most fast food places are off-limits, plus most convenience foods. IOW, it's a convenience problem - we have to cook our own meals.Sara wrote:One neighbor told my visiting nephew that he could go over there if he couldn't go another minute without something gluten-y, and she was not kidding
Gloria
You never know what you can do until you have to do it.
All this talk about dairy has gotten me thinking and going over my own history with it. I have never had a dairy-related flare, or reaction that I am consciously aware of. Of course, I eliminated dairy right after gluten last July, and have never looked back. At that time, I was so focused on getting well, that I would eliminate anything, as long as I was moving in the right direction with my recovery.
Since then, I tested positive at Enterolab (a lowish score of 14), but the MRT results showed non-reactive to all the dairy items, including yogurt, cheddar cheese, cows milk, goats milk, american cheese and whey. Only cottage cheese, in the dairy category, showed slight sensitivity (right above the non-reactive line).
I know that Enterolab tests for the protein (casein) in the milk, and I'm not sure exactly how the MRT test works, so I have assumed that the Enterolab test is more reliable than MRT and have faithfully stayed away from all dairy, except for a couple of cheese "tests" with a very minor amount. Now I am wondering if I should do a real dairy challenge. For instance, I did not eat any of yesterday's potato/rutabaga/cheese bake (made with milk and butter), but the left-overs are sitting in my refrigerator, begging me to have some :).
Any thoughts?
Love,
Kari
P.S. Tex - if you read this, I was wondering if you ever had a discernable sensitivity to dairy, as I know the only problem food left for you now is gluten? Also, do you know of anyone on the board whose dairy reaction resolved with time and healing?
P.S.S. Since I have 2 celiac genes, I'm hoping that my only "true" food issue is gluten
.
Since then, I tested positive at Enterolab (a lowish score of 14), but the MRT results showed non-reactive to all the dairy items, including yogurt, cheddar cheese, cows milk, goats milk, american cheese and whey. Only cottage cheese, in the dairy category, showed slight sensitivity (right above the non-reactive line).
I know that Enterolab tests for the protein (casein) in the milk, and I'm not sure exactly how the MRT test works, so I have assumed that the Enterolab test is more reliable than MRT and have faithfully stayed away from all dairy, except for a couple of cheese "tests" with a very minor amount. Now I am wondering if I should do a real dairy challenge. For instance, I did not eat any of yesterday's potato/rutabaga/cheese bake (made with milk and butter), but the left-overs are sitting in my refrigerator, begging me to have some :).
Any thoughts?
Love,
Kari
P.S. Tex - if you read this, I was wondering if you ever had a discernable sensitivity to dairy, as I know the only problem food left for you now is gluten? Also, do you know of anyone on the board whose dairy reaction resolved with time and healing?
P.S.S. Since I have 2 celiac genes, I'm hoping that my only "true" food issue is gluten
."My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Yes, back before I decided to cut out everything but the basics, I definitely reacted to both casein and lactose, (according to my elimination/challenge tests - of course, something else might have confounded the tests). I never had an Enterolab test for dairy, because I was so sure that I was sensitive to it. I've been eating dairy occasionally for a month or so, now, so I plan to order an Enterolab casein test in the near future, to settle it once and for all, (hopefully). I'm still not showing any noticeable symptoms to it, though.Kari wrote:P.S. Tex - if you read this, I was wondering if you ever had a discernable sensitivity to dairy, as I know the only problem food left for you now is gluten? Also, do you know of anyone on the board whose dairy reaction resolved with time and healing?
Gluten is not exactly my only sensitivity - I have to avoid sorbitol, especially in certain fruits, (particularly grapes), but that seems to be more of a dose-dependent thing, as a small amount is usually not a problem. That same limitation may apply to many others, as well. And the avenin in oats, of course, is obviously connected with the gluten in wheat, so there's nothing particularly unusual about that.
We have a few members who tested negative to the casein test at Enterolab, but the only member I'm aware of here, who tested positive, but who has always been asymptomatic, is Deb, and I believe that she has never stopped eating casein. She did a followup test this year, and the results were still positive. If my memory is not playing tricks on me, she's also asymptomatic to soy. So a precedent for an asymptomatic status does exist, (of course, we know that quite a few celiacs are asymptomatic, also).
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Kari,
My MRT tests showed I was non-reactive to all milk products except cottage cheese and goat's milk. My casein test from Enterolab was 130 units. I don't think there is much of a relationship between the dairy testing from MRT and Enterolab. MRT tests for a different type of reaction, according to Mary Beth.
Your Enterolab casein results are pretty low, however. My egg results were 22 units, but I react very quickly to them - at least I did several years ago when I last tried eating them.
Gloria
My MRT tests showed I was non-reactive to all milk products except cottage cheese and goat's milk. My casein test from Enterolab was 130 units. I don't think there is much of a relationship between the dairy testing from MRT and Enterolab. MRT tests for a different type of reaction, according to Mary Beth.
Your Enterolab casein results are pretty low, however. My egg results were 22 units, but I react very quickly to them - at least I did several years ago when I last tried eating them.
Gloria
You never know what you can do until you have to do it.
Tex - well, that sounds kind of encouraging to me - I'll be very curious to see how you test at Enterolab, and may consider doing the same. Like Deb, I do not have an apparent soy sensitivity, and also no legume sensitivity, so I consider myself very lucky (so far). I'm more and more thinking that gluten is my only big problem. However, after all I've been through (and I'm still not 100%), I will continue to tread very lightly with dairy. Thank you for your quick response; as usual, you come through with flying colors - whatever would we do without you?????
Gloria - thanks for responding - perhaps the MRT test does not detect sensitivity to the protein??? The interesting thing is that I was non-reactive to eggs at Enterolab, but reactive on MRT. I have found that I can have eggs in baked, or processed foods, and also by themselves. But they seem to be dose dependent, and I definitely cannot have them every day.
Love,
Kari
Gloria - thanks for responding - perhaps the MRT test does not detect sensitivity to the protein??? The interesting thing is that I was non-reactive to eggs at Enterolab, but reactive on MRT. I have found that I can have eggs in baked, or processed foods, and also by themselves. But they seem to be dose dependent, and I definitely cannot have them every day.
Love,
Kari
Yes, Tex, you're right. I still seem to be asymptomatic to casein and soy. I never tested them in my first testing last year but included them this year and was positive to both of them as well as eggs, which I've also continued to eat. I have been hoping that because my MC was diagnosed so quickly (2 months from the start of D until I had my DX, had found this board, done Enterolab and quit eating gluten) that MAYBE my other intolerances didn't get a chance to flair. My fat absorption rate also improved dramatically from >1400 to around 400 (where <300 is normal) so I'm hoping the casein isn't causing any additional problems. I have been having some acid reflux issues the last few weeks though so I'm kind of watching and analyzing that. I think about doing a dairy challenge but I think I'm afraid I'll create (discover?) a problem (ala Marliss). I do understand the inflammatory issues with dairy though and may decide to further pursue it. Deb
This sound kind of dumb, but... what would be the advantage of including dairy? I can see the plus of being able to tolerate a 'glancing blow' of dairy, where someone forgot and let some cross-contamination happen from a butter knife or stirring spoon (and no, I have not forgotten that cheese is tasty).
I ate small amounts of almonds (intermediate reaction, via Enterolab) and walnuts ('most reactive' of the nuts) over Thanksgiving, without a problem. I suspected that would be the case. I am not ready to risk a "no" answer with eggs yet, so am waiting to try those until - some future time.
My feeling is that 'asymptomatic' is not truly knowable. Of course I know if I have D, but I sure didn't know I was experiencing neurological damage from gluten, until it started to improve. Things like anxiety, depression, fatigue... that just seems too easy to write off (it's cold, I'm run down, coming down with something, need a break, tough week), when it might be a quiet red flag, or a constellation of minor symptoms that adds up to a whole 'nother autoimmune issue. I believe I was getting sicker and sicker, slowly and gently, until the relentless D stopped me in my tracks. And now I have much greedier ambitions for my health and vitality than "not D"
! I'm willing to avoid dairy permanently, just on the off chance, partly because it's the food arena that's the most craving-intense, after gluten/grains, and I find that mighty suspicious. Let's just say, like that bad ex-boyfriend, I don't believe dairy has my best interests at heart...
I ate small amounts of almonds (intermediate reaction, via Enterolab) and walnuts ('most reactive' of the nuts) over Thanksgiving, without a problem. I suspected that would be the case. I am not ready to risk a "no" answer with eggs yet, so am waiting to try those until - some future time.
My feeling is that 'asymptomatic' is not truly knowable. Of course I know if I have D, but I sure didn't know I was experiencing neurological damage from gluten, until it started to improve. Things like anxiety, depression, fatigue... that just seems too easy to write off (it's cold, I'm run down, coming down with something, need a break, tough week), when it might be a quiet red flag, or a constellation of minor symptoms that adds up to a whole 'nother autoimmune issue. I believe I was getting sicker and sicker, slowly and gently, until the relentless D stopped me in my tracks. And now I have much greedier ambitions for my health and vitality than "not D"
! I'm willing to avoid dairy permanently, just on the off chance, partly because it's the food arena that's the most craving-intense, after gluten/grains, and I find that mighty suspicious. Let's just say, like that bad ex-boyfriend, I don't believe dairy has my best interests at heart...Sara,
Speaking for myself, I would feel greatly relieved if my body is willing to accept dairy without a fight :). I view it as simplification - one less thing to worry about, rather than something I desperately crave and plan on including in my every day diet. My first and foremost goal is to feel well and have energy, and honestly, these days I feel better than I have in decades. This is something that I will fiercely guard. I have never had a discernable reaction to dairy, so I can't speak for what that would feel like, but I have a lot of respect for it, so I will never overindulge. Honestly, I have always been careful about my food habits, except for gluten
. Prior to finding out about my gluten sensitivity, I don't think I ate a meal in my lifetime that didn't somehow include it.
After what I've been through, the adage "you are what you eat" has been proven to me, so I plan on continuing to expand my kitchen expertise, and cook with fresh, unpolluted ingredients. I'm so motivated by many here, including you, who seem to have great facility and enjoyment in the kitchen. My next goal, now that I finally seem to be heading for the elusive "MC remission", is to become a better cook. The other day I bought several potted herbs that are sitting on my window sill enjoying direct sunlight :). The Thanksgiving meal I cooked single handedly, came out beyond my wildest expectations (my SO said it was the best meal he has had in years), so that has given me some confidence and encouragement :). My son and DIL (both great cooks) also said it was an outstanding meal. Anyhow, to me the best part was that not only did I manage to successfully prepare a large meal, but when all was said and done, I still had left-over energy to enjoy my grand-children
.
Love,
Kari
P.S. I'm so sick and tired of having to scrutinize every single ingredient in everything I put in my mouth - way to much of my time and energy goes into it, so the more items I can cross off my "worry list", the better!!!
Speaking for myself, I would feel greatly relieved if my body is willing to accept dairy without a fight :). I view it as simplification - one less thing to worry about, rather than something I desperately crave and plan on including in my every day diet. My first and foremost goal is to feel well and have energy, and honestly, these days I feel better than I have in decades. This is something that I will fiercely guard. I have never had a discernable reaction to dairy, so I can't speak for what that would feel like, but I have a lot of respect for it, so I will never overindulge. Honestly, I have always been careful about my food habits, except for gluten
. Prior to finding out about my gluten sensitivity, I don't think I ate a meal in my lifetime that didn't somehow include it. After what I've been through, the adage "you are what you eat" has been proven to me, so I plan on continuing to expand my kitchen expertise, and cook with fresh, unpolluted ingredients. I'm so motivated by many here, including you, who seem to have great facility and enjoyment in the kitchen. My next goal, now that I finally seem to be heading for the elusive "MC remission", is to become a better cook. The other day I bought several potted herbs that are sitting on my window sill enjoying direct sunlight :). The Thanksgiving meal I cooked single handedly, came out beyond my wildest expectations (my SO said it was the best meal he has had in years), so that has given me some confidence and encouragement :). My son and DIL (both great cooks) also said it was an outstanding meal. Anyhow, to me the best part was that not only did I manage to successfully prepare a large meal, but when all was said and done, I still had left-over energy to enjoy my grand-children
.Love,
Kari
P.S. I'm so sick and tired of having to scrutinize every single ingredient in everything I put in my mouth - way to much of my time and energy goes into it, so the more items I can cross off my "worry list", the better!!!
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Kari,
That is so inspiring! (And maybe, in some ways, it's not so bad that you came late to an apprecation of cooking... in the same way that I am grateful that I wasn't a baker, because that is much harder to unlearn and relearn, you don't have a lifetime of relying on butter or flour in making certain sauces - for example.)
I understand the "off the worry list" idea - to be able to eat something offered by a friend who understands about gluten but mixes up lactose & casein, even if you choose a small portion...
Congratulations on discovering the joys of cooking. I do enjoy cooking, as you know, but there definitely have been days since my husband went on a trip for work where I have felt that 'kitchen fatigue' - it would be nice to mindlessly pop something in my mouth. (Once I have the post-Thanksgiving turkey soup going, and another round of meat cupcakes, things should get a little easier!.)
As for the phenomenon of gluten with every meal, my maternal grandmother 'could not eat' a meal without bread (usually pita). Innnteresting.... and I do believe gluten is the only food consumed by a huge majority of people, at least in this country, at every single meal. People even have toast with their oatmeal My nephew is having trouble figuring out what to do with turkey leftovers, since there is no bread in the house.
I've been feeling reliably well, too. I could still be stronger... and I'm working on that, at a gentle and pleasurable pace. I've been in the park with my dog every day for 3 weeks now (usually my husband's routine), and doing a little strength work several times a week while he gnaws on his giant blue ball or socializes with friends and neighbors. I'm trying to take the long view, and put some muscle and stamina "in the bank," not to look slimmer or cuter or - whatever.
My neighbor who lost a lot of weight by going near-zero-carb keeps telling me how much worse he feels when he eats that stuff, but that he has no problem with any particular food (especially, of course, not one that starts with glu- and ends with -ten). I always say, "as far as you know." He was quite engaged and curious, and at the end of our conversation I know he understood why I assert that he might not know, and yet might have a problem. (And of course, I don't *know* that he's intolerant of gluten, but I do know that it's quite possible, and that he could easily be unaware of it.)
Oops, I believe I have side-tracked myself - my most resistant and persistent symptom!
BTW I believe my dairy reaction is "secondary" to gluten, whatever that means. But I think in my case, it's unlikely that I'll be able to include it safely, at least not any time soon. I might be wrong, but I don't want to find out the hard way that I'm not!
Love,
Sara
That is so inspiring! (And maybe, in some ways, it's not so bad that you came late to an apprecation of cooking... in the same way that I am grateful that I wasn't a baker, because that is much harder to unlearn and relearn, you don't have a lifetime of relying on butter or flour in making certain sauces - for example.)
I understand the "off the worry list" idea - to be able to eat something offered by a friend who understands about gluten but mixes up lactose & casein, even if you choose a small portion...
Congratulations on discovering the joys of cooking. I do enjoy cooking, as you know, but there definitely have been days since my husband went on a trip for work where I have felt that 'kitchen fatigue' - it would be nice to mindlessly pop something in my mouth. (Once I have the post-Thanksgiving turkey soup going, and another round of meat cupcakes, things should get a little easier!.)
As for the phenomenon of gluten with every meal, my maternal grandmother 'could not eat' a meal without bread (usually pita). Innnteresting.... and I do believe gluten is the only food consumed by a huge majority of people, at least in this country, at every single meal. People even have toast with their oatmeal
My nephew is having trouble figuring out what to do with turkey leftovers, since there is no bread in the house.I've been feeling reliably well, too. I could still be stronger... and I'm working on that, at a gentle and pleasurable pace. I've been in the park with my dog every day for 3 weeks now (usually my husband's routine), and doing a little strength work several times a week while he gnaws on his giant blue ball or socializes with friends and neighbors. I'm trying to take the long view, and put some muscle and stamina "in the bank," not to look slimmer or cuter or - whatever.
My neighbor who lost a lot of weight by going near-zero-carb keeps telling me how much worse he feels when he eats that stuff, but that he has no problem with any particular food (especially, of course, not one that starts with glu- and ends with -ten). I always say, "as far as you know." He was quite engaged and curious, and at the end of our conversation I know he understood why I assert that he might not know, and yet might have a problem. (And of course, I don't *know* that he's intolerant of gluten, but I do know that it's quite possible, and that he could easily be unaware of it.)
Oops, I believe I have side-tracked myself - my most resistant and persistent symptom!
BTW I believe my dairy reaction is "secondary" to gluten, whatever that means. But I think in my case, it's unlikely that I'll be able to include it safely, at least not any time soon. I might be wrong, but I don't want to find out the hard way that I'm not!
Love,
Sara
Sara,
FWIW, a dairy reaction "secondary to gluten" would mean that the sensitivity to dairy would not exist without the presence of a sensitivity to gluten. That would imply that the dairy-sensitivity would be the result of molecular mimicry.
Love,
Tex
FWIW, a dairy reaction "secondary to gluten" would mean that the sensitivity to dairy would not exist without the presence of a sensitivity to gluten. That would imply that the dairy-sensitivity would be the result of molecular mimicry.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Aha! Yes, that would be what I thought, if I had made myself sit down and think straight
Thank you very much! And that is why I believe/guess/fear/suppose the dairy switch won't go back to the "off" position - because of the molecular mimicry. (Of course, it's possible I'm dead wrong, and that dairy was as likely a trigger as gluten for me - but either way...)
And perhaps I am also thinking I'd rather be wrong and safe, than wrong and sorry? Unlike Kari, I have definitely had reactions I am pretty sure are dairy-alone, and not gluten, though I suppose it might have been at a time when I was reacting to everything. But I'm happy to leave the question without a definitive answer, and just leave it out indefinitely.
Thank you very much! And that is why I believe/guess/fear/suppose the dairy switch won't go back to the "off" position - because of the molecular mimicry. (Of course, it's possible I'm dead wrong, and that dairy was as likely a trigger as gluten for me - but either way...)
And perhaps I am also thinking I'd rather be wrong and safe, than wrong and sorry? Unlike Kari, I have definitely had reactions I am pretty sure are dairy-alone, and not gluten, though I suppose it might have been at a time when I was reacting to everything. But I'm happy to leave the question without a definitive answer, and just leave it out indefinitely.
Thanks Sara, Kari and Tex for your well-thought responses to this. As you may have gathered, I am still struggling with what is my right response to all of this. Like Kari, I have really never noticed a negative response to dairy, thus it is hard to decide to eliminate it....especially when I'm trying to eat a lower carb diet and cheese has been a mainstay in my diet. I have purposely cut back on it the last few weeks to see if I've noticed anything different and
I have not. I guess all I can do is continue to tweak things and see where I end up! Thanks again for your views. Deb
I have not. I guess all I can do is continue to tweak things and see where I end up! Thanks again for your views. Deb