Do I Care If I Have A Diagnosis?

[ErinP]

So here's the thing--

I landed in the hospital about two months ago for four days.

I had a severe bacterial infection (actually, three) as well as serious inflammation of both my ilium and colon. The doc was positive it was Crohn's disease based on the CT scan, bacterial infections and my history.

What struck me odd from the very beginning though is the fact that I could directly link the flare that landed me in the hospital to having cheated on the low-carb diet I'd been following for the better part of two years. Donuts, muffins, brownies... It was the week before Easter and I was celebrating!

So, obviously once I was out of the hospital and off their bland, starchy diet, I went back on my low-carb diet (no grains, no sugar) with the additional modification of both Specific Carb and Paleo. (Ie, no dairy, no nuts, no artificial sweeteners etc. either) Afterall, I now new I had Crohn's disease!!

I went in for my colonoscopy two weeks ago and it looked fabulous. In fact, my doc was mumbling as he went along that maybe it was just infectious colitis... I said that might explain the infections this spring, but what about my history??

He said it quite possibly might be nontropical sprue. I didn't realize that was just another name for celiac, so I mentioned that I think grains cause me some real problems... He nodded and gave me suggestions for dealing with gluten intolerance and said we could start testing for it.

But here's the thing: Do I care? I already KNOW grains cause me problems. I already know I need to dump them from my diet. I also know that testing for celiac is no guarantee of an accurate diagnosis.

I'm already operating from the standpoint that I have celiac disease so does it matter if I have a diagnosis in my chart??

Thanks in advance for any thoughts for a newbie!

[Poppi]

I don't care.

I have a family history of Celiac and I get so violently ill with the slightest cross contamination that doing a 3-4 month gluten challenge is out of the question. I will never have an official diagnosis because I just cannot imagine making myself ill to the point of not being able to care for my own children for that length of time. Plus I worry about the recovery from the gluten challenge? What if it took several months or even years to recover? What if I did so much damage that I developed refractory celiac? Not worth it.

Based on my symptoms, my sensitivity and my family history I am 100% certain I have Celiac disease. That's all the diagnosis I will ever have.

[Jenniferxgfx]

I'm wondering that myself. For me, I've had a lot of diagnoses-by-exclusion and not a lot of confirmation of anything. Or even acknowledgment of suffering. I'd really like the confirmation of a diagnosis at this point in my journey through medical hell.

In your case? Seems awful cut and dry--gluten is bad for you!! Screw the test.

[GlutenFreeManna]

Since you have been low carb for 2 years any testing you do is highly likely to show up as negative regardless of whether you have it or not. You would have to make yourself sick again by consuming the equivalent of 3-4 slices of bread for around 3 months prior to blood testing. And even then there is about a 30% false negative rate. Why make yourself sick for a label? As long as you are committed to staying stictly gluten-free it's no big deal to self diagnose, IMO. I think one concern SOME people have is whether they will be able to stick with it for the rest of their life without a diagnosis. Some people also persue diagnosis so they can get the support of their family members or make sure their immediate family knows to be tested. Without a diagnosis, however, you can still ask your dr to test for other things that are common such as low vitamin and mineral levels and other auto-immune diseases like hashimotos or RA.

[Jestgar]

I also don't care.

What I choose to eat is my business and an MDs opinion about that is pretty irrelevant.

[ErinP]

Thanks for the opinions. Yeah, that's pretty much the way I was thinking. I tend to think almost EVERYONE gets entirely too many grains in their diet (part of why I've been low-carb for a couple of years) so to me it's not much of a shift to go from saying, "I don't eat grains" to "I can't eat grains."

And if I'm not official, so be it.

[Kate79]

I think you've got the right attitude, Erin. The only reason to try for an 'official' diagnosis is if you'd get some benefit from it (which you won't - it's not like there's drugs for celiacs!) or if you think you'll cheat without it. I went gluten free, as suggested by my doc and nutritionist, before being fully diagnosed - blood test, but no endoscopy. The proof was really in how much better I felt - and any time I happen to get a bit of contamination it's re-confirmed. I've thought about doing the gluten challenge for the endoscopy, but since even a little cross contamination wipes me out for days so I really don't want to know what eating bread for three months would do to me. I think you've already got your answer