How To Handle The Ups And Downs?

[Stacie H.]

Whoah...what a couple of days.

DH has had a bad week, topped off with the fact that a computer he was building failed miserably. I'm not happy about the money lost on that either, but he thinks he can tear it apart and recoup a lot of it. Fine, he can afford that. Then a coworker of his had a birthday yesterday, and someone brought in a cake and kolaches...which DH couldn't eat.

But the stress of the week caught up to him yesterday, and he took it out on me....of course. He's angry that he can't eat anything, and he's been feeling a little sick the past couple of days. I'm not sure what that's about, except that he has had what we thought was safe cold cereal....Rice Chex. Now I read that it has malt in it...so maybe that's bothering him?

I'm tired. I've spent the last 3 weeks of our newly-gluten-free life cooking like crazy and trying to keep some variety in our meals. I know he's just mad at the situation and not me, but it's hard to be on the receiving end of that when you're doing your best to help someone feel better!

He did come and apologize to me last night. He said it's been building for the past 3 weeks and admitted that the computer fiasco didn't help.

I gutted our pantry today and took out everything that was on the do-not-eat list, as well as anything I had doubts about. I need to find some type of rice cereal to mix w/ his Nature's Path Honeyed corn flakes...he likes to mix his cereals. It looks like this is going to mean another trip to Whole foods. Fun. I wish they'd build one over in our end of the city.

I'm kind of at a loss...I'm hoping he just needs more time until he feels better more of the time??? Also, in the event of more birthday celebrations at the office, what could he have eaten? I'm thinking I could e-mail the office manager and suggest something for the future. It's a very small company (6 employees), so I think it would be doable....except that the office manager and my DH don't get along that well, so she may not be too much help.

[amybeth]

The ups and downs will continue for a while. The first time I hit the grocery store after going gluten-free, I read and read labels (I was there for 2 hours). I ended up crying in the middle of the aisle and all I had in my cart was some rice cakes and some ketchup. That was a low point.

However, Later, I went to Bonefish Grille to eat with my family and I was able to remain at the table, eat a filling meal, and not feel absolutely horrible....That was a high point.

Both times, I came to this message board...whether I shared or not, just seeing that other people, their friends and their families were going through the same thing was a HUGE help! I don't know where I would be without these folks -----

I eat a cereal called Perky-O's. They're gluten-free cheerio type things. The apple cinnamon flavor is GOOD! They're expensive, but they definitely beat my cravings for cereal.

Wishing you both lots of luck with the diet (and the computer!)

[Ursa Major]

Stacie, I am sorry things haven't been going too well. Unfortunately, that is to be expected at first! Of course, when other stress comes up (like the computer thing) that isn't helpful at all.

It takes time to get the hang of the diet, and it takes time to heal to really feel better. And yes, malt is usually made from barley and wouldn't have helped at all. I can't suggest any cereals, since I can't have any grains at all, but I am sure others will have suggestions for you.

Would you know about birthdays at the office ahead of time? You could just send some gluten-free baked goods along that day for your husband to eat, so he has a nice treat, too. If those events aren't usually known ahead of time, you could call the office manager and ask her if she could give warning a couple of days in advance, so you can be prepared.

[skoki-mom]

Hi. I've been doing this for almost a year, and I still have a lot of ups and downs, mostly downs I'm afraid to say. I've been compliant to the diet. I never did have any symptoms and despite the number of people who have said I will notice symptoms I never noticed before will be gone, I can quite honestly say I don't feel any different. Then again, I never felt sick in the first place, it was a fluke that I found out, so that is just me. Please just try to understand that the psychological part of this disease really isn't about food. It's about loss. Just try to be there as much as you can, sounds like you are doing a wonderful job. If he is like me, he won't ever "like" the diet, but he'll learn to live with it.

[2kids4me]

It is hard - the adjustment - it seems everything is affected - office parties, a simple invite to lunch - presents challenges.

Natures Path makes arice ceral called "crispy rice" , kids like it and I use it to make Crispy rice squares, for last minute BD parties I keep gluten-free choc cupcakes in the freezer . If you know about the party ahead of time - it works but "surprise parties" are annoying from the kid's perspective.

Adult or child - it is a difficult road and you grieve the loss of what would be called "normal".. soon thoguh normal takes on a new meaning. My kids are happy with all the choices they have..they can still eat all the fruit and veges they want,gluten-free baking (cookies, cake), potatoe, rice, meat, milk, cheese, varieties of ice cream that are gluten-free, etc.

They still have the occasional day where everything goes wrong and that is when they focus on their celiac disease or the diabetes. Then I bring out a bowl of popcorn or make a milkshake or a bowl of fresh strawberries (both kids LOVE them) and we have snack then go for walk with the dog, a bike ride or something physical. the natural endorphins from exercise makes them feel better plus they got to have something fun to eat.

90% of the time it works but there will always be times where they wish it would go away (esp the diabetes) and those times , kids or adults may just need some space or a hug or whatever.

He appreciates your support and that is what counts, this journey is a solitary one cause though you are doing everything to help him, he knows you still have options that he does not - seems an immature view at times - but it is understandable, real and normal.

Acknowledging how hard it must be and supporting the quest for healthy eating will be about all you can do.

[floridanative]

When I was dx'd in Jan of this year, I thought it would be impossible to learn all the nuances of the gluten free diet/lifestyle. Five months later I still learn something new each time I meet with my support group which is why I make those meetings a priority right now. It takes a while to find out what is good adice and what is a Celiac myth....

For cereal I eat Ehwron gluten-free rice cereal - they make a reg. non gluten-free version as well so make sure the box says gluten free. It takes like Rice Crispies to me.

As for the parties at work, try and find out when cake will be brought in and send your guy in with some gluten-free baked goods - 123 Gluten Free brownies or apple spice pan bars are so good, no one will believe they are gluten free....IF he shares them that is. For me I found it difficult to share my expensive gluten-free food with others at first. I was actually proud of myself when a friend was over and I offered her a gluten-free brownie that I'd just baked. When she devoured it and proclaimed how great it was, I offered her one to take home. Sounds silly but that was a big step for me at the time.

Good luck to you and know it will get easier but there is an adjustment period that is different for everyone, but difficult for most of us.

[Guhlia]

If you don't have a good food store close by to buy your gluten free goodies at, using an online mail-order type store might benefit you greatly. We use www.shopbydiet.com and absolutely love them. It's a little more expensive then it would be going to the grocery store, but convenience is worth it sometimes. It would likely help you get over the hump of the diagnosis. Somehow it's strangly uplifting to be able to choose from hundreds and hundreds of gluten free items and have them delivered right to your doorstep.

[mmaccartney]

and he took it out on me....of course. He's angry that he can't eat anything, and he's been feeling a little sick the past couple of days. I'm not sure what that's about, except that he has had what we thought was safe cold cereal....Rice Chex. Now I read that it has malt in it...so maybe that's bothering him?

Boy, you and my wife need to hook up. When I was sick, I was mean and unfortunatly she was the center of it. I almost lost her, thankfully we found out what was wrong and am getting better. When I do get glutened now, I can see that I'm overly mean and angry about whatever is happening. I can see it now, and change the course of action. Back then I didn't have a clue what was going on.

I gutted our pantry today and took out everything that was on the do-not-eat list, as well as anything I had doubts about. I need to find some type of rice cereal to mix w/ his Nature's Path Honeyed corn flakes...he likes to mix his cereals. It looks like this is going to mean another trip to Whole foods. Fun. I wish they'd build one over in our end of the city.

We have to drive at least 25 miles to get to Wild Oats and Trader Joes, nothing good is close by. Wondering if the franchise and I can open one in my hometown....Cereal is not a great thing for Celiacs. The ones that I know are still OK: Cocoa Pebbles, Fruity Pebbles, Perky-O's, Heath Valley Corn Crunch 'ems, Heath Valley Rice Crunch 'ems, and Erewohn Rice Twice and other Erewohn cereals.

Try alot of the online stores, sure the shipping is costly, but you can buy a 6 month supply of some things (like Tinkyada pasta) at one time as the shelf life is quite long, and then the shipping isn't soooo bad...

I'm kind of at a loss...I'm hoping he just needs more time until he feels better more of the time??? Also, in the event of more birthday celebrations at the office, what could he have eaten? I'm thinking I could e-mail the office manager and suggest something for the future. It's a very small company (6 employees), so I think it would be doable....except that the office manager and my DH don't get along that well, so she may not be too much help.

If he is like me, yes more time will help!! I find that the longer I am gluten-free the better control I have over my emotions, and the better our relationship. We used to fight 4-6 times per week, now it might be once a month. Sure we have disagreements, but they don't turn into fights like they used to!!!

Try your hardest to stick it out. My wife and I almost seperated as a result of this disease, and his anger, like mine, might be another symptom. Without her and my family to support me, I don't know what would have kept me going. He needs you now more then ever, though it might not seem like it at times; perhaps you see more of his anger as he is most comfortable around you, and hence can show his emotions. I remember times where I was angry that there wasn't much to eat; her position was simliar (though I didn't see it until later) as she was angry that she didn't know what to feed me!!

As far as the birthday at the office.... one thing he will need to come to realize is that the "real world" does not usually care, and we cannot expect much out of them. I keep a survival kit of food and such in my car, when there are celebrations at work, I chow down beforehand and then just participate. We cannot expect more then that. If we happen to get more, then we should consider ourselves blessed.

[Stacie H.]

Thanks everyone!

Things have calmed down now. I was going to go to Whole Foods after work today, but we've had some heavy rains and flooding throughout Houston today, so I decided just to come home. DH doesn't eat breakfast during the week, anyway, so I can go tomorrow or the next day. I plan to buy more than one box of whatever I choose, so we'll be stocked for a bit.

I really do think he appreciates what I'm doing for him. I keep reminding myself that I don't really know what it feels like to be sick as he is. As one of you mentioned, even though I do eat gluten free for the most part now, I can eat what I want.

[skoki-mom]

. As one of you mentioned, even though I do eat gluten free for the most part now, I can eat what I want.

That is the clincher, right there. It's in the fact that the choice has been taken away. Forever and ever, amen. Even though you do eat gluten-free mostly, it won't hurt you or make you sick if you get a crumb in there. You can grab a burger on the run when you are alone. These are the nuances of this disease that most non-affected people just "don't get". You are an awesome wife to be so supportive, and I hope your husband feels better soon.