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Repeat EGD, 5 months after Dx?

amanda12
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amanda12 Apprentice
amanda12
Posted

I was diagnosed with Celiac disease with a biopsy at the end of January 2020.  My doctor wants to do a repeat EGD next month, only 5 months after diagnosis.  From all my reading this does not seem to be standard.  I wonder if anyone could offer some insight on if there is any benefit with proceeding with this procedure so soon.  The one benefit of getting this done now is I have met my out of pocket max for this plan year (runs through the end of June) so I won't pay for this procedure.  However, this is still an invasive procedure so I am hesitant.  I would love to hear from others when they got a repeat EGD done (if at all). 

My labs prior to diagnosis were: 

  • Tissue Transgluatmainase Igg: 12 (normal <6)
  •  Tissue Transgluatmainase Igg: >100 (normal <4)

My labs of last week:

  • Tissue Transgluatmainase Igg: 6 (normal <6)
  •  Tissue Transgluatmainase Igg: 14 (normal <4)

Also my primary symptoms of Celiac were joint pain and brain fog.  I find that even almost 4 months into the gluten free diet, the brain fog has slightly improved but the joint pain has not improved much at all.  I have barely eaten out and when I have its been from the same 2 gluten free restaurants.  I have been very careful analyzing everything I put into my body.  Its frustrating to not see more improvement.  Advise on that end would also be greatly appreciated.  I would like to hear about what your recovery time and process looked like.

Thanks in advance!

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cyclinglady Grand Master
cyclinglady
Posted
(edited)

What?  No need per the GI Association.  Ok, in theory, it can take a few weeks to heal from celiac disease.  The lining of the small intestine can recover pretty quickly depending on the damage.   However, most celiacs take a year to heal based on member input.  Why do some doctors think that patients can master the diet in just a few months?  

Here is the follow-up testing recommendations and you can check other celiac research centers or organizations:

https://www.cureceliacdisease.org/wp-content/uploads/341_CDCFactSheets7_PostDiagnosis.pdf

Me? I had a repeat endoscopy five years after my celiac disease diagnosis and only because my DGP IgA was persistently elevated after a hidden gluten exposure almost a year earlier.  It was still elevated after following the Fasano diet.  It was driving me crazy and I was experiencing hives and GERD-like symptoms.  Biopsies revealed complete healing in my small intestine, but I had developed autoimmune gastritis that goes hand-in-hand often with Hashimoto’s Thyroiditis (oh the perils of getting a diagnosis so late in life!)  Know  that the blood tests were designed to diagnose and not monitor the diet, but they are the only non-evasive tool-in-the-toolbox, so doctors use them.  Why mine was so high?  It is a mystery. 

Endoscopies are invasive.  Necessary to help diagnose celiac disease.  Needed for sure in older folks like myself vs. a young child.  I am glad that I had a benchmark for initial damage.  Will I get one again?  Probably, but not for celiac disease, but to keep an eye on autoimmune Gastritis which is a precursor to cancer (had a big polyp removed).  

Joint pain.  Give it time.  Like a year.  If it is still an issue, get tested for connective tissue disease (like rheumatoid arthritis). 

During this pandemic, I personally would avoid getting another endoscopy when my blood tests were improved.    And I would want my doctor to follow guidelines.  Maybe his business has dropped off?  

Congrats on getting your numbers down!  Keep up the good work.  

Edited by cyclinglady
amanda12 Apprentice
amanda12
Posted
  • Author

Thanks for your response.  I have already have been tested for RA and every other disease under the sun I feel! All blood levels and imaging came back normal.  I sincerely appreciate your advise and input!

cyclinglady Grand Master
cyclinglady
Posted

Hang in there.  Seriously, I finally felt better around the one year mark.  And I knew the diet well.  My hubby had been gluten free for 12 years prior to my diagnosis.  What I did not know was that we are each unique. We can have different food intolerances.  I thought I was getting gluten exposures from commercial gluten-free bread.  Oddly, hubby was not.  With some sleuthing, I found that I can not tolerate Xanthan Gum found in most commercial gluten-free baked goods.  So, I feed it to my hubby, but not to me.  I also have to work around a nut allergy, garlic, mushroom and onion intolerances.  It is a drag for sure.  

Keep a food and symptom journal.  Start with the usual suspect for joint issues — nightshades.  

 

amanda12 Apprentice
amanda12
Posted
  • Author

Thanks so much! 

RMJ Mentor
RMJ
Posted

One way to look at it, would the results of the endoscopy change your treatment?  Unlikely.  If there was no damage seen - great!  If there was damage seen, it is only 5 months and your antibodies are not yet normal, so there could quite reasonably still be some damage.  You already are on a gluten free diet.

You’re doing well.  Keep up the good work. 

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