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

Five Year Post Diagnosis Endoscopy

cyclinglady

Recommended Posts

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.  

 

 

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

Celiac.com Sponsor (A8-M):


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! 

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

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

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      CT with contrast.

      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast.
    2. Scott Adams
      - Scott Adams replied to Russ H's topic in Publications & Publicity
      1

      Coeliac UK Research Conference 2025

      Thanks for sharing this!
    3. Scott Adams
      - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      2

      Shingles - Could It Be Related to Gluten/ Celiac

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared....
    4. trents
      - trents replied to Mmoc's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Blood tests low iGA 4 years later digestive issues

      Keep us posted.
    5. Scott Adams
      0

      Celiac.com Video News: November 2025

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748
    Megannnnn
    Newest Member
    Megannnnn
    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

    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast. 
    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
×
×
  • 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.