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Abbizzy

Impatiently Waiting For My Blood Tests To Come Back...

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My name is Ann, I'm 42 and I'm very impatiently waiting for my tests to come back. I'm 99% sure that I have Celiacs, if I don't then I have some type of issue with wheat/gluten/somethinginthatneighborhood and will need to go gluten free.

I've had a myriad of symptoms crop up over the past few years. Bowel issues that sent me running to the dr for a colonoscopy, roseacea, high anxiety and rage (which reaches it's peak after eating pasta), a cough that persists, brain fog and a lovely geographic tongue. I self dx'd online but thought, "I don't have celiacs, that's totally far fetched" then my SIL who is a dietician and I were talking and she suggested I get tested because of my IBS and anemia. I dragged my feet for 2 years but would go gluten free for weeks at a time and ALL my mystery symptoms would vanish. I'd eat gluten and they'd all come rushing back. So I just went to my drs office and saw my fave physician's assistant who sent me in for a blood work up for seasonal allergies; food allergies; iron panel; celiacs test; and a cbc. She said it sounds like Celiacs or a true wheat allergy. I should have the results tomorrow, eek! I loaded up on gluten before the blood test. I'm eating my fave things because I know that once it comes back I'll be done with them until someone comes up with a cure for this. My big fear is that once i have a confirmed dx, I'll be forced to take my 9 yo in who I'm pretty sure has it as well. Changing my diet will be easy, changing hers will be harder (thinking birthday parties, school stuff, etc...). I was happy to see at swim team this year that two teens brought their own pasta to the pasta dinner as both had gluten issues but neither had celiacs and it wasn't a big deal at all.

A

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Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


in regards to your daughter - once she understands why she is eating a special diet things will get easier. in schools it is VERY common for kids with dietary issues to have their own foods these days. teachers in the know will let allergy/diabetes/celiac/other special diet families know in advance of parties so the kids can bring in their own treat for the day - and often will keep a stash for those kids in case of a surprise birthday or other event that pops up unannounced. some schools even have _______ free zones in the cafeterias so kids who have to be careful of cross contamination, while seated separate from their peers, are seated with individuals w/ similar issues.

no matter what, you have support.


-severe soy, wheat & yeast allergies 2006

-penicillin allergy 2008

-multiple other food & environmental allergies starting 1982

-non-iron deficient anemia - life long

-migraines 3/07

-negative celiac blood testing 10/09 & upper endoscopy biopsy 3/10

-negative GERD observation during upper endoscopy 3/10

-positive hereditary hiatial hernia during upper endoscopy 3/10

+continually working on gluten-free/CF/SF related to allergies & celiac like symptoms

+continually working on elimination of caffine, chocolate, & spicy foods related to hernia & heartburn

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My blood test was negative! And I'm not allergic to wheat. I was SURE one of the tests would come back positive. I KNOW it had to be a false negative. IBS, floating stool, mucus in my stool, geographic tongue, roseacea and high anxiety/rage within 10 mintues of ingesting pasta (I swear that has something related to semolina...). I'm sitting here saying, W.T.F! I can't actually talk to my PA to discuss this so I made an appointment for next week. I can take myself off gluten and know I'll feel better but I would really like to know definitively what I have. There was also no positive result for seasonal allergies yet the last two years I ended up in the ER mid august with a low O2 reading and barely able to breathe. yet it says I have NO seasonal allergies. Ugh, ugh, ugh, ugh, ugh.

:-(

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The only way to definitively diagnose non-celiac gluten sensitivity is to try the diet. There is simply not enough scientific information out there about gluten sensitivity for a real diagnostic test to be developed. My advice to you is to listen to your body, and stop eating food you know makes you sick (gluten).

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