Swollen Neck Absolutely Insane

[Razzle Dazzle Brazell]

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?

[squirmingitch]

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?

[ravenwoodglass]

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.

[Skylark]

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

[Razzle Dazzle Brazell]

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

[squirmingitch]

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.

[Razzle Dazzle Brazell]

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

[Razzle Dazzle Brazell]

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

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

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.

[Skylark]

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.

[ravenwoodglass]

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.

[Razzle Dazzle Brazell]

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.

[ravenwoodglass]

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.

[squirmingitch]

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.

[Razzle Dazzle Brazell]

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.

[ravenwoodglass]

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.

[Skylark]

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?

[Razzle Dazzle Brazell]

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

[squirmingitch]

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!

[Razzle Dazzle Brazell]

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!

[Skylark]

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.

[Razzle Dazzle Brazell]

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?

[Razzle Dazzle Brazell]

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.

[mommida]

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".

[Skylark]

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.

[Razzle Dazzle Brazell]

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.