Going for upper endoscopy today

[Midwesteaglesfan]

At 41 years old I have been fighting fatigue and joint pain for a couple months.  My family doctor kept saying nothing was wrong but I was insistent that I just didn’t feel right.  Finally after running several blood labs, one came back showing inflammation in my body and I was referred to a rheumatologist.  He was extremely thorough and sat with me and my family for a good hour asking questions and listening. He ordered X-rays of all my joints and more bloodwork.  He suspected some sort of reactive inflammatory arthritis.  My TTG (Tissue Transglutaminase) came back at 34. he told me to try going gluten free and out me on Salfasalzin to help the join inflammation.  Over the next couple days going gluten free and doing a lot of research and talking to people with celiacs,  we found that I should have an upper endoscopy for insurance purposes in the future.  I reached back out to my rheumatologist and expressed this concern and he got back to me stating I was correct and resume regular gluten diet and stop the medication until after that scope.  
  They were able to schedule me in for 2 days later.  I had been gluten free, or as close to it as I could be for about 5 days.  I know I ate some brats with it but wanted to use them up.  My symptoms had gotten slightly better in those 5 days.  I felt less fatigue and joint pain was slightly better(it had gotten really bad) so for these last 2 days I’ve gone crazy with wheat bread, pasta and such.  I’m hoping those 5 days didn’t screw this endoscopy up.  I can’t imagine after a life of gluten, my intestines healed in 5 days and after eating gluten again for these couple days,  my stomach hurts, joint pain is coming back up so I know the inflammation is there.

  Hinesight after this diagnosis, I have had chronic migraines since my late teens.  Has that been a lingering symptom of celiacs all these years?

 I’ve never really had the stomach issues, for me it came in heavy these last couple months as the fatigue, just always feeling tired and exhausted.  And the joint pain. 
   So getting in the car for the 2 hour drive to the hospital for this scope now.  
  Wish me luck!

[Wheatwacked]

Hello @Midwesteaglesfan and welcome.

A result greater than 10 U/mL is considered positive. Some labs use 15 as the cutoff, but 34 is in the positive.  The endoscopy and biopsy is looking for damage to your small intestine.  I don't don't think 5 days is enough to repair the damage.

1 hour ago, Midwesteaglesfan said:

after eating gluten again for these couple days,  my stomach hurts, joint pain is coming back up

This comment is effectly your answer, regardless of your biopsy results.  The endoscopy has been the Gold Standard diagnostic, and most healthcare providers won't diagnose celiac disease until your intestinal lining Marsh Score reaches stage 3. You don't really want to wait for the damage to get worse, especially since only five days mostly gluten free gave you relief.  Yes, migranes is one of the 200 symptoms that may be caused by Celiac Disease.

Malabsorption Syndrome is often comorbid with celiac disease.  The western diet is deficient in many vitamins and minerals.  That's why gluten processed foods are fortified.  Gluten free processed foods are not;

Vitamin D deficiency is a virtual given.  40 to 60% of the industrial population is deficient in vitamin D, Damage to the intestinal lining from celiac disease can decrease the number of vitamin D receptors.  So now you get no vitamin D from the sun (skin cancer scare) the major source of vitamin D, plus absorbtion from food is poor because of intestinal damage.  

Low iodine intake is getting more of a concern because the major source of iodine used to be bread (dough conditioner with iodine was stopped in the US in the 1970s), dairy (lactose intolerance from eating quick pickles with vinegar instead of fermented pickles which supply lactase excreting lactobacillus to improve Lactose intolerance. Commercial Dairies have wheat, barley and rye added to the cow feed. Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein causing the problem.  And people use less iodized salt.  In the US intake of iodine dropped 50% from 1970 to 1984.

Switch to Grass fed only milk and consider supplementing Liquid Iodine drops to your diet.  The omega 6 to omega 3 ratio of commercial milk is 5:1; Organic milk is 3:1 and grass fed milk is 1:1.

The typical western diet is around 14:1, optimum for humans is 1:1.  Wheat flour is 22:1 omega 6:3.  Choose vegetables lower in omega 6, it is inflammatory.

Eat fermented foods and switch to Grass fed only milk.  Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein. 

 

Edited November 19, 2025 by Wheatwacked

[Scott Adams]

First of all, I want to wish you the very best of luck with your procedure today. It's completely understandable to feel a mix of apprehension and hope. Your proactiveness in researching and advocating for that endoscopy was incredibly smart; securing that formal diagnosis is crucial for both insurance and long-term health management. While it's natural to worry that those five gluten-free days could affect the results, your logic is spot-on—it's highly unlikely your intestines healed completely in that short time, and the fact that your joint pain and stomach issues have flared back up aggressively after reintroducing gluten is a very strong, and unfortunate, sign that the inflammation is indeed present and active. It's also very common for people to look back and connect dots, like your lifelong migraines, once a potential celiac diagnosis is on the table, as it's a systemic condition with many non-gastrointestinal symptoms. I truly hope this scope provides the clear answers you need to finally start on the right path to managing your health and finding lasting relief from the fatigue and pain. Safe travels for your drive, and here's hoping for a definitive answer and a brighter, healthier chapter ahead.

[Midwesteaglesfan]

Back home after the scope.  Dr said as soon as he got in there it was clear signs of celiacs.  Must be a decent amount of damage.  I don’t remember the post procedure conversation as the anesthesia was still wearing off but that’s what my wife says anyway.  Still the biopsy results to come back but pretty definitive and now I get to learn to live gluten free

[Scott Adams]

Welcome to the club!😉

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[RMJ]

I’m glad you have a clear answer.  Some endoscopes have enough magnification for the doctor to see the damage during the procedure.