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Swollen Neck Absolutely Insane


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34 replies to this topic

#1 Razzle Dazzle Brazell

 
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Posted 16 June 2012 - 08:03 AM

My lymphnodes are swollen! Omgoodness i am only 16 days into glutening and last night i kept trying to wake up b/c i wasnt breathing. This is Very scary. This i know is putting even more stress on my heart because i have rhinitis and now my swollen lymphnodes in my neck are making it even harder to breathe, as if i am already not fatigued enough from my body beating itself up everyday

Anyone else gone through this? Any advice guys?
  • 0
Gluten and Oat Free 6/'12
Dairy, Corn and Yeast free 7/'12
Nightshade Free, Candida diet & low salicylates 8/'12
Nightshades and carbs and sugars limitedly reintroduced, most salicylates now tolerated 9/'12
No longer Reacting to yeasty breads 10/'12
Test confirmed yeast overgrowth, back on Candida diet 11/'12

You only get one life so make it count.

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#2 squirmingitch

 
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Posted 16 June 2012 - 08:29 AM

I don't understand why you are glutening yourself Razzle. You said you blood was positive & your endo was positive so why are you eating gluten?
  • 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.

 


#3 ravenwoodglass

 
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Posted 16 June 2012 - 11:02 AM

If you mean you were accidentally glutened 16 days ago this may well be something else. Swollen lymph nodes in your neck should not impact your breathing, at least in my own experience. All my lymph nodes (neck, under arms, groin etc) were swollen for years and the doctors figured it was from my 'picker's acne' which was really DH and would often get infected. It never caused breathing problems. It did take over a year for them to go down. Not everything is gluten and it might be a good idea to see your doctor.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 Skylark

 
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Posted 16 June 2012 - 11:53 AM

Get to a doctor! You probably need a strep test. If your insurance allows, you might be able to get to urgent care today.
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#5 Razzle Dazzle Brazell

 
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Posted 16 June 2012 - 02:11 PM

I don't understand why you are glutening yourself Razzle. You said you blood was positive & your endo was positive so why are you eating gluten?


Oh no i havent got tested yet. Hmmm i wonder how it came across that way. I am getting my test done at the end of next month
  • 0
Gluten and Oat Free 6/'12
Dairy, Corn and Yeast free 7/'12
Nightshade Free, Candida diet & low salicylates 8/'12
Nightshades and carbs and sugars limitedly reintroduced, most salicylates now tolerated 9/'12
No longer Reacting to yeasty breads 10/'12
Test confirmed yeast overgrowth, back on Candida diet 11/'12

You only get one life so make it count.

#6 squirmingitch

 
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Posted 16 June 2012 - 02:24 PM

Oh no i havent got tested yet. Hmmm i wonder how it came across that way. I am getting my test done at the end of next month


Oh I'm sorry Razzle --- my bad; I got you mixed up with someone else.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.

 


#7 Razzle Dazzle Brazell

 
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Posted 16 June 2012 - 02:35 PM

Get to a doctor! You probably need a strep test. If your insurance allows, you might be able to get to urgent care today.


Its interesting you suggest strep. A few years ago when i was 18 i had a brief time when my urine turned cherry coke red. I went to the doctor and she looked at the back of my throat and said it looked like cottage cheese. It tested negative for strep and i was negative to mono. I never got an explanation other than maybe i had a virus with absolutely no typical symptoms and guess what my throat looks like again.

My lymphnodes around my neck have been swollen a while. They have recently gotten worse since glutening in prep for celiac test.. I guess the ones under my tongue are swollen too. So with my rhinitis and an overbite ive had for years it is hard for me to sleep even partially on my back. I was only sleeping on my back because my abdominal pain is getting pretty bad especially in my ribs and sleeping on my stomach its hard to expand my lungs. Hhhh im just a total mess lol. I think im gonna just get myself a crypt and sleep standing up...im a dead woman walkin anyway hehe
  • 0
Gluten and Oat Free 6/'12
Dairy, Corn and Yeast free 7/'12
Nightshade Free, Candida diet & low salicylates 8/'12
Nightshades and carbs and sugars limitedly reintroduced, most salicylates now tolerated 9/'12
No longer Reacting to yeasty breads 10/'12
Test confirmed yeast overgrowth, back on Candida diet 11/'12

You only get one life so make it count.

#8 Razzle Dazzle Brazell

 
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Posted 16 June 2012 - 02:40 PM

Oh I'm sorry Razzle --- my bad; I got you mixed up with someone else.Posted Image


Lol thats cool. Trust me, i wont even look back once im done with this test :blink:

I cant imagine why anyone diagnosed would continue to poison himself. Life is so much better without it and there are plenty alternatives these days. When i was gluten free the only thing i missed was moist bread but now the smell nauseates me.
  • 0
Gluten and Oat Free 6/'12
Dairy, Corn and Yeast free 7/'12
Nightshade Free, Candida diet & low salicylates 8/'12
Nightshades and carbs and sugars limitedly reintroduced, most salicylates now tolerated 9/'12
No longer Reacting to yeasty breads 10/'12
Test confirmed yeast overgrowth, back on Candida diet 11/'12

You only get one life so make it count.

#9 Skylark

 
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Posted 16 June 2012 - 03:43 PM

Its interesting you suggest strep. A few years ago when i was 18 i had a brief time when my urine turned cherry coke red. I went to the doctor and she looked at the back of my throat and said it looked like cottage cheese. It tested negative for strep and i was negative to mono. I never got an explanation other than maybe i had a virus with absolutely no typical symptoms and guess what my throat looks like again.

That makes me wonder about thrush though I've never had it to know what it looks like. Anyway, you really do need to get to a Dr.

As I re-read your posts I am very concerned about you. With the severe reactions like blistered lips and throat swelling you need to find out NOW whether there is any chance you could push yourself into anaphylaxis.
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#10 ravenwoodglass

 
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Posted 16 June 2012 - 04:47 PM

As I re-read your posts I am very concerned about you. With the severe reactions like blistered lips and throat swelling you need to find out NOW whether there is any chance you could push yourself into anaphylaxis.


I agree completely. It sounds like your reaction to the challenge is getting pretty severe. If you got relief from the diet and are reacting this badly to the challenge you have your answer as far as whether gluten is something you should be consuming. Get to your doctor as soon as you can and let them know what is going on. Your doctor may tell you to stop the challenge and diagnose. Even if he won't it might be a good idea to end the challenge today. Don't be afraid to call an ambulance if the breathing issue gets any worse. For some of us gluten can cause asthma type symptoms and asthma can at times be deadly.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#11 Razzle Dazzle Brazell

 
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Posted 16 June 2012 - 05:12 PM

I agree completely. It sounds like your reaction to the challenge is getting pretty severe. If you got relief from the diet and are reacting this badly to the challenge you have your answer as far as whether gluten is something you should be consuming. Get to your doctor as soon as you can and let them know what is going on. Your doctor may tell you to stop the challenge and diagnose. Even if he won't it might be a good idea to end the challenge today. Don't be afraid to call an ambulance if the breathing issue gets any worse. For some of us gluten can cause asthma type symptoms and asthma can at times be deadly.


You guys arecompletely right but im in quite a predicament. My allergy doc is the one who started me getting tested for celiac, however, he does not appear to be up to speed on the fact that gluten intolerance and celiac are different and that it is necessary to be on a gluten diet to have a chance of accurate search results. I really need to find a new general doc or something who understands all this. Im at a loss with respect to that. :(
  • 0
Gluten and Oat Free 6/'12
Dairy, Corn and Yeast free 7/'12
Nightshade Free, Candida diet & low salicylates 8/'12
Nightshades and carbs and sugars limitedly reintroduced, most salicylates now tolerated 9/'12
No longer Reacting to yeasty breads 10/'12
Test confirmed yeast overgrowth, back on Candida diet 11/'12

You only get one life so make it count.

#12 ravenwoodglass

 
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Posted 16 June 2012 - 05:56 PM

You guys arecompletely right but im in quite a predicament. My allergy doc is the one who started me getting tested for celiac, however, he does not appear to be up to speed on the fact that gluten intolerance and celiac are different and that it is necessary to be on a gluten diet to have a chance of accurate search results. I really need to find a new general doc or something who understands all this. Im at a loss with respect to that. :(


There are some folks who consider both to be different presentations of the same disease. Both are just as serious. If you have been gluten free and the challenge you are doing is causing a severe reaction you really have your answer no matter what it is labeled. Have you talked to the allergist about your reactions? My allergist saved my life because I show a false negative on testing even though I have been celiac since childhood when I developed DH and severe depression. He put me on a very strict elimination diet and I was to call him on a weekly basis or when I reacted to an added food. I reacted badly 3 days after I added gluten back and when I called and asked him if I should continue his response was 'Heavens no!' and he referred me to my ex-GI That GI almost killed me when I went to him for confirmation and he demanded a challenge. IMHO knowing gluten is poison to your body is more important than a label.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#13 squirmingitch

 
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Posted 16 June 2012 - 06:10 PM

Razzle, I'm worried about you tonight! Something could happen in your sleep. Listen to these gals, they really know what they're talking about. I'm just a babe in the woods compared to these gals & when I see them so very concerned about you that really takes me sit up & take notice.
  • 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 Razzle Dazzle Brazell

 
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Posted 16 June 2012 - 06:22 PM

There are some folks who consider both to be different presentations of the same disease. Both are just as serious. If you have been gluten free and the challenge you are doing is causing a severe reaction you really have your answer no matter what it is labeled. Have you talked to the allergist about your reactions? My allergist saved my life because I show a false negative on testing even though I have been celiac since childhood when I developed DH and severe depression. He put me on a very strict elimination diet and I was to call him on a weekly basis or when I reacted to an added food. I reacted badly 3 days after I added gluten back and when I called and asked him if I should continue his response was 'Heavens no!' and he referred me to my ex-GI That GI almost killed me when I went to him for confirmation and he demanded a challenge. IMHO knowing gluten is poison to your body is more important than a label.


You know wnat you're right. Either way it is a poison. How could i be so stubborn! I am gonna speak with my old doctor and see if she will diagnose me and if not idc. I am torturing and harming my body to prove something i already know. I have to be honest this is purging right now because i think a large part of my determination to be diagnosed comes from being treated all my life that my illness was in my head and that i was exaggerating. That seriously hurts when you are ill and your family treats you as if youre a hypochondriac and just want attention. I dont want attention i want to live a happy healthy life. I honestly think i just wanted to prove them wrong whatever it took and be the one that discovered a family illness and save the day.
  • 0
Gluten and Oat Free 6/'12
Dairy, Corn and Yeast free 7/'12
Nightshade Free, Candida diet & low salicylates 8/'12
Nightshades and carbs and sugars limitedly reintroduced, most salicylates now tolerated 9/'12
No longer Reacting to yeasty breads 10/'12
Test confirmed yeast overgrowth, back on Candida diet 11/'12

You only get one life so make it count.

#15 ravenwoodglass

 
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Posted 16 June 2012 - 06:41 PM

You know wnat you're right. Either way it is a poison. How could i be so stubborn! I am gonna speak with my old doctor and see if she will diagnose me and if not idc. I am torturing and harming my body to prove something i already know. I have to be honest this is purging right now because i think a large part of my determination to be diagnosed comes from being treated all my life that my illness was in my head and that i was exaggerating. That seriously hurts when you are ill and your family treats you as if youre a hypochondriac and just want attention. I dont want attention i want to live a happy healthy life. I honestly think i just wanted to prove them wrong whatever it took and be the one that discovered a family illness and save the day.


There are so many of us who have walked in your shoes. The changes in your health and well being after you have healed will be proof. It took only 6 months before the changes in me were so obvious that it convinced the rest of my family to be tested. I hope you heal quickly. We are here to help you any way that we can.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)




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