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Swollen Neck Absolutely Insane

Razzle Dazzle Brazell

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Skylark Collaborator
Skylark
Posted

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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ravenwoodglass Mentor
ravenwoodglass
Posted

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.

Razzle Dazzle Brazell Enthusiast
Razzle Dazzle Brazell
Posted
  • Author

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

Razzle Dazzle Brazell Enthusiast
Razzle Dazzle Brazell
Posted
  • Author

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

squirmingitch Veteran
squirmingitch
Posted

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

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

Razzle Dazzle Brazell Enthusiast
Razzle Dazzle Brazell
Posted
  • Author

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

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

Hehe thx. I am sure I will with everyone's help. (((((BIG HUG BACK)))) :P

  • 2 weeks later...
HeavenSings Newbie
HeavenSings
Posted

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.

Did you get your results?? Lymph nodes can cause some breathing issues. I am going Thursday to talk with my Dr. about my nodes. Let us know.

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Razzle Dazzle Brazell Enthusiast
Razzle Dazzle Brazell
Posted
  • Author

Did you get your results?? Lymph nodes can cause some breathing issues. I am going Thursday to talk with my Dr. about my nodes. Let us know.

Good luck with that. I am not completely sure what exactly it was but it went away so I didn't find out what it was. I have a feeling my lymphnodes were in fact swollen and maybe even my esophagus

GFinDC Veteran
GFinDC
Posted

Hey Razzle,

You said earlier you were wondering about good doctors. You can check on the CSA web site for a chapter near you. They may have a local group that could suggest doctors.

Open Original Shared Link

Razzle Dazzle Brazell Enthusiast
Razzle Dazzle Brazell
Posted
  • Author

Hey Razzle,

You said earlier you were wondering about good doctors. You can check on the CSA web site for a chapter near you. They may have a local group that could suggest doctors.

Open Original Shared Link

Hey thx.

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