Slightly Frustrated...

[Waitingindreams]

I'll try to keep this brief.

 

I have been with my boyfriend for nearly a year and a half now. I got diagnosed with celiac disease less than 2 weeks after we became official, and he has been pretty great about it. He immediately downloaded gluten free apps to his phone, he's careful about cross contamination, etc etc. But there was a brief period in time where he was really dark about it, and paranoid that I was going to die at a young age. I am now on a very strict diet...(dairy free/low histamine version of the SCD diet) and he has seen my bloating go down, skin issues and energy levels improve, etc etc...and he is now not as morbid and seems to just trust me with my food choices. At first he was worried I was giving up too much food - now he realizes I am only eliminating food that currently bothers me. He is even looking into eating healthier himself. 

 

Now, although I want my boyfriend to eat healthier, we are both adults and I know I can't push food on him. And I don't. When I cook, I cook us both healthy food (like baked apples, scrambled eggs with vegetables, etc) but I don't dictate what he can and can't eat. I give him advice when he asks for it, but since he CAN eat this food, I pretty much leave it alone. 

 

Unfortunately, his father seems to think that I am trying to control what he eats, since he is changing his eating habits so drastically. The reality of it, is that he doesn't want to end up like his father - who is extremely overweight and has a lot of health issues (terrible arthritis, etc) His father and I get along fine at face value, but I always kind of knew something was a little off with him. He really liked me in the beginning, but then it seemed like he liked me less and less. When talking to my boyfriend about it, he said his father was coming around now, but he also said that his father had said he wanted him to find someone else. When asked why, he basically just said "She's sick." So, apparently, his father thinks I'm not going to live very long and he doesn't want my boyfriend to have to deal with the hardship/heartache of having a sick girlfriend/wife. (I guess his mother died when he was young...I'm not sure how she died, but she was sick)  What?? I am on this insanely strict diet so that I DON'T end up that sick! A former co-worker of mine recently posted a status about her husband being in the hospital - he has terrible crohn's disease and he had to have part of his colon removed. I am working so hard so that I don't have to go through that, or anything else that drastic. I am healing, I am doing so much better...I barely have allergies anymore, my skin looks so much better, everything is improving...but it's like none of that matters.

 

I think it's because a lot of the time I'm around his parents, I don't eat anything. But it's because we go to family events/parties etc where there are no safe gluten free options, so I opt to either eat before I go, bring my own food, or eat after. It's usually easier to just eat before or after. I don't know if my boyfriend vented a lot to his parents in the past about how scared he was I was going to die or what, (I think it's a huge part of it - because he used to yell at his mom when she wanted to cook for me because he didn't trust her with the CC) but I do NOT have that kind of attitude myself and I am far more positive about my health than he used to be. I do not complain a lot about it, I do talk about it when asked why I am not eating, but I am not negative and nor do I act like I am "sick".

 

Do any of you define yourselves as "sick" because you were diagnosed with celiac disease? I only call myself sick when I have bronchitis or a cold, etc. I'm just so frustrated. I am going above and beyond the standard gluten free diet to fight my candida and to fight the other issues celiac disease left behind. I feel like I was sick before I was diagnosed, but now I just feel like I am healing. But it's hard to explain that to people who don't understand, and don't seem open to. Very frustrating. 

[kareng]

Honey, I have sooooo many things to comment on from my own experience. Part of what I am going to say is - brush it off. And - let the Bf deal with his own parents. Sometimes we give random comments more importance than we should. And maybe Dad doesn't realize Celiac is more like a non-life threatening allergy to a food. We take it seriously, but it won't kill us or keep us from being Moms and raising his grandkids. It may just take a bit of time to become the new normal.

[Waitingindreams]

I know you're right...I just get so frustrated when I am going through so many drastic lifestyle changes beyond going gluten free, and still there is so much negativity. It always was so discouraging to spend so much time researching and redefining my diet and lifestyle, just to have my boyfriend make morbid comments. It was like a slap in the face. Now that he's stopped, hearing that his father wants him to find someone else because I'm "sick"...agh. Sometimes it is hard to stay so positive when I know that despite all of the changes I have been through, I still have a long way to go. I just want to take care of myself and get healthy! I also have a few friends that are less than supportive, but I won't get into that. I've read enough threads on here to know we all deal with pretty much the same issues. It's comforting to know I'm not alone in that regard. 

 

On a more personal note: I noticed on another thread that you said your antibodies tested at >100 (I still might not have the terminology right, I still don't perfectly understand how to read my results) mine were at that level too. I have not yet been retested. I know that this could mean that I could have a level of anywhere from 101+, but would you mind giving me a reference on how long it took before you saw your levels go really down? I want to get my levels checked again asap, but I currently do not have health insurance. 

[kareng]

I know you're right...I just get so frustrated when I am going through so many drastic lifestyle changes beyond going gluten free, and still there is so much negativity. It always was so discouraging to spend so much time researching and redefining my diet and lifestyle, just to have my boyfriend make morbid comments. It was like a slap in the face. Now that he's stopped, hearing that his father wants him to find someone else because I'm "sick"...agh. Sometimes it is hard to stay so positive when I know that despite all of the changes I have been through, I still have a long way to go. I just want to take care of myself and get healthy! I also have a few friends that are less than supportive, but I won't get into that. I've read enough threads on here to know we all deal with pretty much the same issues. It's comforting to know I'm not alone in that regard. 

 

On a more personal note: I noticed on another thread that you said your antibodies tested at >100 (I still might not have the terminology right, I still don't perfectly understand how to read my results) mine were at that level too. I have not yet been retested. I know that this could mean that I could have a level of anywhere from 101+, but would you mind giving me a reference on how long it took before you saw your levels go really down? I want to get my levels checked again asap, but I currently do not have health insurance.

It's been a while. I'll look that up tomorrow. If I haven't posted back here by this time tomorrow - pm me to remind me. I won't be mad, I just forget.

[Solandra]

His dad needs to stop being so melodramatic. It's only food. I have Hashimoto's disease and Celiac, I don't think of myself as "sick" unless I come down with a bad virus. The rest of the time, I'm too busy working, biking, riding horses and generally living my life to think much about it! And anyone can come down with health problems. If your BF found "someone else", what if they developed Diabetes, or some other thing that is harder to deal with and manage. You never know what life will throw at you, and you do the best you can and keep going.

[BlessedMommy]

I wouldn't worry too much about what his parents think. I imagine that they'll come around in time. My MIL had concerns about me before I married my husband and now after 9 years of marriage, she treats me like a daughter and jokes about adopting me.

 

If you get a chance to talk to his Dad, you could give him some educational nuggets about celiac. Explain that you can be healthy as long as you follow a strict diet. 

 

As far as parties and occasions out of the house, I just cook something up that's safe and yummy and pack it in my Pyrex portable dishes. Then I heat it at my destination. It's really not much extra work and the containers make it so easy.

[rgarton]

My boyfriend says he is sick when he has hayfever!

 

People have different opinions on what 'sick' is.

 

There isn't any chance of dying younger purely because you have celiac unless you carried on eating masses amount of gluten then you might run into some complications later on. But you are being so careful.

 

I'd just get it out into the open and explain that having an auto immune disease (which is what arthritis is too btw...) doesn't mean you will die young or anything or the sort, people who are morbidly obese will die younger... hint hint. 

 

He needs some knowledge and you are the best person to give it to him. 

[Waitingindreams]

It's been a while. I'll look that up tomorrow. If I haven't posted back here by this time tomorrow - pm me to remind me. I won't be mad, I just forget.

Thank you, I appreciate it. I can't wait to get my levels checked!

[kareng]

Thank you, I appreciate it. I can't wait to get my levels checked!

 

 

I can't find it right now.  I know that at a year it was still a little bit positive but for someone who may have had Celiac for many years, that seems to be normal.  Of course the GP who took the blood work thought I didn't know what I was doing (he didn't know anything about Celiac).

[beth01]

I personally wouldn't put too much stock in your antibody levels. They differ so much from person to person. Some who have been sick for decades have low antibody levels and awful endoscopies and then some have antibody levels off the charts with little to no damage seen on their endoscopies. It's all really your bodies dictation of when it's going to stop producing them and then when it will allow them to decrease. If you worry too much about it, you might be disappointed if they still come up high. Now if they drop and then go back up, worry.

I have only defined myself as "sick" to people due to the fact that most ask me non stop what has happened to me since I've lost so much weight. Did you have that surgery? Was it some sort of weight loss pill? Were you in rehab? No, I just started losing weight like crazy because I was sick, I'm not absorbing nutrients.

About the dad, like others have said, don't try to let it bother you. All that matters is what your BF thinks. No matter what you or he says, you most likely aren't going to change his father's mind. The friends, they're the same way. It's sad to say I've lost a few that think I'm insane but I guess I didn't need them to begin with if they can't see what's so clearly not starting them in the face anymore, hell I don't even look like the same person anymore. lol.

[Waitingindreams]

Solandra - Thank you! I agree. I don't define myself as 'sickly' or anything of that nature. Sure, before I was diagnosed I was in an awful rut, but now I have been gluten free for over a year and I've gotten the hang of it. I am very careful, and I am on a very strict diet. I am improving, slowly but surely. Yes, anyone can develop health problems. His father was very skinny when he was younger, now he is very overweight and is dealing with arthritis. I'd love to give him some tips/diet advice (I am considering a career path in nutrition) but I don't want to overstep my boundaries, so I keep quiet. I do think that a good diet can fix a lot of problems. Food is our body's source of fuel/energy. If we put crap in it, what else can we expect?

 

Blessedmommy - Sometimes his dad and I do have brief moments when we talk and I tell him what's going on. It's been difficult, since my boyfriend just bought a house...so there has been a lot of moving going on. Well, I developed a hiatal hernia from all of the weight gain/bloating I've been dealing with since before I got diagnosed, so I couldn't really help them move. So then I had to explain why I wasn't helping. In fact, I did actually push it a bit when helping my boyfriend and my intestines got swollen (I went to the dr and that is what he told me) so now I really take it easy as far as my hernia is concerned. But I am doing so much better in general. My allergies have improved, I'm losing weight, my skin and energy levels have improved. I can understand it if I were getting worse, or if I refused to go beyond the gluten free diet, but I am going above and beyond. I am not going to let this beat me. 

 

Yes, sometimes I bring my own food to parties, but often I find it easier if I just eat before or after and just drink water. Sometimes I'll bring something small with me in my purse..like for Easter at his uncle's house I brought a package of Sun Cups to eat while they all had cake/etc. I want to figure out what we're doing for Thanksgiving so I can prepare, but we're not sure whose house we're going to, agh! Lol

 

rgarton - I know, people definitely do have different definitions for what 'sick' means. But what he meant by 'sick' is like...terminally ill. Like...you'll have a few years with her if you're lucky type thing. As if I've been given a few years to live. Like I'm a time bomb. I know all of that, but I guess he doesn't. And again, this could be potentially because of my boyfriend. When I first got diagnosed (and for a good while after) he was so paranoid I was going to die young. I had to really drill it into his head that I am taking care of myself and that I won't let that happen. But in the mean time, who knows what he said to his parents about it. I know he has gotten into fights with his mother because she wanted to cook for me and he doesn't trust her with cross contamination (I was not there for any of this, it's just what he told me) and yes, I would love to educate people on celiac disease and explain it is an auto immune reaction to gluten, just as diabetes and arthritis are auto immune conditions. I think he just sees me not eating and he assumes I'm still doing terribly. I'd rather go hungry for a bit than risk CC!

 

beth01 - I'm glad you said that, but I don't know if there is a way to keep myself from being disappointed, especially since by the time I can get my levels rechecked I will have been gluten-free for at least a year and a half. I will try to keep that in mind, but I know I will be at least a little bummed if I don't see a significant decrease. I think I'm having trouble defining what I mean by him calling me 'sick'. I mean, of course I was very sick before diagnosed. I was a mess. But now that I am diagnosed and going above and beyond the gluten-free diet, I see myself more as healing. I don't see myself as living on borrowed time, or terminally ill. I see my health as a work in progress. Just the fact that he would suggest my bf find someone else because I am 'sick', is...Idk, kind of a stab in the gut. I love him, I am good for him...and he has done a lot for me too. He has been my rock. I would never let myself go and leave him with that kind of burden. I am doing everything in my power to get better. I guess sometimes I'd just like some credit. I wish I could go to Froyo with my boyfriend, or go get a pizza. Even a gluten free pizza...but my diet is so strict I can't do any of that. i want to be more 'normal', but instead I am going above and beyond to really heal myself. Maybe I am currently a bit more sensitive to those comments because I am doing so much over what is normally expected. If I didn't have a candida overgrowth, my life would be so much easier.

 

I think that's absolutely awful that you lost friends over having celiac disease. That doesn't even make sense. One of my guy friends is a jerk about it (but I don't see him often - he lives out of state and I visit him with a group of friends. He's probably equally close with all of us - but I am not so fond of him lately) and one of my female friends doesn't really understand why I can't go to restaurants. After just over 2 months of being diagnosed, I went on our annual girls' trip (thankfully it was in Portland, ME - they have ton of gluten-free stuff) and she didn't understand why we couldn't just walk into a random restaurant and 'hope' they have a gluten-free menu. What aggravated me the most about that was that I had done tons of research before our trip and I had put together a huge list of all of the gluten-free restaurants/dessert places in the area to make it easier on everyone. It's not like they were JUST gluten-free! They were just the places that I had looked into that I felt safe eating at...and then it was like I did all of that work for nothing. Regardless, we figured it all out and I had a safe and wonderful trip...but I had to bow out of the girls' trip for this year because my diet is too strict. If I try to do it again, I feel like there will be a lot of tension. Just absolutely insane. I'm sorry you had to deal with that. I would be fine not talking to the people who are weird about it about my celiac disease, but he is the one who brings it up! Again, as the thread states, "so frustrating!"