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

Lymph Nodes


ali786

Recommended Posts

ali786 Newbie

How many of you with celiac or gluten intolerance have or had swollen lymph nodes and where in your body were they found...I know you are out there people...........


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



Celiac.com Sponsor (A8-M):



Mia H Explorer

When my symptoms of chronic fatigue showed up about 15 years ago I had enlarged lymph nodes in my neck, they even took a very painful biopsy which was negative. THey were enlarged and tender for years then slowly diminished.

After I quit gluten and casein 2 months ago they hurt again for a couple of weeks as my body worked to clear the toxins from my body. I used to be swollen and puffy and hung over feeling every morning, stiff like an old lady. Its slowly improving.

also the lymph nodes under my arms hurt too (breast tenderness), I assumed it was the same deal

Mia

jaimek Enthusiast

I actually had a couple of swollen lymph nodes. Had two in the groin area (one of which was removed and biopsied). I also used to get them under my arm too. Haven't had them since going gluten free (3 years now). Think there is a correlation? I never even thought about that!

kabowman Explorer

I always had swollen glands/lymph nodes in my neck, painful, for days at a time which were not associated with being sick - doesn't happen now that my diet has been fixed.

ravenwoodglass Mentor
How many of you with celiac or gluten intolerance have or had swollen lymph nodes and where in your body were they found...I know you are out there people...........

I did, neck and groin mostly. They were swollen for years and doctors attributed it to my 'picker's acne' their misdiagnosis for my DH.

ali786 Newbie
I did, neck and groin mostly. They were swollen for years and doctors attributed it to my 'picker's acne' their misdiagnosis for my DH.

Vow so far noone has swollen lymph nodes on the back!!! I don't know if they are swollen lymph nodes in my back or what...I may have some swollen lymph nodes in my neck but no where as big as they are in my lower back.

  • 2 years later...
damnceliacdisease Newbie

Hi just diagnosed with celiac disease as a result of my initial complaint which was swollen lymph nodes in both the clavical and underarm (axial) regions on the left hand side. Tested postive for mono but swollen glands still there after 8 months. Blood tests apart from mono came back normal. Now into 3rd week of gluten free diet so will see if theres any improvement after going gluten free. Had CT and nothing untoward seen. Had scopes in both ways and nothing back on possibility of intestinal lymphoma which is a good sign as intestinal lymphoma doesnt seem to have a good prognosis in terms of survival. Will update post in a while as to how gluten free diet goes in relation to swollen lymph nodes.


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



Celiac.com Sponsor (A8-M):



  • 1 year later...
SaraKat Contributor

Pain in my left armpit was one of the reasons I kept going back to the Dr. Finally they did an U/S and it showed one enlarged node at 1.5cm. They told me to wait to see if it went down, 3 months later I had another U/S and there were 2 enlarged- 2.1cm and 1.8cm. At that point I was referred to an oncologist and had a CT Scan and XRAY. They had fatty centers and she "didn't think" they were malignant so she wanted to wait 2 more months to redo the U/S. The pain was so bad I had them retested a month later and the largest one they could find was 7mm. So, they went down, but I still have the pain. WEIRD. This was 3 months ago.

Fast forward to last week- I went to a rheum for left sided rib pain I was having (ongoing) and she did a blood test and it was positive for celiac. So, I wonder if those enlarged nodes were related.

  • 1 year later...
Minervalakeny Newbie

I have never been diagnosed,,either by biopsy of the upper small intestine NOR blood work that I have celiac disease BUT

wheat product make me sick so I have given them up. But now I find out that some fillers have wheat so I am going to be more Careful.

ALSO, I HAVE SWOLLEN LYMPH NODES in the messentric area of bowel. I also have small bowel thickening in the ILEUM. I will go for another colonoscopy soon so he can ck up into the ILEUM. I am concerned that I may have T-Cell lymphoma.. Does anyone know about this...

Both the cancer docs say do the colonoscopy, do a PET SCAN and then small bowel study.

frieze Community Regular

Vow so far noone has swollen lymph nodes on the back!!! I don't know if they are swollen lymph nodes in my back or what...I may have some swollen lymph nodes in my neck but no where as big as they are in my lower back.

No lymph nodes on your low back, perhaps fatty tumor, inclusion cyst....

Ninja Contributor

This is really interesting! I've always had swollen lymph nodes (with illness and without)

UKGail Rookie

"When my symptoms of chronic fatigue showed up about 15 years ago I had enlarged lymph nodes in my neck, they even took a very painful biopsy which was negative. THey were enlarged and tender for years then slowly diminished.

After I quit gluten and casein 2 months ago they hurt again for a couple of weeks as my body worked to clear the toxins from my body. I used to be swollen and puffy and hung over feeling every morning, stiff like an old lady. Its slowly improving."

I could have written the above post. After 6 months gluten-free, they still ache somewhat, but they have gone down in size. They start to ache more if I get a whiff or trace of gluten.

  • 2 months later...
trayne91 Apprentice

Just reading post. Realized I forgot to write that symptom down when giving gi my list. Did a search on the forum and here I am. I am still waiting for biopsies to come back, but I also get on on the edge of my face by my chin that flares up and is sore from time to time. I also recently had one flare up there, my armpit, inside of elbow, and top of wrist. I went to dr. And had blood work done and ct scan that came back normal, besides noticing fatty liver. Yes, I get them, too.

peaches987 Newbie

Prior to getting diagnosed with celiac or even understanding what it was, I had an infetion where I was prescribed two rounds of a really strong antibiotic. All told, I was on this stuff for nearly 30 days, per the doctor's orders, it did work to get rid of my infection, but I quickly realized I had a secondary problem. Halfway through the second round of medication (pills), I started having swollen lymphn nodes. not just one or two, like, ten of them. Around my ears, on the back of my head, on the upper part of my neck, I had more lumps than a rhinoceres. And I kept calling the dr saying, are you sure I'm not allergic to this stuff because seriously, my head is COVERED with swollen lymph nodes? My infection's getting better but what the heck is happening to me??

To this day, I'm convinced the antibiotics (which had this massive warning label about being very hard on the stomach) were what pushed my celiac (which I didn't even know I had) into 'red alert' so to speak. I think that the antibiotic drug course made my intestines so bad they caused my lymph nodes to go crazy. I went back to the doctor in the midst of this. Dr examined the ten or so swollen nodes on my head and became concerned something was horribly wrong with me. I was then informed that after my antibiotic course was done, I should be scheduled for bloodwork immediately. None of them believed what I kept insisting, that the antibiotics--while helping me---were also oddly making me sick!!

Well the antibiotic course finished. My lymph nodes returned to normal as SOON as I was off the meds, and my bloodwork came back with severe anemia. And THAT was what made the doctor realize I had celiac.

So I can't say that celiac is the only cause for swollen lymph nodes, but I'm convinced it was the reason why the ones on my head went so crazy.

  • 9 months later...
Blenderly Newbie

I get swollen painful lymph nodes, in my underarms, as does a friend of mine, who also suffer with Celiac.  I have noticed they only seem to swell up when I have either vinegar, or grain alcohols.  But, I don't seem to have that symptom from other glutening incidents.  Was wondering if anyone out there has had that experience?  If it has something to do with distilled grains?  I tried to do some research about it as to why, but didn't come up with anything?  If I have anything containing vinegar I get the typical gluten symptoms, rash, nausea, dizziness, headache, stomach pain, fatigue, etc..etc.....but then also this?!  Anybody else?

Chris04626 Rookie

my son who is 6 now has had swollen lyph nodes in his neck since he was  very little/ Dr always said they was normal and would go away as he gets older

  • 1 month later...
InHisdelight Newbie

I have been suffering with swelling nodes int front of my neck, under my ears, back of my neck. Along with this my ears seemly are blocked, nose congestion. I also, feel like my upper resportary system bronculors I feel as I always have to clear them. My front inner mouth, gums and lips swell.   I could have other swelling glads that I am not aware of. I am also, going through menapause. My GYN put me on the Hormon patch.  Nodes for 3 years chest congestion and ear blocking for 13 years.

 

I have been going to an allergist since Late July 2012 for allergy shots. The "scratch" test indercated I have sever allergys to cat and all types of grasses. Now I was refered to an, ENT where this  ENT put a scope down my left nostrial only said something to the residence in the room and didn't even share with me what was mentioned all he did was, put me on some strong Acid reflux pills. I still have swelling glands and all the above mentioned even after almost a year of allergy shots and strong Acid reflux pills. I am so sick od ofdoctors and miserble and at the point of tears over this.

 

Anyone going through what I am and what types of test(s) have you done with a doctor or on your own that would help?

SeekingSarah Apprentice

How many of you with celiac or gluten intolerance have or had swollen lymph nodes and where in your body were they found...I know you are out there people...........

I have lymphedema, so yes I have lymph system issues, primarily in my legs. The nodes in my neck get swollen when I have DH break outs. And why yes I've had the under the arm enlarged tenderness issue many times in my life....

schtink Newbie

I still haven't been tested for Celiac disease, but I definitely have swollen lymph nodes in my neck.  They aren't painful, but have been swollen for many years.

GFinDC Veteran

I've had swollen lymph node sin my neck for many years also.  Decades actually.  Just never thot of it in relation to celiac until now.

solitaire-master Rookie

I have a swollen lymph node behind my ear. I don't know how long it's been there. I think a couple of years. I don't know what's wrong with me tho. I suspect a dairy allergy. My enterolab results will be coming back within 10 days. I hate waiting for so long!

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 JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    2. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

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

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748

    Beccad611
    Newest Member
    Beccad611
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
×
×
  • 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.