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Upset, Confused, Venting, Scared & Frustrated

squirmingitch

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dani nero Community Regular
dani nero
Posted

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.

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pricklypear1971 Community Regular
pricklypear1971
Posted

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.

pricklypear1971 Community Regular
pricklypear1971
Posted

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

Open Original Shared Link

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.

IrishHeart Veteran
IrishHeart
Posted

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.

pricklypear1971 Community Regular
pricklypear1971
Posted

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 :).

squirmingitch Veteran
squirmingitch
Posted
  • Author

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!tongue.gif) --- 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.cool.gif

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!smile.gif 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!blink.gif

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.laugh.gif

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. ph34r.gif

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.

pricklypear1971 Community Regular
pricklypear1971
Posted

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

Open Original Shared Link

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squirmingitch Veteran
squirmingitch
Posted
  • Author

YAY! Happy dance.biggrin.gif 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.

pricklypear1971 Community Regular
pricklypear1971
Posted

YAY! Happy dance.biggrin.gif 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.

Di2011 Enthusiast
Di2011
Posted

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.

Open Original Shared Link

dani nero Community Regular
dani nero
Posted

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!tongue.gif) --- 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.cool.gif

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!smile.gif 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!blink.gif

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.laugh.gif

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. ph34r.gif

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.

Be careful with the Quinoa Squirming! I saw a post on the gluten-free group on facebook about it being CC. I have not verified this story by looking it up on other sources yet, but here's the post I read:

"Recent news about some quinoa being dried under a covering of barley has raised concerns about gluten free for Passover products that may not be as suitable as previously thought for those who are gluten sensitive or celiac. Some of these products test at 100ppm, which if you are not sensitive is ok. How do people feel about this? Share your insights and knowledge as many people will be out there purchasing non-gebrochts for Passover products that are readily available at this time of year. Help others be informed through personal experience."

I tried googling about it but only got some facts about quinoa.

I'm glad you guys are managing to get lots of things done and achieving. Hope I join you on that wagon soon by producing more as well! I would go get myself a manicure but it seems I'll be needing to focus on getting new soaps and creams. I would really like to paint my nails but I haven't managed getting myself a gluten-free nail polish yet.

I'm super glad your DH is subsiding Squirming :-) Let's hope this lasts! Do you notice that if your DH surfaces that it happens at a certain part of the day? Mine seems to be waking up in the evenings and not being there when I wake up.

dani nero Community Regular
dani nero
Posted

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

Open Original Shared Link

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.

Thank you sooooooo much for this list Prickly! Really makes my search easier. They still might contain gluten though which is the hardest part.

I've been having trouble finding products here actually. Everyone gives me these funny looks and the standard "on come on products can't possibly contain this" when I ask if they know what toothpaste is gluten-free. I've been even asking pharmacists about G6PD friendly pain killers and they don't know what G6PD is!

I don't have favism but I'd be hoping they'd understand what I'm talking about when I tell them "favism", and they still stare at me as if I'm a crazy person.

squirmingitch Veteran
squirmingitch
Posted
  • Author

Dani thanks so much for the alert on the Quinoa! I found some info. on it.

Open Original Shared Link

Open Original Shared Link

This should be posted in a new thread to the entire board not just the dh area. I don't have the time this minute but will get to it later when I do. HOWEVER ---- If someone has a moment now to post it in a new thread in the appropriate forum then PLEASE do so.

squirmingitch Veteran
squirmingitch
Posted
  • Author

Okay, I have posted it.

https://www.celiac.com/forums/topic/91441-warning-quinoa-contamination-with-barley/

dilettantesteph Collaborator
dilettantesteph
Posted

I got some of that special passover quinoa and I had problems with it too. Yet, I have another quinoa source which can eat every day. Unfortunately I can't get any more and I'm running out! I'm very sensitive by the way.

pjr2 Newbie
pjr2
Posted

Your story sounds a lot like me. I am 1 1/2 months gluten free and still having skin problems. I know it will take a some time to get better we didn't get here overnight. Hope things start going better for you soon.

squirmingitch Veteran
squirmingitch
Posted
  • Author

Oh Steph, that's awful. It seems the more celiac is diagnosed & the more people go gluten-free the more we are going to encounter this kind of thing.

I'm sitting here with 4 boxes unopened which I am not going to touch b/c I can't be sure of them. I do wonder if I rinse it very well before I cook it if it would make it okay? Would that clean the particles off of it? I have to order mine online & that's why I get so much at one time. I may have to ask the supplier to give me a refund.

GFreeMO Proficient
GFreeMO
Posted

Is there a complete list somewhere. I looked at the list above but read that coconut was very high and coconut wasn't on that list. I have looked all over the internet and can't find one. :huh::blink:

squirmingitch Veteran
squirmingitch
Posted
  • Author

Gluten-Free ---

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

pricklypear1971 Community Regular
pricklypear1971
Posted

Thank you sooooooo much for this list Prickly! Really makes my search easier. They still might contain gluten though which is the hardest part.

I've been having trouble finding products here actually. Everyone gives me these funny looks and the standard "on come on products can't possibly contain this" when I ask if they know what toothpaste is gluten-free. I've been even asking pharmacists about G6PD friendly pain killers and they don't know what G6PD is!

I don't have favism but I'd be hoping they'd understand what I'm talking about when I tell them "favism", and they still stare at me as if I'm a crazy person.

Dani, do you realize if you do have DH with your g6pd you can't use the traditional treatment of dapsone?

GFreeMO Proficient
GFreeMO
Posted

Gluten-Free ---

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Perfect! Thank you!

dani nero Community Regular
dani nero
Posted

Dani, do you realize if you do have DH with your g6pd you can't use the traditional treatment of dapsone?

I don't use it. Didn't hear of it before now actually. I'm not using any medicines at all. Are you all using it?

pricklypear1971 Community Regular
pricklypear1971
Posted

I don't use it. Didn't hear of it before now actually. I'm not using any medicines at all. Are you all using it?

I don't. Some people have used it and find it quite helpful. It requires monitoring since it can have severe side effects.

I think one barrier is that most people can't get a DH dx, so no prescription.

dani nero Community Regular
dani nero
Posted

I don't. Some people have used it and find it quite helpful. It requires monitoring since it can have severe side effects.

I think one barrier is that most people can't get a DH dx, so no prescription.

Good to hear it's not a must :-) I'm done with medications. Spent two thirds of my life taking pills I never needed which are probably behind some silly OCD habits. I would rather remedy myself by avoiding whatever makes my systems crash.

dilettantesteph Collaborator
dilettantesteph
Posted

Oh Steph, that's awful. It seems the more celiac is diagnosed & the more people go gluten-free the more we are going to encounter this kind of thing.

I'm sitting here with 4 boxes unopened which I am not going to touch b/c I can't be sure of them. I do wonder if I rinse it very well before I cook it if it would make it okay?

I have 12 boxes of the stuff. I usually wash my grains, seeds and nuts. I think that it helps somewhat. Fortunately I have a not so sensitive celiac husband to eat my rejects. I also have a freezer full of rejects.

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