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People Who "bailed" When You Were Sick/crippled With Pain?

IrishHeart

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adab8ca Enthusiast
adab8ca
Posted

My heart breaks for everyone that has been deserted by their loved ones when they got so sick :(

We also thought I was dying. And I was suicidal. Told my husband to divorce me, I was totally ruining our lives. I was a total mess, lying on the couch after work every day just sobbing in pain. I thought I would definitely be in a wheelchair before last year was over, the nerve pain was SO bad and nothing touched it.

My best friend since I was 14 (I am now 42) said she wanted to come over and visit. I was not up to visitors at all. She insisted, she said we didn't have to talk, she just wanted to be there for me, to hold my hand. I thought that was SO brave of her, she did NOT know what she was walking into but risked it anyway.

The other day I told one of the owners of my company (it is a hubby and wife and I was talking to the wife) that I was feeling so much better and she STARTED TO CRY and came and gave me a hug and said it was the best news she had in a long time. So this horrible experience really made me realize that I am not alone. I am not at all trying to brag, sorry, just that I cannot even imagine not having people try to understand when things are so, so bad. I guess my friends, family, employers are the "blessings" that I didn't realize I had until I really needed it.

Hugs to you all...

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love2travel Mentor
love2travel
Posted

Dear Love2--Most of what you say about your feelings regarding hubby mirrors mine. I felt I was "ruining' his life. He is 10 years older than I am and retired and we planned on traveling. Everything came to a screeching halt. One day, ill out of my head, I tearfully told him he could divorce me; I would understand. I didn't want him saddled with a sick wife. My big bear of a sweetheart said quietly-- "Don't ever say such a thing like that again--you're my girl. We'll get through this together." I could cry at the sweetness of that memory. He is my rock --I always say that too! :) I feel bad about the things we have missed, but he doesn't care. All he cares about is me getting well. (and I am slowly but steadily :) )

My struggle has been inexplicable; I was so ill and in excruciating joint/muscle and burning nerve pain, 24/7, unable to sleep, lie down, walk, sit...out of my mind with cognitive dysfunction, insomnia and anxiety and every day was hell. He has picked me up off the bathroom floor when I was so spent from bouts in there and held cold compresses on my head to soothe the migraines. he has done it all-- dressed me, massaged me, and bathed me. My poor Mum didn't know what to do for me--she lives 4 hours away and could only cry with me over the phone. I'm the STRONG one in the family! They all lean on me--and I'm the baby of the family. I took care of her and my Dad for years when he was ill and dying...then, this HIT me. Just a nightmare. I lost nearly 4 years of my life. No drugs help me. I just live with it. And yes, if it were not for my guy, I would have gone mad. He says I saved my own life. I say I did it because of him. He has reassured me every single day and evening that we would figure this out-as I searched for an answer. He does not understand anyone bailing on a loved one.

We are beyond fortunate to have these men as our best friends/lovers, yes?! yes ;)

Thank you for your reassuring and touching reply. You're pretty amazing--I admire your courage --you are a warrior princess indeed. :)

Irish, your husband is a precious, precious man. I applaud his gentleness and kindness. It is a good reflection on your wonderful personality! I SO can relate to understanding if he would decide to get divorced - I went through that phase, too. The toll it was taking on my husband was huge - he had sleepless nights as well. It was not easy for him to drive all the way home from work a couple of times a day just to get me up and to the bathroom - many days were too painful to do it on my own. After pressing him on the issue once, he admitted that he grieved what we no longer were able to do but he was quick to point out that it was not me - it was the circumstances that we could not control. His main goal, however, was (and is) to get me well. My dear husband tells me almost daily how fascinating I am and how he is mesmerized by my many interests and hangs onto my words with rapt attention. It is wonderful to know without question I am so deeply loved through sickness and in health. Irish, you are so right that we have these men by our sides! I am exceedingly and abundantly glad.

One good thing that has come out of the pain (there are several, actually) is that I have learned so much more about life in general. I have been forced to take the time to reflect on myself, others, health and learning things. I feel somehow wiser. It is likely I would not have gleaned such a major interest in ancient history or geography and so on. Now I feel like a walking dictionary! :D Just from reading, reading and reading some more.

Irish, both of you are an amazing example of how to cope with/manage things that are beyond your control. It must hurt your husband dreadfully to know that the one he loves above all else has gone through soooooo much. I had tears in my eyes as I read what you wrote about your relationship. It is amazing that in these situations relationships either seem to shatter or become even better than before.

It's so weird but I, too, am the strong one in my family. My Mom (my dad died of cancer) and siblings feel I hold the family together (perhaps partly because I was with Mom during his sickness and death as I am the oldest in the family). I gather my strength from my faith and my husband and family but sometimes I have had enough of being strong and allow others to help. If a friend asks if she can bring something by, I am more than happy for her to do that. A few years ago I would have been too proud (silly, I know). The funny thing is, sometimes I put on a front when I am out in public (I don't like discussing my health with others except here!!) but otherwise it is not and that amazes me. What you see is what you get.

Trials build character and perseverance, that is for certain. That does not mean it is easy; of course it is not. But it can be amazing to have gone through such difficulties and able to experience true happiness and joy. Priorities are clearer. Now I feel better equipped to help other people who struggle. It is a miracle, actually. :)

IrishHeart Veteran
IrishHeart
Posted
  • Author

My heart breaks for everyone that has been deserted by their loved ones when they got so sick :(

We also thought I was dying. And I was suicidal. Told my husband to divorce me, I was totally ruining our lives. I was a total mess, lying on the couch after work every day just sobbing in pain. I thought I would definitely be in a wheelchair before last year was over, the nerve pain was SO bad and nothing touched it.

My best friend since I was 14 (I am now 42) said she wanted to come over and visit. I was not up to visitors at all. She insisted, she said we didn't have to talk, she just wanted to be there for me, to hold my hand. I thought that was SO brave of her, she did NOT know what she was walking into but risked it anyway.

The other day I told one of the owners of my company (it is a hubby and wife and I was talking to the wife) that I was feeling so much better and she STARTED TO CRY and came and gave me a hug and said it was the best news she had in a long time. So this horrible experience really made me realize that I am not alone. I am not at all trying to brag, sorry, just that I cannot even imagine not having people try to understand when things are so, so bad. I guess my friends, family, employers are the "blessings" that I didn't realize I had until I really needed it.

Hugs to you all...

I appreciate your kind words, Ada :) ---and I know your struggle was a lot like mine. (damn burning nerve pain!acck!) I am glad your best friend was there for you. My two best friends live 1300 and 2900 miles away--skype to the rescue! :) My Mum, sister--4 hours away, so it was tough for me. They wanted to be here but it wasn't possible.

I should make it clear that I do have other supportive people besides hubby, I was never truly alone, but that the few who I thought were my closest "peeps" all these years were not supportive at all. The ones who love me "best" I have learned-- are unfortunately, many, many miles away.

When I get well, I can always recruit new ones, I am thinking. Hey, I'm a lot of fun... :P:lol:

IrishHeart Veteran
IrishHeart
Posted
  • Author

Irish, your husband is a precious, precious man. I applaud his gentleness and kindness. It is a good reflection on your wonderful personality! I SO can relate to understanding if he would decide to get divorced - I went through that phase, too. The toll it was taking on my husband was huge - he had sleepless nights as well. It was not easy for him to drive all the way home from work a couple of times a day just to get me up and to the bathroom - many days were too painful to do it on my own. After pressing him on the issue once, he admitted that he grieved what we no longer were able to do but he was quick to point out that it was not me - it was the circumstances that we could not control. His main goal, however, was (and is) to get me well. My dear husband tells me almost daily how fascinating I am and how he is mesmerized by my many interests and hangs onto my words with rapt attention. It is wonderful to know without question I am so deeply loved through sickness and in health. Irish, you are so right that we have these men by our sides! I am exceedingly and abundantly glad.

One good thing that has come out of the pain (there are several, actually) is that I have learned so much more about life in general. I have been forced to take the time to reflect on myself, others, health and learning things. I feel somehow wiser. It is likely I would not have gleaned such a major interest in ancient history or geography and so on. Now I feel like a walking dictionary! :D Just from reading, reading and reading some more.

Irish, both of you are an amazing example of how to cope with/manage things that are beyond your control. It must hurt your husband dreadfully to know that the one he loves above all else has gone through soooooo much. I had tears in my eyes as I read what you wrote about your relationship. It is amazing that in these situations relationships either seem to shatter or become even better than before.

It's so weird but I, too, am the strong one in my family. My Mom (my dad died of cancer) and siblings feel I hold the family together (perhaps partly because I was with Mom during his sickness and death as I am the oldest in the family). I gather my strength from my faith and my husband and family but sometimes I have had enough of being strong and allow others to help. If a friend asks if she can bring something by, I am more than happy for her to do that. A few years ago I would have been too proud (silly, I know). The funny thing is, sometimes I put on a front when I am out in public (I don't like discussing my health with others except here!!) but otherwise it is not and that amazes me. What you see is what you get.

Trials build character and perseverance, that is for certain. That does not mean it is easy; of course it is not. But it can be amazing to have gone through such difficulties and able to experience true happiness and joy. Priorities are clearer. Now I feel better equipped to help other people who struggle. It is a miracle, actually. :)

Okay, now you made me cry!

Adversity reveals true character, indeed! ;)

I could write a book (and I think I will--I have kept a journal this entire time and all my research notes) about what it took for us to deal with this "thing" that happened. (not just me--all of you valiant people on here!) I kept telling him I did not believe all the "misdiagnoses" --all the doctors who said I would have to live with the pain and illness--get a "scooter" to get around. huh?? No way! You don't go from being an active, vibrant person to a sick, emaciated mess of pain for no good reason!! I just kept fighting and he just kept saying we could figure it out. I thought my heart would burst the day he told some doctor "I just want my wife back"...It was anguish for him to watch me deteriorate physically and mentally. I felt so guilty as I thrashed around in bed in burning pain and I did not want to keep him awake all night, so I would just walk quietly round and round my house, sobbing all night long. For months and months.

But he would not believe I wouldn't get well. That faith in me sustained me.

I diagnosed myself, by the way and had it confirmed finally through gene testing and a doctor who said "OMG! that's it!" Something in me said hold tight and keep fighting, but it was looking into those gorgeous deep blues he has every morning that gave me the strength to just keep going every day.

We were only married 10 years when this struck me down. But I am on my way back up. You are right--if we can survive this, we can survive anything. :)

That sweetheart even went gluten-free with me--at his insistence--and makes our bread.

Someday, I may be able to look at all of this horror with more "philosophical" eyes-- as you do now--but for now, it is still too raw and painful and I'm just not "There" yet. In time, in time. :)

Thanks again!

Diane-in-FL Explorer
Diane-in-FL
Posted

I too have a very supportive husband. He has been fantastic. He loves to cook and has taken it upon himself to experiment with lots of different recipes. I haven't had anybody actually "bail" on me, but I don't have much family left here anyway. Some friends seem not really interested when I mention success with a recipe or something, so I've stopped talking about it. I think when we move to Florida later this year there might be some challenges. My husband's brother and his wife will want us to go out with them a lot and have holidays at their place and I hope they will understand my issues. I don't want to be a bother, but don't want to turn into a hermit either. :(

adab8ca Enthusiast
adab8ca
Posted

"I just kept fighting and he just kept saying we could figure it out. I thought my heart would burst the day he told some doctor "I just want my wife back"...It was anguish for him to watch me deteriorate physically and mentally. I felt so guilty as I thrashed around in bed in burning pain and I did not want to keep him awake all night, so I would just walk quietly round and round my house, sobbing all night long. For months and months.

But he would not believe I wouldn't get well. That faith in me sustained me."

OMG, Rick said the same thing "I just want my wife back"...He had my back the whole time and even though I was too ill to appreciate it at the time, I really get it now. And I TOTALLY| TOTALLY and TOTALLY (did I mention TOTALLY) relate to the stumbling around the house, sobbing in pain so as to not keep the hubby awake.

You will get there. For sure. I have started having joy in my life again, I NEVER thought I would. And some days are bad, so I really treasure the good ones. I think until someone has gone through "this", they do not get it. I would always hear about people struck with mystery illnesses that nobody could figure out and NEVER dreamed I would be one of those people that was the star of the story!!!

Hugs hugs hugs and calming, cooling nerves...

IrishHeart Veteran
IrishHeart
Posted
  • Author

I too have a very supportive husband. He has been fantastic. He loves to cook and has taken it upon himself to experiment with lots of different recipes. I haven't had anybody actually "bail" on me, but I don't have much family left here anyway. Some friends seem not really interested when I mention success with a recipe or something, so I've stopped talking about it. I think when we move to Florida later this year there might be some challenges. My husband's brother and his wife will want us to go out with them a lot and have holidays at their place and I hope they will understand my issues. I don't want to be a bother, but don't want to turn into a hermit either. :(

Diane, I think if you can educate the in-laws in a "fun way" somehow it may make it easier. Have them to YOUR place for a few delicious gluten-free meals and let them see for themselves it's "real food". I tell my family--hey, I am not a leper, you know!! and they laugh. :lol: Diffuses the fear and confusion a bit.

And PS...from Maine to Florida--that's going to be great come next winter!! Lucky girl!! :)

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IrishHeart Veteran
IrishHeart
Posted
  • Author

"I just kept fighting and he just kept saying we could figure it out. I thought my heart would burst the day he told some doctor "I just want my wife back"...It was anguish for him to watch me deteriorate physically and mentally. I felt so guilty as I thrashed around in bed in burning pain and I did not want to keep him awake all night, so I would just walk quietly round and round my house, sobbing all night long. For months and months.

But he would not believe I wouldn't get well. That faith in me sustained me."

OMG, Rick said the same thing "I just want my wife back"...He had my back the whole time and even though I was too ill to appreciate it at the time, I really get it now. And I TOTALLY| TOTALLY and TOTALLY (did I mention TOTALLY) relate to the stumbling around the house, sobbing in pain so as to not keep the hubby awake.

You will get there. For sure. I have started having joy in my life again, I NEVER thought I would. And some days are bad, so I really treasure the good ones. I think until someone has gone through "this", they do not get it. I would always hear about people struck with mystery illnesses that nobody could figure out and NEVER dreamed I would be one of those people that was the star of the story!!!

Hugs hugs hugs and calming, cooling nerves...

thank you, thank you! --for sharing this because I felt the same way. My sister said "We need Dr. HOUSE!! someone has to help you!" I felt like I was being "poisoned" --like someone in a really bad mystery movie. We left no stone unturned.... yet, it came down to me. And a lot of research--on this site too! Go figure.

My nerve pain is calming down,although the doc says that could take years (ugh) and my muscle recovery is slow. I never lose focus--on my FUTURE, not the past. Thanks again, Ada!!

Diane-in-FL Explorer
Diane-in-FL
Posted

Diane, I think if you can educate the in-laws in a "fun way" somehow it may make it easier. Have them to YOUR place for a few delicious gluten-free meals and let them see for themselves it's "real food". I tell my family--hey, I am not a leper, you know!! and they laugh. :lol: Diffuses the fear and confusion a bit.

And PS...from Maine to Florida--that's going to be great come next winter!! Lucky girl!! :)

Yeah, I can't wait to say good riddance to winter. And maybe having a Whole Foods Market closer than 3 1/2 hours! B)

IrishHeart Veteran
IrishHeart
Posted
  • Author

Yeah, I can't wait to say good riddance to winter. And maybe having a Whole Foods Market closer than 3 1/2 hours! B)

LUCKY!! I don't know which one would be more exciting for me...LOL LOL Best wishes!!

bigbird16 Apprentice
bigbird16
Posted

The friend thing is hard. I think part of it is that people are wrapped up in their own lives, in their own problems and issues and don't necessarily notice or don't know what to do with more than what's right in front of them. It doesn't mean they don't love you. They're just a little clueless or limited in what they feel they can do. Some are only good at expressing in certain ways. I had less than zero support when I was at my sickest. I guess I'm lucky that I didn't actually drive anyone completely away. But it would have been more help than anyone knows to once have been asked, "Are you ok?" I think because of that experience, I try to be more attentive, so that none of my friends ever feels so hurt and alone. But on the flip side, it also solidified that I'm the only one I can count on to be there for me.

IrishHeart Veteran
IrishHeart
Posted
  • Author

The friend thing is hard. I think part of it is that people are wrapped up in their own lives, in their own problems and issues and don't necessarily notice or don't know what to do with more than what's right in front of them. It doesn't mean they don't love you. They're just a little clueless or limited in what they feel they can do. Some are only good at expressing in certain ways. I had less than zero support when I was at my sickest. I guess I'm lucky that I didn't actually drive anyone completely away. But it would have been more help than anyone knows to once have been asked, "Are you ok?" I think because of that experience, I try to be more attentive, so that none of my friends ever feels so hurt and alone. But on the flip side, it also solidified that I'm the only one I can count on to be there for me.

Aw hon, if people left-- it would not have been because YOU drove them away. This isn't our fault that we got sick, although sometimes, I have felt "guilty" that I was unable to do what I used to do. I know that's silly, yet it was what I felt. I don't feel that way anymore.

I have always been a "giver" as someone in the thread has mentioned--but I did it because I LIKED to do those things for others! I do feel my empathetic side is maybe "over-the-top" and perhaps I go overboard with "feeling" what others feel and trying to help. I didn't think that was a "bad" trait, though. I thought everyone was that way. :rolleyes: (nope)

You are so wise!! Depend on yourself.

Thanks for your thoughts! ;)

IrishHeart Veteran
IrishHeart
Posted
  • Author

I slept on it last night--all your thoughts --and you guys are very wise.

I always thought I was pretty independent but when I was ill, I found I was looking for comfort and validation. I agree--it would have been nice if the people I thought were my best friends had asked once and awhile "How are you? Can I come see you?" anything....and when I sent email health updates, I got silence.

One told me, "Don't send anymore unless there's something new. I don't have time to read long updates only to learn that nothing has changed." :o

That just about broke my heart!

I did get a lot of "I'll keep you in my prayers" a lot...which is very sweet and appreciated, but not the same as a loving hug or reassuring presence.

Maybe I have to adopt my hub and Richard's approach...stop expecting things and then there will be no disappointment.

I have learned a great deal from being quite ill---I am a survivor. I am strong. I am a fighter. I am a tough cookie :lol: I have faced hard times in the past and came out the other side...and I'll do it again.(and now, I know who I can trust B) ) These are good things to learn about yourself.

Thank you all so much for your thoughts!! It gave me perspective and a reassurance that I'll be fine --in spite of the disappointment. Love you guys!

Diane-in-FL Explorer
Diane-in-FL
Posted

I slept on it last night--all your thoughts --and you guys are very wise.

I always thought I was pretty independent but when I was ill, I found I was looking for comfort and validation. I agree--it would have been nice if the people I thought were my best friends had asked once and awhile "How are you? Can I come see you?" anything....and when I sent email health updates, I got silence.

One told me, "Don't send anymore unless there's something new. I don't have time to read long updates only to learn that nothing has changed." :o

That just about broke my heart!

I did get a lot of "I'll keep you in my prayers" a lot...which is very sweet and appreciated, but not the same as a loving hug or reassuring presence.

Maybe I have to adopt my hub and Richard's approach...stop expecting things and then there will be no disappointment.

I have learned a great deal from being quite ill---I am a survivor. I am strong. I am a fighter. I am a tough cookie :lol: I have faced hard times in the past and came out the other side...and I'll do it again.(and now, I know who I can trust B) ) These are good things to learn about yourself.

Thank you all so much for your thoughts!! It gave me perspective and a reassurance that I'll be fine --in spite of the disappointment. Love you guys!

You are awesome! And inspirational. We love you too! :)

IrishHeart Veteran
IrishHeart
Posted
  • Author

You are awesome! And inspirational. We love you too! :)

and humbled, now,too..gee whiz, wow....thanks Diane...XXOO

Hey...how's the lobstah in buttah up theya?? (I think I told you this..I grew up in Bahston) :lol:

mushroom Proficient
mushroom
Posted

Hey, I usually eat lobstah and buttah too, except after three months here when I start eating lobstirrr and buttirrr :lol:

celia-with-celiac Apprentice
celia-with-celiac
Posted

I comppletely understand... I have been ruled out as the outkast and biggest complainer in the family and I always feel like they don't want me around bc of my special food needs. My so called "best friends" ditched me to live there own lives and not care once to check on me. It makes me feel like I am not good enough and they make me believe I am just a hypochondriac but i know the pains and feelings I am going through. People are just ignorant anf writing them off is the best thing to do bc what is more important is YOUR HEALTH!!

~Celia

IrishHeart Veteran
IrishHeart
Posted
  • Author

Hey, I usually eat lobstah and buttah too, except after three months here when I start eating lobstirrr and buttirrr :lol:

:lol: :lol: :lol:

IrishHeart Veteran
IrishHeart
Posted
  • Author

I comppletely understand... I have been ruled out as the outkast and biggest complainer in the family and I always feel like they don't want me around bc of my special food needs. My so called "best friends" ditched me to live there own lives and not care once to check on me. It makes me feel like I am not good enough and they make me believe I am just a hypochondriac but i know the pains and feelings I am going through. People are just ignorant anf writing them off is the best thing to do bc what is more important is YOUR HEALTH!!

~Celia

You are no hypochondriac!! Sorry anyone treats you that way. We all know this thing is for real, hon. I wish you lived next door, you could come here for dinner and hang with me!! :)

When anyone says "you are making things" up? you say.."Really? What is my motive?" It's not like you're a little kid trying to ditch school, for pete's sake....that will shut them up.

Ignore those who doubt. In time, you will be well and you can say "I told you so!"

And if they are family, chances are, their health will take a dive and you'll look like a genius.... ;)

Celia..I see you are a "newbie"...if you need any help, please ask. :)

kareng Grand Master
kareng
Posted

Hey, I usually eat lobstah and buttah too, except after three months here when I start eating lobstirrr and buttirrr :lol:

I can still eat Lobster & buttah! I can't eat sticky, mushy white bread! :D

IrishHeart Veteran
IrishHeart
Posted
  • Author

I can still eat Lobster & buttah! I can't eat sticky, mushy white bread! :D

amen to that sister....Hooray for lobstah and buttah!!...curses :angry: on sticky white bread :lol: :lol: :lol:

Diane-in-FL Explorer
Diane-in-FL
Posted

and humbled, now,too..gee whiz, wow....thanks Diane...XXOO

Hey...how's the lobstah in buttah up theya?? (I think I told you this..I grew up in Bahston) :lol:

I am a heathen.....I grew up on the coast of Maine and hate lobster. :lol: How about those Bruins?!

RL2011 Rookie
RL2011
Posted

The friend thing is hard. I think part of it is that people are wrapped up in their own lives, in their own problems and issues and don't necessarily notice or don't know what to do with more than what's right in front of them. It doesn't mean they don't love you. They're just a little clueless or limited in what they feel they can do. Some are only good at expressing in certain ways. I had less than zero support when I was at my sickest. I guess I'm lucky that I didn't actually drive anyone completely away. But it would have been more help than anyone knows to once have been asked, "Are you ok?" I think because of that experience, I try to be more attentive, so that none of my friends ever feels so hurt and alone. But on the flip side, it also solidified that I'm the only one I can count on to be there for me.

Well said, bigbird.

Judy3 Contributor
Judy3
Posted

IrishHeart -

I can relate to what you have said here. I've had a similar experience with my family. They don't want to hear about it and don't want to deal with it so now I'm not invited to family get together's because of that 'gluten thing again' :angry: . My immediate family is good (my sons) and my Mother tries but she is stuck in her own little world. I have friends that while they don't understand completely they are trying and that makes me thankful.

I think that those that walk away have other issues that we can't begin to see until something happens. You seem to be a strong woman as I am but even us strong one's can be hurt by other peoples actions... Hang in there

IrishHeart Veteran
IrishHeart
Posted
  • Author

I am a heathen.....I grew up on the coast of Maine and hate lobster. :lol: How about those Bruins?!

Joy and celebration---it's been awhile since the last Stanley Cup!! ;)

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      how much gluten do I need to eat before blood tests?

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt. I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the...
    4. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for...
    5. catnapt
      - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I...
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    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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