Increasing Symptoms

[Vozzyv]

Back story: Started having constant LLQ pains 3 years ago. ( no blood, no diarrhea, not affected by food or bm's) Have had X rays, CTs, Colonoscopy, Endoscopy. No sign of Celiac, a few non-cancerous polyps found and cut out. Fast forward to today: LLQ pain still there, but now tension headaches and very stiff back are increasing, along with random muscle twitching, random foot cramps, etc. I have not gone gluten-free until recently, as the endo was negative, and I never seemed be affected by food. I'm on my 2nd GI doctor, she suggested stool tests, another Colonoscopy, and Celiac blood test. With the lack of diarrhea and negative results on last Colonoscopy/Endo, it seems like she's guessing. Should I do any of these, or just wait it out going gluten-free? 

[trents]

Welcome to the forum, @Vozzyv!

Blood antibody testing for celiac disease must be done while are still consuming regular, generous amounts of gluten. The latest recommendations for a "gluten challenge" for those having already embarked on the gluten free diet is the daily consumption of at least 10g of gluten (the equivalent of 4-6 slices of bread) for at least two weeks before the blood draw or the endosopy/biopsy.

Your understanding of celiac disease symptomology is impoverished. Diarrhea is far from the only symptom that is a tip off to the presence of celiac disease. Yes, it is a classic symptom but we now know that there are over 200 symptoms that have been associated with celiac disease and many of them are not GI centric. Many or most celiacs have few or no "classic symptoms" but damage to their gut or other organs is happening none the same. We call them "silent" celiacs. I was one of them.

When you endoscopy was performed, did they take biopsies of the small bowel lining and send them off to a lab for microscopic analysis? The damage to the small bowel mucosal lining is not always visible during the scoping itself.

[Vozzyv]

I understand gluten must be consumed before a blood test, I was debating the taking of one since Endo was negative. I threw out the diarrhea reference since it's common in other GI issues with overlapping symptoms. Yes, I believe they took 4 biopsies. Celiac and H Pylori were ruled out at that time. Most of my symptoms are not GI related, which is making me lean towards Celiac/Gluten intolerance. 

[trents]

"Most of my symptoms are not GI related, which is making me lean towards Celiac/Gluten intolerance."

Not sure what you are intending to say here as the statement seems to contradict itself.

There always has been some confusion/inconsistency over terminology when talking about gluten-related disorders. Having said that, most in the know these days use the term "gluten intolerance" as a synonym for celiac disease and the term "gluten sensitivity" to refer to NCGS (Non Celiac Gluten Sensitivity). Celiac disease damages the villous lining of the small bowel but NCGS does not, though it shares many of the same symptoms with celiac disease. Currently, there is no way to test for NCGS. Celiac disease must first be ruled out. NCGS is 10x more common than celiac disease and some experts believe it can be a precursor to the development of celiac disease.

[Vozzyv]

My bad, NCGS was more what I meant, not gluten intolerance. Anyways, is it worth the blood test if the endo was negative? My understanding is that it's more unreliable than an Endoscopy. Suggestions?

[trents]

The endoscopy with biopsy is considered to be the gold standard of celiac disease diagnosis. Usually, the antibody blood tests are done first and then the endoscopy/biopsy is used to confirm the diagnosis if the antibody testing is positive. However, if the damage to the mucosal lining of the small bowel from celiac disease is patchy or if the onset of the disease is recent such that damage is minimal, the biopsy can be falsely negative. Yes, I would pursue the antibody blood testing but ask for a "full celiac panel" and not just the TTG-IGA test which is all many docs order. A more complete celiac blood antibody panel would include these tests: 

Total IGA

TTG-IGA

DGP-IGA

DGP-IGG

Here is a primer for celiac blood antibody testing: