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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Lymph Nodes
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21 posts in this topic

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...........

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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

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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!

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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.

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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.

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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.

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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.

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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.

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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.

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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....

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

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"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.

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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.

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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.

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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?

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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

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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?

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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....

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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.

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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.

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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!

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