26 replies to this topic

[AVR1962]

Teacher and Lucy, celiac/gluten-intolrance is not a choice we make just like someone who has diabetes does not make the choice to have it either. What we do have a choice about is what we decided to do about it. Just like a diabetic, we can let it go but we're not going to get any better. Infact, if you let this go, it might take awhile but it is likely things will only get worse. I had no idea this was what my problem was and for 2 years I had been going to various docs with symptoms. Unfortunately it went too long unattended and now I am dealing with neuropathy issues. This leads to other things if you let it go so please do what is best for yourselves.

Many of us here have posted about the lack of support from family and spouses. I have been married for 19 years and I honestly think my husband was in bigger denial than myself. He did not follow me to the bathroom, he could not feel what was happening with my stomach. All he knew is that the person I once was and the way I cooked, the way I ate, was changed. It is alot of adjustment for everyone to deal with.

Best to you both! Really, once you make the adjustment and you feel the difference for youself, you will not want to go back to living the way you were.

[IrishHeart]

Hi--

I will not be of much help to you as far as shopping as I am new to all of this as well. I do, however feel for you as far as having a unsupportive spouse. I don't know how to "make" them see that we didn't ask for this, it just "is". I already feel like a burden without any comments from him. I don't like the fact that I cannot eat what I used to. I am also thinking about waiting until later to start gluten-free. I know I need to try now ( or keep trying) I just don't want to fight about it. I am tired of the whole thing already and I haven't even started. Most of the reason I feel this way is lack of support. If I could get him to give me some support and positive comments it would sure be easier.

Just know that I am thinking about you I hope your situation gets better.

heyteach...see my post above. Maybe it will get you started with shopping and menu ideas. It is not as restrictive and difficult as it seems in the beginning and most foods are the same ones you already eat!

Stop viewing yourself as a "burden", honey---this is not your "fault" and it is not the end of the world, even if it seems like it is right now. No one ask for an autoimmune disease, it just happens. We have the power to keep it in remission by diet.

You can do this and we can help.

Most importantly, your health is the most important thing and you need to come to a place of acceptance so you can feel better and get on with your life. Your husband may come around if you BOTH see that it is a manageable dietary change--one that is saving your life.

Best wishes.

[Celtic Queen]

My husband was a bit unsupportive at first too. And part of it was my own fault. For years I've tried a bunch of different diets to find out what was wrong with me. You see, I knew it was food related, but I couldn't put my finger on it. So he had seen me try all this stuff and give it up after a month or two because it wasn't helping me. But when I started gluten-free, I knew that this lifestyle change is one that would last my whole life, because I felt so much better just a couple of weeks after being gluten-free. I've been on the diet 5 months now, and my husband is starting to come around. He sees me being very careful about what I eat, doing a lot of research, buying gluten free products at the store, being careful when we go out to eat, etc. Lately he's been sweet enough to bring home some Woodchuck Cider for me when he goes out to buy beer. That's his way of showing me he takes it seriously now.

At this point, my husband still eats gluten. I believe it's his choice whether he wants to give it up or not and I'm not going to force him. But I am the one who does the majority of the grocery shopping and almost all of the meal cooking, so I am starting to limit the amount that comes into the house. One thing that has helped him, I think, is that he's not really missing the gluten when I cook. He still gets a tasty (gluten free) meal for dinner and he has his cereal and bread for sandwiches. Since his diet hasn't changed that radically, it's been easier for him to adjust.

You have to realize that this is a big change for him too. It's scary to think of your spouse having a "disease." And I think men get frustrated when they can't do anything to "fix" a problem. He may be frustrated that the can't make you better. It may take him a while to get adjusted. Hang in there. Hopefully he'll come around when he realizes how seriously you're taking this. The change can seem overwhelming to both you and him at first, but after a while you'll quickly know what foods you can and can't eat and it won't be so overwhelming for either of you.

[domesticactivist]

I think it's pretty normal for a lot of people's partners to be skeptical and take some time to adjust to any kind of change. Have you told him that you feel that you need support in dealing with your diagnosis? Have you told him what specific things he can do to help you feel supported? Have you told him that you've been feeling like a burden? It could be that he just doesn't know how to show his support and needs to be gently guided in the right direction. My partner and I can both need those kinds of reminders sometimes.

However, I think it's really important to look at that support or lack of support in the context of the whole relationship.

First set of questions:

• Does he take your feelings into consideration on other topics?
• Is he been generally supportive of your hopes and dreams?
• When you specifically ask him for help is he usually willing?
• Does he ask for and listen to your opinion on decisions that affect both of you?
• Are you able to talk to him about emotional things?
• Does he sometimes willingly give up what he wants so that you can have what you want, without guilt tripping you about it?
• Does it bring you comfort to confide in him?

Second set of questions:

• Do you often find yourself giving up what you want to avoid a conflict?
• Do you usually find yourself thinking of what he wants before thinking of what matters to you?
• Do you avoid bringing things up because you are afraid of what his reaction will be?

If you got mostly "no" answers to the first set, and mostly "yes" answers to the second set of questions there may be a bigger problem to deal with.

[IrishHeart]

And I think men get frustrated when they can't do anything to "fix" a problem. He may be frustrated that the can't make you better. It may take him a while to get adjusted.

This is so very true. My husband watched helplessly while I deteriorated, at one point saying to one doctor, "I just want my wife back." I felt my heart break. He had to help me get dressed when I was so bad and he held my head while I was ill, applying cool compresses so I would not pass out in the bathroom. He made me water/salt/sugar drinks to keep my electrolytes balanced (he's a chemist:) and on and on and on...without him, I might have given up.
He embraced the gluten free diet with me because it saved my life and he worried about CC. I did not ask. He just did it.

We lived in hell for nearly 4 years.... and now, he has his wife back

[love2travel]

Irish and I are married to brothers. Well, not really, but my husband has had to come home from work many times to walk me to the bathroom (this is chronic pain stuff, not just celiac stuff). He had to work 100-hour weeks (the nature of the work), come home, cook, clean, etc. for three years. I cannot recall his ever complaining about it. Now I manage and cope far better with my pain so I do what I need to do and cook at least 6 days a week. Anyway, pain is no longer my focus. We are also hiring a housekeeper.

Our home is 100% gluten free. My husband eats gluten foods at work the odd time (he usually takes yummy dinner leftovers from home) and at work functions. He wanted to go gluten free at home to support me and make things far easier for me. And I adore him for it. He is incredibly careful and knows just as much about celiac as I do. Thankfully he is a good listener as I fill him in on Celiac.com regularly.

When I was diagnosed with celiac and also fibromyalgia this year my precious husband held me close, listened while I cried/talked for hours and kept asking if there was anything he could do to help. He would surprise me with Amazon book orders or a new cooking ingredient - things just to make life a little easier. He makes me feel important and special and needed. It is crucial to feel needed. I do what I can - what gets done does; what doesn't, doesn't. That is how it is.

When we eat out he is on the phone with the chef, discussing cross contamination and so on. It is very sweet and kind. Thankfully most high-end restaurants get it and they are such a treat. My husband constantly tells me and makes me feel as though I deserve it. He spoils me but I spoil him back!

Like Irish said of her gem of a husband, my husband just wanted me back. Well, here I am!

Perhaps things will improve for you as this becomes routine and part of daily life. It is possible!

Edited by love2travel, 06 December 2011 - 06:23 PM.

[IrishHeart]

Hubs had to restrain himself on more than one occasion from doing bodily harm to insensitive, arrogant doctors ....

He is also our grocery shopper and READS LABELS like a pro. I taught him. He reads every damn article I show him and like LOVE2TRAVEL's man, he knows what goes on here on celiac.com. His bread recipe has made the rounds.

Anyone's partner who takes the time to learn about celiac will be more supportive as you go along.

You guys are in this TOGETHER.

[alex11602]

My husband has been extremely supportive especially since he saw how sick I and our youngest was. He also saw the improvement in our oldest. At this point he is also gluten free...it started with him doing it at home to be supportive, but he found he feels better.

Even now though I have anxiety about going out so he does all the food shopping for me and he cooks for me when I am just too tired or upset. He has been a rock through all of this and is extremely helpful.

[Jai]

Hi Sorry about your struggle. I was in a similar situation where we did not have the 100% YES you have celiac diagnosis. Luckily, my husband was supportive none the less and often believes it more than I sometimes do....
I also have to family history, and symptoms, but inconclusive blood tests.
Do some research on the internet about false-negatives results, clinical trials (if you stop eating it and get better, there's your answer.)
It's too bad that he's not more supportive on his own, but work at it. Prove it to him! And I say don't wait to go gluten-free. Everyday you keep eating you're losing a day towards your full recovery!
Good luck!

[Desi83]

As long as you aren't about to take more tests, I think you should go gluten free asap and tell your hubby to deal with it. You want to feel better, right? But, I have heard that if you go gluten free before being completely diagnosed with it, it can cause the test to become negative. But I know how you feel. I feel like no matter what anyone says, no one around me really takes this disease seriously b/c it has become such a buzz word now. If you were diabetic, would he not support a diabetic diet for you?

[Celiac Maniac]

Personally, for me, it was easy.

I do most of the cooking and, since my DH is from Southern India, I just told him that we'd need to eat a lot more South Indian (rice-based) food, like pilafs, and dosas, and uttappam. He thought it was a great idea.

Yes, the commercial gluten-free foods are darned expensive. We eat a lot of rice, potatoes, corn tortillas, and cornbread for carbs. Proteins and fruit and veg are the same as they ever were.

As a matter of course, we avoid the commercial gluten-free foods. A lot of them are based either on white rice flour or one of the starches (tapioca, potato, etc.) That's just like spooning white sugar into your body.

A rice cooker is an excellent investment. Cooks brown rice beautifully.

TK Kenyon

[bumblebee_carnival]

I was lucky that my husband is really supportive. I think he saw how sick I was and it scared him a little. He's seen such a huge change in me for the better that he is quite a cheerleader for me. He's willing to go out of his way to help me find things I can eat.

The only thing is he's said a couple of times, "Well, when you are all healed up, we can have pizza/cake/etc. again." At first I thought he was joking and then he said it a few more times and I realized he was serious. I had to tell him that it doesn't really work that way and I am off gluten for life. I'm not sure if he believes me or not, but he did stop saying that.