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AHopewell

Benefits To "official" Diagnosis

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My journey was totally accidental. A friend and I decided to try the Paleo way of eating at the suggestion of a personal trainer. Lo and behold, I felt like a million bucks and shed the symptoms that had plagued me for years. I started considering the family history on my mom's side of the family along with my symptoms. What a revelation! Many maternal relatives of my mother had contended with and ultimately died from a variety of auto-immune diseases. My mother is celiac, but denies it. Her mother died from complications of scleroderma. I have a cousin who is diagnosed celiac. So without a doubt, it is running on this side of the family. At any rate, here I am. My question to those who have been diagnosed via lab tests, is there a real benefit to "official" diagnosis knowing what I already do?

Amy

gluten-free since 2/20/11

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Having a diagnosis can be useful in certain situations where you must depend on others. Having the document ensures that schools and the like must take your dietary needs seriously, and you can demand reasonable accommodations under the Americans with Disabilities Act (ADA).

Having a diagnosis can, however, lead to difficulties in obtaining insurance. It will also prevent you from joining the US military.

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A few more " benefits":

If you have kids, most insurance & doctors are good with Celiac testing as its genetic because the mom or dad has Celiac.

Gives your doc & insurance company a reason to approve various tests that go with Celiac like Thyroid, vitamin deficiencies, bone scans, etc.

Gives you a doctors note to use when bringing food into places that don't normally allow that

Sometimes places like a hospital, will try to give you gluten-free food with a diagnosis.

Some docs consider an unofficial Celiac to have a mental or eating disorder. Looks like some consider a diagnoses Celiac to have a mantel disorder, too. :(

You have to decide if any of these things are worth 3 or more months on a diet heavy with gluten.

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For me, it ensures compliance. I did not have many GI symptoms and it has taken a LONG LONG time for other things to resolve themselves, so I wouldn't believe it if I didn't have the official diagnosis.

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Can I answer from the other side? I'm pretty sure I am celiac but like you I figured it out on my own. I was never tested, except in childhood when I was already off wheat becasue it made my stomach hurt. (Celiac enough for ya?) I was told I didn't have celiac and my problems were "wheat allergy" even though I barely reacted on skin tests. I stick to the diet just fine. Most of my childhood comfort foods are naturally gluten-free anyway since I was off wheat. B) Two different doctors have told me not to gluten challenge becasue it will make me ill and it's too hard to get a positive celiac test.

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