Is the gluten challenge worth it with what I’ve got going on here?

[Nogluten4thisgirl]

I got my dna test back and here are the results: 

HLA-DQA1, ALLELE 1
Value
01:02

HLA-DQA1, ALLELE 2
Value
02:01

HLA-DQB1, ALLELE 1
Value
02:02

HLA-DQB1, ALLELE 2
Value
06:02

I had a CT scan, which nothing was found except for a large bowel fecal mass, which doesn’t surprise me because I get super constipated and my GI track doesn’t seem to push anything out.  Stuff just sits in my rectum hanging there… 

My blood labs for celiac were negative, but I’ve also been gluten-free since May 2024.

Here are my symptoms and why I was getting tested for gluten intolerance or celiac: 

Chronic constipation, bowel not active, brain fog, language issues, finding my words, memory issues, brain feels like it’s on fire sometimes, adhd, depression, anxiety, dry mouth, mouth sores, skin lesions/sores that went away with gluten-free diet, dry eyes, joint pain and cracking, chronic fatigue (debilitating physical fatigue- not wanting to move anywhere), graphical tongue, breast tenderness, vitamin B12 and D deficiencies (while not on gluten-free diet), gas that would clear a room, leg and ankle feel like they are heavy or retaining water/painful when walking, acne, brittle nails, night sweats and horrible heart palpitations

My GI doc said to do the gluten challenge, but honestly, I’m scared to go through it.  Many of these symptoms have cleared up after gluten-free.  Most noticeable is joint cracking has gone way down, mouth is not as chronically dry, my fatigue is better, graphic tongue is gone (I’ve had this my whole entire life!), vitamin levels are stabilizing, no more horrible smelly gas, my cuticles look much better.  

I’m just not sure if it’s worth the true diagnosis and going through it all.   Thoughts??? 

[Scott Adams]

Your experience sounds challenging, and it’s great that you’re already seeing some improvements on a gluten-free diet. Based on your HLA gene results, the alleles you have (DQA101:02, DQA102:01, DQB102:02, DQB106:02) show a mix of gene types, some of which are associated with an increased risk of celiac disease, though none are definitive indicators on their own. Given that celiac testing can be inconclusive after going gluten-free, it’s understandable that a gluten challenge feels daunting.

Some people choose to forego a formal diagnosis and stay gluten-free if they’re experiencing significant improvements, as a gluten challenge can indeed trigger unpleasant symptoms. But if having a definitive diagnosis would help with managing your long-term health, you could talk to your GI about options to ease into the gluten challenge more gradually. Alternatively, you might explore non-invasive options like monitoring for elevated anti-gliadin antibodies, though this isn’t as conclusive as a biopsy.

Ultimately, if your symptoms are notably better and your quality of life has improved, staying gluten-free without a diagnosis can be a valid choice, especially if your doctor is supportive of this approach. You might also look into working with a dietitian to ensure that you’re getting all the nutrients you need on a gluten-free diet, especially since you’ve had vitamin deficiencies in the past.