31 replies to this topic

[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.