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Testing next week

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Hello! I’m new to this group, and this is my first post.  I’m one of those people that thought Celiac was an allergy, despite having a family history. My Grandma was diagnosed as a senior citizen and there are other family members but I have never discussed it with them.  Now that I know more about it, I believe my dad has it but he will never get tested. He doesn’t have much faith in doctors. My genetic test shows I do have one gene and my doctor wants me to be tested because of chronic constipation and reflux as well as elevated liver enzymes.  I hadn’t been eating much gluten in recent years although I was not gluten-free.  I probably had a meal that included gluten about 1 - 2 times a week.  For the last week I have been consuming it daily in preparation for my endoscopy next week and I am miserable.  I feel like I’m about to pop. I have pain in my left side, joint pain, headaches, sciatica, the list goes on.  Could this really be from gluten when I wasn’t gluten-free before this or is there maybe something else going on? Has anyone else experienced this? It’s going to be tough to keep this up for another week.  



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Celiac.com Sponsor (A8):

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Most or all of the symptoms your describe are not uncommon to the celiac experience and gluten related. By the way, elevated liver enzymes was what led to my celiac diagnosis. Within three months of going off gluten those enzymes normalized. Elevated liver enzymes are experienced by about 18% of the pre-diagnosed celiac population but not one of the issues you hear much about since it doesn't have the typical symptom earmarks of pain or discomfort.

Edited by trents
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Welcome to the forum @KJ2244!

Unfortunately it sounds like you are having classic symptoms, and being on a low gluten diet for so long probably spared you from feeling this badly all the time.

Did your doctor mention anything about a blood test? You should also get this done, however, you normally need to eat gluten daily for at least 6 weeks before a blood test. If you can't manage that, I would ask your doctor to still do a blood test at the end of your gluten challenge, keeping in mind that the results of it may be lower than normal.

Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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Thank you for the replies. I kept telling myself that it couldn’t be the gluten because I wasn’t gluten-free before this. Dang. 
My liver enzymes are only slightly elevated but have been that way and increasing a bit more for the last 3 years. 
My doctor did mention the blood test but since I’ve recently passed that magic “50” mile marker and was due for a colonoscopy, he decided to go straight to the endoscopy and do them at the same appointment. I will ask about the blood test. 
Thanks again!

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Barrett's esophagus occurs more often in people with chronic GERD (Gastro Esophagial Reflux Disease) than in the general population. The constant irritation and inflammation caused by the stomach acid getting past the lower esophagial sphincter (LES) causes cellular changes in the esophagus and that is called Barrett's esophagus. That said, GERD is more common in the celiac population than in the general population. So there probably is some statistical correlation between celiac disease and Barrett's but to say celiac disease causes Barrett's would not be correct.

I don't mean to frighten you but Barrett's sometimes turns into cancer so please get it checked regularly.

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  • 2 weeks later...

Thought I should update this with my results. My biopsy for celiac was negative. The Barrett’s esophagus was negative for dysplasia so that is great news. They did a ton of blood work and I was under the understanding that the ones for Celiac were included but they were not done.
From the other blood tests it looks like I do have Hashimoto’s (I also had an ultrasound of my thyroid) and Pernicious anemia so my GI doctor is recommending that I eat gluten-free anyway. He’s not convinced my biopsy for Celiac was accurate.  Anyway, I’ve been eating gluten-free for almost two weeks and not all of my symptoms are gone but I’ve noticed a big difference particularly with bloating. During the 2 weeks before the endoscopy, I was so bloated my ribs hurt. I haven’t had any bloating at all. I’m not willing to go back to eating gluten to do further testing so I’m just going to eat gluten-free and see how it goes. Thank you for your input! 

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