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Upset, Confused, Venting, Scared & Frustrated


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101 replies to this topic

#46 IrishHeart

 
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Posted 30 March 2012 - 12:15 PM

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.



ABSOLUTELY TRUE.

Every site has slightly different info (I have noticed) and everyone's tolerance level is different.

That's the tricky part. :unsure:

Same with amines, sulfates, nitrates, MSG, etc. A little may be tolerable, but it is not easy to figure out when the body is saturated. Multiple chemical sensitivities make it even harder. <_<
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"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


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#47 dani nero

 
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Posted 30 March 2012 - 12:20 PM

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.


I agree about the mouth wash and gel. I sadly had another reaction last night though, so I'm thinking the wash was not the only culprit. Probably the same problem as squirmingitch with Sals. If this is really DH.. My nose was so itchy I was about to scratch it off, and my finger was burning with lots of new tiny blisters. The strange thing is that my finger used to itch, but now it only burns, swells and get lots of small dry lines all over it. The only things itching are my scalp, nose, feet and legs. And then this morning the blisters are almost gone, just small bumps remain where they were and agitated skin.

Sorry for redirecting the attention from squirmingitch X(
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Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#48 Hopeful1950

 
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Posted 30 March 2012 - 01:15 PM

Thanks Prickly. I'll go for one of the "High sal" foods and keep everything else the same in my diet and see what happens. Looking at the lists some things that are gluten-free/iodine free that I love are high in sals so could be....

Think I'll wait until Monday because I'm cantoring at church for Palm Sunday and I don't want to be scratching like a monkey up at the altar! :P
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#49 pricklypear1971

 
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Posted 30 March 2012 - 01:38 PM

I agree about the mouth wash and gel. I sadly had another reaction last night though, so I'm thinking the wash was not the only culprit. Probably the same problem as squirmingitch with Sals. If this is really DH.. My nose was so itchy I was about to scratch it off, and my finger was burning with lots of new tiny blisters. The strange thing is that my finger used to itch, but now it only burns, swells and get lots of small dry lines all over it. The only things itching are my scalp, nose, feet and legs. And then this morning the blisters are almost gone, just small bumps remain where they were and agitated skin.

Sorry for redirecting the attention from squirmingitch X(


Sometimes I think it's a chain reaction. Right now your ai system is in overdrive.

You may have to pull all of it waaaay down - gluten, sals, iodine then cautiously add back.

I bet the mouthwash/gel was like the straw that broke the camel's back, though.

Keep the rash lubricated. Find a cream/lotion that is no sal - which will mean synthetic. Sorry. I like Vanicream, if they have it there. Try covering the finger with a band-aid. Irritation just exacerbates skin conditions.
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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!

#50 pricklypear1971

 
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Posted 30 March 2012 - 01:39 PM

Oh, and ice packs. Ice the rash.
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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!

#51 dani nero

 
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Posted 30 March 2012 - 02:53 PM

Sometimes I think it's a chain reaction. Right now your ai system is in overdrive.

You may have to pull all of it waaaay down - gluten, sals, iodine then cautiously add back.

I bet the mouthwash/gel was like the straw that broke the camel's back, though.

Keep the rash lubricated. Find a cream/lotion that is no sal - which will mean synthetic. Sorry. I like Vanicream, if they have it there. Try covering the finger with a band-aid. Irritation just exacerbates skin conditions.


At the risk of sounding mentally challenged, synthetic cream means no natural ingredients?
Thanks for your advice. You're a life-saver.
  • 0
Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#52 pricklypear1971

 
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Posted 30 March 2012 - 03:40 PM

At the risk of sounding mentally challenged, synthetic cream means no natural ingredients?
Thanks for your advice. You're a life-saver.


Yes. Nothing natural. You may find something low-sal with extracts but not easily. There may be some no sal natural stuff out there but it will take some researching (and probably ordering). It's an unfortunate fact. That's why I stuck with Vanicream - gluten-free, no sal. Not all chemicals are low sal, but some are. I found Vanicream listed as no sal on some site, don't remember where.

Oils like jojoba (what I used) are high sal. After I healed it was ok to use, but I didn't chance it during my worst DH days.
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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!

#53 pricklypear1971

 
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Posted 30 March 2012 - 03:57 PM

Here's a list. I don't know if ingredients are different in Sweden, or what's available to you.

http://www.reyessynd...reeProducts.pdf

You might try safflower or sunflower oil if you want a natural moisturizer. I don't know how they feel on skin. Try it? I find my DH needs super-moisturizing.
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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!

#54 IrishHeart

 
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Posted 30 March 2012 - 03:57 PM

I was using a bunch of herbals & homeopathic remedies recommended by

a Naturopath (before DX) and later learned that THOSE are loaded

with sals, too. Oils, too. My system was saturated.
  • 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


#55 pricklypear1971

 
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Posted 30 March 2012 - 04:03 PM

I was using a bunch of herbals & homeopathic remedies recommended by

a Naturopath (before DX) and later learned that THOSE are loaded

with sals, too. Oils, too. My system was saturated.


Yep. Botanicals would be. I was a jojoba oil /almond oil girl. Natural salt deoderant....natural hair sprays, gels, Aveeno powder for exfoliant, henna hair color (had wheat in it). Skin care had oats and wheat germ oil in it.

I had to change EVERYTHING.

Wow. That trip down memory lane made me want a drink...luckily I have Ciroq on hand :).
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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!

#56 squirmingitch

 
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Posted 30 March 2012 - 05:34 PM

Boy! Did I ever miss out on a lively discussion today! Where the heck do I start?
IH, I echo Dani in that your "but" is welcome anytime!
And NO ONE is taking this thread away from me (I own it & I'm not giving it up!Posted Image) --- just kidding you know ---- all of the discussion is relevant. And why the heck can't we have a round table discussion? That's the way I feel & I'm sticking to it.Posted Image

Prickly, you have helped me so much since the first day I came on this board that I am thrilled that I could inspire you & return the favor in some small way. YAY!Posted Image And I adore this milk. It's pasteurized (by law) but not homogenized & only comes in whole milk --- no low fat stuff. I need it. I'm 5'2" & 98 ibs. --- I can use some fat to fill out these wrinkles!Posted Image

It has been a very busy, very stressful day. I did feel so optimistic this morn that I actually began working on our income taxes. Then I was interviewing listing realtors to sell our house we moved from. WHEW! Reading contracts & comps. & gobs of detailed info. all day long. And trying to decide who is schmoozing me, who is being honest & who is being lazy. But this will all be worth the stress as it will take tons of stress off us once we sign with the realtor we pick.

I had a low sal lunch & dinner. Get this.... how freaking weird is dh? I've had 2 itsy bitsy "bite" type of itchies arise today & all the others seem to be on the wane. Now there's no way that I believe low sals worked that fast. But WTF? The dh just up & decided to start going away? I don't trust it! It's determined to torture us, I know it is. But I'll take what relief I can get & be thankful for it.

And oh, IH; I just LOVE your red toenails! Good for you girl! And walking 3/4 mi. 2 days this week? Sounds like great strides to me. Be proud. And enjoy!

And Dani, about the IQ thing. it's part of the process. I went through a phase where my IQ was about -20. I literally couldn't think of the name for a fork & would finally end up saying, "You know those things you spear your food with to eat?" Honestly.

Well drat! Beer is out b/c of gluten & I just bought some wine Monday & now that's out b/c of sals. I KNEW there was a reson I always like Wodka.Posted Image

And I have to give up the Olive oil. Guess I'm back to safflower oil.
Prickly, Are you kidding me? Jojoba oil is high sals? Oh crud. It's in my body wash. And I just bought some almond oil too. Posted Image

Hopeful, I hate to hear dh is striking you this long after being gluten-free. Seems like we're hearing a lot of people with similar happenings. And the scarier part is that there have been a lot of posters who were only GI symptoms & gluten-free for many, many years & now when they get cc'd they're turning up with dh. ?????HUH?????

I would like you guys opinion. Do you think I can go back to eating my Ouinoa? I have no idea if it's high sal or not as I couldn't find it on any list.
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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.

 


#57 pricklypear1971

 
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Posted 30 March 2012 - 05:48 PM

I found this blog. Says quinoa is zero. Yay. Read it, looks like good info.

http://www.foodsmatt...s/salintol.html
  • 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!

#58 squirmingitch

 
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Posted 30 March 2012 - 06:30 PM

YAY! Happy dance.Posted Image Thank you Prickly! You are very good at finding things.

And I just thought of something..... I could swear that this morning I saw on one of the sal lists that fresh tomatoes were okay but canned were not. Saw the discussion about it & I must have been hallucinating b/c you're right --- all the lists list it as high sal be it fresh or not.
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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.

 


#59 pricklypear1971

 
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Posted 30 March 2012 - 06:41 PM

YAY! Happy dance.Posted Image Thank you Prickly! You are very good at finding things.

And I just thought of something..... I could swear that this morning I saw on one of the sal lists that fresh tomatoes were okay but canned were not. Saw the discussion about it & I must have been hallucinating b/c you're right --- all the lists list it as high sal be it fresh or not.


I thought I saw it listed as moderate (fresh), but tomato products were high. I dunno.
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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!

#60 Di2011

 
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Posted 30 March 2012 - 11:41 PM

raisins were a really good 'sals' trigger for me. ((Can you believe a DH trigger can be "good"!!! The more we know the more we cure.)It was the first and most obvious thing that led me down the sals path. They are easy and cheap to acquire and you can eat a heap of them with only (if like me) a temporary reaction.

http://everydaywitha..._Food_Chart.pdf
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