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Anyone With An Unsupportive Spouse / Family Members / Friends?


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31 replies to this topic

#16 kareng

 
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Posted 20 February 2011 - 05:56 PM

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. :P

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.
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#17 Menqet

 
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Posted 20 February 2011 - 06:00 PM

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. :P

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.
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#18 srall

 
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Posted 20 February 2011 - 06:15 PM

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.
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#19 Happyw5

 
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Posted 20 February 2011 - 06:17 PM

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!
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#20 kareng

 
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Posted 20 February 2011 - 06:54 PM

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. :o
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Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#21 WhenDee

 
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Posted 20 February 2011 - 10:44 PM

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
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#22 lynnelise

 
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Posted 21 February 2011 - 07:07 AM

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.
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#23 Terri O

 
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Posted 21 February 2011 - 12:22 PM

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!
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#24 Kate79

 
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Posted 21 February 2011 - 01:29 PM

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.
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#25 mouselol

 
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Posted 26 December 2012 - 04:27 AM

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.
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#26 Chaff

 
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Posted 26 December 2012 - 07:18 PM

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!


This hits the nail on the head for me -- that's exactly what I went through for most of my life, like clockwork, every afternoon.

Anyway, I think the board tends to act protectively of disrespected celiacs, which is very sweet of everyone, but a little tricky when it's about someone you love. I hope your husband has started to learn a little bit about this disease and see how serious it is since you first posted. It does sound ridiculous the first time you hear of it. I know I've jumped on a lot of quick-fix solutions in my search to not feel sick all the time, and my husband considered most of the ludicrous, and they were. (Like, the kitchen looked like a science lab sometimes.) But he caught on that this was different, probably because he's type 1 diabetic and knows how serious autoimmune stuff is. Without that experience, it can take a little while to get on board.
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#27 AVR1962

 
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Posted 28 December 2012 - 08:21 AM

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".

There's a variety of things that can cause ringing in the ears and not everyone is the same. Mine finally went away when I went off all grains and sugar. I currently allow a little grain and a little sugar but I have to be very careful or the ringing comes back.

It is not always easy not getting support especially from a spouse. When I was first diagnosed it was not by tests, it was by a doc who decided to call it celiac based on symptoms, going off wheat and then going back on and getting terribly sick. So husband would tell people "we weren't sure it was celiac, that maybe my system just needs time to heal."

After reading so much about how bad wheat is for you I convinced my teen daughter to go off and my husband even gave it a try. My daughter noticed a difference, said she felt so much better. Husband said it made no difference to him and went back to his gluten stuffing. I still have a hard time watching him fill his mouth and plate with gluten as I truly it is bad for people in general.

I used to tell everyone my story and I used to hard about wheat but I have finally gave up, people don't want to hear it, they don't want to try it and they don't think it applies to them. One of my last straws was with my husband not that long ago. He said, "I am sure glad I don't have issues with wheat." I didn't do well with that statement. I really don't think he gave a real good honest try so how would he know and that was the last for me to talk about gluten.

My friends have been great, my daughters wonderful.
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Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#28 love2travel

 
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Posted 28 December 2012 - 09:08 AM

My husband is my rock. Is it possible to be too supportive? If so, that is him. He is hyper alert and aware and does everything he possibly can to protect me. Our families, though not everyone "gets" it, are extremely supportive so I am very fortunate and grateful. When my husband eats gluten it is at work when I am absent, then he is careful not to kiss me until he brushes his teeth.
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#29 DavinaRN

 
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Posted 28 December 2012 - 02:32 PM

Listen to your body, first. Now as to the hubby...mine was so unsupportive in the beginning (yours sounds like mine) but the longer I stayed gluten free, the more he cared (guess he realized how sick it made me when I had no trouble passing up my favorites and he started researching cross contamination and telling me about). Fully supportive now, although he says he would never let his body win like that. I just said it must not make you sick enough. Extremely supportive since anaphylactic reaction (testing for allergy Jan11, had neg celiac blood panel before going gluten free) Wednesday and ending up in ER unable to breath when reaction started the normal gluten exposure way.

So long story, short. Give him time, hold your ground and follow what the doctor and your body tells you. No one has to give permission for gluten free lifestyle except you.
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#30 Ollie's Mom

 
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Posted 29 December 2012 - 11:25 AM

My husband is my rock. Is it possible to be too supportive? If so, that is him. He is hyper alert and aware and does everything he possibly can to protect me. Our families, though not everyone "gets" it, are extremely supportive so I am very fortunate and grateful. When my husband eats gluten it is at work when I am absent, then he is careful not to kiss me until he brushes his teeth.


Awwww he sounds just like my hubby. I don't know what I'd do if he wasn't supportive.
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