Celiac or something else?

[cheyag1316]

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! 

[cyclinglady]

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]

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]

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]

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]

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!