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):

Celiac or something else?

cheyag1316

Recommended Posts

cheyag1316 Newbie
cheyag1316
Posted

Hello, all

I'm new here and I have not been diagnosed at this time. I'm scheduled for celiac biopsy this coming Tuesday and, as expected, I'm nervous.  Let me start from the beginning:

 

I have had alternating constipation and diarrhea since I was a toddler (per my mother).  I had extensive testing through my younger years (celiac was never considered to be the cause of my digestive issues) and was eventually diagnosed with biliary dyskinesia and IBS. I underwent cholecystectomy when I was 17 years old.  I'm currently 24. Digestive symptoms continued to come and go and I accepted my "catch-all" diagnosis of IBS and went about my life. Fast forward to February 2017, I moved across country away from all of my family and friends. Eventually I became depressed and my digestive symptoms went haywire (yellow stools, diarrhea, constipation, constant heartburn) and no matter what I ate it didn't improve. It got worse. Over the course of a few months, I blamed my symptoms on stress and depression. I eventually saw my doctor and bloods were done in may and were normal. Bloods were done again in June when symptoms didn't improve and revealed very slightly elevated ALT. Then, in July, I moved back home. I thought my symptoms would disappear. Wrong. They kept getting worse still. I saw my doctor and bloods were done again in October and my ALT and bilirubin were slightly elevated, but elevation was minimal and she felt comfortable waiting to redo labs in 6 months. I eventually had ruptured hemorrhoids and that sent me to the ER and I was referred to GI. GI suspects celiac given that I did to gluten free on my own and symptoms lessened significantly. (I had also been experiencing brain fog, headaches, pitting edema in my ankles, and had trouble concentrating and focusing my eyes). Those symptoms, like I said, diminished while gluten-free. However, I'm currently doing the gluten challenge before my biopsy and I have had alternating diarrhea and constipation again, edema and headaches have returned, but I don't feel as poorly as I did before I went gluten-free. I have left mid back discomfort and I have convinced myself there is something wrong with my pancreas (I'm so worried about cancer). I know that is extremely rare, especially in my age group and I know undiagnosed celiac can affect the pancrease. Did anyone else have mid left back pain pre-diagnosis?  What about elevated liver enzymes and bilirubin?  

 

Thanks! 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

All that can be attributed to celiac disease.  There are over 200 symptoms that are attributed to celiac disease.  You might have many, a few or NONE.  Yes, there are documented asymptomatic celiacs!  

Keep going on your challenge.  Talk to your doctor if you get really sick (I assume he/she knows you are doing the challenge).  Celiac symptoms can also wax and wane over a course of time.  Wierd, but true.  Since you are putting yourself through so much misery, insist on a complete celiac blood panel.  Leave no stone unturned.  Why?  Maybe you are like me and test negatively to the common TTG blood test.  

Chances are you do not have cancer.  Did I mention that anxiety is a common symptom. Of celiac disease?  This can resolve, so no worries.  

Good luck and keep us posted!

cheyag1316 Newbie
cheyag1316
Posted
  • Author
On 11/9/2017 at 3:17 PM, cyclinglady said:

All that can be attributed to celiac disease.  There are over 200 symptoms that are attributed to celiac disease.  You might have many, a few or NONE.  Yes, there are documented asymptomatic celiacs!  

Keep going on your challenge.  Talk to your doctor if you get really sick (I assume he/she knows you are doing the challenge).  Celiac symptoms can also wax and wane over a course of time.  Wierd, but true.  Since you are putting yourself through so much misery, insist on a complete celiac blood panel.  Leave no stone unturned.  Why?  Maybe you are like me and test negatively to the common TTG blood test.  

Chances are you do not have cancer.  Did I mention that anxiety is a common symptom. Of celiac disease?  This can resolve, so no worries.  

Good luck and keep us posted!

Thank you for your reply.  2 more days until my biopsy. Good or bad, I'm ready to just finally have some answers. 

cyclinglady Grand Master
cyclinglady
Posted

Just two more days!!! ?. You can do it!  

Even if negative, consider trialing the gluten free diet if your GI can not find any issues.  It might help.  

cheyag1316 Newbie
cheyag1316
Posted
  • Author
On 11/12/2017 at 5:55 AM, cyclinglady said:

Just two more days!!! ?. You can do it!  

Even if negative, consider trialing the gluten free diet if your GI can not find any issues.  It might help.  

Well, the endoscopy is done. Doctor found a hiatal hernia and he said the lining of my small intestine is abnormal which he explained may be consistent with celiac disease. I return 12/4 for my biopsy results. 

Jmg Mentor
Jmg
Posted
1 hour ago, cheyag1316 said:

Well, the endoscopy is done. Doctor found a hiatal hernia and he said the lining of my small intestine is abnormal which he explained may be consistent with celiac disease. I return 12/4 for my biopsy results. 

I had similar findings but was very surprised when the biopsy was negative. Nevertheless, the gluten-free diet resolved my symptoms. So do consider going gluten-free again once testing is done.

Best of luck!

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...