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New Here, Wife Has Celiac

notkuroda

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notkuroda Apprentice
notkuroda
Posted

Hi everyone, thanks for giving me a place to talk with those who understand.

My wife was diagnosed about a year ago. She is also hypothyroid and has neurocardiogenic syncopy(fainting spells). The time leading up to her diagnosis was a very painful one. She had no energy, and frequently broke out in painful rashes(dh). The gluten free diet has helped her a lot, but she still gets contaminated. Our whole family has gone gluten free(I have two daughters from my previous marriage that is with us on weekends and vacations). We just don't want to take the risk of anything getting in her system. We don't eat out anymore and rarely eat as guests of friends and family.I still drink beer, but understand I definitely can't kiss her when I do, usually not until the next day and some vigarous cleaning. Her contamination cycle is heartbreaking. When she gets it, she breaks out in dh. Then she has about a week where her energy is completely sapped, and she gets depressed. Our nutritionist confirmed that when she's contaminated, she can't absorb her thyroid medicine, so she has no metabolism. Every time the dh comes back, we know we're in for a rough week.

It took me awhile to figure out the lifestyle changes that we would both have to make in order for her to get healthy. She's about to turn 40, and she's had this all her life. Her doctor told her it would take a couple of years to repair all of the damage that's been done to her system. It's difficult for me, although not nearly as difficult as it is for her. I think people need to come to the realization that this is not an allergy, or a digestive problem. This is a DISEASE, like cancer. It needs to be treated with the same kind of vigilance. It's tough, sometimes I wonder if I have the strength to deal with it the rest of my life. But she's the best thing to ever happen to me, so we keep pushing onSo please, cut your SO's a little slack. Explain what you're going through in no uncertain terms, and let them know that this is a lifestyle change. I don't know that everyone needs to live in a gluten free household, but I know that I would do everything in my power to help make sure she never gets contaminated again. But when she does, I summon all the strength that I have to help her get through it.

Hope you don't mind if I post this in the "families" section as well.

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twe0708 Community Regular
twe0708
Posted
Hi everyone, thanks for giving me a place to talk with those who understand.

My wife was diagnosed about a year ago. She is also hypothyroid and has neurocardiogenic syncopy(fainting spells). The time leading up to her diagnosis was a very painful one. She had no energy, and frequently broke out in painful rashes(dh). The gluten free diet has helped her a lot, but she still gets contaminated. Our whole family has gone gluten free(I have two daughters from my previous marriage that is with us on weekends and vacations). We just don't want to take the risk of anything getting in her system. We don't eat out anymore and rarely eat as guests of friends and family.I still drink beer, but understand I definitely can't kiss her when I do, usually not until the next day and some vigarous cleaning. Her contamination cycle is heartbreaking. When she gets it, she breaks out in dh. Then she has about a week where her energy is completely sapped, and she gets depressed. Our nutritionist confirmed that when she's contaminated, she can't absorb her thyroid medicine, so she has no metabolism. Every time the dh comes back, we know we're in for a rough week.

It took me awhile to figure out the lifestyle changes that we would both have to make in order for her to get healthy. She's about to turn 40, and she's had this all her life. Her doctor told her it would take a couple of years to repair all of the damage that's been done to her system. It's difficult for me, although not nearly as difficult as it is for her. I think people need to come to the realization that this is not an allergy, or a digestive problem. This is a DISEASE, like cancer. It needs to be treated with the same kind of vigilance. It's tough, sometimes I wonder if I have the strength to deal with it the rest of my life. But she's the best thing to ever happen to me, so we keep pushing onSo please, cut your SO's a little slack. Explain what you're going through in no uncertain terms, and let them know that this is a lifestyle change. I don't know that everyone needs to live in a gluten free household, but I know that I would do everything in my power to help make sure she never gets contaminated again. But when she does, I summon all the strength that I have to help her get through it.

Hope you don't mind if I post this in the "families" section as well.

Wow! What a lucky wife you have! I wonder if I am getting contaminated by my husband when he drinks beer? We clearly know that we can't kiss unless he has brushed his teeth, but you say you wait a day if you have a beer. My husband drinks beer every night! Not an alcoholic but likes one or two after work. I wonder if brushing his teeth like everyone else is enough? I am almost certain he doesn't do a special brushing so that I am not contaminated. Does anyone know if he really needs to brush his teeth/insides of cheeks/tongue? Well I just wanted to compliment you on your post and commitment to your wife and her disease. Good luck!

jackay Enthusiast
jackay
Posted

Your wife is so lucky to have you! I do not get any support from my dh. However, being gluten free seems to be giving me my life back. Right now my health, physical and mental, is what is most important. I am just hoping my dh comes around.

I never considered beer as being a problem. I hate beer so never wanted to kiss after my husband drank it.

GFinDC Veteran
GFinDC
Posted

There are gluten free beers out like Redbridge. Might be worth trying that out.

You will probably be better off health wise yourself if you follow the same diet your wife does. Lots of us do a mostly whole foods diet and avoid processed foods. That eliminates a lot of chemical preservatives, dyes, and other stuff from our bodies. Just a thot.

Thanks for posting. You are right about it being quite a change. Most of us are so used to eating whatever is handy and not really thinking about it. That all changes when you realize what you eat can make you sick for a week or more.

There are restaraunts with gluten free menus around. Outback steakhouse, for one, P.F Changs' etc. Quite a few more than those actually. So you can eat out sometimes.

I hope your wife is a member here or joins us. We have lots of people with good tips for living gluten free.

Welcome and good to have you around!

buffettbride Enthusiast
buffettbride
Posted

My hubby is gluten-free and I am not. We don't keep gluten in the house (our daughter is also gluten-free), but when we go out, I will eat gluten. I try not to make a big deal of it and we always go to gluten-free-friendly eateries.

When we go out for a nice evening that will involve a lot of kissing and other stuff later, I do stay gluten free and/or bring a toothbrush and mouthwash to show that I'm ready for action, if you know what i mean. ;)

It means a lot to him and keeps the marriage in a happy place. :D

notkuroda Apprentice
notkuroda
Posted
  • Author

from what I understand, this disease effects different people in different ways. We are going gluten free because it seems that it's so easy for my wife to get contaminated, we just don't take the chances. She's also gotten contaminated eating off the gluten free menu at Outback, Uno's, and others so it's not worth it. You just never know who really understands the risks of cross contamination. We may be able to get a little less stringent after she's been healthy for awhile.

And Red Bridge, that stuff is awful!!!Hope they come up with some alternatives.

Thanks for the kind words. I encourage her to visit the forum often. But I find myself having to play nurse often so I do a lot of research for her

JNBunnie1 Community Regular
JNBunnie1
Posted
from what I understand, this disease effects different people in different ways. We are going gluten free because it seems that it's so easy for my wife to get contaminated, we just don't take the chances. She's also gotten contaminated eating off the gluten free menu at Outback, Uno's, and others so it's not worth it. You just never know who really understands the risks of cross contamination. We may be able to get a little less stringent after she's been healthy for awhile.

And Red Bridge, that stuff is awful!!!Hope they come up with some alternatives.

Thanks for the kind words. I encourage her to visit the forum often. But I find myself having to play nurse often so I do a lot of research for her

Just so you know, Woodchuck cider is gluten-free and Bard's Tale beer is gluten-free. It's not great, but it's better than Redbridge. Woodchuck, on the other hand, is quite good, and not too sweet.

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GFinDC Veteran
GFinDC
Posted

Hi again,

Well, the Redbridge didn't seem to great to me at first either. After a few times though it got to be ok. There is also a Belgian beer called Green's. Expensive stuff, but it is more like the heavy beers.

You are right about celiac having different affects on people. Some people have very few GI symptoms, and others have them bad. Plus there are all kinds of non-GI symptoms that people get.

I don't eat out much myself, very rarely in fact. It is safer to eat at home and make the food from scratch.

I wanted to mention vitamin pills and medicines as a possible source of gluten. Flavored coffees and teas are another possible source.

We also are often low on certain vitamins, so her doctor should test her for that. B vitamins, D, K, iron should be verified. Liquid B-12 is a good thing for people starting out to try.

The healing time varies a lot. Some of us feel better right away, but it can take a year or more to feel better for others.

Happy Holidays!

notkuroda Apprentice
notkuroda
Posted
  • Author

She takes lots of supplements to get her levels where it needs to be, we research everything that she takes. It's hard, sometimes you just never know. Plus it's tough for me cuz I find myself telling her NO a lot of the time. Last night we were at a game and she grabbed a toothpick that had 2 cherry tomatoes and two pieces of fresh mozzerella. She was just about to eat it when I said NO!!! She asked what the harm was, I said she didn't know if it was marinated in anything, how it was prepared, etc. Bums her out, but again it's a new lifestyle

Rothane Newbie
Rothane
Posted
She takes lots of supplements to get her levels where it needs to be, we research everything that she takes. It's hard, sometimes you just never know. Plus it's tough for me cuz I find myself telling her NO a lot of the time. Last night we were at a game and she grabbed a toothpick that had 2 cherry tomatoes and two pieces of fresh mozzerella. She was just about to eat it when I said NO!!! She asked what the harm was, I said she didn't know if it was marinated in anything, how it was prepared, etc. Bums her out, but again it's a new lifestyle

My husband is the same way -- he says I'm much more vigilant about it than he is. He was diagnosed with celiac disease three months ago. We're also completely gluten-free at home -- except my breakfast cereal, and beer, which I still drink occasionally. He's switched to cider, since it's much better than any of the gluten-free beers available.

It's a bit different because he is nearly completely asymptomatic. He was diagnosed as a result of trying to figure out why an otherwise healthy man who rides his bike an average of 150 miles a week had anemia severe enough that he was nearly hospitalized. He didn't feel bad before being diagnosed, and he says he really doesn't feel much different after being gluten-free for three months. But he's usually very good about it because he knows that damage is done by gluten, even if he doesn't feel it.

We've eaten out several times and have gotten acquainted with restaurants that are gluten-free. So far, no issues, but then again, he doesn't really have many symptoms to begin with. We have discovered that if he eats a very wheaty object he will have noticeable digestive issues -- he ate a few wheat crackers that came with a gourmet cheese package his father sent him for his birthday and he could tell afterward that it didn't agree with him. However, he has also drunk one regular beer in the last month and he said he felt absolutely nothing. So it's very individual. So far, I haven't had to resort to not kissing him after I've eaten wheat or drunk a beer.

buffettbride Enthusiast
buffettbride
Posted
Hi again,

Well, the Redbridge didn't seem to great to me at first either. After a few times though it got to be ok. There is also a Belgian beer called Green's. Expensive stuff, but it is more like the heavy beers.

You are right about celiac having different affects on people. Some people have very few GI symptoms, and others have them bad. Plus there are all kinds of non-GI symptoms that people get.

I don't eat out much myself, very rarely in fact. It is safer to eat at home and make the food from scratch.

I wanted to mention vitamin pills and medicines as a possible source of gluten. Flavored coffees and teas are another possible source.

We also are often low on certain vitamins, so her doctor should test her for that. B vitamins, D, K, iron should be verified. Liquid B-12 is a good thing for people starting out to try.

The healing time varies a lot. Some of us feel better right away, but it can take a year or more to feel better for others.

Happy Holidays!

When Hubby went gluten free, he was definitely not a fan of the gluten-free beers. So, he switched to Strongbow cider. It has the same sensation as beer (bubbly, etc), but it's not trying to be something it isn't. He's been pretty happy with it. So happy, that I am replacing the kegerator full of beer we used to have with Strongbow for Christmas.

The fact that you are already being SO understanding and doing some research means a LOT. There are so many stories of spouses and/or one parent just not buying into the whole gluten-free thing, and I can only imagine how frustrating that is.

Mskedi Newbie
Mskedi
Posted
from what I understand, this disease effects different people in different ways. We are going gluten free because it seems that it's so easy for my wife to get contaminated, we just don't take the chances. She's also gotten contaminated eating off the gluten free menu at Outback, Uno's, and others so it's not worth it. You just never know who really understands the risks of cross contamination. We may be able to get a little less stringent after she's been healthy for awhile.

And Red Bridge, that stuff is awful!!!Hope they come up with some alternatives.

Thanks for the kind words. I encourage her to visit the forum often. But I find myself having to play nurse often so I do a lot of research for her

My husband continues to drink normal beers, too, and I don't blame him -- there are slim pickings in the gluten-free category. I have found a few that I like: Greens and St. Peters both make good ones that are more like the ales I enjoyed before I had to stop ingesting gluten.

Anyway, I just wanted to commend you for being so supportive of your wife. My husband is equally supportive and I can't even describe how much that means to me.

  • 1 month later...
GFzinks09 Apprentice
GFzinks09
Posted

Good for you first of all! My boyfriend has supported me since day 1 (we started as friends first right when I figured my diagnosis out). Luckily he has quite a few OCD tendencies and lost is on me one day for not being careful enough. Although I am never even tempted by regular pizza (love gluten-free pizza) it was hard at first to really go the whole way - throwing out my shampoo etc. The support of your loved ones is what really gets you to the final step. I would say on my own I could only make it the 80% but changing those other pieces of my life made it real. However, he and my dad still ask for a "side of gluten" or "I'll take her gluten" when we go out to eat. I promise you it gets old :)

There are so many options now for going out to eat. More so than even a year ago. We do our best to have nights out but living in a major city helps with having more options. NYC is basically the holy grail for celiacs, our vacation there was like we went to the promised land.

I hadn't realized for a long time that beer could be a problem for me while we were out and we couldn't figure out why I was still getting sick. Careful of the placement of the ice troughs at bars - could make you mixed drinks no longer gluten free. We always get the covered straws and try to keep the 20-something lifestyle going.

Us celiacs are lucky to have people who understand and support us but I would never ask him to drink Redbridge. HE did once and lied through his little glutteny teeth that it tasted great - I tried it and laughed my face off so he fessed up. He's still a Sam guy.

GFzinks09 Apprentice
GFzinks09
Posted

Just so you know, Woodchuck cider is gluten-free and Bard's Tale beer is gluten-free. It's not great, but it's better than Redbridge. Woodchuck, on the other hand, is quite good, and not too sweet.

Magners cider!!! Maybe because it's good, maybe because I'm irish. And it's not as high in calories as woodchuck!

  • 1 month later...
buffettbride Enthusiast
buffettbride
Posted

Magners cider!!! Maybe because it's good, maybe because I'm irish. And it's not as high in calories as woodchuck!

Strongbow is a gluten free cider as well.

idonteatwheat Rookie
idonteatwheat
Posted

**claps** I just applaud you for going above and beyond for her.

I had a hard time at first too, it has gotten better for me. I think part of it was learning the signs of when I was eating something that wasn't good for me so I could stop before I had eaten a lot of it. I suppose in a sense I am lucky that way that I get this awful mucous icky feeling and it is a sign to just put down the fork. Could it also be that she is eating some other things that are causing her system to be on alert? I know I cannot go near MSG or Splenda, both give me horrible gastric pain. I didn't know about the Splenda until I bought some stevia and ran out and reverted back to it (OK even then I was a little slow figuring it out). But once I did and avoided it I am doing much much better, I should probably knock on wood but it has been like 2+ months since I had one of those awful days long gluten episodes (which would happen much more regularly)

I also switched to a gluten free shampoo and conditioner and body wash. I have had issues off and on with scalp DH and itching and this has really cleared up my skin and breakouts. I just think that too has to get into our bodies either by oral ingestion on just causing inflammation. I don't buy the theory that celiac's only are effected by gluten that is in food.

She takes lots of supplements to get her levels where it needs to be, we research everything that she takes. It's hard, sometimes you just never know. Plus it's tough for me cuz I find myself telling her NO a lot of the time. Last night we were at a game and she grabbed a toothpick that had 2 cherry tomatoes and two pieces of fresh mozzerella. She was just about to eat it when I said NO!!! She asked what the harm was, I said she didn't know if it was marinated in anything, how it was prepared, etc. Bums her out, but again it's a new lifestyle

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