Moving To Undiagnosed- Celiac Instead of Crohn's

[LodgeLady]

I tell you the more doctors I see the more disheartened I get. So I saw a new Crohn's specialist Monday. His first response is " I don't think you have Crohn's". Wow! Okay, so from then I tell him my timeline of symptoms, different , different GI experiences, symptoms, etc. thank goodness I sent over my allergists chart because I guess 88 pages from my current GI did not include enough bloodwork.

Seems I am IGA deficient. What that means is all of the Celiac testing that was done would give false negatives because the typical tests performed for a Celiac diagnosis were done based on normal IGA levels. Even the biopsy done for Celiacs was done after 1 year of being GF so that could have affected the results so..... Because I responded so dramatically to a GF diet, my low IGA levels , ethnicity ( Mediterranean heritage) he is highly suspecting Celiac's disease

My bloodwork for the IGG subclasses was done well before the upper GI biopsy for Celiac's, so why didn't my GI see it!( He had the bloodwork sent over). Knowing I was GF for a year, why didn't he suspect the biopsy might be falsely negative? The specialist said a genetic test will only rule out that I could not have it, not that I could. Regular GI doesn't feel that test is warranted right now! What? He says even if I carry the gene doesn't confirm I have it.

Specialist says all of the suspected Crohn's symptoms are just not " bad enough". Biopsy, bloodwork, tests. So only way to be absolutely sure it's NOT Crohn's I'd to do a pill cam. He's leaving that decision up to my GI.

So there you have it. Still no clear cut diagnosis. For now I am tightening up my GF diet to eliminate it from my makeup and meds ( like in vitamins) and being more vigilant when eating out at restaraunts ( not assuming the food is probably GF).

So weaning off Entocort and adding digestive enzymes for my lactose intolerance as well as staying GF. See my GI in August.

 

[Cat-a-Tonic]

I feel for you, I'm still technically undiagnosed myself (test results all "inconclusive", but it acts like IBD and responds to meds like pred, Entocort, etc so it's a tentatively presumed non-specifiic IBD). Were you diagnosed with Crohn's and then this specialist took your diagnosis away, or were you still in the process of getting diagnosed? Either way, this sucks and he honestly doesn't sound like a terribly good doctor. He seriously said your symptoms aren't bad enough?? Symptoms don't necessarily correlate with inflammation, and bloodwork can be unreliable (for example, I've read that about 10% of the IBD population will have normal CRP and ESR, even when in a wicked flare - my CRP is usually low/normal so I suspect I'm in that 10%). Ugh, how frustrating.