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Upset, Confused, Venting, Scared & Frustrated


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101 replies to this topic

#1 squirmingitch

 
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Posted 28 March 2012 - 03:32 PM

At this moment I'm so whacked out I'm not even sure I can write this & have it make any sense. So I begin......
My dh began subsiding almost the minute I began the gluten-free diet. And then I found that iodine is a huge factor in it for me so I went low iodine & it was like a miracle in 2-3 days. Beginners learning curve caused me to get cc'd twice since beginning the diet. Okay, it happens. 1 month ago I had written on a thread that I had just washed the last of the crusts out of my scalp from the last cc episode. Life was pretty good --- for about a week/10 days. Then I began to get a few itchies & a few more & a few more; my neck broke out all the way around, my side then the other side, both hands & forearms. Most of these are just the insect bite type but some are the little blisters. Most only itch a couple days. Some itch a week. Before going gluten-free it was relentless & waaaayyyyyy worse & all of them blisters that grew & scabbed etc...
There are so many little itchies now though. When some heal, others are coming; it's like a carousel. Since a month ago when I was all cleared up I have added these things to my diet: coconut oil, See's gluten-free chocolates but I didn't gorge --- just 1 per day for 4 days, Quinoa & then Amaranth this last week. When I began to break out again I researched & found the coconut has high iodine so there went the coconut oil & I quit the chocolates as well as making sure I was strict in the low iodine. But things didn't get better. I quit the Quinoa 8 or 10 days ago & the Amaranth hasn't been eaten for 4 days. I got 3 new little blisters today & a couple "bites".
I am POSITIVE I am not getting cc'd.
I know, I know, I keep telling myself that I knew going into this that dh can present whenever it darn well feels like it for as long as the antibodies are in your skin. So I shouldn't be upset. But I'm so low iodine that I couldn't get any lower!
I haven't changed any topical products --- in fact I'm still using the very same bottle of shampoo that I was using before I cleared up from the last cc.
I feel like I'm losing my mind. Am I missing something? Or is this just "normal"? Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrr, whine.
Eatmeat4good --- you said you had itchies for 1 yr. & 4 months. Was it like this for you?
  • 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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#2 kareng

 
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Posted 28 March 2012 - 03:38 PM

I don't know much about DH. Just wanted to say- How awful for you! I hope you can get this figured out SOON.
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#3 pricklypear1971

 
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Posted 28 March 2012 - 03:53 PM

Read this about coconut oil: http://www.coconutre...om/hwnl_4-1.htm

I know it is stressful and upsetting to see new sores form. I think iodine accumulates, btw. It took me a week to break out from the multivitamin.

You know, something to consider is salicylates: coconut is VERY high in sals, and I had a slight problem with it in the beginning. I seem to be ok now. I did try to be li and low sal those two weeks...which made me very very irritable. Sals are famous for contributing to skin conditions.

I guess my main question: overall, is the rash less in all ways?

I think we all have relapses. I had one the first time I ate a lot of iodine. Sushi still gets me a bit. And I swear I've got DH on my hand now which I can NOT explain except from a general ai flare.
  • 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!

#4 Hopeful1950

 
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Posted 28 March 2012 - 04:05 PM

Oh man I so feel your pain. With this crap it is normal to be abnormal if that makes any sense...

I am coming up on gluten-free about 17 months. I still have itchy scabby places. I still get isolated blisters/itchies here and there.

Some thoughts:
1) Yes, sometimes it just goes crazy for no apparent reason. For me these episodes are getting fewer and fewer. It is hard to make the cause/effect connection because the reaction is often delayed for days. Making my dog gluten free was my final epiphany. Took me awhile to figure that out.

2) Mine seems to move around to different areas of my body. Right now it is coming up all over my back, but is getting better on my behind and arms.

3) Have you started any new medications? I took Actonel (for bones). It kicked my DH into high gear. I looked like I had acid burns all over my body before I figured it out. Many medications have some form of iodine and/or gluten in them

4) I have noticed problems with chocolate. Not sure why. Maybe even though gluten free, there is something going on in the processing maybe? When it comes to food I am finding that packaged/prepared foods can be a problem unless they come from a facility that tests each batch or a facility that is certified.

5) Irritation. If I get a burn, cut or bruise sometimes I'll get a crop of itchies.

6) Ointments and potions to get relief: It took me awhile but I figured out that I am sensitive to neomycin and bacitracin (antibiotics). I really have a problem with pramoxine (itch stopper). When I used Neosporin + Pain it was a nightmare. I recently read an article in a Dermatology E-Newsletter talking about how common it is for people to react to these things. Well gee...wish I had known. I probably prolonged my misery.

I really feel like DH has a life cycle that is not really clear to anyone. I am always amazed when a lesion that has blistered over and over for months just up and heals almost over night.

Yes...grrrrrrr :angry: and MAJOR whining from me also. Coming up on my 8th summer in long pants and long sleeves.
  • 1

#5 squirmingitch

 
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Posted 28 March 2012 - 04:28 PM

Read this about coconut oil: http://www.coconutre...om/hwnl_4-1.htm

I know it is stressful and upsetting to see new sores form. I think iodine accumulates, btw. It took me a week to break out from the multivitamin.

You know, something to consider is salicylates: coconut is VERY high in sals, and I had a slight problem with it in the beginning. I seem to be ok now. I did try to be li and low sal those two weeks...which made me very very irritable. Sals are famous for contributing to skin conditions.

I guess my main question: overall, is the rash less in all ways?

I think we all have relapses. I had one the first time I ate a lot of iodine. Sushi still gets me a bit. And I swear I've got DH on my hand now which I can NOT explain except from a general ai flare.


First, thank you everyone for your replies.

Prickly, Wow! What a revelation! Thank you so much for the info. on the coconut oil. So it's in b/c it isn't after all high in iodine but out b/c maybe I need to watch sals. Talk about a mind bender.Posted Image
Yes to your question. Overall the rash is less in all ways. But (& I know you & many others can empathize with this) in April it will be an entire year since the whole humongous outbreak happened & I've been itching ever since with very little time NOT itching. So I'm getting buggy!Posted Image But your relpy helps me feel better & not so insane.Posted Image

Oh & for those who may inquire ---- YES! I've been keeping a food log.


  • 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.

 


#6 IrishHeart

 
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Posted 28 March 2012 - 04:45 PM

Poor girl, sorry!. :(

I know Eatmeat4good and will email her and ask her to respond too.

These gals have given you GREAT info!

I wish I had answers for you. While I had scalp oozey sores and terrible itchies and blisters and mouth eruptions, I did not have classic DH...about the only thing celiac did not give me. :rolleyes:

Hope you get relief soon! best, IH
  • 0

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#7 squirmingitch

 
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Posted 28 March 2012 - 04:48 PM

Oh man I so feel your pain. With this crap it is normal to be abnormal if that makes any sense...

I am coming up on gluten-free about 17 months. I still have itchy scabby places. I still get isolated blisters/itchies here and there.

Some thoughts:
1) Yes, sometimes it just goes crazy for no apparent reason. For me these episodes are getting fewer and fewer. It is hard to make the cause/effect connection because the reaction is often delayed for days. Making my dog gluten free was my final epiphany. Took me awhile to figure that out.

2) Mine seems to move around to different areas of my body. Right now it is coming up all over my back, but is getting better on my behind and arms.

3) Have you started any new medications? I took Actonel (for bones). It kicked my DH into high gear. I looked like I had acid burns all over my body before I figured it out. Many medications have some form of iodine and/or gluten in them

4) I have noticed problems with chocolate. Not sure why. Maybe even though gluten free, there is something going on in the processing maybe? When it comes to food I am finding that packaged/prepared foods can be a problem unless they come from a facility that tests each batch or a facility that is certified.

5) Irritation. If I get a burn, cut or bruise sometimes I'll get a crop of itchies.

6) Ointments and potions to get relief: It took me awhile but I figured out that I am sensitive to neomycin and bacitracin (antibiotics). I really have a problem with pramoxine (itch stopper). When I used Neosporin + Pain it was a nightmare. I recently read an article in a Dermatology E-Newsletter talking about how common it is for people to react to these things. Well gee...wish I had known. I probably prolonged my misery.

I really feel like DH has a life cycle that is not really clear to anyone. I am always amazed when a lesion that has blistered over and over for months just up and heals almost over night.

Yes...grrrrrrr :angry: and MAJOR whining from me also. Coming up on my 8th summer in long pants and long sleeves.


Hopeful,
1) Funny you should mention the dog & gluten-free. My dog has been gluten-free since the day she arrived at our home as a pup; she's coming up on 5 yrs. old in June. I knew about dogs & gluten long before I knew about celiac & gluten. And last year I had to change her gluten-free food to another brand as her "gluten-free" food was getting cc'd (or the company was getting less reputable????). I have HER gluten issues down to a science now. I can tall right away when things aren't right. Now if I could do the same for myself.Posted Image

2) Yes, it's moving around (mostly). Getting better on my sides but moving up on my arms etc....

3) I can be very, very thankful that I do not require any medications! YAY!

4) I seem to have lost my sweet tooth some years ago but once a year I DO get a craving for some chocolate ---- especially DARK chocolate. Well, it's sitting over there uneaten now & will likely stay there forever. Dang! $$$$$$ in the trash. Thank you celiac!Posted Image
I eat no packaged/prepared foods at all unless it's certified. And the only things like that I eat are nuts (unsalted), & Quinoa, Amaranth (which I'm not eating now), & some of the flours. All batch tested, certified. I read about people eating stuff like Fritos, Tostitos, & taco shells & I don't have the guts (pun intended) to even think about trying those things for a long, long time.

5) Yes, I know about irritations. Common with herpes type of skin issues. Got scrated by the dog & got some itchies there.

6) Ointments ---- I only use Orajel for the itchies & no other ointment use in process here for me.

You have some great thoughts about possibilities! Just you relating your experience helps. I know I'm not really doing things wrong & I know what I'm going through is "normal". UGH!
Thank you!



  • 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.

 


#8 Jestgar

 
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Posted 28 March 2012 - 04:48 PM

Sals are famous for contributing to skin conditions.

Do you have any sources on this? It seems like something worth putting up so other people can check it out if they're having problems.
  • 0
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My sources are unreliable, but their information is fascinating.
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Leap, and the net will appear.

#9 squirmingitch

 
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Posted 28 March 2012 - 04:49 PM

Thanks IH! 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.

 


#10 pricklypear1971

 
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Posted 28 March 2012 - 06:18 PM

Do you have any sources on this? It seems like something worth putting up so other people can check it out if they're having problems.


This is a product website, and while not scientific, does sum it up pretty well. http://www.mysensiti...alicylates.html

Here's info about symptoms: http://salicylatesen...vity.com/info3/

Here's a list of how to cope: http://www.chronichi...icylatediet.htm

I read about Sals in relation to aggravating conditions or being "a mysterious cause". It's one of the things I considered was causing my tbd DH.

Others here and especially DH sufferers have realized sals contribute to their problems.

My dermatologist brought it up and agreed when I said I thought they might make my rash worse.

It's kind of like milk, soy, egg, etc. intolerance going with Celiac in general - sals kind of go with skin conditions.

For me, it's MSG, food colorings and maybe peppermint (which really sucks btw). Others are super sensitive to them. When I first went gluten-free sals and MSG )still not sure if they are a sal or different category) caused my rash to flare like you would imagine gluten would - now not so much.

There are studies done on some specific meds like indomethacin, which I am guessing is a sal since its an anti- inflammatory which shows it aggrivates DH. http://www.ncbi.nlm....=/52970/related
  • 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!

#11 Takala

 
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Posted 28 March 2012 - 06:21 PM

Cross contamination from oats ?

If I had to guess, and this is from consuming something instead of from topical exposure, you are getting nailed from one of your grain products that is cc'd with something else, either wheat, oats. I had to change baking soda, from a company that was "gluten free" packaged to just going back to ol' Arm & Hammer. I thought I was never going to figure that one out. :ph34r: Another thing that got me really spectacularly was cc'd corn starch in a "safe" baby powder - Holy **** :ph34r:

Otherwise, 'whadduhbouts the things like laundry detergent ? or kitchen dish soap, or for me, one of the worst things is commercial antibacterial soap in public restroom dispensers.

Oh, and the ultimate was, from my bout of really shouldn't have used "that brand of natural deodorant," was it got on my jackets and sweatshirts, sports bras, and even the clothes hangers I used for them. Pulling some of these clothes items over my head/face had some real interesting results.

~The Springtime Pets~

My dogs. They runneth in green pastures, besides the still waters. They draggeth in many detritus. They sneaketh into the hay barn, which is old and hopelessly full of straw dust besides the rats they're hunting. They lead us to antihistamines. Yeah, tho I scratch thru the Valley of Evil, thy doggie bath comforteth me.


I keep putting sheets down on the floors where the dogs lay, and then wash them frequently.
  • 0

#12 Jestgar

 
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Posted 28 March 2012 - 06:43 PM

This is a product website, and while not scientific, does sum it up pretty well. http://www.mysensiti...alicylates.html

Here's info about symptoms: http://salicylatesen...vity.com/info3/

Here's a list of how to cope: http://www.chronichi...icylatediet.htm

I read about Sals in relation to aggravating conditions or being "a mysterious cause". It's one of the things I considered was causing my tbd DH.

Others here and especially DH sufferers have realized sals contribute to their problems.

My dermatologist brought it up and agreed when I said I thought they might make my rash worse.

It's kind of like milk, soy, egg, etc. intolerance going with Celiac in general - sals kind of go with skin conditions.

For me, it's MSG, food colorings and maybe peppermint (which really sucks btw). Others are super sensitive to them. When I first went gluten-free sals and MSG )still not sure if they are a sal or different category) caused my rash to flare like you would imagine gluten would - now not so much.

There are studies done on some specific meds like indomethacin, which I am guessing is a sal since its an anti- inflammatory which shows it aggrivates DH. http://www.ncbi.nlm....=/52970/related

Thanks for finding all those!
  • 0
"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#13 squirmingitch

 
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Posted 28 March 2012 - 06:49 PM

Yes Prickly! Thanks for finding all those lovely links.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.

 


#14 squirmingitch

 
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Posted 28 March 2012 - 07:09 PM

Cross contamination from oats ?

If I had to guess, and this is from consuming something instead of from topical exposure, you are getting nailed from one of your grain products that is cc'd with something else, either wheat, oats. I had to change baking soda, from a company that was "gluten free" packaged to just going back to ol' Arm & Hammer. I thought I was never going to figure that one out. :ph34r: Another thing that got me really spectacularly was cc'd corn starch in a "safe" baby powder - Holy **** :ph34r:

Otherwise, 'whadduhbouts the things like laundry detergent ? or kitchen dish soap, or for me, one of the worst things is commercial antibacterial soap in public restroom dispensers.

Oh, and the ultimate was, from my bout of really shouldn't have used "that brand of natural deodorant," was it got on my jackets and sweatshirts, sports bras, and even the clothes hangers I used for them. Pulling some of these clothes items over my head/face had some real interesting results.

~The Springtime Pets~

My dogs. They runneth in green pastures, besides the still waters. They draggeth in many detritus. They sneaketh into the hay barn, which is old and hopelessly full of straw dust besides the rats they're hunting. They lead us to antihistamines. Yeah, tho I scratch thru the Valley of Evil, thy doggie bath comforteth me.


I keep putting sheets down on the floors where the dogs lay, and then wash them frequently.


Oh My Takala! And the plot thickens eh?
No oats here. The Quinoa is Ancient Harvest & the Amaranth is BRM. I was only eating the Amaranth while this latest episode had already been going on but decided to back off on it as well as the Quinoa anyway & sort of go back to square one so to speak.

It isn't the laundry detergent, kitchen soap & I carry safe hand wipes in my purse so I don't have to use hand soap in public restrooms. I actually use very little flour type stuff as I haven't gotten into the baking thing yet just trying to manage small steps at a time. Don't want to complicate issues --- bad enough as is. I'm still using the same bag of BRM "flour" I first began with.

I remember reading somewhere you posting recently about the deodorant on your clothes episode.

Ahhhh, & then we come to the dog. Nope, no barns of old straw but she did roll in what I can only determine must have been some skunk poo & the skunk had D! YUCK! She has gluten-free shampoo. I had to use lemon juice on her though to get the stink out & she got 2 baths! That was after we took her to the country to run. We are renting a place while we build a home & the "rules" are no dogs off leash EVER unless the yard is fenced & this one is not. Poor baby. So we take her for runs.

That's why this is so vexing to me. I've been over everything a thousand times in my mind. I think it's just stupid freaking, crappy dh doing what it does best which is make us nuts! 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.

 


#15 Di2011

 
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Posted 29 March 2012 - 12:26 AM

I am 10 months in with head to toe DH so I can really understand your dilemma. I've had 2 periods of seeming relief only to go head to toe lesions once again. It is very hard on the sanity.
I have found sals (dried fruit was the first culprit I think, coconut the second) a problem. Recently I discovered a massive problem with corn. Are you eating corn? It seems to be a more temporary effect than glutens but is very severe for me.

I sit here with itching on my hands, legs etc so remember to get on here and rant etc whenever you need. This forum has been my saviour of my sanity so don't be discouraged.. get on an talk it out with us.
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