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Lymph nodes?

kam00096

By kam00096
in Coping with Celiac Disease

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kam00096 Contributor
kam00096
Posted

Hi guys it's been a tough day. I had to decide whether to go ahead with an endoscopy next week. GP wanted me to do it despite not having done a gluten challenge and being gluten-free for 5 months. I wasn't sure if there was any point at all at the moment and after spending most of the morning trying to get advice from anyone at the hospital the endoscopy team nurse eventually told me there was absolutely no point and that they didn't know why the consultant had referred me for it (I just can't do a gluten challenge right now, I'd be too ill to work, which I told the consultant). 

Anyways, after getting that sorted it's been replaced with a new, more worrying problem. I've had a swollen lymph node in my neck for the last 3 months (so since I went gluten-free). Doc said it was nothing to worry about a month ago but now I have 2 and they want me to get them biopsied. I've been getting night sweats again (along with other random symptoms) and a quick google has me completely panicking about lymphoma. I know from reading on here that some people have issues with lymph nodes, and my blood tests 6 weeks ago were totally fine, plus I've had the night sweats on and off for years, but with feeling so rough again lately and the increased risk of lymphoma, I'm really scared. 

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ironictruth Proficient
ironictruth
Posted

I am so sorry. How scary. I do know others get swollen lymphnodes. It was mentioned to me twice that mine might have been but no other doc found it and my labs were good. I have had night sweats for years as well. I hope they rush your appointment so you can get an answer.

This is coming from someone who is totally freaked out herself so you are in good company.

I remember telling someone if my celiac gene was negative why bother with the biopsy and they responded: because you are having problems. 

And I was like, oh right, duh. 

So if you have been recently, or are dealing with digestive issues or heartburn, I would go ahead and do it. 

While being gluten-free may reduce accuracy of celiac biopsy, it does not erase the possibility of finding celiac related damage and it also may find or rule other stuff. 

 

 

katesyl Apprentice
katesyl
Posted

I am sorry as well. I too am freaked out about other health related items right now. I know how Dr. Google makes us panic so badly... and yet... It's so hard to stay away.

I had neck swelling this summer noted on one of my routine doctor's exams. She rushed me off to get thyroid lab work and a thyroid ultrasound, all of which were normal. Mind you, I have been diagnosed with celiac disease as of three years ago. I do know I have been glutened from time to time at restaurants (UGH). I am not sure if this swelling was from being glutened or what the deal was. But during this time, I googled a lot and got myself worried about lymphoma as you are. I went to my primary care doctor later on this summer and she said my neck wasn't swollen anymore. They never said it was actually a lymph node but if it wasn't my thyroid then I don't know what else it would have been. But now I am seriously always "Checking" my neck by rubbing it. I am not sure I would even be able to tell much but my husband gets upset with me because he says that I will be the one to make my neck swell by rubbing it...he does have a point. 

Lymphnodes do swell from other things such as viruses and bacteria.

Let us know what you find out on your biopsy. I am glad you have a doctor that is being proactive now and wanting you to get things checked out. 

Ennis-TX Grand Master
Ennis-TX
Posted

Yeah, my first response to gluten is my lymp nodes swell, and I have been having the night sweats for a few years now. -_- Got to admit the doctors actually causally said I might have lymphoma but needed further testing. Sorry can not be of more help, I will respond here if they ever get back to me about it.

kam00096 Contributor
kam00096
Posted
  • Author

Thanks for the replies. Am sorry other folks are having similar problems. I'm trying to tell myself that I had noticed the swollen lymph nodes before my last set of bloods and they all came back great, and that the night sweats have been on and off for the last few years (in which time I've had hundreds of normal bloods done, and a clean chest X-ray) so it might not necessarily be connected. I've got a cough as well which is freaking me out more. Unfortunately I can't get bloods done for another week, and goodness knows when the biopsy will be, so could be in for a long spell of panic and not knowing. It's so hard not to go to the worst case scenario. 

  • 2 years later...
Shayla21 Apprentice
Shayla21
Posted

Hey I’m not sure if you will see this but how did you biopsy go? Did you node end up going away? 

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