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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

What To Expect..
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14 posts in this topic

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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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 http://www.glutenfreeforum.com/index.php?showtopic=16&st=15

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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.

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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.

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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?

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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!!!!

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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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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.

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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

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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

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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 :)

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: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.

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: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

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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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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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