Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Lump On Left Side Of Neck


ohsotired

Recommended Posts

ohsotired Enthusiast

Let me start off by saying that I have no idea if this is related to my Celiac, so this may not belong here.

Yesterday I discovered a lump (feels like two smallish ones actually, but they move together when I push on it) on the left side of my neck. It's quite tender when I push/prod/poke, and if it's not two separate ones, it's about the the width of two fingers (long) and one finger width wide.

My first thought was lymph node, but I'm not sure it's in the right place for that (can you tell it's been a long time since I've had enlarged lymph nodes?) I've been tested for thyroid issues based on symptoms (ones that I still have) but of course the numbers came back within range (there were never any thyroid anti-body tests run, though). I'm not sure this lump is in the right place for thyroid though.....

Ok, so I'm rambling. Who do I go see? My PCP? (My PCP is the one that said thyroid was fine based on numbers alone.)

I've had a visit to a rheumatologist and an endocrinologist on my to do list for a while now - do I go to see one of them?

I've got enough weird things going on that I don't think I want to take a 'wait and see' approach with this......

Thanks in advance!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



OptimisticMom42 Apprentice

My son gets all kinds of swelling in his neck, shoulder and underarm so I'm not sure there is a right or wrong place for lymphnodes. Maybe ask your PCP to refer you.

SallyC Newbie

Your symptoms indicate thyroid issues. Doctors told me for 30 years that my levels were fine and never cared anything about my symptoms. I am sickened that I lived so long feeling like crap. I have had one benign lump surgically removed and recently had another come up. I am done with doctors telling me my bloodwork is fine.

After running across www.realthyroidhelp.com I was encouraged. I did research in my area and am working with a Nutritionist. I am 90% better with ALL my symptoms. I am on natural supplements for my thyroid and the lump on my neck is slowly shrinking. Also she worked with me on my vitamin deficiencies due to celiac and hormonal issues. I am better! I encourage you to find a doctor who will listen and don't rule out alternative medicine. It has worked for me.

Mother of Jibril Enthusiast

I would strongly encourage you to see an ENT (ear-nose-throat) specialist. It's possible that the lumps are nothing, but it could also be an infection, autoimmune, or even cancer. Cancer is the least likely, however... if that's what it is you want to catch it now! Last fall I had a lump in the exact same place that wasn't going away even after two rounds of high-strength antibiotics. A biopsy said it was non-malignant, but to be safe (since my ENT told me that lymph node biopsies have an accuracy rate of only 75-90%) I had it removed... and it was perfectly, perfectly normal. Now I can breathe easy knowing for SURE it's not cancer :) People with celiac disease have an increased risk of lymphoma.

ohsotired Enthusiast

OptimisticMom - RE: lymph nodes - You're right. I just looked up lymph nodes, and they're all over. So that might be what this is.

SallyC - I've suspected thyroid issues for a while now, based on symptoms and family history. I really like my PCP, but when I questioned her about just going by the numbers, she got a little huffy and referred me to an endocrinologist (which is a good thing, but I could tell she didn't think I needed to see one). She's a great listener and is mostly open-minded, but I was discouraged with the "your thyroid numbers are fine". I may go looking for another doc that is willing to look at the whole picture rather than just numbers.

MOJ - Maybe I'm dense, but why an ENT for this? I always associated ENT's with things like hearing problems, deviated septum's and tonsillectomies. They deal with things like this?

I'm aware of the increased risk for lymphoma with Celiac disease - that's why I don't want to 'wait and see'. :unsure:

Mother of Jibril Enthusiast
MOJ - Maybe I'm dense, but why an ENT for this? I always associated ENT's with things like hearing problems, deviated septum's and tonsillectomies. They deal with things like this?

I'm aware of the increased risk for lymphoma with Celiac disease - that's why I don't want to 'wait and see'. :unsure:

The great thing about ENTs is that they're kind of half-way between a PCP and a specialist. Mine, for example, was able to order tests for Sjogren's syndrome AND do surgery to remove my lymph node. Your problem might be related to your thyroid... but what if it's not? It might be a waste of valuable time going straight to an endocrinologist (although I would keep the appointment if you already have a referral).

That's just my experience. My PCP was the one who referred me to the ENT... specifically about the lymph node... and he turned out to be very, very helpful. I was pleasantly surprised :)

taweavmo3 Enthusiast

I have a swollen lymph node on my left side, I've had it for years. I first noticed it in my teens, when it was at its largest. I saw an endocrinologist for it, and had a biopsy for non-hodgkins lymphoma, which came back clear. I was then released, and just told to watch it. This was 20 years ago, it has gone down some since going gluten free, but hasn't gone back to normal.

I would have thought an endo would be the way to go....but Jibril's mom makes a good case for an ENT too. Hope you get some answers, and try not to worry too much!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ohsotired Enthusiast

MOJ - Thanks for elaborating on that for me. That does make sense to me. I suppose my first stop should be my PCP, although I am concerned that I might get a 'wait and see' from her.

I don't have an appointment with an endocrinologist yet - unfortunately, I have procrastinated on that and sort of talked myself out of it based on my PCP's attitude. <_<

tweavmo - Thanks for chiming in. I'll try not to worry too much, but that's something I seem to be really good at - worrying. :rolleyes:

Lisa16 Collaborator

I got swollen lymph nodes in my neck too. I think it is celiac related.

I panicked and went in and they ran a bunch of tests-- the doctor said it was one of the major nodes in the neck. Nothing. Then the swollen nodes went away.

They come back from time to time. I wouldn't worry unless the person has them for a long time.

GFinDC Veteran

Hi,

I think an endo would be fine really. For that matter your primary physician could probably order an ultrasound of the throat for you. For location reference, the thyroid gland is centered on the throat, right about where an Adam's Apple is in men. And then spreads around to both sides of the throat from there. I think they say the caner rate is 10% or less for thyroid nodules. I have a couple nodules and a cyst. The doc (endo) injected the cyst with alcohol and killed off some of the thyroid cells. It is much smaller now. The nodules he wants to monitor every 6 months or so via ultrasound. I've had the cyst for a couple years now.

Open Original Shared Link

cyberprof Enthusiast

It could be a lipoma. Open Original Shared Link

~Laura

ohsotired Enthusiast

GFinDC - I think I'm going to end up at my PCP's office for starters and see where that goes.

The location of the lump is almost a straight line to the left (and up just a wee bit) of where my Adam's Apple would be if I had one. :) It's no bigger and no smaller today, but a bit more sensitive to touch I think.

cyberprof - thanks for the link. I'll check that out too.

GFinDC Veteran

Hi Ohsotired,

That sounds like it would be in the thyroid area. I had a FNA, (fine needle aspiration) for my cyst. The doc uses a very small needle to take a sample of the tissue. No anasthetic needed, it wasn't painful at all.

  • 2 weeks later...
ohsotired Enthusiast

UPDATE: I finally saw my PCP today, and of course the lump has gone down. When I started this thread it was almost almond size, and today it's more like the size of a pea.

However something new started in the last couple of days. I had a difficult night the other night, and got almost no sleep, because every time my pillow or blanket touched my neck, it felt like someone had a hand around my throat. Which provoked anxiety in thinking that I couldn't breathe. That sensation lasted pretty much all day yesterday, and has recurred today, but is now gone.

I'm still thinking thyroid, but doc said she thought lump was lymph node. She wasn't interested in discussing thyroid with me, as my labs were 'normal' back in October. After discussing all my other symptoms with her (all point to thyroid/adrenal issues) she referred me to a rheumatologist. <_<

Amazing how quickly one can become frustrated with doctors and want to give up. That's where I'm at today.

I'm just tired of being so dang tired. I know someone here can relate........

JesikaBeth Contributor

Hey Hon! It's Jessica (Live2BWell) ~ Well I was unable to get into my old account, so I had to start a new one, here I am! LTNS! I've missed you!

Then I was unable to send you a personal messege, so here I am ;-)

How have you been? It's been a while! And ofcourse, I lost your phone number (again) - life's been crazy. I am glad you went to the PCP. I look forward to getting back in touch!

Hopefully you can messege me, but if not add me as a "friend"

You can also e-mail me jesikabeth@yahoo.com

Talk with you soon, many (( Hugs ))

ohsotired Enthusiast

Hey woman! Glad to see you back here!

Sent you an email, but can't PM you. Think you have to have X number of posts before you can send/receive PMs now.

Holler at me any time!

GFinDC Veteran

I was wondering how you were faring! Well a smaller lump sounds positive anyway. So did the doc order an ultrasound? That's what my doc did for my thyroid. The ultrasound is cheaper and a better option than an MRI per my doc. I hear you on the tired thing. My doctor said my thyroid tests were normal too. He also said he wouldn't prescribe thyroid hormones unless I had the surgery to remove my thyroid. He said there is a chance of overdosing and stressing the heart. I don't want to have the thyroidectomy so I went and got some thyroid sups at the store. They are helping me a lot with the fatigue, sleeplessness, digestion, sore joints, mental confusion, almost passing out etc. etc. I was glad to find they had thyroid available in the store like that, no prescription needed.

ohsotired Enthusiast

GFinDC - I wish I could say she did something, but seriously all I got was a referral to a rheumy. I would've welcomed an ultrasound, as it would have been something proactive. *sigh*

I'm glad you found something that seems to be helping you; I wouldn't want to have a thyroidectomy either unless it was absolutely necessary.

From the reading I've done, even though my labs are 'normal' I still could be very hypothyroid and suffering from adrenal fatigue. So I guess I keep searching until I find a doctor that will treat based on symptoms and not just labs.

Sounds like you need to find a new doctor, too. ;)

  • 4 weeks later...
noglut4me Newbie
Your symptoms indicate thyroid issues. Doctors told me for 30 years that my levels were fine and never cared anything about my symptoms. I am sickened that I lived so long feeling like crap. I have had one benign lump surgically removed and recently had another come up. I am done with doctors telling me my bloodwork is fine.

After running across www.realthyroidhelp.com I was encouraged. I did research in my area and am working with a Nutritionist. I am 90% better with ALL my symptoms. I am on natural supplements for my thyroid and the lump on my neck is slowly shrinking. Also she worked with me on my vitamin deficiencies due to celiac and hormonal issues. I am better! I encourage you to find a doctor who will listen and don't rule out alternative medicine. It has worked for me.

can you tell us more info. The doc said my levels were fine too and yet I have all of the hypo signs.

What symptoms did you have and what supplements did the nutrionist put you on. Did you get started on iodine?

I am so glad to hear you are doing better. That is encouraging!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748

    VanessaC
    Newest Member
    VanessaC
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.