Gf Married Couple

[tammy]

Hi all of you courageous people,

I love this site and it has been a great support! I am fortunate in that both my husband and are gluten sensitive. It makes life easier when your partner can relate to your disease. I was diagnosed about one year prior to him and was shocked when he too tested positive. As irony would have it, he was diagnosed with IRRITABLE BOWEL SYNDROME early on in our marriage. I never had obvious bowel symptoms besides constipation but I am hypothyroid.

Now, my challenge is when he cheats, or doesn't check the special treats that he buys for me. Its a double edged sword because my heart is melted by his love and thoughtfulness but how can I take a risk and contaminate myself with possible gluten. As it turns out, the beautiful chocolate that he bought us for Valentine's was manufactured in a wheat containing facility This and other situations tells me that he is still not fully informed nor does he want to be. Yet he feels so much better than myself even though I don't cheat! He has a lot less fatigue and needs much less sleep than myself It is great for him.

Can anyone relate?

[seeking-wholeness]

Tammy,

I can sort of relate, although my husband isn't diagnosed gluten intolerant. Both of our kids ARE gluten intolerant, as am I, and I see at least as much evidence of a family history on his side of the family as I do on mine. He also has what I consider to be an "irritable bowel," but that's just "normal" in his family! (The last time we visited my husband's parents, my toddler produced an explosive yellow bowel movement that floated. His grandmother looked at it and said it looked normal to her! She then took this as all the evidence necessary to conclude that the only illness my children suffer from is MY HYPOCHONDRIA! Needless to say, it was a very stressful visit!)

I have indicated that I would like my husband to get tested by Enterolab along with the rest of us, and he said he would, but I wouldn't be surprised if he backs out at the last minute. He really prefers the ostrich approach to maintaining his health! I, of course, find this extremely frustrating. Even if he tests positive, I imagine he will "cheat" pretty regularly on business trips and such, when it would be too embarrassing or inconvenient to adhere to a "special diet." I bet he'll "get away with it" better than I would, too! I think I read here at celiac.com that women generally have more distressing symptoms than men do. I'm glad he tries not to sabotage the gluten-free diet for the rest of us, but I really wish he would take responsibility for his own health!

This topic has brought up an issue I have been pondering lately, but I'll post that in a separate topic. Take care!

[seeking-wholeness]

Hi, everyone!

Here's a hard question that I have been pondering quite a bit lately, and I would like to get your input on it as well: As the gluten intolerant, health-conscious wife of a most likely also gluten intolerant "ostrich," how far does my obligation to be my husband's caretaker extend, ethically speaking? I'm thinking specifically in terms of growing older and developing long-term complications of undiagnosed/untreated celiac disease. If my husband develops osteoporosis and experiences a serious fracture, of course I will tend to his needs, but do I have to dredge up some sympathy as well? If he develops neuropathy and can't drive anymore, how do I have a life of my own? If he develops diabetes or has his gallbladder removed, will I have to go to the trouble of modifying his diet (further) and yet STILL watch him consume gluten every time we eat out? And what if he develops intestinal lymphoma and dies at age 50? He knows the risks. How can I NOT resent his decision to keep his head in the sand?

Does HE have any ethical obligation to the rest of the family to be tested for gluten intolerance NOW (since his kids have it), and/or to adhere to a gluten-free diet (if such is indicated) in order to PREVENT future complications and the strain they would place on our marriage? What if he refuses? Isn't that essentially demanding that I place his needs above my own, and above what is best for OUR family? I understand his reluctance to find out once and for all that he IS gluten intolerant, as I know it would be a huge blow to his ego and his grieving process could be long and difficult, but he chose to get married and have children, so his decisions shouldn't continue to be based solely on what would be EASIEST for HIM! Am I way out of line here? What exactly ARE our respective responsibilities in this situation?

We're both young, so these considerations are fortunately still theoretical, but I personally need to address them now, so I can stop pouring my scant supply of energy into contemplating them (at least for a while). My husband is not a fool, and he has agreed to be tested by Enterolab along with the rest of us (as soon as unexpected financial setbacks quit cropping up), but I'm not convinced that he will actually go through with the testing or ever devote his full effort to learning the intricacies of the gluten-free diet. I have NOT been harassing him about the gluten he eats now (except to remind him to brush his teeth before he kisses me when he gets home from work!), and thankfully he quite contentedly eats gluten-free with the rest of us at home. I'm just concerned because I want him (and US) to have a long, healthy life, but I can see clearly that it won't simply HAPPEN that way--he will have to work for it. And the last thing I want to see happen is for him to realize TOO LATE that he should have made his health a priority back when doing so would have made a difference!

Any insight you have is greatly appreciated, and I hope everyone is doing well!

[tammy]

I can only imagine the frustration that you experienced when you visited relatives most recently!!! I was diagnosed by Enterolab and had the gene test also.

My husband tested positive for the IGg blood test taken by our primary care physician. So at least he did get tested and it did show positive. It is a start!

Companies are making tasty gluten-free snacks and nutrition bars that are travel friendly. My husband did relent to obtaining the candy companies phone number after Valentine's Day. Progress I see, so I contacted Lindt Chocolates to see what progress, if any, was being made for gluten-free consumers. They will get back to me. Lindt and Gertrude Hawk are the only two gourmet chocolate companies accessible to us. We do have Godiva but they specifically told me that they are not gluten-free!

So we won't buy it.

Thankful for the support of others through this website!

[seeking-wholeness]

I see that my separate topic got integrated into this thread, which makes sense; I posted it separately because I didn't want to appear to be "hijacking" the topic and diverting it to MY issues specifically.

My ponderings bring to mind a quote from Star Wars: Vision of the Future:

Luke whistled softly under his breath.  "You sure know how to find the hard questions, don't you?"

"I've never had to find a hard question in my life," [Mara] countered tartly.  "They've always found me first."

Luke smiled.  "I know the feeling."

"I'd rather you knew the answer," she said.

Tammy, thanks for the sympathy. That visit to my in-laws brought out the worst behavior I have yet seen from them. They really pulled out all the stops to try to get me to give up on the gluten-free diet, especially for the kids. To my credit, I did nothing and said nothing that I regret now, which actually feels very empowering. I wonder how they feel about themselves now? I'm sure I'll never know. I stopped into Borders book store the other day and read a bit about anger, resentment, and forgiveness, and I realized that I CAN forgive them (not in the sense of becoming a doormat or "turning the other cheek," thus tacitly condoning their tactics, but rather in the sense of acknowledging and honoring their fundamental worth and value as human beings, in spite of their entirely inappropriate choice of behavior in this instance). I have not yet decided how I am going to address the issue of their blatantly disrespectful behavior toward me, but I feel a sense of inner calm that tells me that significant personal growth may come of this whole incident. That feels pretty empowering, as well!

Be well, and take care!

[tammy]

Insight???!!!!!! Personally, how long does one watch a spouse harm themselves...one month, six months, I say when their symptoms start sending out warning signs. I am not referring to flatulence and a little itchy skin. I mean, persistent stomach cramps, chronic loose stool, chronic fatigue etc.

Does everyone make lifestyle changes overnight? Are my sacrifices more important than anothers? Should I be too cautious? Does my spouse deserve my unconditional support? When will my energy, patience, caring and sympathy expire? Does the responsibility of a family, job, home, health, society play a large part in my decision making?

Getting it right is optimal but moving forward is one step closer to optimal!

[seeking-wholeness]

Tammy,

I'm not sure I understand the intent of your response. Could you please clarify it for me?

I realize that my ponderings may sound terribly selfish, but they are deep, dark issues that I need to grapple with, starting NOW, so that if they ever actually materialize in my life I will have a fighting chance of rising above them and actually GIVING my husband the unconditional support he deserves.

I am NOT saying that I want my husband to go gluten-free tomorrow, or else! I am talking about the possibility that he will NEVER face up to the fact that he, as a first-degree relative of two children with gluten intolerance, should be tested himself for the condition, and that he should take steps to manage it if it is present.

I am talking about ANY person deciding, through determined inaction, to place the brunt of dealing with the long-term effects of gluten intolerance (or any other manageable but chronic condition) on a spouse or other caregiver, instead of taking personal responsibility for becoming and remaining as healthy as possible, for the good of ALL involved.

It's a hairy issue, to my mind. Ultimately, only my husband can decide whether to be tested, or to pursue a gluten-free diet if necessary, and he DOES have the right to refuse. *I* am solely responsible for my reaction to such a decision. MUST I choose to be a martyr, sacrificing my hopes of a healthy relationship (physically OR emotionally) to "support" my husband in his "helplessness" in the eventual face of osteoporosis, or neuropathy, or diabetes, or cancer? Is it unreasonable to request that he take responsibility for his own health? If his personal issues are so entrenched that he just CAN'T take responsibility, should I berate myself if I can't summon the fortitude of a saint to cope with the situation?

At this point, all I really want from my husband is an acceptance of responsibility for his own health. There should be plenty of time for the rest to follow!

[tarnalberry]

I think your responsibility - and your rights - are rather limited. Yes, you are married; yes, you have kids. But he is his own person in his own body and has control over it alone. While I don't have a good reason to believe that my husband has celiac (though I'd find it nice if he'd get tested just to put my worry-wart mind at east), he has a family history of heart disease. He's improved his diet some, but still doesn't eat much in the way of produce, and consumes way to much sugar and refined grains. I worry about him, but all I can do is let him know I'm concerned, introduce him to things he might be willing to try, and accept it when he says no. (Ironically, he's taken to the gluten-free chicken nuggest more than I have!) Don't forget that you have time for this to sink in for him, and maybe in five years, he'll consent to being tested.

[tammy]

Tammy,

I'm not sure I understand the intent of your response.  Could you please clarify it for me?

< Personal insight and objectivity through my personal experience.  I saw your post and was willing to reply.  I still believe that chronic illness is best managed through support and responsibility. 

I realize that my ponderings may sound terribly selfish, but they are deep, dark issues that I need to grapple with, starting NOW, so that if they ever actually materialize in my life I will have a fighting chance of rising above them and actually GIVING my husband the unconditional support he deserves.

I am NOT saying that I want my husband to go gluten-free tomorrow, or else!  I am talking about the possibility that he will NEVER face up to the fact that he, as a first-degree relative of two children with gluten intolerance, should be tested himself for the condition, and that he should take steps to manage it if it is present.

I am talking about ANY person deciding, through determined inaction, to place the brunt of dealing with the long-term effects of gluten intolerance (or any other manageable but chronic condition) on a spouse or other caregiver, instead of taking personal responsibility for becoming and remaining as healthy as possible, for the good of ALL involved.

It's a hairy issue, to my mind.  Ultimately, only my husband can decide whether to be tested, or to pursue a gluten-free diet if necessary, and he DOES have the right to refuse.  *I* am solely responsible for my reaction to such a decision.  MUST I choose to be a martyr, sacrificing my hopes of a healthy relationship (physically OR emotionally) to "support" my husband in his "helplessness" in the eventual face of osteoporosis, or neuropathy, or diabetes, or cancer?  Is it unreasonable to request that he take responsibility for his own health?  If his personal issues are so entrenched that he just CAN'T take responsibility, should I berate myself if I can't summon the fortitude of a saint to cope with the situation?

At this point, all I really want from my husband is an acceptance of responsibility for his own health.  There should be plenty of time for the rest to follow!

Sarah,

[YankeeDB]

seeking_wholeness, you raise some fascinating questions!

I can't help seeing the parallels with alcoholism. Indeed, some consider gluten an addictive substance!

I wonder if the al-anon techniques would have a bearing here to some degree.

On a different track, I think there are ways and there are ways of getting someone to change their behavior. Remember the fable of the wind and the sun and which was more powerful in separating a man from his coat? In other words, the right mixture of humor and loving concern may turn the tide.

[seeking-wholeness]

YankeeDB,

Thank you so much for the insight! There are fortunately no alcoholics in my immediate family, so I didn't notice the similarity until you pointed it out, but now it seems totally obvious. I may check out some literature the next time I'm at the library and see whether it is relevant to our situation.

Like I said, I don't harass my husband about eating gluten right now. I figure there is no point in even mentioning it with loving concern until we can afford Enterolab testing for all of us, and I hope the results will speak for themselves. My husband is no fool; he just prefers to ignore his body! I just needed to get that angst off my chest so I could stop dwelling on it. I also find that once I have collected my thoughts and written them down, I have an easier time initiating a discussion. I broached the general topic of "long-term care ethics" with my husband, and his response was, "One of the biggest problems in America today is that nobody takes responsibility for their actions--just look at all the lawsuits people file! Of course it is reasonable to expect an individual to be responsible for his own health!"

I figure that, slowly but surely, he will tune in to his body and realize that taking care of it is at least as important as scheduling regular car maintainance. It may just take awhile!

Thanks again!

[Guest Margawitty]

My girlfriend has celiacs quite severely and I am known around the house as the "Gluten-Nazi". She sometimes will comment that I am overbearing but that she doesnt mind it because she should be more careful then she is and she said she relaxes when food is prepared while I'm around because I make d_mn sure its gluten-free! Her symptoms are not passive ones, and she does not have the luxery of "sometimes" cheating because she gets VIOLENTY sick at even a trace amount of gluten (full blown vomiting, shaking, immediate bowel movements even when just drinking water).

Anyway, she was diagnosed a few years ago and they told her "you have Celiacs disease" but did not tell her how to treat it. She went on eating whatever she wanted. We were friends for about 2 years before we started dating and everytime we were going to hang out she would say "I cant, I'm sick, I ate something I'm allergic to." Well after we had dated for about a month she became so sick she could barely lift herself out of bed to go vomit. I looked up celiacs disease and frantically called her saying "DO NOT PUT ANYTHING IN YOUR MOUTH TILL I GET THERE." We have been gluten-free since that day and I really cannot imgine what I would do if she voluntarily decided to start eating gluten again.

I agree that in some ways her caring for her own body is a reflection of her caring about OUR relationship. Just as I have gone gluten-free to support her, I expect her to stay gluten-free for "us." She stays gluten-free for herself of course as well, but she admits that at the beginning she started doing it for me. I'm thankful for every gluten-free day that we have and I can't imgine the immeasurable stress that would be put on our relationship if she started eating gluten again.

Just my two cents!

[seeking-wholeness]

Emmy,

Thanks for your input! Your girlfriend is SO lucky to have someone like you to support her as she deals with celiac disease. It was especially sweet of you to go gluten-free with her (and I see that you feel better gluten-free, too, so more power to both of you!). Good luck to you both!

[guppymom]

My husband and I are very different in many many ways...we have butted heads over so many issues so often, some major and some minor. I used to expend soooo much energy and work my brain and whole life into a frenzy over these things that out of survival I had to learn to let go. I can't force him to do or to be anything, as i know you know, and I give my thoughts and feelings in a non-threatening way and leave it go. I just let it go. I often wonder if i will feel compassion for him if he continues in ways that I feel will bring him certain heartache, but i have decided to wait and cross that bridge when it happens. He isn't, of course, abusing any substance or into anything immoral, in which case it would be a different story...then it would be the line in the sand or i'm gone. But he has relationship issues and does not deal with them wisely and is causing damage that he does not see and refuses to believe in. I feel sorrow watching this, but other than offer gentle guidance, because he becomes very pigheaded if he feels manipulated, I cannot live his life for him. I cannot make his choices for him, and I will not carry the full burden of the sorrow that he will feel later. But I really do understand what you are struggling with, as I feel a certain amount of resentment that the pain will be mine also, something that i did not do and was not responsible for. I just have to let it go as best I can and hope and pray for the best, or the strength to deal with the situation that may present itself later.

Not much help at all. I'm sorry. I sympathize though. Have a hug and a squeeze and know that we're all here for you.

Teresa

[DrLeonard]

Does anybody know of books, articles, etc. that are written about this kind of problem? My library of gluten-free guides and celiac disease books doesn't get into what you're supposed to do when someone chooses to cheat on the diet.