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Swollen Neck Absolutely Insane


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34 replies to this topic

#16 Skylark

 
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Posted 16 June 2012 - 10:07 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. :(

I'm thinking you should ask about a wheat allergy diagnosis and be done with it! You may have celiac as well but it really doesn't matter as far as wheat being poison to you.

Please be careful about the breathing. I'm still worried for you if you didn't get to urgent care today. Call an ambulance if you get worried about breathing because that can get dangerous really fast. If it's still bad, go when you read this in the morning, mkay?
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#17 Razzle Dazzle Brazell

 
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Posted 17 June 2012 - 05:38 AM

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.


Thanks raven..and everybody! I am now considering myself a "self-diagnosed celiac" I really wish the fam would wake up tho because many people in my family i think have symptoms. My grandmother on my mother's side hardly eats now. She is super skinny with a big distended abdomen. She has diabetes and non-hodgkins lymphoma. My mother has chronic fatigue, diarrhea all the time, morning nausea (which i have when i eat gluten especially late),, she has chronic rhinitis and sinus infections although all her allergies are now gone after years of treatment. My brother couldnt gain a pound to save his life. He has severe mood swings and thinks he is now schizo after years of mood altering drugs. My heart breaks the most for him because at times he feels he just wants to die and doesnt understand why God would make him that way. He also had very severe food allergies that both my nieces have inherited as well as eczema and acne. Both my nieces are just babies and both scarcely survived their first year in this world... Anyway. I just wish the testing was better and more accurate. It has many of us in a very bad situation :(
  • 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.

#18 squirmingitch

 
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Posted 17 June 2012 - 05:51 AM

You can't save the world. You can't save your family if they aren't listening or willing to save themselves. And I don't mean to sound cruel saying that. I liken it to alcoholics -- no matter how much family members want to save the alcoholic; the alcoholic has to want to save themselves.
It sucks that the testing is so imperfect. Further sucks that so many docs don't have a clue. All I can say is that when your family notices the immense changes in you & they surely will then they will realize that you're on to something. And maybe then they will try it themselves.
But you have to save yourself FIRST. When they are ready to come around then you need to be there to help them so you go girl & get well!
  • 2

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.

 


#19 Razzle Dazzle Brazell

 
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Posted 17 June 2012 - 05:59 AM

I'm thinking you should ask about a wheat allergy diagnosis and be done with it! You may have celiac as well but it really doesn't matter as far as wheat being poison to you.

Please be careful about the breathing. I'm still worried for you if you didn't get to urgent care today. Call an ambulance if you get worried about breathing because that can get dangerous really fast. If it's still bad, go when you read this in the morning, mkay?


Wheat allergy was taken out of the question quickly. He tested me for that quickly. I do carry an epipen with me at all times and always show people now to use it just in case. I felt much better today when i woke up. I think in large because i ate gluten early in the day yesterday and slept very well last night. He wrote me several prescriptions including hydroxizine in case i start having a bad reaction. I only took it a couple times because i knew a stopped response would prevent a response necessary for testing. I had to work third and didnt take it with me as it causes drowsiness. Luckily i was at a hospital lol. I will take it today though and quit glutening. i am gonna go to the clinic when i leave work today. I have been doing all this while working overtime!
  • 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.

#20 Skylark

 
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Posted 17 June 2012 - 02:26 PM

Wheat allergy was taken out of the question quickly. He tested me for that quickly. I do carry an epipen with me at all times and always show people now to use it just in case. I felt much better today when i woke up. I think in large because i ate gluten early in the day yesterday and slept very well last night. He wrote me several prescriptions including hydroxizine in case i start having a bad reaction. I only took it a couple times because i knew a stopped response would prevent a response necessary for testing. I had to work third and didnt take it with me as it causes drowsiness. Luckily i was at a hospital lol. I will take it today though and quit glutening. i am gonna go to the clinic when i leave work today. I have been doing all this while working overtime!

I'm very glad you are stopping by the clinic and not eating more gluten!

So you're aware, antihistamines do not affect celiac testing at all. If your allergist told you this, he is an idiot. Allergy and celiac are completely separate immune responses. Also, food allergy testing is VERY unreliable and if a food gives you allergy symptoms that respond to an antihistamine that is the definition of food allergy, pure and simple. Also, with celiac you don't usually recover from gluten that fast. Again, that's much more typical of wheat allergy.
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#21 Razzle Dazzle Brazell

 
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Posted 17 June 2012 - 04:52 PM

I'm very glad you are stopping by the clinic and not eating more gluten!

So you're aware, antihistamines do not affect celiac testing at all. If your allergist told you this, he is an idiot. Allergy and celiac are completely separate immune responses. Also, food allergy testing is VERY unreliable and if a food gives you allergy symptoms that respond to an antihistamine that is the definition of food allergy, pure and simple. Also, with celiac you don't usually recover from gluten that fast. Again, that's much more typical of wheat allergy.


Idk im almost done trying to figure it out but he prescribed the hydroxyzine for the burnin lips and swelling. Thank God i figured out what was causing it after allergy test for oats and reading the ingredients in my morning breakfast bars. Oats! I grew up on oats that really stinks. I was just really paranoid that if i took it if i had to get a biopsy there wouldnt be enough damage cause it prevents swelling. Yeah i know...dumb. I knew i only had one chance to link all this together and didnt wanna change anything even taking vitamins so that i could see exactly what my body is doing. I was told those tests only had a 5% failure rate. But as you all said whatever it is bottomline it is making me very ill and its not worth it.

6 months ago on a low carb diet i was almost picture perfect health aside from nasal swelling i didnt know i have allergies to every pollen and grass there is all year round. When i started eating a whole wheat bar or whole wheat cereal for breakfast i got very sick. I had bloating that i couldnt figure out why all of a sudden my abs were disappearing and being replaced by bloated gut yuck! I developed anemia after some months of this. I could only work four hours four days a week doing a cleaning job and was walking around like a zombie as i was extremely drowsy almost to the point of lethargy and my gums were pale and my eyes looked like i had black eyes. I slept ten and eleven hours every night and took naps during the day. I went from working out early in the morning, working and then working out again before bed to that. Its pretty crazy but it would be awesome if it were just an allergy...then it could be greatly diminished with treatment.

I thought it was just an allergy too, hence, the reason i went to an allergist. He seemed to take a quick look at me and said, "well i can test you for wheat allergy if you insist but i cant test you for celiac". What's celiac!? "gluten intolerance its the same thing as celiac". I guess my medical history suggests i have an autoimmune thing going on. I figured out he had come to that suspicion by researching this list of lab tests he ordered. He never told me he suspected autoimmune just ordered a bunch of tests with abbreviations i never saw before in my life. Mind you this allergist is pretty prominant and has treated olympic athletes and he didnt even tell me all this stuff. Why would he do that?

.....anywayit just jard for me to believe an allergy caused all this. I took allegra and other antihistamines everyday. They are really strict with testing though. You have to take no antihistamines for four days before testing. Do you think i should get retested later?
  • 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.

#22 Razzle Dazzle Brazell

 
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Posted 17 June 2012 - 05:24 PM

You can't save the world. You can't save your family if they aren't listening or willing to save themselves. And I don't mean to sound cruel saying that. I liken it to alcoholics -- no matter how much family members want to save the alcoholic; the alcoholic has to want to save themselves.
It sucks that the testing is so imperfect. Further sucks that so many docs don't have a clue. All I can say is that when your family notices the immense changes in you & they surely will then they will realize that you're on to something. And maybe then they will try it themselves.
But you have to save yourself FIRST. When they are ready to come around then you need to be there to help them so you go girl & get well!


You are absolutely right! Thx for the support and well wishes. I know some people will always be skeptical. That will make life kinda bumpy at first as my family has always treated me like a hypochondriac until i reduced carbs and inadvertently gluten and got healthier then it was all praise in my turn around over about a year period. Yet there was no hypochondria then! My mother has since noticed the difference since i am back on gluten but doesnt understand that completely cutting it out is necessary. A little bit wont hurt she thinks. She doesnt know what it is like to get well so doesnt realize just how unnecessarily ill she is.

As i said though, thx for your support and i believe this will be the perfect chance for them to see a living example of turn around once again.
  • 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.

#23 mommida

 
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Posted 18 June 2012 - 05:57 AM

Hey Razzle,

I am concerned about the "cottage cheese" description of the back of your throat. Eosinophilic Esophagitus can look like that. There is now proof that Celiac and EoE have a connection. The symptoms are very similar to Glutening for Celiacs. :(
Keep a food journal. Keep in mind eosinophils are active for 12 days once activated by food or airborn "triggers". :blink:
  • 1
Michigan

#24 Skylark

 
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Posted 18 June 2012 - 11:00 AM

Idk im almost done trying to figure it out but he prescribed the hydroxyzine for the burnin lips and swelling. Thank God i figured out what was causing it after allergy test for oats and reading the ingredients in my morning breakfast bars. Oats! I grew up on oats that really stinks. I was just really paranoid that if i took it if i had to get a biopsy there wouldnt be enough damage cause it prevents swelling. Yeah i know...dumb. I knew i only had one chance to link all this together and didnt wanna change anything even taking vitamins so that i could see exactly what my body is doing. I was told those tests only had a 5% failure rate. But as you all said whatever it is bottomline it is making me very ill and its not worth it.

6 months ago on a low carb diet i was almost picture perfect health aside from nasal swelling i didnt know i have allergies to every pollen and grass there is all year round. When i started eating a whole wheat bar or whole wheat cereal for breakfast i got very sick. I had bloating that i couldnt figure out why all of a sudden my abs were disappearing and being replaced by bloated gut yuck! I developed anemia after some months of this. I could only work four hours four days a week doing a cleaning job and was walking around like a zombie as i was extremely drowsy almost to the point of lethargy and my gums were pale and my eyes looked like i had black eyes. I slept ten and eleven hours every night and took naps during the day. I went from working out early in the morning, working and then working out again before bed to that. Its pretty crazy but it would be awesome if it were just an allergy...then it could be greatly diminished with treatment.

I thought it was just an allergy too, hence, the reason i went to an allergist. He seemed to take a quick look at me and said, "well i can test you for wheat allergy if you insist but i cant test you for celiac". What's celiac!? "gluten intolerance its the same thing as celiac". I guess my medical history suggests i have an autoimmune thing going on. I figured out he had come to that suspicion by researching this list of lab tests he ordered. He never told me he suspected autoimmune just ordered a bunch of tests with abbreviations i never saw before in my life. Mind you this allergist is pretty prominant and has treated olympic athletes and he didnt even tell me all this stuff. Why would he do that?

.....anywayit just jard for me to believe an allergy caused all this. I took allegra and other antihistamines everyday. They are really strict with testing though. You have to take no antihistamines for four days before testing. Do you think i should get retested later?

Gotcha. So you have both allergy and celiac symptoms. The anemia and bloating are more celiac, the blistering and swelling is more allergic. Wow, sounds like wheat is bad for you in all kinds of ways!

I wouldn't worry about repeating the allergy tests. Maybe they can run a celiac panel this week, just in case you ate enough gluten for it to switch to positive? It's worth asking.
  • 0

#25 Razzle Dazzle Brazell

 
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Posted 18 June 2012 - 12:33 PM

Gotcha. So you have both allergy and celiac symptoms. The anemia and bloating are more celiac, the blistering and swelling is more allergic. Wow, sounds like wheat is bad for you in all kinds of ways!

I wouldn't worry about repeating the allergy tests. Maybe they can run a celiac panel this week, just in case you ate enough gluten for it to switch to positive? It's worth asking.


Yeah im thinking i may go ahead and go get tested, might as well. If that is no good i may get the gene test done since at the least it could potentially rule out celiac if i dont have the genes. We will see. I go to my old doctor again tomorrow and a G.I. Doc sometime this week. Ought to be fun.
  • 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.

#26 Skylark

 
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Posted 18 June 2012 - 01:03 PM

Yeah im thinking i may go ahead and go get tested, might as well. If that is no good i may get the gene test done since at the least it could potentially rule out celiac if i dont have the genes. We will see. I go to my old doctor again tomorrow and a G.I. Doc sometime this week. Ought to be fun.

Nope, you can't rule out celiac without the so-called genes. Just ask the DQ9 and DQ6 celiacs on the board.
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#27 ravenwoodglass

 
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Posted 18 June 2012 - 01:22 PM

Nope, you can't rule out celiac without the so-called genes. Just ask the DQ9 and DQ6 celiacs on the board.


Skylark beat me to it. Double DQ9 here and almost dead by diagnosis because of false negatives on testing. Both my children were positive on blood tests and one on biopsy. The one who was diagnosed by both blood and biopsy then got gene testing done and went back to eating gluten because the tests didn't show either of the 2 most common celiac associated genes so doctors told her the blood and biopsy were both false positives. She was skeletal the last time I saw her but as she is an adult there is nothing I can do.
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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)

#28 Razzle Dazzle Brazell

 
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Posted 18 June 2012 - 03:42 PM

Skylark beat me to it. Double DQ9 here and almost dead by diagnosis because of false negatives on testing. Both my children were positive on blood tests and one on biopsy. The one who was diagnosed by both blood and biopsy then got gene testing done and went back to eating gluten because the tests didn't show either of the 2 most common celiac associated genes so doctors told her the blood and biopsy were both false positives. She was skeletal the last time I saw her but as she is an adult there is nothing I can do.


Eh yeah im just gonna save my money, time and energy and just go celiac diet and never look back. It is so not worth it. It is kinda rediculous. I am fairly confident that most of my symptoms will improve. Idk how long it will take before my anemia improves. I will probably be in dentures by fifty like my gma because of enamel deficiency but the worse thing is my severely degenerated disc at the base of my spine wjere the nerves go into my legs. I am afraid it will leave me debilitated way too early in life :( i think i want to enjoy my life while i can and as long as i can
  • 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.

#29 Razzle Dazzle Brazell

 
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Posted 21 June 2012 - 08:38 AM

Hey Razzle,

I am concerned about the "cottage cheese" description of the back of your throat. Eosinophilic Esophagitus can look like that. There is now proof that Celiac and EoE have a connection. The symptoms are very similar to Glutening for Celiacs. :(
Keep a food journal. Keep in mind eosinophils are active for 12 days once activated by food or airborn "triggers". :blink:


That is very interesting. Thanks for adding. I will definitely mention it at my next doc appt. I may just call and move it up because now i have red swollen blister like bumps all across the back of my tongue. They are not actual blisters idt because it doesnt hurt it just feels like a doctor has a tongue depressor on my tongue and squeezing my neck a little at the same time. It could also explain why i have trouble breathing since a swollen esophagus could be pressing on my airway. Hmmm. Ahh! Im a mess
  • 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.

#30 squirmingitch

 
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Posted 21 June 2012 - 09:50 AM

(((((Big HUGS))))) Razzle.

Hang in there; you'll get it straightened out.
  • 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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