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


Abbizzy

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Abbizzy Newbie

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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skigirlchar Newbie

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.

Abbizzy Newbie

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.

:-(

Skylark Collaborator

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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    • trents
      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
    • ThomasA55
      Does my iron loss sound like celiac to you?
    • trents
      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
    • ThomasA55
    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
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