Blood Test Positive, Biopsy Negative

[Kasaplatt]

I've been dealing with digestive issues, extreme fatigue, anxiety, depression, and brain fog for a while, nearly 3 years if I'll be honest. Digestive issues primarily in the last year and a half. I switched PCP's and the new doctor tested me for Celiac. The blood test came back positive. But, the biopsy I later had came back negative. Only one specimen was tested. After the biopsy, before the results, the GI specialist told me I could start my gluten free diet. 

So, I've been on a gluten free diet for three weeks. My digestive issues have improved greatly. Stools are starting to look normal again, and my energy is getting better every day, and the brain fog feels like it is lifting. 

Deductive reasoning tells me that if I have a positive blood test, negative biopsy, but show positive results on a gluten free diet that I have Celiac Disease. I'm waiting on word from my PCP about what this means for the Celiac Disease diagnosis, but welcome your thoughts! 

[squirmingitch]

Yes, positive blood & positive results on a gluten free diet -- you got it! Here's the problem -- the GI only took ONE biopsy???!!!!! Grrrrrrrrrrrrrrrr!!!!!!! The small intestine, when flayed open & spread out, will cover a tennis court. 1 biopsy has such little chance of hitting the sweet spot where the damage is. There are supposed to be a minimum of 6 biopsies so you got cheated by 5. I don't know what your docs are going to say about an official dx of celiac b/c the GI screwed up so badly. You would have to go back on gluten for a minimum of 2 weeks & get another endoscopy, done right this time, & I bet you would have positive biopsies but I certainly can't blame you for not wanting to go that route!

Do you have copies of your celiac blood panel results & reference ranges & the pathology report from the endoscopy? Could you post them here?

[lyfan]

ONE biopsy? Considering the expense and inconvenience of the whole procedure, one has to ask "Why just one?" Sadly, professional skills are always questionable. You might want to ask them what they actually SAW in the endoscopy and why they only chose one, perhaps everything looked so good and normal that they felt no more were needed. ASK.
 Biopsy interpretation is also often very subjective, you can ask to have the sample (or digital photographs of it, which should have been taken) reviewed by someone else. Often one expert will say "Normal" and another will say "Grossly abnormal..." and it depends on the skill of the interpreter.

 In the meantime, if a gluten-free diet makes you feel better--do it. Probiotics like PB-8 will often make a difference. It is only recently that gut biomes and probiotics have even been recognized as having a major role in these things. There are also "non celiac gluten sensitivity" cases, where a celiac diet is the effective solution, even though Celiac is not confirmed as the cause. Getting to the real experts, and getting their best opinions, is not always easy. never be afraid to ask "Why?" or "What?" and the really good docs will always be glad to explain and answer. If they don't have time for that--find a different doc.

 Go back a mere 20 years, and there may have been six doctors in the whole world who had any grasp of Celiac. One in Australia, one in Japan, maybe two in the US....This is all new medicine, and only recently having any real research with not many answers, yet.