i want Celiac testing but don't want to stop gluten-free eating now

[Gma of 3]

I recently became aware that I have been Gluten Intolerant.  I began immediately eating gluten-free even though it's a large learning curve, and I fail often to eliminate gluten from my diet.  This results in symptoms such as swelling of the belly, joint pain, anxiety,  almost within 30 min or less, then other times I will have Migraines, foot pain, diarrhea gas and bloating. Recently, The symptoms are more pronounced and come much faster than when I first found out I was intolerant.

 The bottom line,  I would like a diagnosis whether or not I have the disease. If I have only been eating gluten-free since May (and that with Several mistakes) does anyone think I would have an accurate result either by blood tests or Endoscopy?

[tessa25]

If your results say you have celiac, that would be accurate. If they say you don't have celiac that would not be accurate because you have to be eating gluten daily for 3 months before doing the blood test.

[Jmg]

As Tessa says, you run the risk of a false negative. Most doctors will insist you do a full challenge to ensure an accurate result.

It could be worth it however as you're struggling to stay 'honest' on the diet at the moment. A diagnosis may help you with that? This is besides the other benefits, certainty, easier to get follow up checks on nutrient deficiencies, easier to get close family members to check their own health etc.  If you test negative at the end you can still go gluten free.  Not everyone with a gluten problem will test positive for celiac, I didn't, but the consultant told me to go gluten free based on the symptoms he observed during my challenge. 

If you choose to pursue a diagnosis you will get plenty of support here.

 

[Gma of 3]

Thanks so much for your answers and support!

[TexasJen]

I have celiac. One of my best friends has NCGS. We see each other often and share the same group of friends. But, my celiac limits my diet substantially where as he doesn't worry about cross contamination.  He enjoys many meals within our group that I do not share in because of it. My point is only that sometimes it's nice to not have to worry about the long term consequences of CC. So, it may be worth it to pursue the diagnosis so that you know has strict you have to be.

[Victoria1234]

16 hours ago, TexasJen said:

I have celiac. One of my best friends has NCGS. We see each other often and share the same group of friends. But, my celiac limits my diet substantially where as he doesn't worry about cross contamination.  He enjoys many meals within our group that I do not share in because of it. My point is only that sometimes it's nice to not have to worry about the long term consequences of CC. So, it may be worth it to pursue the diagnosis so that you know has strict you have to be.

Does cc cause him any symptoms? Or are they so mild they don't bother him too much?

[TexasJen]

8 hours ago, Victoria1234 said:

Does cc cause him any symptoms? Or are they so mild they don't bother him too much?

His symptoms are quite mild for cross contamination. Moderate for things like accidentally eating a bite of something containing gluten- like pasta, bread etc

[Jmg]

9 hours ago, TexasJen said:

His symptoms are quite mild for cross contamination. Moderate for things like accidentally eating a bite of something containing gluten- like pasta, bread etc

I know some with NCGS are more relaxed about their diets like Jen's friend above.  If you test negative for celiac and find that you can do this then you will doubtless find the diet a lot easier and various social situations more accessible. 

Sadly I don't find that works for me, I wish it did! I seem to be quite sensitive to small amounts of cc and the neurological symptoms in particular are so unpleasant when I do slip up that I am very strict on the diet. Each to their own.

NCGS is still not fully understood and doesn't seem to have the same proven links to serious complications that celiac does. However one of the best sources of info I've found on this, Professor Umberto Volta, says that in his experience most NCGS patients should be strict in adhering to the gluten-free diet:

Quote

"Another important point is that of the small amounts of gluten for these patients
represented by contamination in consuming food outside the home, probably, the
majority of these patients do not tolerate small amounts of gluten presented by
contamination. So, the situation is similar to those with celiac disease, probably not for
the possibility of complications or major complications. But, because small amounts of
gluten are able to cause the reappearance of symptoms."

 

[Chrismark]

Initially, I showed symptoms of Celiac Disease, and I immediately went on a Gluten-free diet.  Several doctors told me that in order to have accurate Gluten-free testing, I would have to return to eating gluten prior to the tests.  This is something that I wouldn't do.  I was then tested twice for Celiac and was told that I did not have Celiac Disease.  A doctor who was researching Celiac Disease told me not to rely on the test, since it could be inaccurate.  He told me that the only accurate thing that I could do was to go 100% gluten-free for around one month, and if  my symptoms  showed improvement during this time, then I probably had Celiac.  This is how they originally tested for Celiac Disease, and this worked for me.

[Norma Barton-Barajas]

On 7/14/2017 at 1:35 PM, Gma of 3 said:

I recently became aware that I have been Gluten Intolerant.  I began immediately eating gluten-free even though it's a large learning curve, and I fail often to eliminate gluten from my diet.  This results in symptoms such as swelling of the belly, joint pain, anxiety,  almost within 30 min or less, then other times I will have Migraines, foot pain, diarrhea gas and bloating. Recently, The symptoms are more pronounced and come much faster than when I first found out I was intolerant.

 The bottom line,  I would like a diagnosis whether or not I have the disease. If I have only been eating gluten-free since May (and that with Several mistakes) does anyone think I would have an accurate result either by blood tests or Endoscopy?

I was told by my endocrinologist to not get on the gluten free diet after he ordered blood work to be tested for Celiac Disease. The my results came back  positive and he then referred me to an gastroenterologist to do an endoscopy and colonoscopy procedure. He told me that if those procedures come out positive that I would have to follow a gluten free diet. Sure enough the gasterinterologist came back with positive results for Celiac Disease. The funny thing was that he asked me if I was from European decent. I then told him my paternal grandfather was Spanish with blond curly hair and blue eyes, but other than that my parent's, grandparent's, and I are of Mexican decent. I asked him why he was asking that question because I thought it was kind of odd, he the said it was a European disease. So I then asked him if that was the case why didn't I get the colored eyes, lighter skin, and height from the European. Instead I get a disease. He then told me that if I don't follow this gluten free diet I would end up getting cancer. I have gotten gum disease since, sevear acne, and to top it all off osteopenia. I really suggest for you to follow this diet if you get diagnosed with it. Good luck to you!!! I hope your results come out negative. ??

[Gma of 3]

23 hours ago, Norma Barton-Barajas said:

I was told by my endocrinologist to not get on the gluten free diet after he ordered blood work to be tested for Celiac Disease. The my results came back  positive and he then referred me to an gastroenterologist to do an endoscopy and colonoscopy procedure. He told me that if those procedures come out positive that I would have to follow a gluten free diet. Sure enough the gasterinterologist came back with positive results for Celiac Disease. The funny thing was that he asked me if I was from European decent. I then told him my paternal grandfather was Spanish with blond curly hair and blue eyes, but other than that my parent's, grandparent's, and I are of Mexican decent. I asked him why he was asking that question because I thought it was kind of odd, he the said it was a European disease. So I then asked him if that was the case why didn't I get the colored eyes, lighter skin, and height from the European. Instead I get a disease. He then told me that if I don't follow this gluten free diet I would end up getting cancer. I have gotten gum disease since, sevear acne, and to top it all off osteopenia. I really suggest for you to follow this diet if you get diagnosed with it. Good luck to you!!! I hope your results come out negative. ??

Oh wow thank you for this information.  There is just so much to learn that I wouldn't have guessed it could be so complicated. You mentioned gum disease...my teeth have always been bad I really do wonder how this will affect them. I wish you the best in following your diet. Thank you for your support and well wishes.

[Gma of 3]

***UPDATE*** 7/17/2017  I went into the doctor and was told my insurance wouldn't pay for the blood test unless I was anemic (I am not) or I have a family history. I was also told that without insurance this test is expensive 300 or 400 dollars.  At this point I think I will just do my best to just not eat any gluten and pray my health won't suffer.  The end result is the same...no eating gluten.  But I can't help feeling disapointed

[ravenwoodglass]

36 minutes ago, Gma of 3 said:

***UPDATE*** 7/17/2017  I went into the doctor and was told my insurance wouldn't pay for the blood test unless I was anemic (I am not) or I have a family history. I was also told that without insurance this test is expensive 300 or 400 dollars.  At this point I think I will just do my best to just not eat any gluten and pray my health won't suffer.  The end result is the same...no eating gluten.  But I can't help feeling disapointed

Be strict if you are going to do it. It sounds like your body is clearly reacting to gluten so don't take any chances. Take the same precautions you would if you were officially diagnosed at least for a few months.  You want to give your body a chance to heal and it sounds like your reactions to accidental gluten are pretty strong so don't risk any CC setting you back from healing.

[cyclinglady]

Did you check with your insurance company?  You have many symptoms that can be attributed to it.  Some patients have NO symptoms and yet have intestinal damage.  Anemia is common but not all celiacs have it or GI issues.   The screening TTG test is around $75.  

Family history?  I had none. I also did not have GI issues.   

I am sorry that your doctor is not supportive.  

[Jmg]

On 7/17/2017 at 9:33 PM, Gma of 3 said:

The end result is the same...no eating gluten.  But I can't help feeling disapointed

I understand, I did go through testing and biopsy but the result was negative and given the gluten challenge was very unpleasant it was almost worse to be told it was negative than to have an explanatory diagnosis. It did however provide me with something more important, my own proof that gluten was a problem for me. I live my life now as if the diagnosis was positive and the lack of the diagnosis doesn't bother me too much, even if I sometimes wonder if they maybe looked in the wrong place!

Ultimately they can't do anything for you other than tell you to avoid gluten. So maybe leave the whole idea of testing now and just focus on being gluten-free and seeing where that takes you. Keeping a food diary is a good idea at first so if you do slip up you can identify what it was and remove it from your store cupboard.

Best of luck!

 

[Gma of 3]

On ‎7‎/‎18‎/‎2017 at 3:48 PM, Jmg said:

I understand, I did go through testing and biopsy but the result was negative and given the gluten challenge was very unpleasant it was almost worse to be told it was negative than to have an explanatory diagnosis. It did however provide me with something more important, my own proof that gluten was a problem for me. I live my life now as if the diagnosis was positive and the lack of the diagnosis doesn't bother me too much, even if I sometimes wonder if they maybe looked in the wrong place!

Ultimately they can't do anything for you other than tell you to avoid gluten. So maybe leave the whole idea of testing now and just focus on being gluten-free and seeing where that takes you. Keeping a food diary is a good idea at first so if you do slip up you can identify what it was and remove it from your store cupboard.

Best of luck!

 

Well, thank you for replying. Yes, I would also like to know and have a certain "validation" but I will go on to eat gluten free.  Thank you for the idea of keeping a food diary.  I was keeping one for weight loss, but I guess my primary focus will be gluten-free as well.  I'm sorry you had to eat gluten just to find out both tests were negative. That was disappointing, I can only imagine. 

[Jmg]

13 minutes ago, Gma of 3 said:

I'm sorry you had to eat gluten just to find out both tests were negative. That was disappointing, I can only imagine. 

It was difficult yes, but on reflection worthwhile as the gluten challenge confirmed that a wide spectrum of symptoms were all either fully or mostly resolved on a gluten free diet and resuming it saw them reappear. Once you know this it doesn't really matter what blood tests say, you don't want eat gluten ever again, or at least I did't.

It sounds like you're happy to go gluten free, you may want to take a look here for some tips: 

Best of luck, hope you find as much support here as I have

 

[Dawn-Ambrose]

No

I think for a positive test you need to be eating gluten for a certain period of time otherwise the test can produce erronous results.

 

1 If you have been on a gluten free diet the test can produce a false negative

2 After a period of time of being gluten free your gut can heal itself (in many cases...although this might take time) and so any test taken (blood test or biopsy) will potentially produce a false negative.

3 It is possibe to test whether or not you have the genes for celiac. If you have a family history, your symptoms are alleviated by removing gluten and you have the right genes for celiac, to my mind its very likely even if you dont test postive officially (science can get it wrong sometimes for various reasons).