Dealing With The Emotional Aspects Of Ai Disease

[nvsmom]

Don't forget the free T3 too -that's the active hormone in the body. That one you want in the 50-75% range of your lab's normal reference range.

 

I'll join the party too.  I get mad at the unfairness sometimes too.  I get mad that I have health issues and I get really mad that no doctor caught them - it was me and they "confirmed it" decades after my first symptoms started... lets call that birth.  LOL When other stuff goes wrong in life it makes looking after health that much harder. Hubby lost his job, I'm hosting/hosted guests and parties (for kids), and I am waiting to see if I have a pituitary adenoma... it's making it harder to make healthy choices BUT after a year and a half gluten-free, I can honestly say that finding gluten-free foods is not a problem and causes me no real heartache - I actually had to fake disappointment to an aunt this weekend when I couldn't eat her birthday cake so I wouldn't hurt her feelings!  LOL

 

My favorite fortune cookie ever said " Acceptance is the key to happiness."  I LOVE that. My life is what it is. I can work to change what can be changed but some things have to be accepted and moved past or it will affect my quality of life; I only get one life (I think) so I better enjoy it while I can.

[Gemini]

Just say no to that pituitary problem, Nicole!    

 

Actually......with all your other health problems ( and I KNOW that feeling myself), if you do have a pituitary adenoma, I'm sure you will kick butt.  I did the same thing. Diagnosed all my health problems and had the MD confirm them.

There is something terribly wrong with that picture but it makes you learn more and that's when you have control. We will never be bauble-headed patients who just agree with whatever they spew forth.  I am on the same page as you....it is what it is and I can't waste time worrying about it all.  Onwards and upwards.....works for me!

[ItchyAbby]

Yay! A party!

 

Here's what I do (I am a VERY emotional creature and this year has only made that more apparent):

#1 - I cry. I LOVE me a good cry. Cathartic, body wracking sobs, snot running down my face, puffy eyes and all that. (My SO calls it blubberitis). It always makes me feel better afterward. Truly. It sucks at the beginning - you don't wanna cry and try and try not to, but I've learned to just give in and let the waterworks go. It lasts about 5-10 minutes and then things feel better, even a tiny bit. Bonus points if my sweetie is around to hold me and smooth my sweaty hair, while I drench his shirt.

 

#2 - I meditate. I starting working with a meditation teacher back in May as things were getting really bad and I cannot tell you how essential it has been for getting me through this. It's not always easy and it's not always apparent that it's helping, but over time, it really does.

 

#3 - I found some other ways to socialize. This felt really important, as the vast majority of my socializing, pre-dx, was food related. So, now I take sewing classes and visit an open sewing studio. When I am feeling even better, I intend to get back into swing-dancing - group partner dances are so much fun! I also have friends over, or we go and do non-food things, like hikes, museums, or go out for tea. It's so important not to feel isolated.

 

#4 - I practice good sleep hygiene. No computer after 8pm. A hot bath before bed. Mellow activities like knitting or reading a (not too stimulating) book. Hop into bed at the same time every night. Sleep mask + ear plugs + sound conditioner. This has made a huge difference in the quality of sleep I have been getting and I'm feeling a bit more stable for it.

 

#5 - I exercise in whatever way I can. Lately, a morning walk in the cold air has been doing me good.

 

#6 - I accept that there are going to be some "bad" days - some days I just don't got it. I rest more, move slowly and just be extra, super-duper nice to myself.

 

#7 - I reach out when I need to. If I feel myself slipping into that dark hole, I find an available family member or good friend asap. They let me blabber/blubber if I need, but mostly, just their presence and distraction is what I need. (Go ahead and call your mom! That's what moms are for!) I also come here, sometimes just to say that I am having a hard time. Everyone here understands.

 

*hugs* It's no small thing you are doing, here, so it stands to reason that you will be emotional.   You'll get through this, and the things that seem difficult now will become normal (carrying snacks everywhere, etc).

[BelleVie]

Thanks so much for the replies, everyone. I will respond more to this thread later when I have some time, but I just wanted to tell you guys that you are wonderful and, are so compassionate, and I feel really lucky that I stumbled upon this forum. Last night, I got a good night's sleep and am feeling much better this morning. Pity party is done! Thanks for letting me indulge. I think I've just been in kind of a mourning phase, but I am moving on from that now into being more proactive about everything. I didn't mean to be a Debbie Downer if I was. Here's some digital sangria and appetizers for y'all. 

[BelleVie]

Colleen, my diet is going well as far as me keeping my end of the bargain, but I keep having accidents with the foods that I am eating, like I did with the contaminated rice. Lately I've had some new, sort of bothersome symptoms, like vertigo and a different kind of headache, that I'm not sure are gluten related or not. 

 

bburmeister, thank you so much for the points on being mentally strong. I'm going to print that out, and put it above my desk to keep my mind focused. 

 

Gemini, it's not so much food deprivation for me as it is the emotional toll of not quite being able to get well just yet. I know that other people feel tired, but we all live in the depths of our own experiences. It can be disheartening, is all I'm saying, to deal with the particular brand of tiredness that comes with being sick long-term, rather than just a sort of body tiredness from a long day, ya know? 

 

And I know that a lot of people have it far worse than me, really I do know that, and I am thankful that I am not struggling with secondary illnesses like thyroid problems or diabetes. 

 

nvsmom, I love the "Acceptance is the key to happiness" cookie quote. That one will also be going above the desk. And I agree completely. 

 

abby, thanks for all of that. mindfulness and mediation keep popping up in my life. I think there's a theme here? I definitely need to work on that. And I appreciate the sleep hygiene advice. (never heard of it put that way before!) I guess some days we do just need to be nice to ourselves and realize that we have limits. I'm a type A personality (not sure if that comes through in forum-land, hehe) and it's hard for me to admit when I just need to back off and STOP and just let whatever it IS go away to its own devices. 

 

Have a good day everyone. Or, sleep, I guess, since you all are mostly on the other side of the world!

 

*edit to this* I think I got glutened by a bag of chickpeas yesterday, and today again, so it explains why I went into crazyland and got so upset. It took me eating the whole bag to figure it out! AH! 

[GF Lover]

Hey Bells,  When I started my gluten free life I did not even know about this site.  I found it about 2 months later.  I started out by Juicing every day because at that point I was afraid to eat ANYTHING, I had been in such pain for so long.  Then I started on only fresh whole foods.  I still didn't know how to read labels and the such, things I needed to do in the kitchen, etc.  Then I found this site and the seasoned members opened up a whole new world for me.  It was here that I found out about Udi's bread, lol.  This fall I have started baking and making complex meals, again with the encouragement from the Forum.  My diet slowly evolved to what it is today.  I'm thinking that in your case, you might start from scratch again.  Take out grains, I never had any grains for about 3 months into my diet.  No dairy, I can't remember if you've stopped dairy or not.  Double check all of your supplements and meds.  Stay out of restaurants until your well healed and have no symptoms going on then you can try that again.  You will get this licked Bells.

 

Colleen

[notme]

  On 12/3/2013 at 11:11 PM, ItchyAbby said:

Yay! A party!

 

Here's what I do (I am a VERY emotional creature and this year has only made that more apparent):

#1 - I cry. I LOVE me a good cry. Cathartic, body wracking sobs, snot running down my face, puffy eyes and all that. (My SO calls it blubberitis). It always makes me feel better afterward. Truly. It sucks at the beginning - you don't wanna cry and try and try not to, but I've learned to just give in and let the waterworks go. It lasts about 5-10 minutes and then things feel better, even a tiny bit. Bonus points if my sweetie is around to hold me and smooth my sweaty hair, while I drench his shirt.

 

#2 - I meditate. I starting working with a meditation teacher back in May as things were getting really bad and I cannot tell you how essential it has been for getting me through this. It's not always easy and it's not always apparent that it's helping, but over time, it really does.

 

#3 - I found some other ways to socialize. This felt really important, as the vast majority of my socializing, pre-dx, was food related. So, now I take sewing classes and visit an open sewing studio. When I am feeling even better, I intend to get back into swing-dancing - group partner dances are so much fun! I also have friends over, or we go and do non-food things, like hikes, museums, or go out for tea. It's so important not to feel isolated.

 

#4 - I practice good sleep hygiene. No computer after 8pm. A hot bath before bed. Mellow activities like knitting or reading a (not too stimulating) book. Hop into bed at the same time every night. Sleep mask + ear plugs + sound conditioner. This has made a huge difference in the quality of sleep I have been getting and I'm feeling a bit more stable for it.

 

#5 - I exercise in whatever way I can. Lately, a morning walk in the cold air has been doing me good.

 

#6 - I accept that there are going to be some "bad" days - some days I just don't got it. I rest more, move slowly and just be extra, super-duper nice to myself.

 

#7 - I reach out when I need to. If I feel myself slipping into that dark hole, I find an available family member or good friend asap. They let me blabber/blubber if I need, but mostly, just their presence and distraction is what I need. (Go ahead and call your mom! That's what moms are for!) I also come here, sometimes just to say that I am having a hard time. Everyone here understands.

 

*hugs* It's no small thing you are doing, here, so it stands to reason that you will be emotional.   You'll get through this, and the things that seem difficult now will become normal (carrying snacks everywhere, etc).

thanx, abbs - good stuff.  love #6 and #7  (miss my mom!)  i have been volunteering for this and that.  helps to forget your troubles and do good stuff in the community    meet new people and have fun with a purpose.

 

  On 12/3/2013 at 11:54 PM, BelleVie said:

 Here's some digital sangria and appetizers for y'all. 

(tastes like zeroes and ones.......    )

[moosemalibu]

  On 12/4/2013 at 10:19 PM, notme! said:

thanx, abbs - good stuff.  love #6 and #7  (miss my mom!)  i have been volunteering for this and that.  helps to forget your troubles and do good stuff in the community    meet new people and have fun with a purpose.

 

(tastes like zeroes and ones.......    )

 

Hahahaha binary nerd joke! Love it!

[lmondor]

Hello- I have been looking at posts for months and just decided to join today. Not sure why I took so long. I was diagnosed this past summer (TTG>100 and confirmed with intestinal biopsy). I also have been having a hard time with this. I am 46 and have been very ill since 2007. I have been gluten free since I was diagnosed but my testing in Oct still showed TTG >30. My doctor told me I was not compliant enough. I was so upset because I thought I was being careful I am learning more about hidden sources and paying way more attention to labels. I know I had some vitiman C with gluten by accident, I have also had pumpkin seeds I thought was safe because I didn't read warning on the back. I could go on but you get the drift- I am making mistakes even though I am trying.. I have good days and bad. It helps to read I am not the only one that is struggling with this. I know it will get less overwhelming with time, I appreciate all of your posts- I find it helps me feel better!

[kareng]

  On 12/5/2013 at 11:10 PM, lmondor said:

Hello- I have been looking at posts for months and just decided to join today. Not sure why I took so long. I was diagnosed this past summer (TTG>100 and confirmed with intestinal biopsy). I also have been having a hard time with this. I am 46 and have been very ill since 2007. I have been gluten free since I was diagnosed but my testing in Oct still showed TTG >30. My doctor told me I was not compliant enough. I was so upset because I thought I was being careful I am learning more about hidden sources and paying way more attention to labels. I know I had some vitiman C with gluten by accident, I have also had pumpkin seeds I thought was safe because I didn't read warning on the back. I could go on but you get the drift- I am making mistakes even though I am trying.. I have good days and bad. It helps to read I am not the only one that is struggling with this. I know it will get less overwhelming with time, I appreciate all of your posts- I find it helps me feel better!

Sounds like you are doing quite well. It can take a long time for the TTG to get down to " normal". > 100 could be 300....you don't know. So you have come a long way,

"tTG normalizes slowly when on a strict gluten-free diet. This process may take years if the starting level is very high. If tTG is still high after a long time, aside from gluten sneaking into one’s diet, this may simply mean, especially with low titers, that it’s falsely elevated—common in patients who have other autoimmune conditions, such as chronic liver disease, Type 1 Diabetes, Crohn’s Disease or thyroiditis."

Open Original Shared Link

[lmondor]

I didn't realize it could take so long. I guess I am doing better than I thought. I had liver enzymes in the 500 range and they couldn't figure it out for years. I was afraid I was going to die. I know my liver enzymes have tested normal in October-finally! So I know t am getting better even though the antibodies are still showing up. I will get the hang of this. Thank you for your reply!

[Gemini]

Yeah...your doctor is uninformed about the amount of time it takes for tTg to come down.  For it to come down from over 100 to just over 30 since this summer is remarkable and I would say you are doing a great job.  When it comes to healing, doctors are dopes.

[lmondor]

Thank you!!

[WestCoastGirl]

I actually put myself into denial over my gluten issues for several years, until they became so huge that I could no longer ignore them. I can't live my life this way any more.

 

Here's how I look at it. Yes, it's a lifelong condition. Yes, we have to eat differently (and be way more careful). BUT...with *some* issues, there isn't a comparatively easy fix such as simply changing one's diet. Some issues have no actual "fix." Some can be fatal. Some are crippling. With celiac or NCGI, it's a matter of changing one's diet...doesn't that actually make us lucky?

 

I'm not saying it's a simple thing to make sure one doesn't get glutened. I *am* saying, it's such an *easy* (not simple) fix...we're not talking medications here, surgery, we're not talking about something that progressively takes away the use of our limbs and we have to deal with THAT...what we have to do is change our diet.

 

I consider myself damned lucky in that regard.

 

As for other people being able to "eat anything they want" (someting I personally struggled with), can they really? How many overweight people do you know? How many generally sick people do you know? How many people do you know who have autoimmune issues, who have CFS and can't figure that out, or have fibromyalgia and can't figure that out...I know SO many people who are walking around sick all the time, migraines they can't figure out, have allergies or rashes that no doctor can seem to find the cause of, joint aches and pains, arthritis, bloating that plagues them, stomach issues. How many of those people are probably reacting to food? I would guess a WHOLE lot of them.

 

Everybody else can't eat gluten...in fact, it's my belief that a very small percentage actually can, without any effects, particularly today's Frankenwheat.

 

They eat it because "there can't be anything bad about wheat, it's so wholesome" and because they grew up on it (more genetically modified by the decade or sometimes by the year) and because it's in everything and because everyone else is doing it.

 

But they can eat it with no effects? I just don't believe that.

 

Look how sick we've become as a nation (the U.S., and other first-world nations are quickly following suit) in the past couple of decades, with stuff nobody can "figure out..." stuff that's SO much like what we known wheat-intolerant people are going through. Things that doctors are just making up names for willy-nilly because in previous decades, nobody had heard of such collections of complaints. Or diagnoses that the cure doesn't work for, so they're right back to the doctor again...and again, and again.

 

Many of my friends, I would bet, are just as gluten intolerant as I. The only differences between them and me is a) I face it and accept it and modify my diet over it and my problems may minimize, while theirs will probably grow until, like me, one day they have to face it.

 

I don't envy all the people around me eating wheat.

[C-Girl]

I also didn't want to post something like this and be a downer, but I've been having quite a few pity parties these days. All the holiday treats in the grocery and it's my first Christmas as a diagnosed celiac and I am realizing I can never, ever again just buy Christmas cookies. NEVER. If I don't make them, I won't have them. I can never again enjoy my mom's pierogi's, her pies, her noodles or my beautiful, crusty loaves of Challah. I'll never again be able to have a sandwich on super delicious Jewish rye bread.

 

Went for a visit with the family and felt like such an outsider - more than I usually do as I'm the only one who's moved away. It's really, really hard not to have one big pity party this time of year.

 

However, I did pull up the old "you know you're a celiac if..." threads just so I could have a laugh.

https://www.celiac.com/forums/topic/48712-you-know-youre-a-celiac-if/

https://www.celiac.com/forums/topic/5928-you-might-be-a-celiac-if/?p=35889&fromsearch=1#entry35889

[WestCoastGirl]

Coffnglr! Open Original Shared Link is for you!

[Nikki2777]

  On 12/9/2013 at 5:31 PM, coffngrl said:

 of Challah. I'll never again be able to have a sandwich on super delicious Jewish rye bread.

 

 

I don't know if you've tried it yet, but the Schar Deli-Style bread is pretty close to the real thing, and you don't have toast it.  I put some hard salami and mustard on it, and it's almost as good.

 

Still working on finding a good challah substitute though!

[Salax]

  On 12/9/2013 at 5:21 PM, WestCoastGirl said:

I actually put myself into denial over my gluten issues for several years, until they became so huge that I could no longer ignore them. I can't live my life this way any more.

 

Here's how I look at it. Yes, it's a lifelong condition. Yes, we have to eat differently (and be way more careful). BUT...with *some* issues, there isn't a comparatively easy fix such as simply changing one's diet. Some issues have no actual "fix." Some can be fatal. Some are crippling. With celiac or NCGI, it's a matter of changing one's diet...doesn't that actually make us lucky?

 

I'm not saying it's a simple thing to make sure one doesn't get glutened. I *am* saying, it's such an *easy* (not simple) fix...we're not talking medications here, surgery, we're not talking about something that progressively takes away the use of our limbs and we have to deal with THAT...what we have to do is change our diet.

 

I consider myself damned lucky in that regard.

 

As for other people being able to "eat anything they want" (someting I personally struggled with), can they really? How many overweight people do you know? How many generally sick people do you know? How many people do you know who have autoimmune issues, who have CFS and can't figure that out, or have fibromyalgia and can't figure that out...I know SO many people who are walking around sick all the time, migraines they can't figure out, have allergies or rashes that no doctor can seem to find the cause of, joint aches and pains, arthritis, bloating that plagues them, stomach issues. How many of those people are probably reacting to food? I would guess a WHOLE lot of them.

 

Everybody else can't eat gluten...in fact, it's my belief that a very small percentage actually can, without any effects, particularly today's Frankenwheat.

 

They eat it because "there can't be anything bad about wheat, it's so wholesome" and because they grew up on it (more genetically modified by the decade or sometimes by the year) and because it's in everything and because everyone else is doing it.

 

But they can eat it with no effects? I just don't believe that.

 

Look how sick we've become as a nation (the U.S., and other first-world nations are quickly following suit) in the past couple of decades, with stuff nobody can "figure out..." stuff that's SO much like what we known wheat-intolerant people are going through. Things that doctors are just making up names for willy-nilly because in previous decades, nobody had heard of such collections of complaints. Or diagnoses that the cure doesn't work for, so they're right back to the doctor again...and again, and again.

 

Many of my friends, I would bet, are just as gluten intolerant as I. The only differences between them and me is a) I face it and accept it and modify my diet over it and my problems may minimize, while theirs will probably grow until, like me, one day they have to face it.

 

I don't envy all the people around me eating wheat.

 I agree 100%. Well said    I think generally its all about perpective and how we perseve our illness will also be how we handle it emotionally.

[love2travel]

  On 12/9/2013 at 7:52 PM, Nikki2777 said:

I don't know if you've tried it yet, but the Schar Deli-Style bread is pretty close to the real thing, and you don't have toast it.  I put some hard salami and mustard on it, and it's almost as good.

 

Still working on finding a good challah substitute though !

Simona's Challah recipe on this site is as good as you are going to get.  It is homemade and rollable so you can form into ropes to braid the bread.  It is one of my favourites and I am a very experienced baker and cook and as such, am very picky.    Fun to make, too!

[C-Girl]

  On 12/9/2013 at 8:15 PM, love2travel said:

Simona's Challah recipe on this site is as good as you are going to get.  It is homemade and rollable so you can form into ropes to braid the bread.  It is one of my favourites and I am a very experienced baker and cook and as such, am very picky.    Fun to make, too!

 

Link? I have a week off over the holidays - maybe that's long enough to produce something that's not a concrete block