Diagnosis Update

[cmc811]

On Friday my GI doctor sent me a message saying my biopsy was equivocal (Marsh I). I sent a whole list of questions about how many biopsies were taken, possibility of damage being missed, next steps to rule out other causes of positive tTg and increased lymphocytes, what is means for screening my kids, etc.I also let her know that at only 1 week gluten free my GI symptoms are MUCH better. I was/am having symptoms beyond GI and those have improved but I imagine they will continue to get better. Right now I know I'm being cross-contaminated despite being careful because I am purposely still feeding my kids gluten until their testing is completed.

 

I just got an email back from her. Although I didn't get all my questions answered she answered the important one which was "Would you call it Celiac?" Her response:

 

Even though the biopsies were equivocal, I would say you do have celiac disease since you feel significantly better by avoiding gluten and the slightly positive TTG.
TTG is very specific so it's positive, it means that the patient usually has celiac disease but it is not 100% sensitive so it can miss cases. If you son is symptomatic but has a negative TTG, I would recommend seeing a pediatric gastroenterologist and discuss getting small bowel biopsies.

I will send you a result letter with the final pathology report.
I will have my staff mail you the procedure report.

 

In response to asking for the pathology, this is what she sent which seems unlikely to be the whole thing:

Results:

FINAL DIAGNOSIS:

Duodenum, Endoscopic Biopsies:
Slightly increased numbers of intraepithelial lymphocytes,
significance uncertain, no villous atrophy or crypt hyperplasia.
No parasites or acute inflammation.
No atypical cellular infiltrates or granulomata.

 

Shouldn't there be more to the pathology report? I will be receiving the procedure report that should better explain how many biopsies and such were taken, but I think that is what I'm getting as far as pathology.

 

Anyway, this should FINALLY give me some ammunition to get my kids properly tested and for that I'm very thankful

 

 

[BlessedMommy]

I'm glad that you're getting some answers!

 

It seems that very little with celiac testing is black and white/foolproof, so I'm glad that your doctor realizes that it's possible to miss the damage when doing a biopsy.