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What Could It Be?


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#16 sora

 
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Posted 29 December 2011 - 05:56 AM

I just had a decaf. coffee with coconut milk. Within 15 minutes I am having a histamine reaction. The coconut milk, canned, has x-gum, E466 (thickener) and sulfites. Are histamine reactions usual for x-gum or sulfites?
Charlotte
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#17 psawyer

 
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Posted 29 December 2011 - 06:37 AM

Sulfites are a common allergen. In Canada, they make the top-ten list which must be disclosed.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#18 IrishHeart

 
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Posted 29 December 2011 - 06:52 AM

I have to agree--the Sulfites may just be it. They can cause this histamine response, yes.

I have a friend who cannot drink wine because of sulfites. Closes her nose and swells her sinuses and closes her throat right up. She gets red-faced.

Are there sulfites in any of the things you listed earlier in the thread that caused this reaction?
You may be onto finding your culprit!
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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


#19 sora

 
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Posted 29 December 2011 - 07:35 AM

I just checked everything except the turkey (packaging is gone) and there are sulfite's in the balsamic vinegar I used on the roasted veggies. I ate some Christmas day and then had some again last night for dinner.
Just looked up the turkey, no sulfite's.
Maybe we found it!
I started another food diary. Maybe that will help.
Is there anything that naturally contains sulfites and so might not be on the label? Like fresh cranberries?

Charlotte
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Wheat Allergy

Chemical (scent) Allergy

“Ah, but I was so much older then, I’m younger than that now


#20 kareng

 
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Posted 29 December 2011 - 07:47 AM

Maybe you can google and find a list. Just be careful..... Find a reputable site. I was looking for foods not to eat for an ulcer & half the people that have ever had an ulcer seem to have a website with " advice" and " cures". :blink:
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#21 elfie

 
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Posted 29 December 2011 - 09:44 PM

I agree about the sulfites possibly being a culprit if you haven't had extensive allergy testing to rule them out. With the kind of reactions you are having it really sounds like you need to find a good medical care provider to help you sort more things out, if possible.

On a side note, I've always reacted to breyers ice cream. Never really got into the why because I stopped trying to eat it many years ago before any of my allergy testing, etc. OMG the chocolate covered whatever they were called that they had were good though, but after reacting every time I gave up. I don't react to other carefully chosen ice creams or dairy.

Hope you feel better soon and figure out the culprits.
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#22 sora

 
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Posted 30 December 2011 - 06:16 AM

I had a bad night. Waking up over and over and a nightmare. A very detailed nightmare, end of the world, how are we going to survive. Very telling I think. :)
I will make an appointment with the doc and the dietitian today and I am booked with an allergist but not until June. :(
I am going to basics today, rice, plain meat etc. Keeping my food diary.
I just want my head to stop hurting and the brain fog to clear so I can concentrate.
Thank you everyone for your help.
Charlotte
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Wheat Allergy

Chemical (scent) Allergy

“Ah, but I was so much older then, I’m younger than that now


#23 IrishHeart

 
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Posted 30 December 2011 - 06:39 AM

I hope you feel better soon.

I was in the same boat, pre-DX and for several months Post-Dx too. I was in a constant histamine response. Red-faced, with a raised red rash on my face (was it lupus? tested. nope) red chest, burning skin, stuffy nose, sinus pain, burning lips, mouth, throat, difficult breathing, migraines, trouble swallowing (everything felt like barbed wire or razor blades going down), food tasted spoiled & metallic , my tongue was coated white (but it was not a yeast issue. Tested for that as well.) I was clearing my throat constantly, like I had a bone or a lump in there, swollen lymph nodes, swollen glands, swollen puffy, dry & itchy eyelids (tested--was it Sjrogen's? no--blepharitis) and on and on and on... I was in misery. :(

EXTENSIVE and expensive allergy testing and food intolerance testing and 9 months on an elimination/rotation diet (keeping a detailed journal--as I had since my nightmarish illness began 3 years prior)---

and it revealed.....

absolutely nothing. :(

The allergist looked at me perplexed saying there was nothing wrong, yet there I was with a constantly drippy nose and dry, red eyes and my mouth and lips beet red and peeling and my scalp peeling, hair falling out and my scalp and face covered in red blistery sores. WTH??? :blink:

It seemed like EVERYTHING was causing reactions, no matter what I took out or added back in. So frustrating! fruits, veggies, even water, for pete's sake--anything could spark a response.

It took almost 9 months for that heightened histamine response to slowly die down. But I ALSO eliminated DAIRY and SOY during that time.

The ONLY time it returns is if I accidentally get gluten CCed.

For me, it was all about the celiac/gluten.

I would hate to see you worrying yourself sick, testing every darn food and spending all the money--as I did--only to find it was inflammation from celiac and gluten.

I have "gluten nightmares"--as do many on here. I am wondering if --with the brain fog and headache you are know experiencing---that you may have been just gluten CCed somehow???

Just suggesting this to you.

I really hope you find answers, as I truly understand how maddening it is.

Best wishes.
  • 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


#24 sora

 
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Posted 30 December 2011 - 07:27 AM

I hope you feel better soon.

I was in the same boat, pre-DX and for several months Post-Dx too. I was in a constant histamine response. Red-faced, with a raised red rash on my face (was it lupus? tested. nope) red chest, burning skin, stuffy nose, sinus pain, burning lips, mouth, throat, difficult breathing, migraines, trouble swallowing (everything felt like barbed wire or razor blades going down), food tasted spoiled & metallic , my tongue was coated white (but it was not a yeast issue. Tested for that as well.) I was clearing my throat constantly, like I had a bone or a lump in there, swollen lymph nodes, swollen glands, swollen puffy, dry & itchy eyelids (tested--was it Sjrogen's? no--blepharitis) and on and on and on... I was in misery. :(

EXTENSIVE and expensive allergy testing and food intolerance testing and 9 months on an elimination/rotation diet (keeping a detailed journal--as I had since my nightmarish illness began 3 years prior)---

and it revealed.....

absolutely nothing. :(

The allergist looked at me perplexed saying there was nothing wrong, yet there I was with a constantly drippy nose and dry, red eyes and my mouth and lips beet red and peeling and my scalp peeling, hair falling out and my scalp and face covered in red blistery sores. WTH??? :blink:

It seemed like EVERYTHING was causing reactions, no matter what I took out or added back in. So frustrating! fruits, veggies, even water, for pete's sake--anything could spark a response.

It took almost 9 months for that heightened histamine response to slowly die down. But I ALSO eliminated DAIRY and SOY during that time.

The ONLY time it returns is if I accidentally get gluten CCed.

For me, it was all about the celiac/gluten.

I would hate to see you worrying yourself sick, testing every darn food and spending all the money--as I did--only to find it was inflammation from celiac and gluten.

I have "gluten nightmares"--as do many on here. I am wondering if --with the brain fog and headache you are know experiencing---that you may have been just gluten CCed somehow???

Just suggesting this to you.

I really hope you find answers, as I truly understand how maddening it is.

Best wishes.


I am sorry you had to go through all that. Bless you for being on here to help the rest of us.
I did actually have the thought this morning that it might be Gluten Cc. My son lives here and he is not totally gluten free and is off work for the holidays and has been eating a lot of junk food. Maybe I am just getting over exposed.
I will scrub down the kitchen today and talk to him about it.
I hope it's gluten, that is enough to deal with right now. :)
I also have the metallic mouth and the swallowing thing. My head itches like crazy but the migraine seems to be easing, yay.
Charlotte
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Wheat Allergy

Chemical (scent) Allergy

“Ah, but I was so much older then, I’m younger than that now


#25 IrishHeart

 
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Posted 30 December 2011 - 07:40 AM

I am sorry you had to go through all that. Bless you for being on here to help the rest of us.
I did actually have the thought this morning that it might be Gluten Cc. My son lives here and he is not totally gluten free and is off work for the holidays and has been eating a lot of junk food. Maybe I am just getting over exposed.
I will scrub down the kitchen today and talk to him about it.
I hope it's gluten, that is enough to deal with right now. :)
I also have the metallic mouth and the swallowing thing. My head itches like crazy but the migraine seems to be easing, yay.
Charlotte



Aha! WEs also live in the house!! ....(wheat eaters) :)

Charlotte, it could just be the gluten CC!!

You're going to have to be extra-vigilant, hon.

Hubs went gluten-free with me about a month after my DX (of his own accord, I did not ask) because he was fearful of CC--and the juggling of the separate butter, PB, jelly, mayo, etc--and the separate toaster, colander, pastas, etc... was crazy. It's just the 2 of us. He even makes our bread.(I know, he's a sweetie :) )

However, MANY celiacs co-exist perfectly well with WEs in the house and NEVER have a problem. I applaud them!!! :)

Let us know how you feel in a day or so!!!

Those migraines are a bugger. :angry: and yup, my head itched, too...my whole body itched like mad and my skin was dry and peely. Not anymore!! yaay!
  • 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


#26 sora

 
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Posted 01 January 2012 - 07:02 AM

I thought I would update. My last post here was Friday morning and the migraine was going away. I had a good day, slightly euphoric and tore through my kitchen my nose running like a faucet the whole time. I found cc issues everywhere. Things I didn't think of before. I change my kitchen towel frequently but realized my son and I still use the same one, things like that.
We had a conversation and I told him we had two choices. 1. go totally gluten free. 2. Basically we both had to be more vigilant.
He said he does not want to go gluten free and and then asked when I was going to be measured for a bubble. ;)
Such a comedian!
So a trip to the dollar store this week.
I had the best sleep Friday night!
Yesterday was good too, went downtown running around getting things done. I have been sticking to basics as far as eating and last night had ham, sweet potato and zucchini and (what was I thinking?) champagne. Yep, big migraine. No histamine symptoms just the migraine. I didn't sleep well last night and woke with the migraine. I took a Tylenol and it has eased some. It didn't occur to me until this morning that champagne more than likely has sulfite's.

When shopping for the ham yesterday I was trying to read the ingredients and the price label was covering it. I went through at least 30 hams trying to find one that wasn't covered. Finally decided to peel the label which took forever, pick, pick, pick. A young girl came over and asked if she could help me. I told her I was gluten free and what I was doing. I asked if they had a ham in the back that might not be labeled yet, no they didn't. Anyway, I picked it off, read the ingredients and then she repriced it for me and it cost me an extra penny for the weight of the extra label. ;)
Charlotte
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Wheat Allergy

Chemical (scent) Allergy

“Ah, but I was so much older then, I’m younger than that now


#27 kareng

 
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Posted 01 January 2012 - 07:09 AM

Aren't there sulfites in ham? I think most of them are gluten-free but they usually have a lot of chemicals.
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#28 sora

 
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Posted 01 January 2012 - 07:16 AM

Aren't there sulfites in ham? I think most of them are gluten-free but they usually have a lot of chemicals.


Ohhh, tell me it's not so! It's my favorite and I bought a 10 lb ham.
I am off to root through the garbage and pick a label. :(
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Wheat Allergy

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“Ah, but I was so much older then, I’m younger than that now


#29 kareng

 
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Posted 01 January 2012 - 07:29 AM

Ohhh, tell me it's not so! It's my favorite and I bought a 10 lb ham.
I am off to root through the garbage and pick a label. :(


Hopefully you got a " naturally processed" ham with out so many added things. I don't know a lot about sulfites.
Did you check a reputable website for sulfite rich foods? You drank wine which usually has sulfites and ate ham. If you really think this might be an issue, why don't you look up some info and try to not eat sulfite foods for a few days?

This one doesn't mentioned smoked meats but I think some have it because I've seen ham advertised as nitrate/ sulfite free.

http://www.webmd.com...ite-sensitivity
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#30 sora

 
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Posted 01 January 2012 - 07:54 AM

Hopefully you got a " naturally processed" ham with out so many added things. I don't know a lot about sulfites.
Did you check a reputable website for sulfite rich foods? You drank wine which usually has sulfites and ate ham. If you really think this might be an issue, why don't you look up some info and try to not eat sulfite foods for a few days?

This one doesn't mentioned smoked meats but I think some have it because I've seen ham advertised as nitrate/ sulfite free.

http://www.webmd.com...ite-sensitivity


Thanks for that link. I just checked the ingredients of the ham and there are no sulfite's. It does have preservatives and one is nitrate.
I have been looking up info on sulfite's. There is a lot of conflicting info out there and it will take time to sift through it all.
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Wheat Allergy

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“Ah, but I was so much older then, I’m younger than that now





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