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Upset, Confused, Venting, Scared & Frustrated


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#31 squirmingitch

 
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Posted 30 March 2012 - 03:17 AM

Dani, breakfast was not a glass of water. YAY! Low sal: Brown rice cake with sunflower seed butter. If you let the butter sit on the rice cake the moisture will soften it & I believe you will be able to eat it with your sore mouth. AND I had an entire glass of MIIIIIIILLLLLLKKKKKK. Gawd I love dairy!

I found a local dairy who does not use iodine wash before milking but they do use it after but not for cleaning milking equip. & they grow their own feed so no iodine added there. The milk undoubtedly has some iodine but that's okay -- it can't have great amounts. They also makes CHEESES! YAY!

So I'm going back on iodine, at least enough to get over the min. RDA.

Haven't read much on the sal thing yet --- only just waking up, but I think that may very well be my problem. I had been eating a lot of oranges & I WAS eating golden delicious apples till they became not so great quality when I switched to different varieties of red apples.

I'm so happy to see potatoes & carrots are still on the "have" list. I eat a lot of carrots --- organic.

Okay, research today & get going on low sal for now. Then will check out the other factors/foods.

GOOD MORNING everyone! It's a beautiful morning in my eyes. My psyche is doing a happy dance from having a whole glass of milk!Posted Image
  • 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.

 


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#32 dani nero

 
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Posted 30 March 2012 - 04:49 AM

Dani, breakfast was not a glass of water. YAY! Low sal: Brown rice cake with sunflower seed butter. If you let the butter sit on the rice cake the moisture will soften it & I believe you will be able to eat it with your sore mouth. AND I had an entire glass of MIIIIIIILLLLLLKKKKKK. Gawd I love dairy!

I found a local dairy who does not use iodine wash before milking but they do use it after but not for cleaning milking equip. & they grow their own feed so no iodine added there. The milk undoubtedly has some iodine but that's okay -- it can't have great amounts. They also makes CHEESES! YAY!

So I'm going back on iodine, at least enough to get over the min. RDA.

Haven't read much on the sal thing yet --- only just waking up, but I think that may very well be my problem. I had been eating a lot of oranges & I WAS eating golden delicious apples till they became not so great quality when I switched to different varieties of red apples.

I'm so happy to see potatoes & carrots are still on the "have" list. I eat a lot of carrots --- organic.

Okay, research today & get going on low sal for now. Then will check out the other factors/foods.

GOOD MORNING everyone! It's a beautiful morning in my eyes. My psyche is doing a happy dance from having a whole glass of milk!Posted Image


It's great that you're feeling happy and positive today! I had brown rice with tomato onion soup this morning. My sores are healing and I'm trying to chew away from them haha :-) I'm not sure if boiling fresh tomatoes is ok but I did it anyway. I sadly can't use any legumes so no sunflower butter for me.
How did you make the brown rice cake? :-O I want some! I want anything with the word cake attached to it lol!
  • 0
Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#33 squirmingitch

 
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Posted 30 March 2012 - 05:24 AM

Actually Dani, I was just looking & boiling tomatoes is the only way as canned tomato products are high in sals if you're watching sals --- besides the fact that it would be a processed food. So you done good. But I'm not sure the acidity of tomatoes will go well for your mouth sores but if it doesn't irritate them then go for it!
Oh no, sorry to disappoint you but rice cakes are not like cake at all. They are like puffed rice smushed together & dried so crunchy is the texture & not much taste at all. It's really just something to put the nut butter on.
And you can have sunflower seed butter as sunflower seeds are a seed & not a legume.Posted Image

Yes, starting out very positive this morning.Posted Image
  • 1

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.

 


#34 IrishHeart

 
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Posted 30 March 2012 - 05:55 AM

SQUIRMY GIRL- (hugs for you--the gentle and non-abrasive kind ;) )

I have been "accused" by my pals that I am a "long poster" :lol: --so bear with me ---as this is your Friday morning pep talk. ;)

It is impossible to avoid stress in life...... unless we live like monks (but that would mean no sex or booze and that does not sound very appealing :lol: ) So, we all need to find ways to handle stress. Sounds easy, doesn't it? hahahahaha!

This is NOT easy when our bodies are ill and depleted from celiac. Believe me, I know. :rolleyes:

Your story mimics mine. I already know we are the same age and we have likely had long-simmering celiac for years and it just took the trigger to let this monster loose. It does not matter that "others may have it worse", hon. While that may be true, do not diminish what has happened to YOU because it is significant and has taken a toll. Everyone has a story on here.

Our stories may not be the same in the exact details of life experiences, of course, but the ACCUMULATION of stressors --when they came one at a time were easily handled--- but piled one on top of the other? JUST TOO flippin MUCH. The day my Dad died, I burst into flames. I am not kidding. I was pushed to the wall after years of stressful life events and even though I handled them all, my body was screaming at me with various symptoms. I just kept going. The neurological stuff (the last and worst of the symptoms I have) kicked in and I could no longer force myself to keep going. My body just broke under the weight of it all. My life came to a crashing halt. Not that celiac was a gift by any means, but getting really sick and incapacitated and in burning hell pain?--well, that GOT my attention. Unfortunately, it took so long to figure it out. I lost nearly 4 years of my life to this thing.

All I can say is (as trite as this may sound) take it one day at a time. Heal and nourish your body as best as you can. Know you are on the path to getting well. You have removed the major culprit and the healing is happening. Try to relax into that thought. Once I did that, I stopped fretting so much that the "magic wasn't happening" fast enough. (but it took a few veterans on here to get me to see that part :) )

After all I have been through, I no longer let the daily life-crap thrown at me get me down. Why? Because the worst that could happen--already has. And we survived (hubs and I) :)

Follow the advice of these good women who have successfully dealt with their DH and talk to us anytime and vent. ;)

I suck the life out of every single day now. :lol: Little things I could not do (open a jar, tie my own shoes, walk without gasping for breath, read a paragraph and comprehend it, or multi-task, or even drive my car)-- I can do them again. It took me well over a year to see real progress. I could not walk, sit, stand or lie down without searing pain. This week, I painted my toenails red for the first time in 5 years (whoo hoo!) and I walked 3/4 of a mile on 2 different days and read a book! I cooked a multi-course meal for friends again (my passion) and photographed a sunset. I watched a spectacular sunrise last week --and it was magnificent. Do I still have pain? yes. Am I all better? Nope. But I am not the sick woman I was at all!

These are not monumental events at all, but for someone who is in recovery from the devastating symptoms from celiac, oh baby, it is HUGE! :lol:

I enjoy all the moments, even the ones that are "boring" and seemingly plain.

Too bad it took almost losing my life to drive that home to me.

My point? I know, I know.....get to the damn point, Irish, puleeze, for the love of mike! :lol:

Honey, you are going to be all right in time. Believe it. ;)

Happy Friday ! Cheers, IH
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#35 pricklypear1971

 
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Posted 30 March 2012 - 06:06 AM

Dani, breakfast was not a glass of water. YAY! Low sal: Brown rice cake with sunflower seed butter. If you let the butter sit on the rice cake the moisture will soften it & I believe you will be able to eat it with your sore mouth. AND I had an entire glass of MIIIIIIILLLLLLKKKKKK. Gawd I love dairy!

I found a local dairy who does not use iodine wash before milking but they do use it after but not for cleaning milking equip. & they grow their own feed so no iodine added there. The milk undoubtedly has some iodine but that's okay -- it can't have great amounts. They also makes CHEESES! YAY!

So I'm going back on iodine, at least enough to get over the min. RDA.

Haven't read much on the sal thing yet --- only just waking up, but I think that may very well be my problem. I had been eating a lot of oranges & I WAS eating golden delicious apples till they became not so great quality when I switched to different varieties of red apples.

I'm so happy to see potatoes & carrots are still on the "have" list. I eat a lot of carrots --- organic.

Okay, research today & get going on low sal for now. Then will check out the other factors/foods.

GOOD MORNING everyone! It's a beautiful morning in my eyes. My psyche is doing a happy dance from having a whole glass of milk!Posted Image


Well, double yay!

You've inspired me to go to the farmer's market to look for a source of li, raw milk for kefir. I'm trying to make and eat some fermented foods. Hope I don't blow up the kitchen.

Also must find a pork roast for Easter....

Anyway, I'm glad you had a good breakfast and happy Friday!!!
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#36 dani nero

 
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Posted 30 March 2012 - 06:26 AM

Actually Dani, I was just looking & boiling tomatoes is the only way as canned tomato products are high in sals if you're watching sals --- besides the fact that it would be a processed food. So you done good. But I'm not sure the acidity of tomatoes will go well for your mouth sores but if it doesn't irritate them then go for it!
Oh no, sorry to disappoint you but rice cakes are not like cake at all. They are like puffed rice smushed together & dried so crunchy is the texture & not much taste at all. It's really just something to put the nut butter on.
And you can have sunflower seed butter as sunflower seeds are a seed & not a legume.Posted Image

Yes, starting out very positive this morning.Posted Image


The tomato sauce is a little acidic but not that bad. Swedish tomatoes are also barely sour and filled with water, so they're tolerable. My mouth sores are healing nicely actually. I can't chew directly on them, but they hurt less than my nose and throat. My throat is what's bugging most today.

I think my IQ has dropped dramatically. For some reason I've been categorizing nuts and seeds under legumes ever since I learned about G6PD. I have been confusing things for some time actually, thanks for correcting me, I would have otherwise avoided nuts for god knows how long lol :-)
  • 0
Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#37 IrishHeart

 
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Posted 30 March 2012 - 06:39 AM

I think my IQ has dropped dramatically.



Your IQ is intact, I assure you! That brain fog, fuzziness, short-term memory lapses and lack of concentration/comprehension--just maddening isn't it?! :blink: Made me nuts.

This, too, will resolve itself. :)

Make sure you guys are getting enough EFAs and a good multivitamin along with probiotics.

Sorry to keep butting into your thread that is mostly about DH...
carry on! xxooIH
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#38 dani nero

 
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Posted 30 March 2012 - 09:15 AM

Your IQ is intact, I assure you! That brain fog, fuzziness, short-term memory lapses and lack of concentration/comprehension--just maddening isn't it?! :blink: Made me nuts.

This, too, will resolve itself. :)

Make sure you guys are getting enough EFAs and a good multivitamin along with probiotics.

Sorry to keep butting into your thread that is mostly about DH...
carry on! xxooIH


I would say your but is welcome anytime, but that would sound wrong :-) Can't complain when you're giving advice.
  • 0
Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#39 Di2011

 
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Posted 30 March 2012 - 09:45 AM

I can't make sense of DH at all, honestly.

There are iodine and sals in everything. Well, at least almost everything. Some people are more sensitive than others - I don't know why.

I'm not sure exactly HOW the iodine interacts with iga - I've heard it described as an activator and necessary, but perhaps it's better descrIbed as an exacerbate?

http://www.celiac.co...rmis/Page1.html

http://elaine-moore....tiformis-a21774

I'd switch your focus from iodine to sals and see if that benefits you more. It isn't healthy to withhold iodine for long periods (at least at a near zero level). I cut mine drastically for two weeks only, then started adding back. While I still watch it (wouldn't want to eat a meal like I did at Thanksgibing, again - iodine out my ears) I do believe I'm getting at least 1000 mcg which is the high end for someone with a problem (Hashis/DH).

Coconut AND chocolate are high in sals. Grains can be, also. I don't remember the other new foods you'd added.

I know this is frustrating and painful. Hang in there. Those antibodies will fall eventually.

The real bitch about Celiac and particularly DH is that it is so ostracizing. And having a rash makes you so self-conscious and puts you in so much physical pain. I changed everything about my life to accommodate that damn rash. My clothes, my bras, my schedule, my job, my food, my hobbies. EVERY FRICKING THING. It just pisses me off.

It's hard, really hard. I know. It changes everything and then when you think you get a break it screws with you again.

Okay, enough of my vent. I had insomnia last night and feel like I'm hung over. Ugh.


OMFG I've had so many nights like this .. glad we are all getting open and honest. I really is life changing
  • 0

#40 IrishHeart

 
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Posted 30 March 2012 - 09:46 AM

I would say your but is welcome anytime, but that would sound wrong :-)


:lol: ...Your funny bone is showing....
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#41 IrishHeart

 
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Posted 30 March 2012 - 09:50 AM

TOMATOES (and I think this MAY mean all tomato products?--as I recall when I was avoiding them?) are HIGH in Sals. Just FYI!

There is a food guide here: (prickly may have already posted this one?)

http://salicylatesen...out/food-guide/
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#42 dani nero

 
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Posted 30 March 2012 - 11:13 AM

TOMATOES (and I think this mean all tomato products--as I recall when I was avoiding them?) are HIGH in Sals. Just FYI!

food guide here: (prickly may have already posted this one?)

http://salicylatesen...out/food-guide/


Hmm got confused because the page has fresh tomato under moderate, so I thought making my own soup out of fresh tomatoes would be ok, but I wasn't sure.
  • 0
Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#43 pricklypear1971

 
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Posted 30 March 2012 - 11:23 AM

Hmm got confused because the page has fresh tomato under moderate, so I thought making my own soup out of fresh tomatoes would be ok, but I wasn't sure.


Dani, the one thing to remember is they guides are just that - guides. Some of them say different things, and everyone is sensitive at different levels and to different things. The tricky thing about sals is they are cumulative so you may not see an immediate effect - a high sal food may hit you 2 days later when you hit your body's threshold.

Personally, I'm still suspicious of that mouthwash and gel you were using. They are, I suspect, high sals. You may be ok with most foods but not something strong like that. I sincerely hope so.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#44 Hopeful1950

 
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Posted 30 March 2012 - 11:51 AM

I've been following this lively thread and am now curious about salicylates. My DH is at a stage where it is not completely healed, but way, way better. I am strictly gluten free and have eliminated iodine.

Those of you who know about salicylates...any ideas about something with salicylates that I could eat to do a challenge to see if it has an effect? Aspirin maybe? If so, how much would likely cause a reaction of some kind? I'm thinking that maybe salicylates could be the reason I can't completely heal, but am hesitant to eliminate more foods if I don't have to.

Thanks for any help you can offer.
  • 0

#45 pricklypear1971

 
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Posted 30 March 2012 - 11:57 AM

I've been following this lively thread and am now curious about salicylates. My DH is at a stage where it is not completely healed, but way, way better. I am strictly gluten free and have eliminated iodine.

Those of you who know about salicylates...any ideas about something with salicylates that I could eat to do a challenge to see if it has an effect? Aspirin maybe? If so, how much would likely cause a reaction of some kind? I'm thinking that maybe salicylates could be the reason I can't completely heal, but am hesitant to eliminate more foods if I don't have to.

Thanks for any help you can offer.


Follow the links above. They have charts showing high sal foods. Choose one and see? Remember they accumulate so you may not see it immediately.

Everyone is different.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!




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