Anyone With An Unsupportive Spouse / Family Members / Friends?

[Menqet]

Hi!

I'm new here, and I am going to my doctor to talk to him about getting tested for celiac tomorrow. I seem to have many of the symptoms, but no one in my family has ever been diagnosed (but early onset osteoporosis, schizophrenia, depression, thyroid and other diseases run in the family). I'm also getting my hearing check, because I've had awful tinnitus for the past year or two. I just wish I could have some "peace and quiet".

I naturally eat gluten-free, just because it makes me feel good, so last week I was very strict with it. After several days, I started feeling so much better (I'm back to eating gluten, for the sake of getting tested. Ugh.) However, my husband thinks I'm nuts. He even tried to get me to eat something with gluten in it, when I was "off", and was laughing about it. I mentioned again this morning how relieved I was to go get tested and find out if I have it, and he laughed at me again. I told him that he would feel bad, if I had it. He just said that it's not something that's going to kill me, so why should he feel bad. It made me pretty angry. I just feel really alone in this search for answers and horribly sad.

How does everyone else handle others when they're completely unsupportive?

[kareng]

Hi!

I'm new here, and I am going to my doctor to talk to him about getting tested for celiac tomorrow. I seem to have many of the symptoms, but no one in my family has ever been diagnosed (but early onset osteoporosis, schizophrenia, depression, thyroid and other diseases run in the family). I'm also getting my hearing check, because I've had awful tinnitus for the past year or two. I just wish I could have some "peace and quiet".

I naturally eat gluten-free, just because it makes me feel good, so last week I was very strict with it. After several days, I started feeling so much better (I'm back to eating gluten, for the sake of getting tested. Ugh.) However, my husband thinks I'm nuts. He even tried to get me to eat something with gluten in it, when I was "off", and was laughing about it. I mentioned again this morning how relieved I was to go get tested and find out if I have it, and he laughed at me again. I told him that he would feel bad, if I had it. He just said that it's not something that's going to kill me, so why should he feel bad. It made me pretty angry. I just feel really alone in this search for answers and horribly sad.

How does everyone else handle others when they're completely unsupportive?

Actually, undiagnosed Celiac can kill you. You can die of malnutrition. I was so anemic from not being able to absorb nutrients my blood couldn't get oxygen to my brain.

If you had a broken arm, he wouldn't feel bad? He wouldn't help you until the cast was off and it was up to strength?

With Celiac, because you can't absorb nutrients, you will have a lot of other problems. Aside from bathroom issues. You will become anemic - really tired, no energy for life & certainly none for sex or cooking. You will not be able to have children if the body can't nourish the pregnancy. You will develop osteoporosis & that will certainly slow your life down.

If none of these concern him, then you must face the fact that you married an uncaring, mean jerk. He doesn't love you and wouldn't spit on you if you were on fire! And you can tell him I said that tho I hope it doesn't come to that!

[shopgirl]

I agree with some of Karen's comments. Is it possible that the issues you're having with him have nothing to do with gluten?

[Kelly777]

This disease is very serious. There are other diseases that arise from this disease that are very serious including cancer. It is not something to play around with because you are literally playing with your life. My family was the worst about it than anybody. They seem to think it is a new fad and when I make gluten free food to take to a family event they act like they are the ones being put out. At Christmas they made their snide comments and I had finally had enough and said, "You all have a nice dinner! I'm taking my food to another part of the house and eating on a TV tray. I'm not willing to sit here and feel excluded or eat something that could possibly kill me just to please you and I think you've really crossed the line here and I'm done. By the way, make sure you clean up after yourselves because I plan on leaving it until next Christmas if you don't!" Then I pointed out to them that everyone else including coworker's have been more than supportive while they once again made it about themselves. Their days of excluding me came to a halt that very moment. The other thing I did is email them web pages about the seriousness of this disease. Now we go to gluten free restaurants and I am always included in anything that involves food. There are always gluten free choices that have not been cross contaminated and there is no snarky comments either. You have to take control of your disease and part of that means letting the people around you know what is going on. If you told someone that you had diabetes they wouldn't try to force cake & candy on you so I don't know what is so hard to comprehend about not having gluten??

[Diane-in-FL]

I agree with Karen, too.....your husband is going to be a detriment to your health. I can't believe how insensitive he is.

[Death-Cab-Doll]

So sorry... Hopefully after your testing and educating him a little he will realize how immature and mean he has been. Good luck!

[Menqet]

Thanks everyone. Actually, we've been married for 13 years, and we do have 2 daughters. Although, I lost an awful amount of hair during one of the pregnancies and was horribly anemic the whole time. My youngest one has constant headaches and stomach pains, which is part of the reason I started looking into celiac. My grandmother had early osteoporosis, a benign tumor 10 lb. tumor in her abdomen, hair loss and full gray hair in her 20's. I think she may have had it. My aunt was diagnosed with osteoporosis in her early 50's.

I've just been so fatigued lately, and it's so hard to even think straight. It's even affecting my speech. I've always had a little bit of a stammer, but now I sometimes struggle to even come up with the word I want to say. I just draw a blank!

I know my husband sounds like a jerk, but he's just very uneducated about celiac. It's still just a very new possibility. I mean, I haven't even seen the doctor about it, yet. I think I'll just wait to see how the tests come back before I embark on educating my family.

[srall]

Even if you test negative for celiac, you know you feel better eating gluten free. Remember to listen to your body. I'm very curious to see what will happen over the next decade as people begin to study what it means to be gluten intolerant, not just test positive for celiac. My mom, myself and my 7 year old have all tested negative for celiac (we had all been off gluten for several weeks before the test). My symptoms were pretty moderate compared to my mother's and daughter's. My mom nearly ended up in the emergency room after the waiter in a restaurant insisted the tortillas were gluten free. Even though my mother was skeptical she ate them. And we were convinced my daughter had cancer when we finally took her off gluten. I have a "before" picture of her. I'd love to post it here...maybe someday I will. Anyhow, serious business here. You need to be your own advocate on this journey I'm afraid. I'm fortunate that my husband has been so supportive and has even gone gluten free in the house. I honestly don't know if I could stay married to him if he was making fun of me for my symptoms. And certainly I'd leave if I thought my daughter's health were in jeopardy.

[kareng]

Thanks everyone. Actually, we've been married for 13 years, and we do have 2 daughters. Although, I lost an awful amount of hair during one of the pregnancies and was horribly anemic the whole time. My youngest one has constant headaches and stomach pains, which is part of the reason I started looking into celiac. My grandmother had early osteoporosis, a benign tumor 10 lb. tumor in her abdomen, hair loss and full gray hair in her 20's. I think she may have had it. My aunt was diagnosed with osteoporosis in her early 50's.

I've just been so fatigued lately, and it's so hard to even think straight. It's even affecting my speech. I've always had a little bit of a stammer, but now I sometimes struggle to even come up with the word I want to say. I just draw a blank!

I know my husband sounds like a jerk, but he's just very uneducated about celiac. It's still just a very new possibility. I mean, I haven't even seen the doctor about it, yet. I think I'll just wait to see how the tests come back before I embark on educating my family.

There is clearly something wrong. He should be worried. It could be more serious than celiac disease. You need to go to the doctor right away. If it's affecting your speech and thinking. Also, get a blood test for anemia, B12, and vitamin D. Thyroid would be good to test, too. Even my teenage boys noticed I had no energy and was fading fast.

Let your hub see how tired you are. Leave some things undone because you are tired. You are too tired to do anything but sleep once the kids are in bed. You just don't have the energy to re-paint the dining room or take the kids bike riding. He will have to do it.

[kareng]

Forgot: please note I said I hoped he wouldn't stay a jerk about it. I hoped you could make him understand it isn't funny to feel so bad. And you will be lucky if it's as simple as a diet change.

[Menqet]

There is clearly something wrong. He should be worried. It could be more serious than celiac disease. You need to go to the doctor right away. If it's affecting your speech and thinking. Also, get a blood test for anemia, B12, and vitamin D. Thyroid would be good to test, too. Even my teenage boys noticed I had no energy and was fading fast.

Let your hub see how tired you are. Leave some things undone because you are tired. You are too tired to do anything but sleep once the kids are in bed. You just don't have the energy to re-paint the dining room or take the kids bike riding. He will have to do it.

I actually leave quite a bit not done. I pretty much do go to sleep once the kids are in bed, if I don't pass out on the couch trying to watch a movie with him. I've actually been talking to his cousin, who has gone through the whole process of being tested for celiac. She doesn't have it, but she understands how serious it could be. She's the one that really convinced me last week to make an appointment. I'm so glad this forum exists! I don't feel like I'm going nuts. I think my husband is so skeptical at this point, because I had pretty bad heart palpitations and chest pains. I wore a heart monitor for a day, but there was nothing abnormal on it. He might think this is just something similar to that, and it's all in my head.

[Menqet]

Even if you test negative for celiac, you know you feel better eating gluten free. Remember to listen to your body. I'm very curious to see what will happen over the next decade as people begin to study what it means to be gluten intolerant, not just test positive for celiac. My mom, myself and my 7 year old have all tested negative for celiac (we had all been off gluten for several weeks before the test). My symptoms were pretty moderate compared to my mother's and daughter's. My mom nearly ended up in the emergency room after the waiter in a restaurant insisted the tortillas were gluten free. Even though my mother was skeptical she ate them. And we were convinced my daughter had cancer when we finally took her off gluten. I have a "before" picture of her. I'd love to post it here...maybe someday I will. Anyhow, serious business here. You need to be your own advocate on this journey I'm afraid. I'm fortunate that my husband has been so supportive and has even gone gluten free in the house. I honestly don't know if I could stay married to him if he was making fun of me for my symptoms. And certainly I'd leave if I thought my daughter's health were in jeopardy.

I've already told him that I will keep up the gluten free diet. He'll just have to deal with it. If I test positive for it, I will most definitely get both my daughters tested.

[mamaw]

I agree with the other posters. And with you --family can be the worst, the ones you love & trust the most are often the most hurtful in their comments.I'm a mentor & help hundreds with their gluten-free journey but some family just don't understand even though they seen first hand how healthy I've become... It is very hard to accept....

Make sure you have plenty of gluten in your system before having the celiac panel .....ALso you may luck out & not have damage to your villi, a good thing but you may be sensitive to it & an elimination diet is the way to test for that....Or find a doctor who will do food allergy testing.

Many people including doctors find digesting wheat is very hard on one's intestinal system....

I hope you find out something soon & I pray your spouse grows up & becomes more mature in the near future. I just don't find amusement at someone else's expense & certainly not feeling well.

sorry I hope things brighten up for you.

blessings

mamaw

[T.H.]

I think my husband is so skeptical at this point, because I had pretty bad heart palpitations and chest pains. I wore a heart monitor for a day, but there was nothing abnormal on it. He might think this is just something similar to that, and it's all in my head.

Heart issues are actually slightly more common in Celiacs. :-) A number of us feel like we are having palpitations fairly often, even when there is no irregular heart issues. Or the irregularity is so small that it takes a professional and a LOT more invasive tests to diagnose it (I, my father, and my grandmother all had this).

Also, you might want to look up costochondritis - not unusual in celiacs, either. It feels somewhat like a heart attack - almost the same exact symptoms, actually - but it's to do with inflammation around where your ribs meet your sternum. I don't know if it would match what you experienced, but I've had this crop up a few times when I was really having trouble with my glutening issues. Might be worth checking symptoms.

[Menqet]

Heart issues are actually slightly more common in Celiacs. :-) A number of us feel like we are having palpitations fairly often, even when there is no irregular heart issues. Or the irregularity is so small that it takes a professional and a LOT more invasive tests to diagnose it (I, my father, and my grandmother all had this).

Also, you might want to look up costochondritis - not unusual in celiacs, either. It feels somewhat like a heart attack - almost the same exact symptoms, actually - but it's to do with inflammation around where your ribs meet your sternum. I don't know if it would match what you experienced, but I've had this crop up a few times when I was really having trouble with my glutening issues. Might be worth checking symptoms.

Oh, man! I've had chest pains right around the sternum area. It felt like something was squeezing my chest in that area. I've had those since I was a teenager. I thought they might just be a panic attack, but I've noticed that they have happened when I haven't had any stress at all. Although, many times they happened when I was having quite a bit of stress. I haven't had one for about a year now. One doctor told me I had pleurisy, and he suggested just taking ibuprofen when it happens.

[kareng]

Oh, man! I've had chest pains right around the sternum area. It felt like something was squeezing my chest in that area. I've had those since I was a teenager. I thought they might just be a panic attack, but I've noticed that they have happened when I haven't had any stress at all. Although, many times they happened when I was having quite a bit of stress. I haven't had one for about a year now. One doctor told me I had pleurisy, and he suggested just taking ibuprofen when it happens.

Pleurisy for years? The kind that is temporary & you take Advil for would be gone. Pleurisy that lasted for years , well, the underlying disease, like TB, would have killed you by now! In my non- medical opinion.

I had heart palps that went away once I got my anemia under control. I think my poor heart wasn't getting enough oxygen and was trying so hard to get it to the rest of my body. My pulse & blood pressure went down, too.

[Menqet]

Pleurisy for years? The kind that is temporary & you take Advil for would be gone. Pleurisy that lasted for years , well, the underlying disease, like TB, would have killed you by now! In my non- medical opinion.

I had heart palps that went away once I got my anemia under control. I think my poor heart wasn't getting enough oxygen and was trying so hard to get it to the rest of my body. My pulse & blood pressure went down, too.

Yeah, I really didn't like that doctor. He made me feel stupid every time I went to see him about something. I really like my new doctor, but I don't see him that much. I will tomorrow, though.

[srall]

Oh, man! I've had chest pains right around the sternum area. It felt like something was squeezing my chest in that area. I've had those since I was a teenager. I thought they might just be a panic attack, but I've noticed that they have happened when I haven't had any stress at all. Although, many times they happened when I was having quite a bit of stress. I haven't had one for about a year now. One doctor told me I had pleurisy, and he suggested just taking ibuprofen when it happens.

I've had this same experience! Pleurisy for years.

[Happyw5]

Hi!

I'm new here, and I am going to my doctor to talk to him about getting tested for celiac tomorrow. I seem to have many of the symptoms, but no one in my family has ever been diagnosed (but early onset osteoporosis, schizophrenia, depression, thyroid and other diseases run in the family). I'm also getting my hearing check, because I've had awful tinnitus for the past year or two. I just wish I could have some "peace and quiet".

I naturally eat gluten-free, just because it makes me feel good, so last week I was very strict with it. After several days, I started feeling so much better (I'm back to eating gluten, for the sake of getting tested. Ugh.) However, my husband thinks I'm nuts. He even tried to get me to eat something with gluten in it, when I was "off", and was laughing about it. I mentioned again this morning how relieved I was to go get tested and find out if I have it, and he laughed at me again. I told him that he would feel bad, if I had it. He just said that it's not something that's going to kill me, so why should he feel bad. It made me pretty angry. I just feel really alone in this search for answers and horribly sad.

How does everyone else handle others when they're completely unsupportive?

I have a family that can be a little unsuportive... I don't think my husband thinks it's funny, but he doesn't take it all that seriously... My mom and sisters think I make it a big deal (which of course it is)... My tests were negative, so I guess I don't have it on paper. I know that my husband (married 12 yrs) cares about my health, but thinks that I am a hypochondriac. Luckily most days I am confident and strong enough to not care!

[kareng]

I've had this same experience! Pleurisy for years.

Anyone with inflammation and fluid around their lungs untreated, for years , has a good malpractice case for their family after they die.

[WhenDee]

In the few days before I was finally diagnosed I was on the couch calmly waiting to die. I was so sick I didn't care anymore.

In my case going gluten-free cleared up so many physical & emotional problems that my long-suffering hubby - who has seen me try EVERYTHING to figure out what was wrong - went from being a huge cynic to my #1 supporter right away. He was rolling his eyes at everything else, but the first time he saw the connection between gluten and my mood, he started asking me about everything I eat. "Are you sure that's gluten free?" The other day he asked about a soup that I thought was fine and saved me from eating gluten!

So #1 - it is VERY serious, and #2 - if you have tried many things before (as many Celiacs do), he may not be a believer until he sees for himself how it's helping. It might take being gluten-free for a while and having your first accidental exposure, where he'll see the dramatic difference.

I hope he'll see for himself soon. I never imagined my hubby would become such a huge support, and it means everything. Seriously - if my cynical eye-rolling hubby can figure it out, I know yours can too!

W

[lynnelise]

My family is generally supportive. Sometimes my husband makes little comments that annoy me. For instance yesterday at the grocery store I was looking at these spring rolls and said that I wished I could eat them and he said that technically I could eat them. Which is true but he knows I would get sick so comments like that are just annoying. Otherwise he is very good about it. He always lets me pick where we go to eat so I can get something safe. Plus he doesn't complain when I buy the occassional expensive gluten-free treat.

[Terri O]

In the few days before I was finally diagnosed I was on the couch calmly waiting to die. I was so sick I didn't care anymore.

In my case going gluten-free cleared up so many physical & emotional problems that my long-suffering hubby - who has seen me try EVERYTHING to figure out what was wrong - went from being a huge cynic to my #1 supporter right away. He was rolling his eyes at everything else, but the first time he saw the connection between gluten and my mood, he started asking me about everything I eat. "Are you sure that's gluten free?" The other day he asked about a soup that I thought was fine and saved me from eating gluten!

So #1 - it is VERY serious, and #2 - if you have tried many things before (as many Celiacs do), he may not be a believer until he sees for himself how it's helping. It might take being gluten-free for a while and having your first accidental exposure, where he'll see the dramatic difference.

I hope he'll see for himself soon. I never imagined my hubby would become such a huge support, and it means everything. Seriously - if my cynical eye-rolling hubby can figure it out, I know yours can too!

W

WhenDee--I so hope my husband will be like yours...I know that my teens will never understand; even though I feel they should go gluten-free too...My Mother and Father should really do it too. She says that this "must have come from your Father's side" If they would only try gluten-free all their problems might disappear too!

I am having an episode right now 'cause I think I got some gluten in something (?) so I am spacey in my head and going to take a nap!

[Kate79]

Hi!

I'm new here, and I am going to my doctor to talk to him about getting tested for celiac tomorrow. I seem to have many of the symptoms, but no one in my family has ever been diagnosed (but early onset osteoporosis, schizophrenia, depression, thyroid and other diseases run in the family). I'm also getting my hearing check, because I've had awful tinnitus for the past year or two. I just wish I could have some "peace and quiet".

I naturally eat gluten-free, just because it makes me feel good, so last week I was very strict with it. After several days, I started feeling so much better (I'm back to eating gluten, for the sake of getting tested. Ugh.) However, my husband thinks I'm nuts. He even tried to get me to eat something with gluten in it, when I was "off", and was laughing about it. I mentioned again this morning how relieved I was to go get tested and find out if I have it, and he laughed at me again. I told him that he would feel bad, if I had it. He just said that it's not something that's going to kill me, so why should he feel bad. It made me pretty angry. I just feel really alone in this search for answers and horribly sad.

How does everyone else handle others when they're completely unsupportive?

Tell your husband that celiac disease CAN kill you. Before my aunt was diagnosed, she needed major surgery because substantial parts of her small intestine were actually destroyed - literally, the tissue was dead - and she was quite close to dying herself. She also had her gall bladder removed & had further intestinal surgery a few years after her celiac diagnosis.

I don't know how common her level of trouble is, but there's also malnutrition and a host of cancers that are associated with the disease. I hope your husband's comments come from a lack of understanding and that you (or your doc) are able to provide him with some info that might make him more sensitive to your condition.

[mouselol]

Even if you test negative for celiac, you know you feel better eating gluten free. Remember to listen to your body. I'm very curious to see what will happen over the next decade as people begin to study what it means to be gluten intolerant, not just test positive for celiac. My mom, myself and my 7 year old have all tested negative for celiac (we had all been off gluten for several weeks before the test). My symptoms were pretty moderate compared to my mother's and daughter's. My mom nearly ended up in the emergency room after the waiter in a restaurant insisted the tortillas were gluten free. Even though my mother was skeptical she ate them. And we were convinced my daughter had cancer when we finally took her off gluten. I have a "before" picture of her. I'd love to post it here...maybe someday I will. Anyhow, serious business here. You need to be your own advocate on this journey I'm afraid. I'm fortunate that my husband has been so supportive and has even gone gluten free in the house. I honestly don't know if I could stay married to him if he was making fun of me for my symptoms. And certainly I'd leave if I thought my daughter's health were in jeopardy.

I tested negative for celiac, but it could be that I was off gluten for so long that it was a false positive. My doctor just doesn't know enough about it and after being gluten free for about 2 years and finally after getting an appointment sent me right for a blood test. The thought of the headaches and sinus pain not to mention the belly pain and everything else that goes with it is what is keeping from doing this again.

My family is also less than supportive. A prime example was Christmas yesterday. We had a bit of an argument when I asked that my gluten-free toast be kept separate from the regular toast and was told by my sister that it's not like i was going to go into anaphylactic shock. I said no it's not that, it's cross contamination, and to which I also got from my nephew that it was the last time today that he wanted to hear about gluten free anything. My family doesn't have to deal with it personally and because it doesn't affect them directly they just don't "get it".

Spending time with them makes me feel alone in this. They don't have to deal with the headaches (which is my main tell tale sign that I've been glutened), I do.

Thank God, my bff is also a celiac and she has a very supportive family.