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Upset, Confused, Venting, Scared & Frustrated


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101 replies to this topic

#76 JustNana

 
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Posted 06 April 2012 - 11:56 AM

I was amazed to har that DH can be on your fingers. I remember reading that it's on the trunk and butt. My worst itching is fingers, forearms, even palms. Also tos of feet, shins and scalp. Also butt. :-) I'm starting to think I am getting cc'd or not being as fussy as necessary. My intestinal troubles are almost all gone, but the DH, fatigue and joint pain, especially in my hips is still there.

The DH is much better but it flares up when I can't see the reason. Last night hips were very painful and I took an Alieve and an Ibuprofin. Woke up with awful itching on tops of feet and fingers with tiny blisters.

This forum is not only the best source of information, it also makes me feel "normal" sane and VALIDATED!
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#77 Di2011

 
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Posted 06 April 2012 - 01:10 PM

Hi JUstnana,
Have you consider the other things that contribute to our DH problems?
The two most commonly mentioned on here are:
Iodine (http://www.thyca.org/rai.htm#diet)

Salicylates (sals for short): http://salicylatesensitivity.com/
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#78 squirmingitch

 
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Posted 06 April 2012 - 04:24 PM

JustNana, how long have you been gluten-free?

And yes, like Diane says ... iodine & sals. That Aleve & Ibuprofin you took for your hips likely is the reason you woke up with the itching & blisters. I will also mention that sals are cumulative.

I'm getting better everyday since I went low sal soooooooo
  • 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.

 


#79 Di2011

 
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Posted 06 April 2012 - 08:52 PM

I also believe the sals intake is cumulative. Too much iodine (like eating prawns~~) gives me an almost immediate react but tends to be temporary. The minefield of sals has been harder to navigate. Such a extensive/complex set of foods involved. I now stick with the negligble/low sals list on http://salicylatesensitivity.com/ and try to avoid the depressing idea of what I can't have.
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#80 dani nero

 
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Posted 10 April 2012 - 03:30 PM

I'm getting better everyday since I went low sal soooooooo


I'm very happy to hear that :-)
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Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#81 squirmingitch

 
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Posted 10 April 2012 - 03:51 PM

And you Dani, how are you doing?

And me, well, I'm better but sort of in a holding pattern right now. Got to a certain point & then just kind of holding. A few heal & I get a few. At least it's at the point where I can deal with it.
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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.

 


#82 dani nero

 
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Posted 10 April 2012 - 04:09 PM

And you Dani, how are you doing?

And me, well, I'm better but sort of in a holding pattern right now. Got to a certain point & then just kind of holding. A few heal & I get a few. At least it's at the point where I can deal with it.


I've noticed that with celiac it's quite often that healing doesn't happen without comebacks. It's usually better -> stops or comes back but milder -> better, and so on. It resists completely going away until it can no longer be there. Hang in there squirming :-)

I've been ok thanks :-) The DH on my finger healed but the skin has been refusing to become normal.. it's still very dry and it doesn't matter if I put cream on it, but no more blisters.
I got glutened a few days ago but thankfully no blisters.. My finger is just slightly irritated. My scalp and arms are a little itchy but I'm hoping it's just my head being a little paranoid :-)

What have you been eating by the way?
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Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#83 squirmingitch

 
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Posted 10 April 2012 - 04:24 PM

I've noticed that with celiac it's quite often that healing doesn't happen without comebacks. It's usually better -> stops or comes back but milder -> better, and so on. It resists completely going away until it can no longer be there. Hang in there squirming :-)

I've been ok thanks :-) The DH on my finger healed but the skin has been refusing to become normal.. it's still very dry and it doesn't matter if I put cream on it, but no more blisters.
I got glutened a few days ago but thankfully no blisters.. My finger is just slightly irritated. My scalp and arms are a little itchy but I'm hoping it's just my head being a little paranoid :-)

What have you been eating by the way?


I've been doing low sals & getting more iodine. I have documented a true & real correlation to stress & yesterday an event happened that sent my stress levels off the charts. Places that had not completely healed but had not itched for days suddenly became raised, red & itching. Today has been pretty calm & I've had far less itching.

I sure do hope your itchy scalp & arms is all in your head! LOL! I wouldn't wish the scalp lesions on my worst enemy! They are GROSS!!!!!!


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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.

 


#84 dani nero

 
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Posted 10 April 2012 - 04:37 PM

I've been doing low sals & getting more iodine. I have documented a true & real correlation to stress & yesterday an event happened that sent my stress levels off the charts. Places that had not completely healed but had not itched for days suddenly became raised, red & itching. Today has been pretty calm & I've had far less itching.

I sure do hope your itchy scalp & arms is all in your head! LOL! I wouldn't wish the scalp lesions on my worst enemy! They are GROSS!!!!!!


You're having iodine without problems? :-O That is great! Can't wait until I can have seafood again!
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Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#85 squirmingitch

 
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Posted 10 April 2012 - 05:25 PM

Well, I wouldn't say I'm having iodine w/o problems per se. I'm having iodine but not lots of seafood. I have 2, only 2 shrimp, medium sized once a week, having milk & cheese but they are from a local dairy & have less iodine than anything in the grocery store. I had my first WHOLE egg in forever it seems, this week (soft egg on flax toast) & ohhhhhh it was GOOD! I'm eating some yogurt. And there is iodine in almost everything we eat. I'm taking it a bit easy until I find my limit or breaking point. But I feel I'm getting the proper amount of iodine now for health --- just not going nuts on it.

Earlier you asked what I am eating & I realize now that you may have been asking for more detailed. Here goes: Fresh low sal vegetables but I am having some carrots which are in the mid range but I am limiting the amount. Chicken, beef & pork, golden delicious apples, pears, pecans, cashews, sunflower seeds, walnuts, brown rice cakes, cashew butter, sunflower seed butter, rice, potatoes - still eating them w/o skins, leeks, quinoa, Glutino's flax bread, pumpkin seeds, a small amount of sweet potato (med. sals so I limit my intake), milk, cheese. I adore salads & am using the interior leaves to try & limit the sals; I should be eating iceburg lettuce but I simply can't hack the stuff -- it sucks -- so I'm keeping the salads to 2 small ones per week & I put cheese & garbanzo beans (chick peas) in them. Black beans, white acre peas, green peas, green beans. And I had cut out ham b/c of the iodine but am now having ham once a week. Onions, sugar snap peas, celery.

Who says celiacs don't get enough fiber? LOL! I sure am getting it!
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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.

 


#86 squirmingitch

 
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Posted 12 April 2012 - 04:23 PM

A big thank you to those who steered me in the direction of sals! I'm getting better! YAY! The dh is laying down & I'm now down to just a few places that flare up once or twice a day.
I look back & see that I was maxing out on sals. I was eating lots of sweet potatoes, eating raisins, RED apples like crazy, oranges & tangerines everyday & so on & so forth. The coconut oil. Then I added Culturelle b/c it's dairy free so no iodine & it's chickory root --- max. on the sal scale. I was going nuts (pun) on peanut butter & almond butter both --- max. on the sal scale, drinking fruit juices - max. sals, eating pineapple for the digestive enzymes - max. sals. Beer is out so I was drinking red wine --- again, max. sals. Seems I was doing all the right things just in the wrong way. It's like I ran as fast as I could & went splat right into the brick wall of sals.Posted Image
I now see the error of my ways thanks to you guys & especially to PricklyPear for bringing it to my attention.
  • 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.

 


#87 pricklypear1971

 
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Posted 12 April 2012 - 04:26 PM

I'm so glad things are improving.

Hopefully as the iga fades you can increase sals.
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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!

#88 squirmingitch

 
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Posted 12 April 2012 - 04:28 PM

I'm looking forward to the day I can have my lovely citrus fruits back at least once in a while.
  • 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.

 


#89 pricklypear1971

 
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Posted 12 April 2012 - 04:30 PM

I'm looking forward to the day I can have my lovely citrus fruits back at least once in a while.


I understand. I'm like that with sushi. Its pretty limited gluten-free, but toss in li and I'm down to sashimi which is basically raw fish.

I can do a little bit of seaweed but not much, and I still get a spot on my arm as a thank you.
  • 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!

#90 squirmingitch

 
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Posted 12 April 2012 - 04:47 PM

One day Prickly, one day, it will happen for both of us --- "the other side".Posted Image

Now, I have one or two questions so that I don't screw myself up again. I got some Solgar Advanced Multi-Billion Dophilus. the ingredients are:

http://www.solgar.co..._W625_H475.jpeg

And I want to take some L-Glutamine

http://www.solgar.co...le-Capsules.htm

Is there anything in these items which stick out to you as being high sal?
  • 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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