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I Have So Many Questions


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#61 ItchyAbby

 
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Posted 18 August 2013 - 08:27 PM

I know, Squirmy. I keep trying to reign in my hopes so as to not get disappointed but honestly, I don't know how to do that. I just want it gone. I just want to feel normal and be able to go out to dinner with my family or grab a bite with friends. I just want to not constantly be fearful that it's coming back, possibly forever, possibly worse.

 

But, none of that is so. And I am brooding over the past - the times when it was clear and I wish that I had read the signals better. I would be clear for months at time. I wish I had known. Then, I was clear for a whole week back in June, between the two worst outbreaks so far. Why was I totally clear then and not now? What did I do wrong? There is no answer for this, I know, yet I still seek it desperately, which only adds to the suffering.

 

I don't know how to maintain emotional equilibrium through this


  • 0

Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


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#62 squirmingitch

 
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Posted 19 August 2013 - 07:06 AM

Hindsight is 20/20. I could say the same. I also searched & searched & searched until I was blue in the face when I began to get more & more places & never once did I run across celiac disease or dh. I put in every word about itchy skin & blisters every which way I could think to put it into the search engine. 

Think about this..... If you had not met your sweetie & he was not gluten intolerant then most likely you would right this moment still be eating gluten & the rash would be going insane & you would be going to the derm getting a ton of misdiagnoses & trying a bunch of creams & pills all to no avail. You would be continuing to do damage to your villi & the rest of your body. And this might have gone on for years like so many others have experienced. So perhaps it is kismet that you & your SO met when you did. And being gluten intolerant, he can relate & respect what you are going through.

And I know you need your "mourning time". I'm sorry --- I forgot about that phase.

You're going to be wonky for a while & then you will straighten out some emotionally. 

We're here & you can moan & groan & pitch a fit & cry. We're listening.


  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#63 ItchyAbby

 
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Posted 20 August 2013 - 12:33 PM

It does feel like kismet! I feel very lucky to have this man (my sweetheart) in my life. I really cannot overstate how essential he has been in getting me through this. He has a fair amount of experience in caring for the ill and infirmed so I am in good hands. And he is so easygoing about food, which makes this restrictive diet so much easier. He just eats whatever I'm eating, never complaining, always complimenting. (Though I do make sure he gets his sardines once in while. Boy, does he love sardines)

 

I do mourn, Squirmy. Some days all I think about is what I cannot do anymore and I feel very alone or isolated. I want to go running, hiking or bike-riding but getting hot and sweaty is just no good right now. I want to sit in a taqueria, eating chips and drinking margaritas without worrying about what kind of salt is used. I want to travel, but that reality seems very far off. I want so many things that I just cannot have right now, and some that I will never have again. So I am trying ot focus on what I CAN do: I can sew and knit. I can cook and can. I can have friends over here and we can sit in the backyard and enjoy the sunset. I can do small house projects. Basically, I am trying to find ways to feed my creative self as that is as satisfying as eating for me.

 

This current outbreak is a little different: it has spread nearly all the way to the margins of the worst outbreaks back in June, but it's mostly flat, as opposed to lumpy, hivey and blistery. And it is so red! On my tummy there are not really individual spots, just a big mottled redness. The sides show slightly more differentiation and a few hives, but still, mainly red-hot and flat. It feels hot and prickly, like my skin has small tacks in it. The itch is there and super annoying but not unbearable. I guess my tolerance for itch is really high now!

 

100ef0c3-88e9-4c4d-8ca2-a140a2eee62d_zpsPhotoon8-20-13at123PM_zpsd28b6bd0.jpgPhotoon8-20-13at122PM_zps88304470.jpg


  • 0

Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#64 squirmingitch

 
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Posted 20 August 2013 - 04:47 PM

Awwwwwwwwwwwwwwwwwwwwwwwww man!  :(  :(  :(  :(  :(

 

I know that heat. Stock up the freezer with ice packs! A cold soak in the tub might help too. 

 

Awwwwwwww honey, I'm so, so sorry this is happening to you. Geez this stuff stinks!!!!!!! 

 

((((((((((((((((((((((((((((((((((((((((((((((ABBY)))))))))))))))))))))))))))))))))))))))))))))))))


  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#65 ItchyAbby

 
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Posted 20 August 2013 - 06:41 PM

Shit that looks bad, uh?  I wonder if I should consider going low-sal as well? I do eat a fair amount of almonds now and herbs and many high-sal fruits. Good lord, more restrictions. But, I'll do it if that what it takes to get through this.


  • 0

Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#66 ItchyAbby

 
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Posted 30 August 2013 - 09:46 AM

Just an update: The rash is fading now. I have learned that stress is a HUGE factor, more than I knew. So I am working to reduce it as much as possible, through meditation, gentle exercise, therapy and naps.  :D  Food is less of an issue now - meaning, I have gotten through what I think was the worst of the learning curve of both Gluten-Free and low iodine and now it just feels fairly normal. I was even able to go out for a little snack yesterday! There is a vegan gluten free bakery in town (Petunia's Pies if anyone is ever in Portland). Vegan seemed like a good place to start because I can reduce the number of things I need to remember to exclude (dairy and eggs, namely). They use only kosher salt, except on their sea salt brownies, which I did not want anyway. They have an ingredients list for everything they make and are super accommodating - they don't get exasperated by a string of weird questions. So I sat and had a piece of orange-almond-olive oil bundt cake and some cardamom tea. It's a painfully cute bakery and the sun was shining on me and for a brief moment I remembered what normal was like. It was so nice.

Photoon8-30-13at1019AM_zpsb6890f52.jpgPhotoon8-30-13at1019AM3_zpsfb8bde84.jpgPhotoon8-30-13at1019AM2_zps5007905e.jpg


  • 0

Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#67 squirmingitch

 
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Posted 30 August 2013 - 03:38 PM

Yep, the rash is purple/browning  now so that outbreak is on it's way to done. Yay!

 

Wooooooooo Hooooooooooooo!!!!!!!!!!!!!!!!! Going out for a nice little snack! Sounds delish!!!! Next time eat one for me will ya? We don't have any such type of place here. The only thing we have is a small restaurant who does understand gluten-free & cross contamination b/c they had an employee with celiac disease who taught them about it & got them to offer gluten-free meals. We haven't tried them out yet but will hopefully soon. We all need to go out to eat & feel "normal" sometimes. 


  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#68 ItchyAbby

 
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Posted 31 August 2013 - 09:45 AM

*fingers furiously crossed* It's strange: figuring out just HOW much stress affects my outbreaks has made me feel just a little more hopeful. Like, it's one more piece of the puzzle that I have some control over. I cannot avoid stress, of course, but I can prepare and use the tools I have to manage it. And it also confirms something that I have always believed about myself: I do not operate well under stress, and I prefer to live life in the slow lane.

 

I'd mail ya a whole orange-almond-olive oil bundt cake if you wanted! :D  It was really tasty and the moment of "normal" went a long way in making me feel better about the future. I am fortunate that Portland seems to be fairly advanced as far as food intolerance awareness. There are more and more gluten free places everyday, some quite decent, all very accommodating, which helps me a lot. No Low-Iodine restaurants as of yet. Weird. :P

 

Tomorrow marks 3 months totally gluten free and 1.5 months low iodine. I'm celebrating by going to an all day meditation workshop. And I might bake some cookies...


  • 0

Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#69 squirmingitch

 
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Posted 31 August 2013 - 12:49 PM

You're getting a handle on it! Keep the faith!


  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#70 ItchyAbby

 
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Posted 29 September 2013 - 10:27 PM

Another month has passed. Coming up on 4 months of gluten-freedom and 2.5 months low iodine. Been reintroducing dairy, slowly after finding a shepherd that does not use iodine on the teat wash. Oh, glorious yogurt and cheese! Also, introduced butter. So far, so good. Tried some egg yolks, but I seem to be mildly reactive to them - I will need to try a few more times to be sure.

 

The rash has entered a new phase - less spread overall, much less itch and more just individual spots than the big continents that it used to be. The cooler weather helps. And the fact that I am not freaked out daily helps a LOT.  My nerves and emotions are much steadier these days - just re-reading my old posts, I can remember how I just felt like a live wire of fear and emotion, my poor tired mind busily, urgently trying to make sense of it all. Things are much calmer now and for that, I am thankful.

 

The one things that is lingering a bit is tiredness. I chalk this up to months of sleep deprivation, but if it goes on much longer I am thinking that I need to talk to my doctor about it.

 

Mostly, I just want to emphatically reiterate how essential this forum has been during this whole process. To find so many good people, with kind and helpful words on the internet? I feel like I hit the jackpot. <3


  • 0

Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.





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