I've Been Duped

[JenHarris]

SO unbelievably frustrated and so mad I could scream right now. My doctor shouldn't even be a doctor!! I had an upper GI done two weeks ago and just found out my 'Baylor and Mayo- accredited' doctor only took 3 biopsies, and now all he wants to do is put me on a year's worth of Omeprazole and apparently call it a day. This is a load of $&*+!!!! I got a one paragraph explanation of findings in the mail (benign biopsy findings), and no explanation of what could be causing my ulcers or esophageal damage, or the bowel inflammation that was found during the scope. And no mention of the need to schedule a follow-up.

Is this a joke?! Has anybody else dealt with this? I just don't know what to do anymore. Is it worth pursuing further testing or should I just forget it and stick to going gluten-free?

[Marilyn R]

Personally, I'd forego other testing unless you have other medical issues that go unresolved.

I am undiagnosed gluten intolerant person with a family history of celiac disease.

I talked to an Internal Medicine doctor yesterday trained at the U of Miami. After I gave her a brief description of before/after gluten-free scenario, she told me "You have celiac disease".

When I told her that technically, I can't say that, because my biopsy was negative, she nodded and smiled. She didn't SAY that it's a matter of interpretation or linguistics, but that's how I interpretted it.

"If it looks like a duck, quacks like a duck and looks like a duck, it's a duck". (I'm usually not good at quotes, so if I misquoted, my apologies.)

[Skylark]

Sometimes doctors make you want to scream! Go gluten-free, see it it helps. This is a common sense diet and if it's the problem you don't need much help from doctors anyway.

[JenHarris]

Oh, I know that going gluten-free will solve it... it's just that I'd really like to have a firm diagnosis for tax purposes so we can write off some of the food cost, and for my piece of mind after years of unexplained symptoms. My son has Cystic Fibrosis and Short Bowel Syndrome so we pay through the nose for his medical expenses (just for meds and regular doctor visits on a good month, we pay $300- and that's with insurance... on a bad month, we can pay $600 or more).

And the fact that my son seems to be gluten sensitive too means we will be transitioning to a gluten-free household so I can prevent cross contamination. Eventually I'll be getting rid of all of our wheat-based flours and getting rid of all of our pasta and bread that is not gluten free since my husband is the only one left in the household who isn't gluten-sensitive. Thank you for the sympathy/empathy. It does mean a lot to know that there are other people going through the same frustrations.

[Skylark]

Oh, wow. With those medical expenses I can see why you'd want to write off the extra cost of gluten-free food. I don't meet the cutoff to deduct medical expenses (fortunately).

Three biopsies is really standard, as stupid as it sounds. I take it you had a negative celiac panel? It could be that you are non-celiac gluten intolerant but there's no ICD9 code for that. Maybe you can get a good family practice doc to diagnose you based no response to the diet so you can get the tax writeoff.

Did you get the actual biopsy report? A lot of times lymphocytic infiltration will be mentioned in the pathology report but the doctors don't consider it celiac. I don't know if it would help as far as diagnosis, but it might help your peace of mind.

[heather Goble]

I had a similar situation. Negative blood work, negative biopsy. I had been gluten free for a littlemorethan a month when the GI suggested the tests. He told me to eat gluten for 3 days prior and that should be enough. He only took 2 biopsies when I had my endoscopy. I then had a follow up with a physician assistant who said he couldnt believe my results were negative based on my symptoms. He said to just assume I have celiac. Even he did not seem knowledgable enough about it. So did I get a diagnosis? Not really! It can be frustrating. I went gluten free the day of my endoscopy and never looked back. I was miserable the small amount of time I had to go back to eating gluten for the biopsy.