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):

On The Way To A Diagnosis

Ace2011

Recommended Posts

Ace2011 Newbie
Ace2011
Posted

After dealing with horrible stomach issues, anemia, joint pain, arthritis, and migraines for years I finally went to a doctor today. I've also been dealing with weight issues. I'm down to barely 90 pounds (I've lost over 20lbs in the past year) and I'm continuing to drop weight because of my stomach issues. As soon as I talked to my PCP and laid out all of my issues he immediately thought of Celiac and made the phone calls for the referrals. I have an appointment with a GI tomorrow where they will do blood work for Celiac and we will schedule an EGD and colonoscopy. I know that doing the tests will not solve anything immediately but I feel so much relief just knowing that people believe me. I'm only 22 and I've been dealing with all of this since I was 10. I finally made the appointment because I realized how much it was interfering with my life and how much I was missing of seeing my son as a result of being sick so often. 

 

Having said that, what can I expect during my GI appointment and the tests? Is there anything that I should know going into that appointment tomorrow? 

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

Welcome Ace!

Wow that is quick to get the referral to GI. There really isn't much that will happen until you have had a complete celiac antibody panel along with possible nutrient testing, but good to get evaluated.

It is encouraging to read that your primary immediately thought celiac disease...hopefully this will become the norm for many more doctors in the foreseeable future :)

nvsmom Community Regular
nvsmom
Posted

I was going to add the tests to ask for but I see I'm too late.  :) I hope the appointment went well.

Georgia-guy Enthusiast
Georgia-guy
Posted

Welcome Ace! What did the GI say today? You are VERY lucky to have a doctor who is aware of celiac! I have been fighting to get my doctor to just run the tests then bill the insurance without pre-approval because I am requesting the tests, not them ordering the tests. I am like you though, I've been dealing with issues as far back as I can remember, but I've been fighting for an answer since I've been out on my own (my parents thought I was seeking attention and faking). I'm 25 now and have ruled out about 20 different things (SLE, Crohns, and IBS being the top 3 suspects doctors keep saying until I show them negative tests).

Ace2011 Newbie
Ace2011
Posted
  • Author

The GI appointment went well. I found out that I've already lost 20% of my weight in less than a year (I'm down to 80ish lbs right now) so he is pretty worried about my overall health right now. He is holding off on an EGD but he is scheduling a CT and colonoscopy for me. They did a ton of blood work this afternoon though. I'll list what the lab order says at the bottom. I was told that I should get a phone call on Friday if anything is abnormal with the blood work. He is thinking either Celiac or Crohn's based on my symptoms and the fact that I already have arthritis and anemia. 

I'm so, so thankful that they are taking it seriously. I've had so many people, my parents included, just brush my stomach pain off and never do anything about it. Growing up I just assumed it was normal because no one ever seemed concerned. My husband is the one that finally pushed me to make the phone call last week because this is definitely not normal. 

Lab tests: 
CBC
CMP

TSH

TtG IgA - TTGABA

IgA Total

CRP

kareng Grand Master
kareng
Posted

The GI appointment went well. I found out that I've already lost 20% of my weight in less than a year (I'm down to 80ish lbs right now) so he is pretty worried about my overall health right now. He is holding off on an EGD but he is scheduling a CT and colonoscopy for me. They did a ton of blood work this afternoon though. I'll list what the lab order says at the bottom. I was told that I should get a phone call on Friday if anything is abnormal with the blood work. He is thinking either Celiac or Crohn's based on my symptoms and the fact that I already have arthritis and anemia. 

I'm so, so thankful that they are taking it seriously. I've had so many people, my parents included, just brush my stomach pain off and never do anything about it. Growing up I just assumed it was normal because no one ever seemed concerned. My husband is the one that finally pushed me to make the phone call last week because this is definitely not normal. 

Lab tests: 

CBC

CMP

TSH

TtG IgA - TTGABA

IgA Total

CRP

It's super easy to do the endoscopy at the same time as the colonoscopy. I would insist on it.

GottaSki Mentor
GottaSki
Posted

It's super easy to do the endoscopy at the same time as the colonoscopy. I would insist on it.

 

I agree!

 

Get the endo at the same time as the colonoscopy -- there is no prep for an endo and you will already be on the table sedated.

 

Not to mention it saves the frustrating wait between procedures should the colonoscopy come back clear.

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

Celiac.com Sponsor (A8-M):


Ace2011 Newbie
Ace2011
Posted
  • Author

I spoke with the nurse when they called to schedule the colonoscopy. They won't do the endo untill/unless the blood work and colonoscopy show a need for it. The colonoscopy is scheduled for the 17th so it will be a bit of a wait before I begin to get answers. I should get the blood work results next week so hopefully it shows something that they can explore further.

elless Rookie
elless
Posted

My blood tests look very similar to your list.  Its strange that they won't run both the endoscopy and colonoscopy.  My GI scheduled them both.  However my insurance company won't let me do them both the same day.  I cringed a little bit looking at the prep work for the colonoscopy. Lol.  Good luck by the way. 

GottaSki Mentor
GottaSki
Posted

I had to push my insurance to allow them together and the our copayment was based on both individual procedures...no credit was given for time and materials saved doing it at the same time.....but at least it saved me an extra sedation...I don't do well with sedation :(

Georgia-guy Enthusiast
Georgia-guy
Posted

All I can say about a endoscopy/colonoscopy is I now know that if I get one done, I don't need drugs to sedate me...I can just eat a nice full meal of pasta (sad face), bread, tortillas (sad face), and pretty much anything made straight from wheat and I will be out in a short time. (It's weird cuz stuff with gluten in it, like twizzlers or soy sauce, have a separate list of symptoms.)

But I have had an upper endoscopy done before, and I do recall that it was important to listen to the post-procedure instructions...like don't eat for so long, and no soda for so long. You also don't want to have anything on the schedule for the rest of the day. Go home and relax!

(Side note for anyone who isn't aware, I am not Dx yet, working on getting that done so I still have to eat gluten)

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):

  • 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...