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. Scott Adams
      - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin. In the early 1900s, refined white flour replaced whole grains, and people began...
    2. Scott Adams
      - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted...
    3. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      CT with contrast.

      Thank you.
    4. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased int...
    5. cristiana
      - cristiana replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott. Have manufacturers ever said why that should be the case?
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,439
    • Most Online (within 30 mins)
      7,748
    Lillian Steele
    Newest Member
    Lillian Steele
    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

    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
    • cristiana
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By cristiana · Posted

      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott.  Have manufacturers ever said why that should be the case?  
×
×
  • 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.