Jump to content

  • 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):

Endo Done, Spoke To Gi After Procedures

Mommabearof3

Recommended Posts

Mommabearof3 Rookie
Mommabearof3
Posted

I see a NP for my regular appointments for GI stuff, but had an actual real honest to goodness GI DR or my endo and colonoscopy yesterday, so I got to pick her brain a bit before and after the procedures.

 

They took a large number of biopsies from everywhere, so I'm satisfied with that.  The only visual evidence she saw of anything wrong is damage to my esophagus from acid reflux.  I spoke to her about doing an elimination diet to try to pinpoint what is causing all my distress and she said she fully agrees that that would be the next step.  I'm also going to ask for food allergy testing from the NP.  If she won't order it, I'll ask my GP to order it.

 

This weekend will be the big clean out and shopping for my new diet.  I have two sick kids at home today, and can't do what I need to do to get started as I had originally planned.

 

Liz

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Glad the procedures are finished and it sounds like all went well with the GI. 

If you want to do an elimination diet you may want to ask for a referral to an allergist. They can test you for true allergies and set you up with a starting point for the elimination diet that will give you proper nutrition and enough calories. When you call for the appointment make sure the allergist deals with intolerances. That is what you are looking for with the elimination as there is no testing for those. Be aware that the elimination diet will be started with only a very few foods and they will likely be foods you rarely eat. There is also the chance that your problems have a root cause in celiac so you might want to go on the gluten-free diet for a while before you go through the tedious process of the elimination. Many of us drop dairy at first and some also drop soy as both of those can be a problem for us. Maybe just eliminate the gluten, dairy and soy to start to make it easier on yourself and stay away from the processed gluten-free foods till you have healed a bit. 

I hope you are soon feeling much better.

Mommabearof3 Rookie
Mommabearof3
Posted
  • Author

Glad the procedures are finished and it sounds like all went well with the GI. 

If you want to do an elimination diet you may want to ask for a referral to an allergist. They can test you for true allergies and set you up with a starting point for the elimination diet that will give you proper nutrition and enough calories. When you call for the appointment make sure the allergist deals with intolerances. That is what you are looking for with the elimination as there is no testing for those. Be aware that the elimination diet will be started with only a very few foods and they will likely be foods you rarely eat. There is also the chance that your problems have a root cause in celiac so you might want to go on the gluten-free diet for a while before you go through the tedious process of the elimination. Many of us drop dairy at first and some also drop soy as both of those can be a problem for us. Maybe just eliminate the gluten, dairy and soy to start to make it easier on yourself and stay away from the processed gluten-free foods till you have healed a bit. 

I hope you are soon feeling much better.

Thanks.  That is what I'm debating -  Just going gluten and dairy free, see if I get improvements, and go from there or full out elimination diet.  I'm thinking I could do a good 6 to 8 weeks gluten free and see if I get any improvement, if not then try an elimination diet.  I think gluten free would be the easier option to try first, with little to no prepackaged gluten free products - meat, fish, veggies and fruits with home made salad dressing, etc and no dairy or soy.  I've been thinking on this all day, and I really don't want to deal with more doctors at this point.  It takes so long to get in with a specialist, 2+ months most of the time, and by that point I'm going to be even more miserable then I already am.  

 

Liz

ravenwoodglass Mentor
ravenwoodglass
Posted

   I think gluten free would be the easier option to try first, with little to no prepackaged gluten free products - meat, fish, veggies and fruits with home made salad dressing, etc and no dairy or soy.  I've been thinking on this all day, and I really don't want to deal with more doctors at this point.  It takes so long to get in with a specialist, 2+ months most of the time, and by that point I'm going to be even more miserable then I already am.  

 

Liz

Sounds like a good plan and by the time your appointment with the specialist comes around you may be able to cancel it.

I hope you see results quickly but full healing can take some time. 

Mommabearof3 Rookie
Mommabearof3
Posted
  • Author

I got some preliminary results from my endoscopy in my digital health account.  The pathology isn't back yet, but the doctor's report is in.  I was foggy, but I don't remember her mentioning the duodenal diverticulum, just the reflux esophagitis.  

 

A medium-sized diverticulum was found in the first part of the duodenum.
 
Impression:      - LA Grade A reflux esophagitis. Biopsied.
                 - No gross lesions in the stomach.
                 - Normal examined duodenum. Biopsied.
                 - Duodenal diverticulum.
 
So apparently there is something causing damage to my duodenum and my esophagus is being damaged by reflux, with no known cause as of yet.  I started cutting gluten out as of today, but by no means am I gluten free yet.  I'm also going to start the zantac the GI prescribed at my appointment last month, to try to cut back the acid reflux.  My heart burn has been outrageous since the endoscopy.   
 
Has anyone else had duodenal diverticulum?  I can't seem to find much information on it except it is rare to have a problem from it, but when there is a problem it can rupture o_O.
 
Liz
Mommabearof3 Rookie
Mommabearof3
Posted
  • Author

Just got a message from the Dr. who did the scopes and she said all the pathology came back negative for celiac, chrohn's etc.  Only the reflux damage was confirmed, and they told me to continue on the acid reflux meds.  I don't have a copy of the pathology yet, but I'll be getting it just to double check.

 

Back to square one.

 

Liz

ravenwoodglass Mentor
ravenwoodglass
Posted

How many biopsies did they do looking for celiac? Did they biopsy more than just the duodenum? You might want to get the rest of the report and post it. We have some folks that are good at reading those reports.

Now you give the diet a strict trial. Acid reflux is not an unusual finding for folks with celiac. In my case I decided to just go gluten free and figured if the reflux wasn't better I would try the meds after a week or so. I got real strict with the diet and was lucky and never needed them  I do sometimes need a dose of pepto bismal liquid if I accidently get some soy though. 

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,077
    • Most Online (within 30 mins)
      10,442
    terrificterry
    Newest Member
    terrificterry
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...