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AlexandraN

By AlexandraN
in Meet Up Room

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AlexandraN Newbie
AlexandraN
Posted

Hi everyone!

I've been gluten free for roughly a year and a half. In middle school, I had periodic, extremely painful, stomachaches. During my sophomore year of high school, I suffered from daily severe migraines. My best friend, who is also gluten-free, suggested I try going gluten free. Within 2 weeks, my headaches were gone. Now when I eat gluten, I get a stomach ache+GI stuff/sinus clogging/headache that lasts 2-3 days.

Miracles, right?

I also went off of most dairy. I can tolerate high fat stuff like butter and heavy cream. I'm also allergic to soy (traditional allergic reaction to tofu, soy flour, soy protein, etc), which has been diagnosed. My allergist at the local children's specialty hospital does not believe I am truly celiac, because I don't present traditional symptoms. She ran a blood test on me, but I had not been eating gluten intentionally for a year and a half by that point, so I wasn't surprised at all when the test turned up negative.

I have not been diagnosed with celiac/gluten intolerance. I'm seeking the best and most efficient way to get a diagnosis of some kind. As I'm going off to college next year, it'll be easier to confront their dining services with a concrete diagnosis (or if that fails, doctor's notes or something) so that I can have a reasonable chance of eating next year. What would you guys recommend? Should I get tested for other allergies? (the same allergist refused to do a food prick test).

Thanks!

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lemontree1 Rookie
lemontree1
Posted

2 things come to mind that you can test for. One would be the prick test and the other would be a blood allergy test.

Maybe you can find anther doctor that will diagnose you just by your symptoms? Even a diagnosis of gluten intolerance should help.

lemontree1 Rookie
lemontree1
Posted

To add-- You can have an allergy to wheat and not be celiac, and you can be celiac and not have an allergy to wheat. You could also be gluten intolerant and neither celiac nor an allergy to wheat, and it would not show up on a blood test.

So-- even if you did the allergy tests, they could still be negative, even though you have a problem with wheat.

When all is said and done, even if all tests are negative, YOU know you have a problem with it. Though a diagnosis may make your life easier in some respects, it is always up to you to be true to yourself and take care of yourself.

  • 4 weeks later...
gfpirate Rookie
gfpirate
Posted

The symptoms of Celiac have a such a far range... it's not always stomach or intestinal issues. Headaches (migraines), neuropathy, muscle/joint weakness, etc, etc; are all symptoms.

The only downside of getting a diagnosis is that you have to go back to gluten for a few weeks. I would talk to a doctor about this first, of course.

It sounds like you very well could have a gluten problem... it's amazing what a wide range of symptoms it can cause!

Lisa Mentor
Lisa
Posted

Hi and Welcome!

I'm not a teen, but I will share my thoughts. ;)

A positive dietary response can be diagnostic as well as other tests. Can you discuss this with your doctor, who should be well informed of your recovery while on the diet. Other than that, there is no other means to diagnose without returning to a full gluten diet, and that doesn't seem like a healthy option.

As you may know, the Students with Disability Act, will help ensure that your college can meet your dietary needs.

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