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K8ling

My Husband...

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SO I suddenly came down with the symptoms of being glutened today...which was odd because my husband and i did not eat out/go anywhere today. In tracing back my meals, I realized that right before becoming ill, he had gotten me a piece of bread. I wondered out loud how a piece of bread could make me sick (it was gluten free! I made it last night! The kitchen has been de glutened!! And then I realized...

He was eating bbq sauce out of the bottle!!!! THAT JERK BROUGHT SOMETHING BACK THAT I TOSSED OUT! When I said "OH MY GOODNESS you didn't wash your hands?! What is wrong with you? Aside from that being BEYOND gross, YOU THEN PREPARED ME FOOD?!" He said "How do you know it was me?"

I walked over to the fridge, opened it, and there was a bottle of barbecue sauce, front and center. The NON gluten-free kind. He persisted though "How do you know you didn't eat the wrong thing?" (Ummm because *I* cook and *I* stock the pantry and everything in there is safe). So now he is mad at me and telling me to get over it. UMMM NO I WILL NOT GET OVER IT. YOU NEED TO STOP HAVING INCREDIBLY DISGUSTING HABITS (eating bbq sauce right from the bottle, alone) and LEARN HOW MY FOOD ALLERGY WORKS!!!

I DEFINITELY will not be allowing him to cook ANYTHING for me from now on. And as soon as he goes to work tomorrow, the offending sauce is being hucked in the bin.

Sorry for the vent, but I am pretty mad right now, and am writing from the bathroom floor. Add in some PMS and not only am I mad that HE doesn't care but I am also upset that I feel terrible. :angry:

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So glad that you feel the relief of a rant ( or at least, I think you do :rolleyes:) . Sometimes, that's why we're here...to support.

What kind of BBQ was he eating "right from the bottle"? :(

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K8ling -

i think that bbq sauce should "somehow" find its way into his briefcase or his sock drawer...upside down...with the lid off.

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My question is did he just not "think" about what he was doing or did he do it on purpose? There are plenty of good gluten free bbq sauces he can eat. I agree, until he can be careful about his habbits, then I wouldn't trust him to make you food. However, he does need to put forth an effort to learn how things are going to work. It will take time, but he will get there. It took awhile for me to trust my hubby, mainly because it took time for him to rethink his practices. I trust him to cook dinner for me now. The only thing thing that we cook for dinner that he does not eat is pasta, we just cook both.

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I had told him it had wheat in it, and I had put a HUGE x on the front. He thought that LICKING his finger (gross) was clean enough. He basically was not practicing good hand hygiene and because of that I want to die. He just got LAZY! He says things like "I am building your tolerance!" and then claims to be joking while my head is in a trashcan. I mean REALLY. We went 6 weeks w/o incidents, he just got really really lazy today. I went through and re-cleaned the kitchen after he made Tinkinyada pasta for dinner, just in case he re contaminated it.

Sorry, I am still bitter right now, I HATE being nauseous and I can't tell what's PMS cramps and what is Gluten. He is only allowed to sleep in bed tonight so he can see how miserable he made me.

This sounds awful but it's easier for me when he IS deployed...my kitchen stays clean and I don't get sick at ALL. The one TDY he went on? I felt great and wasn't paranoid about getting cc'd.

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SO I suddenly came down with the symptoms of being glutened today...which was odd because my husband and i did not eat out/go anywhere today. In tracing back my meals, I realized that right before becoming ill, he had gotten me a piece of bread. I wondered out loud how a piece of bread could make me sick (it was gluten free! I made it last night! The kitchen has been de glutened!! And then I realized...

He was eating bbq sauce out of the bottle!!!! THAT JERK BROUGHT SOMETHING BACK THAT I TOSSED OUT! When I said "OH MY GOODNESS you didn't wash your hands?! What is wrong with you? Aside from that being BEYOND gross, YOU THEN PREPARED ME FOOD?!" He said "How do you know it was me?"

I walked over to the fridge, opened it, and there was a bottle of barbecue sauce, front and center. The NON gluten-free kind. He persisted though "How do you know you didn't eat the wrong thing?" (Ummm because *I* cook and *I* stock the pantry and everything in there is safe). So now he is mad at me and telling me to get over it. UMMM NO I WILL NOT GET OVER IT. YOU NEED TO STOP HAVING INCREDIBLY DISGUSTING HABITS (eating bbq sauce right from the bottle, alone) and LEARN HOW MY FOOD ALLERGY WORKS!!!

I DEFINITELY will not be allowing him to cook ANYTHING for me from now on. And as soon as he goes to work tomorrow, the offending sauce is being hucked in the bin.

Sorry for the vent, but I am pretty mad right now, and am writing from the bathroom floor. Add in some PMS and not only am I mad that HE doesn't care but I am also upset that I feel terrible. :angry:

From what you wrote in your post, I could understand how your husband might feel defensive and put up a wall, instead of being the supportive partner you needed.

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From what you wrote in your post, I could understand how your husband might feel defensive and put up a wall, instead of being the supportive partner you needed.

Whoa! It takes two to tango.

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I don't blame you one bit for getting angry. Being glutened doesn't exactly lead to level headedness in my case. I know that my husband is very quick to get defensive and go on some sort of retaliatory attack rather than apologize when he messes up. I think that some men are wired that way. I suspect that is what happened. My husband is also out of town for work a lot and he misses out on a lot of the steps that we take towards being gluten free and it takes them some time to catch up. I hope that you guys can manage to communicate effectively once things have calmed down.

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Whoa! It takes two to tango.

It does...but I'd be willing to bet, K8ling, that this isn't the only issue the two of you have. May I suggest some couples counseling? You are dealing with a serious issue -- food -- and it stresses you out and frustrates you. What do you think it does to those around you? Do you have any idea how frustrated they are? Trust me -- they are. My husband still struggles dealing with my eating and feels resentful about it. I get mad at him...but I do understand. I'm NOT saying that what your hubby did was right...but it sounds like there are some other issues that haven't been worked through. Get an outside presence -- chaplain, counselor, pastor -- to counsel you two and figure out how to work together on this. It's extremely hard to adjust to, and the emotional strain, not to mention the physical symptoms, can push you over the edge.

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It does...but I'd be willing to bet, K8ling, that this isn't the only issue the two of you have. May I suggest some couples counseling? You are dealing with a serious issue -- food -- and it stresses you out and frustrates you. What do you think it does to those around you? Do you have any idea how frustrated they are? Trust me -- they are. My husband still struggles dealing with my eating and feels resentful about it. I get mad at him...but I do understand. I'm NOT saying that what your hubby did was right...but it sounds like there are some other issues that haven't been worked through. Get an outside presence -- chaplain, counselor, pastor -- to counsel you two and figure out how to work together on this. It's extremely hard to adjust to, and the emotional strain, not to mention the physical symptoms, can push you over the edge.

I have struggled with similar feelings of stress and strain as our family has learned to live our gluten free lives. I have often thought that counseling would be very helpful, and I have used some counseling to work through some of the issues that have come up. But I do get frustrated that *experienced* counseling is not readily available. I have counseled with several people about our condition over the last four years (more so in the last year). And I am simply astonished how little the *professionals* seem to understand our situation. The most understanding and insight that I have found has been in support groups, and the online ones have been more beneficial for us than the real life ones. I think that discovering celiac and gluten intolerance is such an individual experience on top of it all!

So can anyone help me understand ways to find good counseling? Or are we better off continuing to seek counseling here, amongst a larger population of people that can understand the many facets that are very hard to recognize for an outside presence?

In the book, Fast Facts: Celiac Disease, page 21 states, "Furthermore, the negative impact of the gluten-free diet on the long-term psychosocial quality of life should be considered when measuring the cost/benefit of mass screening." I have yet to find more information and understanding into these issues, but they often seem to be the ones that we continue to struggle with. I wonder, is the negative impact on the psychosocial quality of life because we cannot freely eat with gluten eaters? Or is it that we feel unable to explain just how drastically sick gluten exposure makes us? Is it having to struggle with those feelings of impending doom that often accompanies getting glutened? Or is it the inability for others to identify with how we are feeling during our times of vulnerability, pain and suffering?

BTW - I still do not understand what "psychosocial quality of life" means, but the above statement seems like it would indicate that a celiac diagnosis would warrant counseling as a matter of course. I would love to better understand it all!

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I have struggled with similar feelings of stress and strain as our family has learned to live our gluten free lives. I have often thought that counseling would be very helpful, and I have used some counseling to work through some of the issues that have come up. But I do get frustrated that *experienced* counseling is not readily available. I have counseled with several people about our condition over the last four years (more so in the last year). And I am simply astonished how little the *professionals* seem to understand our situation. The most understanding and insight that I have found has been in support groups, and the online ones have been more beneficial for us than the real life ones. I think that discovering celiac and gluten intolerance is such an individual experience on top of it all!

So can anyone help me understand ways to find good counseling? Or are we better off continuing to seek counseling here, amongst a larger population of people that can understand the many facets that are very hard to recognize for an outside presence?

In the book, Fast Facts: Celiac Disease, page 21 states, "Furthermore, the negative impact of the gluten-free diet on the long-term psychosocial quality of life should be considered when measuring the cost/benefit of mass screening." I have yet to find more information and understanding into these issues, but they often seem to be the ones that we continue to struggle with. I wonder, is the negative impact on the psychosocial quality of life because we cannot freely eat with gluten eaters? Or is it that we feel unable to explain just how drastically sick gluten exposure makes us? Is it having to struggle with those feelings of impending doom that often accompanies getting glutened? Or is it the inability for others to identify with how we are feeling during our times of vulnerability, pain and suffering?

BTW - I still do not understand what "psychosocial quality of life" means, but the above statement seems like it would indicate that a celiac diagnosis would warrant counseling as a matter of course. I would love to better understand it all!

Okay, here's my best pop psychology -- keep in mind I have a degree in it, but that's not saying much, some days!

IMHO, this change in lifestyle is not drastically different from any other change demanded by another illness. Yes, it is a bit more difficult in some ways than others. But change is change. You are asking your entire family to understand something that, for now anyway, is considered a rare diagnosis at best. Think about a gay person, years ago, coming out to their families. It was embarrassing, humiliating, and caused massive rifts in families. to some degree, it is still like that today, depending on the family. Celiacs disease and gluten intolerance can cause a similar resentment and rift. People like myself, who were given the IBS BS, are self-diagnosed, because no one else is willing or able to do anything about it. Our families really think we're nuts! :) So counseling: I'd be for it!

To find the right counseling, I'd look for a therapist who is willing to read up and be educated about celiacs disease and gluten intolerance. Interview several before making a decision. See who fits best with your needs. Don't take the first name off your HMO chart or helpline suggestion. Ask for several and then call around.

More than anything, remember that it is a change for everybody, and you are asking them embrace something far outside the norm. It's hard being the person who gets sick when it feels like we are doing everything right...but imagine how difficult it is for those for whom it DOESN'T affect, and yet have to alter their lifestyles? I am NOT suggesting that bad behavior and purposeful glutening (AGH!) is ever appropriate...but that some counseling as everyone makes these adjustments may be helpful.

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I'd be willing to bet that once K8ling gets her PMS under control, dealing with a gluten allergy will be a piece of cake. B) Fighting battles on both ends is a challenge.

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Your husband does not understand the serious nature of your disease. You and your husband need to go to a celia meeting and maybe he would understand what its like. In my area there is a meeting called 'PANIC SESSION'. Contact your celiac association in your area.

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In the book, Fast Facts: Celiac Disease, page 21 states, "Furthermore, the negative impact of the gluten-free diet on the long-term psychosocial quality of life should be considered when measuring the cost/benefit of mass screening." I have yet to find more information and understanding into these issues, but they often seem to be the ones that we continue to struggle with. I wonder, is the negative impact on the psychosocial quality of life because we cannot freely eat with gluten eaters? Or is it that we feel unable to explain just how drastically sick gluten exposure makes us? Is it having to struggle with those feelings of impending doom that often accompanies getting glutened? Or is it the inability for others to identify with how we are feeling during our times of vulnerability, pain and suffering?

While I am in no way averse to counseling for those who feel they need it, I find this quote from "Fast Facts" a little bewildering. Having experienced zero problems with changing over to and maintaining a gluten-free lifestyle, I find it bizarre that a book on Celiac Disease would imply that it may not be worth mass screening for a life threatening disease because of some perceived impact on quality of life. My quality of life improved 100% after going gluten-free. I could leave the house again, go to work and eat like normal people and not become sick. Celiacs can freely eat with gluten eaters, you just have to be a little careful about CC. How a person recovers and accepts this lifestyle depends largely on attitude and, while it is OK to be PO'd sometimes at various

annoyances and vent, this is certainly no death sentence and life will go on as normal.

As far as spouses who may become defensive....I don't see a problem with keeping bottles of gluten containing products in the fridge as long as the rest of the family pass the CC course that they need to take. This can be taught by anyone who understands CC but they have to be on board with what needs to be done to keep the Celiac healthy. If you have their help, keeping a stash of their own food should not be a problem. My husband keeps a stash of food and it's never, ever a problem. However, he goes out of his way to make sure there are no CC issues. If it takes a counselor to explain this to them, then drag them off to counseling. Sometimes they take information better from a stranger, as weird as that sounds. I also think that if there are other marital issues brewing, then this diagnosis makes the pooh hit the fan, so to speak, and all hell can break loose. This is where counseling can be a good thing.

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K8ling -

i think that bbq sauce should "somehow" find its way into his briefcase or his sock drawer...upside down...with the lid off.

:lol: :lol:

:D

Would that we could all react this way!

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I wonder if he just doesn't take you seriously about avoiding gluten. I saw on another thread where you said you drink Corona beer. I don't know, but I sure wouldn't drink Corona myself without some pretty substantial info to show it is gluten free. So maybe he doesn't think it really affects you a lot if you can drink beer like that.

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While I am in no way averse to counseling for those who feel they need it, I find this quote from "Fast Facts" a little bewildering. Having experienced zero problems with changing over to and maintaining a gluten-free lifestyle, I find it bizarre that a book on Celiac Disease would imply that it may not be worth mass screening for a life threatening disease because of some perceived impact on quality of life. My quality of life improved 100% after going gluten-free. I could leave the house again, go to work and eat like normal people and not become sick. Celiacs can freely eat with gluten eaters, you just have to be a little careful about CC. How a person recovers and accepts this lifestyle depends largely on attitude and, while it is OK to be PO'd sometimes at various

annoyances and vent, this is certainly no death sentence and life will go on as normal.

A 2003 study indicates that 41% of adults and 60% of children are asymptomatic. I consider myself as asymptomatic before going gluten free. Hindsight gives me a slightly different perspective on my asymptomatic status, but there was nothing alarming or intolerable in my life. I was considered healthy and well by all. The symptoms that I now experience with gluten exposure are alarming and intolerable. So, it feels really weird sometimes. I was *fine* before. Now I don't seem so *fine*, as I must be very careful with my food choices. So, my perspective on the psychosocial implications is slightly different.

And to call life "normal" doesn't seem to fully acknowledge the social implications that some of us face. I have three very young children (now 2, 5 and 6) that are all incredibly sensitive to gluten. The social situations that we routinely face in our attempts to be "normal" are challenging. As we have attempted to enter the school system in the past year, there have been so many things to consider. They routinely face protocols of isolation and exclusion because they cannot fully participate in many of the planned activities, including daily ones. While we do our best to accommodate and provide substitutions when possible, it is difficult. We have donated an incredible amount of stuff - both food and supplies - to help improve their school environments. And as we get ready to celebrate our daughter's kindergarten graduation, complete with a "cookie party", I am working to produce our gluten free cookies so that *we* CAN participate. I also will be facing navigation and selected isolation protocols (to be developed when we see how this celebration is set up) to keep my other children safe. Yes, it is relatively easy and matter of course for us now, but it has taken us four years to get here. And it sure doesn't feel *normal*.

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A 2003 study indicates that 41% of adults and 60% of children are asymptomatic.

Do you have a source for that? It would be interesting to read.

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Sheesh, wishing that your husband would deploy because he stuck his finger in some bbq sauce?????? You are very lucky you have a husband and you should be thanking God that he is in the US and is safe.

There are bigger issues that your family is facing and from the sound of it, your family is losing. How sad for you.

My husband sometimes makes mistakes too. He used my toaster instead of his... big deal. I wouldn't wish him deployed because of it.

And putting the sauce in his sock drawer... that's not the way to solve your issues. Now take a deep breath and realize how lucky you are!

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Do you have a source for that? It would be interesting to read.

Yes! I pull it off of the Fact Sheets that the University of Chicago publishes - I love these:

http://www.celiacdisease.net/assets/pdf/CDCFactSheets%20FactsFigures%20v3.pdf

And it is quoting the statistics identified in:

Source: A multi-center study on the sero-prevalence of celiac disease in the United States among both at risk and not at risk groups. Fasano et. al., Archives of Internal Medicine. February 2003.

I found the source as a free article here:

http://archinte.ama-assn.org/cgi/content/full/163/3/286

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A 2003 study indicates that 41% of adults and 60% of children are asymptomatic. I consider myself as asymptomatic before going gluten free. Hindsight gives me a slightly different perspective on my asymptomatic status, but there was nothing alarming or intolerable in my life. I was considered healthy and well by all. The symptoms that I now experience with gluten exposure are alarming and intolerable. So, it feels really weird sometimes. I was *fine* before. Now I don't seem so *fine*, as I must be very careful with my food choices. So, my perspective on the psychosocial implications is slightly different.

And to call life "normal" doesn't seem to fully acknowledge the social implications that some of us face. I have three very young children (now 2, 5 and 6) that are all incredibly sensitive to gluten. The social situations that we routinely face in our attempts to be "normal" are challenging. As we have attempted to enter the school system in the past year, there have been so many things to consider. They routinely face protocols of isolation and exclusion because they cannot fully participate in many of the planned activities, including daily ones. While we do our best to accommodate and provide substitutions when possible, it is difficult. We have donated an incredible amount of stuff - both food and supplies - to help improve their school environments. And as we get ready to celebrate our daughter's kindergarten graduation, complete with a "cookie party", I am working to produce our gluten free cookies so that *we* CAN participate. I also will be facing navigation and selected isolation protocols (to be developed when we see how this celebration is set up) to keep my other children safe. Yes, it is relatively easy and matter of course for us now, but it has taken us four years to get here. And it sure doesn't feel *normal*.

I am not totally insensitive to the fact that having young kids poses challenges when living gluten-free. It certainly does. However, I come from a different time, I am 51 and was raised by the greatest generation set. Back in the day, we had challenges also and they were probably harder to deal with because it was very unusual to see a diabetic child or one with asthma. There were not many resources at all for those who were. Forget living gluten-free then or trying to keep sugar away from a diabetic child when 99% of the population ate sugar. We were the Twinkie generation. ;)

Having said that, why do you keep using the term "isolation"? That's so self defeating and creates a mind-set that your kids are weirdly different when they are not. The just cannot eat gluten and while that poses challenges for you when they are younger, kids are smart and can be taught anything. Yes, it will take a while, as it did for all of us trying to live in a gluten-free mindset for life but it is hardly impossible.

There were times when those who raised me would show sympathy for a situation but if we whined about it too much, we would get the "suck it up" lecture and that was usually enough to give us the attitude adjustment we needed. Do people or kids with celiac disease need a little sympathy now and again? Absolutely! You just have to be careful about setting up all these mental roadblocks that will make this so much harder. If you do not treat this like a big deal, then it won't be. I think it lucky for you that all of you, except for your husband, need to be gluten-free. That should make the home life easier for you. Your husband may need to go to gluten-free Boot Camp 101 but the rest of you should be fine.

Stop defining normal based on what you see around you. I do not think it normal for parents to take their kids to McDonald's on a regular basis for their crappy meals. Those kids will grow into adults with coronary heart disease so that's not normal. We rarely ate out in the 60's or 70's

but ate most meals, home-cooked and at our dinner table. It's a good habit to get into.....much healthier.

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Having said that, why do you keep using the term "isolation"? That's so self defeating and creates a mind-set that your kids are weirdly different when they are not.

I use the term "isolation" to define the necessary step needed for us to safely eat in shared spaces. To "isolate" means to define a boundary of what will remain gluten free. This is critical in shared spaces where we plan to eat. When my daughter sits at her desk and eats her food from a different place than anyone else in the room, it is isolating. When "treats", parties and special occasions all revolve around food that makes her very sick, it is isolating. When the "friendship snack" is made by the class to share and she is required to do her own thing for her safety, it is isolating.

Isolation is not negative in my discussions. It is a necessary safety measure when we eat in shared spaces. She faces many of these decisions on a daily basis, and I think she is doing so very well with it all. Isolation is not a self defeating word in our discussions. It is a matter of fact. We must isolate ourselves from gluten heavy activities that put our health at risk. She cannot be in the classroom and make cookies with the class - she would PREFER to remove herself from the hazardous environment - I generally call it "isolation" as a matter of protocol. I would be happy to identify another word to use in these discussions!

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I wonder if he just doesn't take you seriously about avoiding gluten. I saw on another thread where you said you drink Corona beer. I don't know, but I sure wouldn't drink Corona myself without some pretty substantial info to show it is gluten free. So maybe he doesn't think it really affects you a lot if you can drink beer like that.

I hear ya on the husband thing. I've been gluten free for 2 months and am feeling so much better, though I haven't had an official diagnosis yet. My husband approached me last night and said (in an unfriendly way), "are you SURE you have celiac? Are you going to get tested?" Unconcerned about my long-term symptoms and now improving health that I rave about, he asked me this question because he does not like my gluten-free cooking (although I do provide him and the kids with regular bread every day) and was trying to get me to cook the old way. I was so pissed and upset, and am now considering actually putting old socks and shoes in a pot to make him some broth for dinner. :lol:

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I use the term "isolation" to define the necessary step needed for us to safely eat in shared spaces. To "isolate" means to define a boundary of what will remain gluten free. This is critical in shared spaces where we plan to eat. When my daughter sits at her desk and eats her food from a different place than anyone else in the room, it is isolating. When "treats", parties and special occasions all revolve around food that makes her very sick, it is isolating. When the "friendship snack" is made by the class to share and she is required to do her own thing for her safety, it is isolating.

Isolation is not negative in my discussions. It is a necessary safety measure when we eat in shared spaces. She faces many of these decisions on a daily basis, and I think she is doing so very well with it all. Isolation is not a self defeating word in our discussions. It is a matter of fact. We must isolate ourselves from gluten heavy activities that put our health at risk. She cannot be in the classroom and make cookies with the class - she would PREFER to remove herself from the hazardous environment - I generally call it "isolation" as a matter of protocol. I would be happy to identify another word to use in these discussions!

Taking into account that I do not know how young your children are, and speaking from my own experience, it is not always necessary to go and sit elsewhere to eat safely. I was near death (honestly) when diagnosed and become extremely ill when I accidentally ingest any amount of gluten...I only say this so you'll know how seriously I take the effort to not become glutened. I know how sloppy little kids can be when eating but I also know I can eat at a table surrounded by gluten eaters and I never become ill. I have told little kids at the table the few basic rules I have that they must follow to ensure gluten doesn't end up in my food and they do great with it. In fact, they do better than many adults I have encountered! :lol:

I guess I do not understand fully why some people feel they need to do this. We all have to live in the real world and unless the kids are breaking bread and there are crumbs flying everywhere, I think some precautions may not be totally necessary.

I can understand her not being able to make cookies with the class, though. No flying flour! Wouldn't it be nice if they could make gluten-free cookies? I also think it a shame we have become such a food-centric nation, to this extent. When we have group meetings here at work, if they don't provide goodies for people to eat, they often don't show up. I find that behavior bizarre.

I am not obsessed with food and don't understand this attitude. You would expect that from little kids, not working adults.

Good luck with your husband and be firm about things.....he needs to respect your health better but I think you will find that it's OK to have some gluten products in the house without you becoming ill. Compromise can work well and keep everyone happy!

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Having experienced zero problems with changing over to and maintaining a gluten-free lifestyle,

a) this is outstanding for you. :o But I can say with quite a bit of certainty that you are one in a million. ;) If it were like this for all of us, this forum would be a heck of a lot quieter.

but...

2) I am also befuddled by the statement in the book. It seems to me that the long term health benefits of identifying issues with gluten would outweigh living a life in which you are unnecessarily wearing down and damaging your body.

c) But to the start of this thread: I think the stresses caused by the necessary life changes could definitely warrant counseling. It's not a bad thing to have an objective, trained professional help both you and possibly your husband deal with this bear of a change. While life WILL go on, it can go on smoother with help. :D

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