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

Help .... Just Diagnosed And Confused ...

Leapoffaith

Recommended Posts

Leapoffaith Newbie
Leapoffaith
Posted

Please help.

 

I was just diagnosed and I am confused.

 

CT scan in November showed two lymph nodes mildly enlarged and thickening of lining of small intestine near where the small and large intestine meet (I believe that is what I heard).  I went on 14 days of antibiotics for diverticulitis.  Repeat CT scan showed no change in mildly enlarged lymph nodes. 

 

Endoscope and colonoscopy a week ago.  Three biopsy spots. Small intestine biopsy diagnosed me with Celiac (probably misdiagnosed for many years). Second in stomach showed irritation.  Last showed Bariatic esophagus.  Repeat endoscope in 6 months for Bariatic esophagus and will biopsy small intestine too.

 

Asked GI about my Lymph nodes in membrane of small intestine.  He did not know why they would be enlarged, no cancer inside the colon.  He wants to do a repeat CT scan.  He did not seem concerned about Lymphoma.  I asked if enlarged lymph nodes are common with Celiac, and he said no, it is rare but he has seen it before.  Nurse who conveyed this to me said that lymph nodes are just mildly enlarged, not huge like lymphoma.... but that seemed to be her input, not doctors.  Follow up review with GI doctor March 18

 

Here is the confusion:   Has anyone had mildly enlarged lymph nodes at diagnosis that go down with gluten free diet?  Or should I be concerned about that very rare and extremely deadly form of lymphoma?   I hope the repeat CT scan shows they are smaller and not larger, but I sure would feel better hearing from this board if they had enlarged lymph nodes at diagnosis.   

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

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

I've heard that AI's can cause weird changes within the body. So it isn't that far of a stretch to think that celiac is the cause of it.

 

Honestly, at this point, put it out of your head. Stress is not good on the body (especially when one starts thinking of deadly conditions). The doctor seems to think that it may be due to celiac. I would follow the diet and see what happens.

Lisa Mentor
Lisa
Posted

Hello Leap and Welcome!

 

Here is a thread that has run on for several years.  You might find something of interest:

 

https://www.celiac.com/forums/topic/21208-lymph-nodes/

 

:)

frieze Community Regular
frieze
Posted

Please help.

 

I was just diagnosed and I am confused.

 

CT scan in November showed two lymph nodes mildly enlarged and thickening of lining of small intestine near where the small and large intestine meet (I believe that is what I heard).  I went on 14 days of antibiotics for diverticulitis.  Repeat CT scan showed no change in mildly enlarged lymph nodes. 

 

Endoscope and colonoscopy a week ago.  Three biopsy spots. Small intestine biopsy diagnosed me with Celiac (probably misdiagnosed for many years). Second in stomach showed irritation.  Last showed Bariatic esophagus.  Repeat endoscope in 6 months for Bariatic esophagus and will biopsy small intestine too.

 

Asked GI about my Lymph nodes in membrane of small intestine.  He did not know why they would be enlarged, no cancer inside the colon.  He wants to do a repeat CT scan.  He did not seem concerned about Lymphoma.  I asked if enlarged lymph nodes are common with Celiac, and he said no, it is rare but he has seen it before.  Nurse who conveyed this to me said that lymph nodes are just mildly enlarged, not huge like lymphoma.... but that seemed to be her input, not doctors.  Follow up review with GI doctor March 18

 

Here is the confusion:   Has anyone had mildly enlarged lymph nodes at diagnosis that go down with gluten free diet?  Or should I be concerned about that very rare and extremely deadly form of lymphoma?   I hope the repeat CT scan shows they are smaller and not larger, but I sure would feel better hearing from this board if they had enlarged lymph nodes at diagnosis.   

I am thinking what the docs are referring to is Barretts esophagus..  i think we have had persons on here with lymph node issues that turned out benign, yes?

Leapoffaith Newbie
Leapoffaith
Posted
  • Author

Thank you for your kind response and help.  It is reassuring to know that some had benign lymph node issues.  I will try not to stress out about it.  Thank you all.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,015
    • Most Online (within 30 mins)
      7,748
    Rockette47
    Newest Member
    Rockette47
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jmartes71
      Fighting for a name

      By Jmartes71 · Posted

      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      Celiac getting dentures

      By trents · Posted

      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
    • JoJo0611
      Chances of being coeliac

      By JoJo0611 · Posted

      Thank you all. 
    • Martha Mitchell
      Celiac getting dentures

      By Martha Mitchell · Posted

      Scott I also have different symptoms than most people. It affects me bad. Stomach ache, headache, nauseous, heart racing, whole body shaking, can't walk then my throat starts to close. It attacks my nervous system. The only thing that saves me is a 1/2 of Xanax...it calms down my nervous system 
    • Martha Mitchell
      Celiac getting dentures

      By Martha Mitchell · Posted

      Scott Adams. I was dealing with a DR that didn't care about me being celiac. I repeatedly told him that I was celiac and is everything gluten-free. He put an acrylic lens from j&j. I called the company to ask about gluten and was told yes that the acrylic they use has gluten....then they back tracked immediately and stopped talking to me. The Dr didn't care that I was having issues. It took me 6 months and a lot of sickness to get it removed.... which can only happen within 6 months. The Dr that took it out said that it was fused and that's why I lost vision. If they would have removed it right away everything would be fine. He put in a silicone one that was gluten-free and I've had no issues at all in the other eye. Do not do acrylic!
×
×
  • 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.