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What To Expect..

DuckyDiva

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DuckyDiva Newbie
DuckyDiva
Posted

Hi - Found this site through a google search..just a couple questions.

My older sister was unofficially diagnosed with celiac disease a little over a year ago. I say unofficially because she switched to the gluten-free diet after suffering from migraines and stomach problems for about 3-4 years but wouldn't go back into gluten to take the test and have an official diagnosis. Doctor agrees that it is most likely celiac disease in her case.

Now, comes me. A couple years ago, I would feel sick after everything I ate. It really didn't matter what it was (although I do eat a lot of pasta, bread, carbs, etc). It went away until a couple months ago. Again, I am sick after almost everything I eat. I do not vomit (haven't for about 6 years) but I feel VERY nauseated for a while. Sometimes, I have very bad stomach pains, gas, etc. I have very painful periods (I take naproxen 550mg for this) and have an unexplained sudden muscle spasm. I know celiac disease has 200+ symptoms..so I am just kind of throwing all my symptoms out there, hoping maybe some do match celiac disease. Is it sad that I kind of hope that I DO have celiac disease.. just so that I have an answer and a solution to my sickness and pain?!

My doctor is all for me getting the bloodwork done, I just need to wait until he is back from vacation. What do I expect from the bloodwork? How long do results usually take to come back? What will I be looking for on those results? Do my symptoms match some of the celiac disease ones? Is there a list that lists most of the symptoms?

I suppose I am lucky to have a family member that lives with me who follows a gluten-free diet.. because now if I have to, I already have a head start on what kind of things are gluten free, where to get gluten free bread .. and that it IS possible to follow a gluten-free diet and still be happy!

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Rachel--24 Collaborator
Rachel--24
Posted

Sorry...I'm not the one to answer your questions since I'm pretty new to this gluten-free stuff myself but here's a link to an older post that lists alot of symptoms associated with celiac disease Open Original Shared Link

KaitiUSA Enthusiast
KaitiUSA
Posted
Hi - Found this site through a google search..just a couple questions.

My older sister was unofficially diagnosed with celiac disease a little over a year ago. I say unofficially because she switched to the gluten-free diet after suffering from migraines and stomach problems for about 3-4 years but wouldn't go back into gluten to take the test and have an official diagnosis. Doctor agrees that it is most likely celiac disease in her case.

Now, comes me. A couple years ago, I would feel sick after everything I ate. It really didn't matter what it was (although I do eat a lot of pasta, bread, carbs, etc). It went away until a couple months ago. Again, I am sick after almost everything I eat. I do not vomit (haven't for about 6 years) but I feel VERY nauseated for a while. Sometimes, I have very bad stomach pains, gas, etc.  I have very painful periods (I take naproxen 550mg for this) and have an unexplained sudden muscle spasm.  I know celiac disease has 200+ symptoms..so I am just kind of throwing all my symptoms out there, hoping maybe some do match celiac disease. Is it sad that I kind of hope that I DO have celiac disease.. just so that I have an answer and a solution to my sickness and pain?!

My doctor is all for me getting the bloodwork done, I just need to wait until he is back from vacation. What do I expect from the bloodwork? How long do results usually take to come back? What will I be looking for on those results?  Do my symptoms match some of the celiac disease ones? Is there a list that lists most of the symptoms?

I suppose I am lucky to have a family member that lives with me who follows a gluten-free diet.. because now if I have to, I already have a head start on what kind of things are gluten free, where to get gluten free bread .. and that it IS possible to follow a gluten-free diet and still be happy!

<{POST_SNAPBACK}>

Your symptoms sound like mine. One of my main symptoms was nausea but I never had vomiting with it. I get where you are coming from I was happy to found out I had celiac just to get an answer.

The blood work should show the levels to see if there is indication of a problem in the body. Depends on the lab is when you will get the results back. You should have them within a week.

Your symptoms are ones that can be associated with celiac. There is no symptom you have to have or not have. Some people don't get any symptoms at all.

  • 2 weeks later...
DuckyDiva Newbie
DuckyDiva
Posted
  • Author

Well, I had the test on Friday, but the nurse did not know how long it would take for the results to be sent back. There was no timeframe listed so she said they might be ready by Monday. Small world, the nurse said her daughter was also on a gluten-free diet.

I'm anxious and nervous for the results. Nervous that I will have to say goodbye to my beloved gluten ... but anxious because maybe I will finally have an answer to why I feel so terrible.

DuckyDiva Newbie
DuckyDiva
Posted
  • Author

After reading more, I am wondering if my test will show anything! They only took one vial of blood, and the nurse said it was for anti-glidin (sp?) but from reading posts on the board.. I see there are other tests that go along with this.. Will I need to have more tests done for an accurate diagnosis?

SueC Explorer
SueC
Posted

One vial of blood is all they need to do ALL the tests. If your doc ordered the celiac panel you should have the complete set of tests. If not make sure they redo them!!!!

KaitiUSA Enthusiast
KaitiUSA
Posted
After reading more, I am wondering if my test will show anything! They only took one vial of blood, and the nurse said it was for anti-glidin (sp?) but from reading posts on the board.. I see there are other tests that go along with this.. Will I need to have more tests done for an accurate diagnosis?

<{POST_SNAPBACK}>

You need the full panel of the following tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

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DuckyDiva Newbie
DuckyDiva
Posted
  • Author
You need the full panel of the following tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

<{POST_SNAPBACK}>

Thanks for your quick response.

I am assuming since my doctor called today and said my levels were high and I need to go on a gluten-free diet..that I do not need to have the other three (my test was for the first two)

So now.. I am on my merry way of Gluten-Free-ness... rocky road in the beginning I hear..but then I will be smooth sailing.

celiac3270 Collaborator
celiac3270
Posted

Oooh...the first two happen to be by far the least reliable...whereas the 3rd and 4th one are the best. I don't think you can really get a conclusive diagnosis from the Anti-Gliadins...

So it comes down to this:

1) Retest with the full panel, or at least the bottom three--no need to repeat the anti-gliadins that you already had done.

2) You could just say to yourself "I think I have it," and my doctor, even if he may not be right, thinks I have it. Therefore, with his "stamp of certification," I am qualified for any of the benefits any other diagnosed celiac gets, etc.

3) Either way, it is unorthodox in diagnostic procedures, though it is done so often, to skip the endoscopy. The endoscopy is the gold standard for diagnosis and so, either way, you really should have that done before starting the diet.

If you go with #1, go gluten-free immediately, #2, wait for testing, and if you go with either of those choices + #3, stay on gluten.

-celiac3270

DuckyDiva Newbie
DuckyDiva
Posted
  • Author

Thank you for your response.

I could be wrong that those two tests were the ones performed. I know that they performed two blood tests, and I am assuming they are the first two.

In my case, I am going to go with #2.

After reading up on Celiac.. I have the symptoms and I have the gene. Celiac does run in my family. As you read, my sister also has celiac. I do not wish to stay on gluten any longer. I don't want to keep eating it so that I can be retested and likely receive a positive result from the tests. I am tired of being sick and if cutting gluten out of my diet is what will make me feel better, than I am happy that it is not something more serious.

My doctor is almost like a best friend, and I trust his diagnosis on Celiac. He is very familiar with celiac disease.

I am confused with your comment of "I am qualified for any of the benefits any other diagnosed celiac gets" What benefits? The only benefits of having celiac is that everyone else in the house won't eat your food. :P

Rachel--24 Collaborator
Rachel--24
Posted
The only benefits of having celiac is that everyone else in the house won't eat your food.  :P

<{POST_SNAPBACK}>

:lol::lol: I don't know about that ...once my friends tried my gluten-free cookies they wanted to keep munching on them as if they were any other cookies and not the $5 a package kind...which happen to be the ONLY ones I have. <_<

I think in the future I will be smart and not offer samples :)

DuckyDiva Newbie
DuckyDiva
Posted
  • Author
:lol:  :lol: I don't know about that ...once my friends tried my gluten-free cookies they wanted to keep munching on them as if they were any other cookies and not the $5 a package kind...which happen to be the ONLY ones I have.  <_<

I think in the future I will be smart and not offer samples  :)

<{POST_SNAPBACK}>

:lol: Which cookies did you have? I've only tried one gluten-free cookie before, and it was really .. not all that great.

The Chocolate Truffle Brownies from the Gluten-Free Pantry however.. are amazing.

Rachel--24 Collaborator
Rachel--24
Posted
:lol: Which cookies did you have? I've only tried one gluten-free cookie before, and it was really .. not all that great.

The Chocolate Truffle Brownies from the Gluten-Free Pantry however.. are amazing.

<{POST_SNAPBACK}>

They were Pamela's cookies...all of the flavors I've tried are really good. I also like Enjoy Life Chewy Choc. Chip....yummy. :D

DuckyDiva Newbie
DuckyDiva
Posted
  • Author
They were Pamela's cookies...all of the flavors I've tried are really good. I also like Enjoy Life Chewy Choc. Chip....yummy.  :D

<{POST_SNAPBACK}>

Ooh.. I will definitely have to look into getting some of those on my first gluten-free shopping spree. =) First on my list is Knickinick(sp?) gluten-free bread.

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    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

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      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
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      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate a some gluten or cross contamination. It just depends on the sensitivity of the gene. 
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      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those two sentences seem to contradict one another.
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