Celiacs And Relationships

[sfamor]

Hi everyone- this is my first time at the message boards and first time posting in general so my apologies if this topic as already been thoroughly discussed. I'm 27 and was diagnosed with Celiacs through intestinal biopsy just at the end of May this year and went gluten free immediately. I'm still having a lot of symptoms unfortunately though. I am super lucky to have a partner who is thrilled to support my gluten free diet. We live together and she eats 100% gluten free while at home and has never once complained. She also advocates for me when we go to restaurants and will talk to the servers about my strict need for gluten free (I'm pretty shy so I'm still getting used to speaking up about this!).

So...the issue I'm having is that while she is so supportive, I also feel like she is slowly having less and less tolerance for my symptoms. I am often tired, anxious, and have really bad GERD. I think she thought that getting the diagnosis and being gluten free would solve these symptoms. However, 6 months later and I still have them. I know it's possible that I have other issues besides Celiac's such as food allergies and am looking into that, but my main concern at the moment is that I hate that my symptoms are causing strain in my relationship. My girlfriend is generally patient and tolerant, but I can see when she's trying to hide her disappointment when I feel too tired or not feeling well enough to do some activity that she has planned. I also don't feel like she understands when I try to explain the severity of my symptoms and how it effects me. Although it is getting better, being productive at work has always been a challenge because I'm usually so tired I can barely keep my eyes open and have awful "brain fog." When I try to explain this to my partner her response is usually something like that she was tired too at work too that day. While I don't want to invalidate her experience of being tired, I also feel frustrated with her not knowing or understanding how hard this really is. And it's not that she is unfamiliar with Celiacs, she's learned a lot about it since my diagnosis, it's just she's not experiencing it herself.

I guess my questions are: 1. How do your symptoms effect your relationships and what helps you and your partner cope? and 2. What do you do about your partner not understanding your symptoms and how they are severely impacting you?

[Loey]

Hi everyone- this is my first time at the message boards and first time posting in general so my apologies if this topic as already been thoroughly discussed. I'm 27 and was diagnosed with Celiacs through intestinal biopsy just at the end of May this year and went gluten free immediately. I'm still having a lot of symptoms unfortunately though. I am super lucky to have a partner who is thrilled to support my gluten free diet. We live together and she eats 100% gluten free while at home and has never once complained. She also advocates for me when we go to restaurants and will talk to the servers about my strict need for gluten free (I'm pretty shy so I'm still getting used to speaking up about this!).

So...the issue I'm having is that while she is so supportive, I also feel like she is slowly having less and less tolerance for my symptoms. I am often tired, anxious, and have really bad GERD. I think she thought that getting the diagnosis and being gluten free would solve these symptoms. However, 6 months later and I still have them. I know it's possible that I have other issues besides Celiac's such as food allergies and am looking into that, but my main concern at the moment is that I hate that my symptoms are causing strain in my relationship. My girlfriend is generally patient and tolerant, but I can see when she's trying to hide her disappointment when I feel too tired or not feeling well enough to do some activity that she has planned. I also don't feel like she understands when I try to explain the severity of my symptoms and how it effects me. Although it is getting better, being productive at work has always been a challenge because I'm usually so tired I can barely keep my eyes open and have awful "brain fog." When I try to explain this to my partner her response is usually something like that she was tired too at work too that day. While I don't want to invalidate her experience of being tired, I also feel frustrated with her not knowing or understanding how hard this really is. And it's not that she is unfamiliar with Celiacs, she's learned a lot about it since my diagnosis, it's just she's not experiencing it herself.

I guess my questions are: 1. How do your symptoms effect your relationships and what helps you and your partner cope? and 2. What do you do about your partner not understanding your symptoms and how they are severely impacting you?

Hi,

I'm sorry that you're having a rough time of it. It does sound like your girlfriend is there for you but remember that this disease isn't straight forward and that, in itself, can be hard for anyone to understand. It can take up to two years (I've been told) to completely regain health after being totally gluten free. I was only diagnosed in June 2010 after being bedridden for 6 weeks. We literally moved to a new town/state the day after I got all of my test results. My old GI thought that I had this disease for decades.I also recently found out I have an ulcer. Many of us have food allergies. So you are right that there may be ore to your health issues than Celiac.

Perhaps it would help for her to go to the thread that they have on the forum called "friends and loved ones of celiacs." It might give her support and answer some of the questions she has but doesn't want to ask. It's always hard to see someone you love go through an illness. You want to be able to heal them and it can be frustrating for her that she can't help speed your recovery.

The most important thing you can do is to talk to her and be honest about your concerns. I've been married to my husband for 19 years and together with him for 22. I've told him at times I felt that this illness makes me less of a wife and I usually get a big hug in response. He understands when I don't have the energy to cook dinner. Right now I'm on unemployment and we could really use the income because our son just started college. He wants me to heal first. But he has been with me for many years when i was healthy.

Remember that if someone truly loves you they are there for you in the bad times as well as the good and it does sound like she is there for you. Again, I recommend she go to the forum called "friends and loved ones of celiacs" so she has an outlet and perhaps can ask her own questions. Also, if she says she was tired at work as well then acknowledge it. Maybe she needs to be reassured that you're there for her.

This forum has been a lifeline for me. When I was first diagnosed I would basically lay in bed watching TV. Then I decided to be proactive and do some research. It was funny because every query I entered led me here. I have met some amazing people on this forum and their wisdom, generosity of spirit and kindness is abundant. You are not alone!!!!!!

Loey

[Dixiebell]

Welcome!

One thing to do if you haven't yet is to get your vitamin levels checked. Having low levels can make you to tired to even think.

Also get your thyroid levels checked too.

[sahm-i-am]

I am sorry you aren't gaining your energy back as quickly as you would like. I've been Celiacs for 7 months now (wow! where did that time go?) and it did take me a few of those to absorb all those nutrients and vitamins that I was SO low in! Ask your doctor (or better yet, any experienced one on this forum!) what things you can do to promote faster healing and therefore, faster absorption. Coconut water, probiotics, low acidic foods are some things I've heard about on here that can help healing. Maybe?

But, you were asking about relationships while healing. That one is harder. I was in the exact same situation as you a couple of months ago. I was so tired, worn out and getting really down about the celiac disease and all the other issues that go along with diagnosis. But one day I saw how it was affecting my husband and I really made an effort one evening to be the wife he married. It can be as small as sending flowers or as big as planning and executing a date night. But, as much as we are suffering the physical symptoms, our loved ones that live with us are suffering as well, but in a different way. While we are mourning gluten and our old lifestyle, they are mourning their old lifestyle, too. I try to think of how much my husband's life has changed. Sure, some for the better - me being healthy and all. But, no more spontaneous kissing sessions while waiting for the movie to start, no last-minute lunches while out and about (this is getting easier though). But, life has changed for everyone. And some special thing you can do for her to acknowledge that you are loving her and her support will go along way. And I KNOW how tired you are and how much energy you don't have. But one time every now and then will go a long way.

And one other thing I've learned is that if I focus on my celiac disease and it's crazy symptoms and if that is all I talk about then celiac disease becomes who I am and what our relationship is about. I don't want to give celiac disease any more control than it already has. I need to 'suffer in silence' sometimes. My husband LOVES History Channel and World War II, but if I hear about it every night I will hit him over the head with a frozen Udi's bread loaf! Not saying to shut her out as a support for you, but perhaps this can be your new place to vent about celiac disease and crazy symptoms. She can hear about it every now and then and be the one to celebrate the baby steps that this disease makes us take.

I know I've written more than anyone probably ever wanted to read, but I just kept typing. I hope you can take something positive out of it. Believe me, I have been right where you are, exactly. And I realize everyone is different, but you have got to make an effort to show her the "sparkle" that was your relationship when you fell in love.

But, you should also look at CC, other allergies, try healing foods and methods, too. But in the short term - go buy her flowers!

[Loey]

I am sorry you aren't gaining your energy back as quickly as you would like. I've been Celiacs for 7 months now (wow! where did that time go?) and it did take me a few of those to absorb all those nutrients and vitamins that I was SO low in! Ask your doctor (or better yet, any experienced one on this forum!) what things you can do to promote faster healing and therefore, faster absorption. Coconut water, probiotics, low acidic foods are some things I've heard about on here that can help healing. Maybe?

But, you were asking about relationships while healing. That one is harder. I was in the exact same situation as you a couple of months ago. I was so tired, worn out and getting really down about the celiac disease and all the other issues that go along with diagnosis. But one day I saw how it was affecting my husband and I really made an effort one evening to be the wife he married. It can be as small as sending flowers or as big as planning and executing a date night. But, as much as we are suffering the physical symptoms, our loved ones that live with us are suffering as well, but in a different way. While we are mourning gluten and our old lifestyle, they are mourning their old lifestyle, too. I try to think of how much my husband's life has changed. Sure, some for the better - me being healthy and all. But, no more spontaneous kissing sessions while waiting for the movie to start, no last-minute lunches while out and about (this is getting easier though). But, life has changed for everyone. And some special thing you can do for her to acknowledge that you are loving her and her support will go along way. And I KNOW how tired you are and how much energy you don't have. But one time every now and then will go a long way.

And one other thing I've learned is that if I focus on my celiac disease and it's crazy symptoms and if that is all I talk about then celiac disease becomes who I am and what our relationship is about. I don't want to give celiac disease any more control than it already has. I need to 'suffer in silence' sometimes. My husband LOVES History Channel and World War II, but if I hear about it every night I will hit him over the head with a frozen Udi's bread loaf! Not saying to shut her out as a support for you, but perhaps this can be your new place to vent about celiac disease and crazy symptoms. She can hear about it every now and then and be the one to celebrate the baby steps that this disease makes us take.

I know I've written more than anyone probably ever wanted to read, but I just kept typing. I hope you can take something positive out of it. Believe me, I have been right where you are, exactly. And I realize everyone is different, but you have got to make an effort to show her the "sparkle" that was your relationship when you fell in love.

But, you should also look at CC, other allergies, try healing foods and methods, too. But in the short term - go buy her flowers!

I totally agree with you. We have to make an effort even if we aren't feeling well and as I mentioned in my first post - acknowledge when she's tired. Just because exhaustion is a part of our disease it doesn't mean that she doesn't have those days when she's tired and needs validation. We all need to feel special.

Hang in there! I know that you'll start to feel better over time. Also remember the forum for friends and loved ones of celiac sufferers it might help give her support.

Hang in there and remember that you're not alone.

Loey

[ryebaby0]

I completely agree with the other comments. We've been married 26 yrs, husband/son celiac for 6. While I am as supportive as can be, it does sometimes hit me that we will never have the life we expected. People who say "oh, but you can bring your food, etc., " are missing the point. My DH gave me a Xmas gift last year of a 3-day trip with my Mom/niece to a treasured destination. I felt really guilty about going without him, but he persisted. "You go" he said "without worrying about my food, about the restaurant, about the hotplate or microwave. You go, and don't cook once. It's okay, I understand this is hard for you too". Spouses need to grieve, need to vent, need to feel like they are part of the diagnosis too.

You are always tired. We get that. Understand that when you say that to her, she may be hearing "I will always be tired, and too tired to do anything you want to do. Ever again. And you are a bad, bad person for thinking what you'd LIKE to do is more important than my health". How can she top your health? She can't -- so you have to extend yourself to her, even in a small way. After the elation and relief of a diagnosis, the joy wears off and the work of creating your new life begins --- it won't happen on it's own.

[cap6]

you are so right rybabyo ~ we will never have back our "old life" and the way we used to eat and it does get old. I used to take eating in a restaurant for granted - something we did all the time. Now it is a major treat to go to a gluten-free place (like Outback) where I can have a normal meal - not a salad. lol It takes such an adjustment time. It's been 8 months now...are we there and adjusted yet???

[mushroom]

It takes such an adjustment time. It's been 8 months now...are we there and adjusted yet???

I dunno - it all depends on how you handle it. Some people adjust to the loss of both legs by becoming wheelchair basbetballers; others curl up in a corner and feel sorry for themselves. Which type do you think is happier? There is always a positive way to look at something, the Pollyanna in me, and you just have to find that way and keep looking in that direction, not backwards at what once was

[sahm-i-am]

I dunno - it all depends on how you handle it. Some people adjust to the loss of both legs by becoming wheelchair basbetballers; others curl up in a corner and feel sorry for themselves. Which type do you think is happier? There is always a positive way to look at something, the Pollyanna in me, and you just have to find that way and keep looking in that direction, not backwards at what once was

I agree, but you have to allow for some grieving. They say the "year of firsts" is the time for adjustments and mourning (talking about losing a loved one, but can be applied to amputees, diabetics, critically ill, etc.). Every first new experience, holiday, social outing as a Celiac is a huge step in becoming that positive person. And even positive people have a bad day. Hopefully they will be few and far between!

[MelindaLee]

My thought Sfamor, is to do all that you can muster to do the things she wants once in a while. I totally understand the fatigue and fuzziness, but you'll feel the same way sitting on the couch as you will doing something with her. I realize sometimes things might be more that what you can handle, but try to do it when you can. Sometimes what holds us back is our attitude. Though your health is a factor, she would feel the same way if you just were tired from a difficult job and "never" felt like doing what she wants to. Relationships are hard without life altering medical issues. Don't forget about her needs sometimes. She sounds like she is wonderfully supportive and willing to do anything for you. Make sure she gets the respect and appreciation she should for it. That is what makes a relationship withstand anything.

[mushroom]

Rereading Sfamor's original post, my experience has been that you can never fully communicate to another what you are feeling and how things affect you, i.e., they can never walk a figurative mile in your shoes, no matter how much they might try. This you are just going to have to accept, and your telling her over and over will not help her "get" it any better, but rather cause her to tune it out a little. I guess my Pollyanna-type response was directed more toward trying not to repeat the same responses and patterns of behavior, the same explanations (which she has heard over and over and yes, there are limits to one's ability even when one is tolerant and understanding). Try as often as you can to surprise her by what you can or are willing to do that she is not expecting so that she is not left thinking, well, here we go, same old, same old; keep some surprises up your sleeve which will make her feel good as she tries to accommodate your needs. Because she is suffering too - in a different way from you, but still suffering from the loss of the things you used to enjoy together that you no longer do.

[T.H.]

I guess my questions are: 1. How do your symptoms effect your relationships and what helps you and your partner cope? and 2. What do you do about your partner not understanding your symptoms and how they are severely impacting you?

1. It's been hard. My hubby really didn't understand, and still doesn't. He tried, and he's gone gluten free so we have a gluten free household, but he thinks that I 'worry too much' sometimes, when I'm being extra careful. Finds the symptoms frustrating, partly because I've had them for years so part of him doesn't believe they will ever get better. My not making a big deal of him eating gluten when we're out, and trying to make sure we do things we used to, like going out to eat, even when I'm just keeping him company, has helped some.

2. I deal with it by sometimes ignoring him when he says something that - to me - feels very unsupportive, or finding other people to talk to, trying to push myself a little bit extra for him when I'm feeling down, and sometimes reminding him that I'm not trying to feel this way on purpose. some days are better than others.

On the front of not getting better? I believe some members have already mentioned other intolerances, yes? Dairy, soy, nuts, and corn (or most grains) - those are the more common ones I've seen people have difficulty with.

Another possibility is that there can also be too much gluten in your gluten free diet. I have been having trouble for the last year, and only recently have figured out that I am more sensitive to gluten than average, so a 'normal' gluten free diet still isn't enough for me to be well, because it still has trace amounts of gluten. If you wanna try something for a week or two, just to see if that might be the case with you, you could do the following:

For a week, maybe two, cut your diet down to peeled veggies, peeled fruits, and meat (big pieces, like steak and whole chicken, that has not been cut at the meat counter but rather before it arrived there). And I mean cut out EVERYTHING but those three things. Grains, beans, nuts, seeds, spices, oils - they're all potentially contaminated due to harvesting, shipping, or processing. You peel the produce because THEY are all potentially contaminated due to things like sprays with gluten, mulch with gluten, gluten containing fertilizer, etc...

Even salt can be an issue (RealSalt sea salt seems to do okay).

This is a pretty severely restricted diet. Most celiacs NEVER have to eat this limited a diet, and even if you improved on this diet doesn't mean you couldn't add a ton of food back in later. But it's a good diet for checking to see if too much gluten could be your issue, because you have the best chance of not getting any gluten this way, so you'll be better able to tell if gluten is the problem, or if it's something else, ya know?

Wishing you the best of luck in feeling better!

oh, as an aside - you can roast any winter squash seeds to get some seeds in your diet for the trial, and nuts that are still in the shell would likely be okay, if you washed off the outside with soap and water first.

[sandsurfgirl]

Don't despair because some people take longer to heal but you might just get back to your old self eventually. It took me about 6 months to have one symptom free day and now 11 months gluten free I feel great most of the time. I only have lingering afternoon fatigue but it's managable.

Make sure you are totally gluten free and that includes hair products, soaps, lotions etc. I did NOT get better until I did this. So many shampoos and conditioners etc have wheat in them and somehow it will end up in your mouth. I forgot and put a leave in conditioner on my hair with wheat, ran my hands through my hair while typing on the computer and ate crackers. Glutened myself bad!

Make sure you are hydrated. Celiac can cause dehydration. Get natural electrolytes or for what works is just plain old Gatorade. I didn't do well with the electrolytes supplements. And drink lots of water of course.

Hang in there!

[sfamor]

Thanks for all the good advise everyone! One thing I did learn this past week is that I'm actually deficient in vitamin B-12 and I'll have to start getting b-12 injections and continuing up to a year since I'm clearly not absorbing it well enough due to celiacs. I've been doing a lot of research this weekend and it looks like this deficiency could be one of the causes of why my energy is still so low. I am excited to see if it will increase my energy.

[mushroom]

If your B12 is low that can have a drastic effect on your energy level. It is really important to get all your nutrient levels checked because celiacs have difficulty in absorbing all nutrients. I am glad that you learned this and it should help a lot. I still take B12 injections because I don't tolerate the sublingual B12. I was also deficient in folate and had pernicious anemia.