THE RESULTS ARE IN...not really...

[draperygoddess]

Okay, I know you all have been waiting on tenterhooks for my second opinion...(well, I have, anyway!)

Got the call from the doctor's office today--the nurse said, "We got your second opinion in from Vanderbilt, and it was normal." I asked her to fax me the results. I could not believe what I saw. I will back up and give you the results of the original pathology report first, so you get the picture.

Original report:

GROSS DESCRIPTION: Submitted in formalin labeled "random colon biopsies" are multiple fragments of mucosa which measure 0.5mm in aggregate, entirely submitted in one cassette labeled A1.

Sections show fragments of colonic mucosa showing a pattern of non-specific colitis. The surface epithelium is intact with no evidence of dysplasia. Scattered inflammatory cells are present within the surface epithelium. ...The lamina propria is expanded with with edema and mixed inflammatory cells.

DIAGNOSIS: Non-specific colitis with no evidence of inflammatory bowel disease or microscopic colitis.

Now, the second opinion:

DIAGNOSIS: Colon, random, biopsy: colonic mucosa with no significant histopathologic change.

MATERIAL RECEIVED: 1 slide

Now, I am frustrated to have gotten this from the nurse, more frustrated to be told (again) that there's nothing wrong with me. But I am MOST frustrated to see that my GI submitted ONE slide for Vanderbilt to review!

So, my forum friends, what now?

[tex]

You can't win. He probably hand picked the slide for that reason.

I guess we were mistaken - there's nothing wrong with you, after all.

When My GI doc told me there was nothing wrong with me, I just wrote him off, and never went back.

Tex

[draperygoddess]

Tex,

So, I just let it go, and figure this out on my own? (Which I guess is what I've been doing for the past 2 months...)

It has begun to be awkward trying to explain my funky diet when I go anyplace that involves eating (which I do often, between my business activities and my church activities). Twice this week I have had this conversation with people: No, I'm not trying to lose weight (this is usually their first assumption, and they think I'm one of those crazy people who obsesses about their weight when they don't need to). What do I have? Well, the jury's still out on that. You see, there's this one type of colitis that can only be seen under a microscope, and I have all the symptoms, but my doctor doesn't think I have it, nor does the pathologist at Vanderbilt, and yes, I'm sure there really is something wrong with me...(okay, no one actually asks me that, but I feel like I have to defend myself!).

Had myself a good cry this evening, so I'm no longer frustrated and overwhelmed, just angry. I could talk to my doctor, but I'd probably just rip his head off and confirm his suspicions that I'm an unstable woman who WANTS something to be wrong with her.

If the hat fits...

[Joefnh]

Cynthia when I go to functions at work i do get looks when I can't eat little to nothing there, or if I bring my own food to catered events. I've found that just saying "I have several food intolerances that limit my diet" usally works well. If pressed on the topic I describe it that it's similar to someone with celiac disease who can't eat anything with wheat in it.

Once the person you talk to realizes that you just can't tolerate certain foods that's all that has to be said, it's not really necessary to go into what this diagnosis is etc... Keep it simple and light hearted, laugh at it even and that usally settles the issue quickly

Take care

Joe

[tex]

Cynthia,

I never had a diagnosis, either, (except by my Enterolab report). I never really cared what anyone thought about my diet. When questioned, I just named off the foods that I was sensitive to, and pointed out that if I ate even a trace of any of them, it would make me as sick as a dog, for at least several days.

I've been GF for 9 years, now. I've been hospitalized 3 times in the last 6 years, (2 major surgeries, where they kept me for roughly a week each time, and 1 overnight stay), I've seen at least 3 dozen of doctors in the process, and, never has a single one of them ever questioned me when I informed them that I was sensitive to gluten, and several other foods. In fact, each time that I was there, they sent their food service dietitian to my room, to explain to me exactly what they could provide, and I picked the selections for each meal.

I figure if my word is good enough for the doctors, it should be good enough for my friends, family, and concerned strangers.

If you want validation of your food-sensitivities, Enterolab test results can provide that.

Tex

[sarkin]

Cynthia,

I did get an MC diagnosis many years ago, and haven't seen a GI since. I did learn that I have a celiac gene from Enterolab. If someone asks me flat out whether I have celiac - I say yes, because it's so much shorter than going into a long explanation, and people have often heard of it (and restaurants know that means we really, *really* can't have gluten). (It's kind of like answering "fine, thanks, how are you?" instead of telling people what's really going on in detail - except when that's really the right thing to do.)

I have also said something like Joe's wording, that it's "like celiac."

In the olden days, celiac was diagnosed if wheat made people sick, and quitting it made them better. And then, if eating it again made the sickness return... DUH! However, nowadays doctors have all kinds of awesome technology, which has confused them (as high-tech toys so often do).

Maybe we should start a betting pool on your Enterolab results, which I know you'll be organizing when the time is right. I'm betting you can say "like celiac" with a clean conscience.

Also, when people ask what happens if I inadvertently eat wheat, I usually say "you don't want to know." (That question usually takes place over a meal, and the detailed answer is generally not considered dinner-table conversation.)

Hope this helps, and congratulations on figuring out what your doctor is too dim to grasp, on your own. I hope it gives you some relief that you're not alone in working this out for yourself.

Love,
Sara

[sarkin]

p.s.

My PCP accepted my Enterolab results without question, and put them in my chart. So there it is, in my medical record, still without a doctor having pronounced the magic 'celiac' word. I would guess my doctor was accepting of those tests because she knows nothing about them, but has of course heard of the anti-gliadin antibodies. (And if she has further questions, I'm happy to enlighten her.) She did exhort me to follow my diet strictly (DUH!), so she is on board...

You'll get there when you get there, and because you're heading in the right direction. It took me a while to get the Enterolab testing done (looking back on it, I was underestimating the fatigue and brain fog). And just think of all the money you'll save on specialist co-pays now that you've used up your GI's expertise!

--S

[MaggieRedwings]

Morning Cynthia,

I too follow the route of Gloria. When asked I just say I am a celiac and they seem to know that better than going into a long sage of MC. It has worked for me and to tell you the truth, I am pretty sure my being a celiac is so.

Good luck and just don't hassle with explaining to people. Terrible dinner conversation as Gloria said.

Maggie

[tex]

I tend to do that too, in order to keep it simple enough that most people can understand it. Sometimes I describe it as, "like celiac disease, only worse, because I have to avoid other foods in addition to gluten".

Tex