Can I claim CD even if my test comes back as normal?

[blissfulteadaze]

I'm getting the blood panel done today. I KNOW that there is something wrong with gluten/wheat and I. When I go to my/a physician in the future, it would seriously simplify things if I can just say that I'm celiac. But do I need to have an "official" diagnosis? Or could I just claim NCGS? BTW here are all of my symptoms for anyone else out there who is curious:

Mucous in stools-sometimes
Foul stools
More mucous production in general
Headache
Depression
Irritability
“Brain fog”/memory loss/hard to concentrate
Weight gain
Trace edema
“Rotten egg burps”/stomach pain LUQ
Alternating constipation and diarrhea
Fatigue
Nausea
Minor skin breakouts
Increased HR/BP
Muscle spasms (upper, lower eyelids)
Increased incidence of cavities (dental enamel)
White flecks on fingernails
Hair loss/breakage
Cold hands
Poor bone healing (broken collarbone didn't heal for a YEAR before I had to have surgery... I hope it heals after I go back to being GF)

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"In order to change we must be sick and tired of being sick and tired" ~Anon

~University of Michigan: BSN Nursing student

[celiacmaine-iac]

You certainly could do that, but I don't think it would be the wisest thing. Most new doctors try to get medical records from prior physicians to have a better picture of a pt's ongoing medical hx. If your existing, or a new doc found out you were being untruthful it might really damage your crediblity with them in the future, which could lead to delays in dx for other things. I would just be upfront, and say that you've discovered from trial and error that gluten makes you feel ill. There is no law saying you have to eat gluten. You could even show them your symptom list, and show them which symptoms improved after going GF.

edited to add: you are getting the CD panel done today? It may show positive results, in which case it would be a non-issue. Are you currently eating gluten?
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Steph

[blissfulteadaze]

I am to both questions. Last week was when it really came together for me after I went and got my kidney/thyroid tested. They came back normal, but I knew something was wrong so I did some more exploring, coupled with some memory retrieval especially r/t the most severe reaction of my life post-Thanksgiving Tofurky (which is a thing made entirely out of wheat gluten It was not pretty...) I cut out anything with gluten/wheat in it for a few days after realizing it and felt like I did this summer (i.e. wonderful) when I was hardly eating any gluten/grains at all (I guess I had a subconscious aversion that I should have listened to more closely). Since coming back to school and moving into a vegetarian co-op where I am surrounded by delicious granolas and artisan breads, I've never felt worse in my life.
_________________
"In order to change we must be sick and tired of being sick and tired" ~Anon

~University of Michigan: BSN Nursing student

[celiacmaine-iac]

Good luck!
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Steph

[cruelshoes]

Most doctors will not make a diagnosis of celiac without positive bloodwork and a positive biopsy. However, I think a lot of doctors are now acknowledging that many more people have a problem with gluten than those with bloodwork and villi damage, though.

Every time I go to a new doctor, I mention that I have celiac. They always ask me "how were you diagnosed?" I don't think it really matters what the doctor writes on the chart, NCGS can have lots of bad symptoms too. If a doctor wants to give you grief about stating that you are intolerant to gluten (and not celiac), they might be behind the times in a lot of things.

I hope your blood tests give you the results you need.
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-Colleen

Where are we going, and what am I doing in this handcart?