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

Leapoffaith

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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.   

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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.

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