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Five Year Post Diagnosis Endoscopy

cyclinglady

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cyclinglady Grand Master
cyclinglady
Posted

Great news!  I have have joined the “Peter club”!  My villi are healed!  The gluten free diet is working! 

I was diagnosed around 4/2013 with only a positive DGP IgA and a Marsh Stage IIIB (moderate to severe villi damage).  My main symptom was anemia which I recovered from in just a few months with iron supplements.  Minor symptoms persisted the first year as I discovered food intolerances (e.g. Xanthan Gum) and worked with known intolerances  (lactose, garlic, mushrooms, eggs, etc).  Many intolerances resolved (and some did not) as I healed.  A year later, I was diagnosed with diabetes and further modified my diet (fewer carbs, more fats, less sugar, even from grains).  I did well.  

I did not return to my GI and instead worked with my PCP.  I never had my antibodies tested after my initial diagnosis to see if they were coming down (bad move).   I did get a bone scan after I experienced some fractures and was checked for nutritional deficiencies.  I stupidly assumed that my antibodies would always be elevated like my thyroid antibodies have been for 20 years.  I strongly recommend annual check ups for celiacs.  

Over the years,  My DGP IgA levels were off the chart tested after hidden gluten exposures.    My symptoms were severe and were not consistent which prompted my visits to my new GI.  I would recover, though it took months....like 6.  

In January 2017,  I think I was glutened again (I had not eaten eaten out for a year except at 100% gluten-free restaurants ), and I ate mostly unprocessed foods.  I had a tooth infection, tooth extraction, flu and a cold all in a span of one month.  I developed chronic hives that last for six months.  So, I went back to my GI (off the charts DGP IgA).   My allergist blamed my Hashimoto’s or an undiagnosed autoimmune issue, my PCP just mentioned how I am always chronically inflamed.  My GI offered an endoscopy, but I declined.  Instead, I opted for a slightly modified Fasano diet.  I did not give up coffee! 

Finally, I was still having abdominal issues, so I requested the endoscopy for the first week in January.  Why is my DGP IgA always elevated?  Where was I getting gluten?  Heck, my hubby has been gluten-free for 17 years, so I know the diet.  He was okay though there are some things he never eats and I do.  Am I super sensitive or am I developing another AI issue?    Maybe since I have other antibodies (thyroid) floating around, I should discard this test result (not much research for post diagnosis testing issues).    I was driving myself crazy.  So, I needed to know for sure what was going on.  

This time, my new GI had a newer scope.  I was shown the results (photos)  while in recovery.  You could could  see the villi as the magnification was that strong).  I did have a stomach polyp which was removed and biopsied.  The pathologist reported no damaged in my duodenum, and that the polyp was not cancer and no H. Pylori.  He noted chronic gastritis (this explains my stomach pinching sensation and indigestion, etc.)

I was advised to continue my gluten free diet.  I assume my stomach is still healing as my antibodies are no doubt still elevated (off charts in 4/2017 and 80 in 11/2017) though hopefully lower than 80.  

I am now considering giving up coffee for a while and looking into foods that will help heal the gastritis since I react to so many different medications (anaphylactic) and each medication must be carefully monitored.  Oddly,  did not have gastritis when I was  initially diagnosed.  

I am happy to be a part of the Peter club!    I plan on staying on the modified Fasano diet until my stomach has healed (though I did eat some homemade (Xanthan Free) cookies over the holidays).  I am also happy to report that my HA1c (diabetes test) was in the normal range!  Yes, normal, not even prediabetic!  So, it is possible to mange Type II diabetes without drugs.  

I typed this on an iPad, so expect errors.  I probably made a few mistakes regarding times too, so expect a few tweaks here and there by the end of the day.  

 

 

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Jmg Mentor
Jmg
Posted
31 minutes ago, cyclinglady said:

Great news!  I have have joined the “Peter club”!  My villi are healed!  The gluten free diet is working! 

You deserve it! I always find myself reading your replies to others because there'll always be some good info, a practical solution or just some uplifting positivity in there. It must be all that Californian sunshine making its way through your posts, whatever, you deserve some good news and I'm glad you've got some. 

This:

34 minutes ago, cyclinglady said:

 I am also happy to report that my HA1c (diabetes test) was in the normal range!  Yes, normal, not even prediabetic!  So, it is possible to mange Type II diabetes without drugs.  

Is also brilliant and inspiring in equal measure. :)

 

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted

Happy News! Congratulations your hard work and dedication is inspiring to all. Stay "Peter" Strong our dear Cycling Lady :) 

icelandgirl Proficient
icelandgirl
Posted

Wow! I am thrilled for you!  Great news! I am so glad that you updated us, that is so inspiring.  ?

If I may ask, what have they recommended for the gastritis? I may have that...not sure.  Gastro agreed to do labs first, just in case my gluten reactions have changed...so I don't know.  But I don't want any of the medications.

Thanks and great job!

tessa25 Rising Star
tessa25
Posted

Congratulations!! I'm very happy for you! :D

RMJ Mentor
RMJ
Posted

:) Congratulations!

Wheatwacked Veteran
Wheatwacked
Posted

A great milestone for you! 

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squirmingitch Veteran
squirmingitch
Posted

Yes! You did it! You hung in there through thick & thin. Great going CL.

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