Repeat EGD, 5 months after Dx?

[amanda12]

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!

[cyclinglady]

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 May 26, 2020 by cyclinglady

[amanda12]

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]

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]

Thanks so much! 

[RMJ]

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.