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Celiac Symptoms And Testing

claraZ

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claraZ Newbie
claraZ
Posted

I have had strange health issues for the last 4 years. Unexplained rashes, food reactions (sometimes I react to everything that I eat- my lips get a rash and swell up and my eyes puff up as well….but then it goes away and I can never figure out what triggered it.  I'm always full of anxiety- I feel like I can barely breathe…so I can't sleep at night because I feel like my heart is racing. Apart from this I also have typical celiac gastro intestinal stomach symptoms and recently I find that my mind is just going crazy and I can't focus on anything. Does this even sound like celiac disease?  My doctor gave me a requisition for the test a few years ago and I never did it.  He said he really didn't think I had it so I never did the test.

 

I have decided to get tested now but stopped eating gluten 13 days ago prior to making that decision. (and a couple times during this period i accidentally ate soy sauce and a salad dressing that contains gluten) but I was starting to feel so much better!!.. I really don't want to do a 4-12 week gluten challenge. I've decided to do the home test (Biocard) and if it is a positive I will see my family doctor for further testing.  My question is.. how long does gluten actually stay in the system? After 13 days (almost) gluten free is it necessary to do the challenge? Does anyone have experience or insight into the Biocard test? I am on day 3 of eating gluten again and I can't take the anxiety that i'm feeling from (i believe) eating gluten.

 

If anyone has any input regarding the home test or advice on whether my symptoms sound celiac induced I would greatly appreciate it:)

 

Thanks

 

 

 

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BlessedMommy Rising Star
BlessedMommy
Posted

If you've only been off gluten for just 13 days, I'm not sure that you would need to eat it for a full 3 months in order to get DX'ed. It seems like the antibodies wouldn't go back to normal that quickly, especially since you still got a little gluten during that 13 days.

 

But hopefully someone more knowledgeable than me will chime in.

 

I will say, right now, I am not formally DX'ed and I'll be the first person to say, if you possibly can get a DX, do it now! It makes life easier for you, in terms of people taking you seriously and also gives you information on how to proceed with your kids, if you have any.

Fenrir Community Regular
Fenrir
Posted

I'm very suspicious of any home kit of any sort.

 

If at all possible get the blood tests done via your Drs. office.

 

It's hard to say how going gluten free for 13 days would affect the tests, but I think you'd probably want to go at least two weeks with eating about 2 pieces of bread a day. Maybe someone here has a better idea but I think it differs from person to person and you may or may not have stopped making antibodies already.

claraZ Newbie
claraZ
Posted
  • Author

If you've only been off gluten for just 13 days, I'm not sure that you would need to eat it for a full 3 months in order to get DX'ed. It seems like the antibodies wouldn't go back to normal that quickly, especially since you still got a little gluten during that 13 days.

 

But hopefully someone more knowledgeable than me will chime in.

 

I will say, right now, I am not formally DX'ed and I'll be the first person to say, if you possibly can get a DX, do it now! It makes life easier for you, in terms of people taking you seriously and also gives you information on how to proceed with your kids, if you have any.

Thank you for the response!

 

I would think that it takes a while to leave your system as well.. I just don't want a false negative.  i'm going to stick it out as long as I can before doing the test..

 

I was planning to go to my Dr. for DX eventually, I just wanted to do the home test for quick results!

claraZ Newbie
claraZ
Posted
  • Author

I'm very suspicious of any home kit of any sort.

 

If at all possible get the blood tests done via your Drs. office.

 

It's hard to say how going gluten free for 13 days would affect the tests, but I think you'd probably want to go at least two weeks with eating about 2 pieces of bread a day. Maybe someone here has a better idea but I think it differs from person to person and you may or may not have stopped making antibodies already.

Yes, I guess you never know if home tests are as accurate.   I'm in Canada and came across  this test that is approved by Health Canada and I believe its the only one available.  I still do plan to go to my own doctor as well.  I guess I am just a little anxious and wanted to know right away rather than waiting for an appointment and then waiting for the test results as well.

Fenrir Community Regular
Fenrir
Posted

Yes, I guess you never know if home tests are as accurate.   I'm in Canada and came across  this test that is approved by Health Canada and I believe its the only one available.  I still do plan to go to my own doctor as well.  I guess I am just a little anxious and wanted to know right away rather than waiting for an appointment and then waiting for the test results as well.

Yeah, I understand that. Waiting for labs to come back is hard, no doubt about that.

 

You could do the home test and see what happens, if it comes back positive it will make it a lot easier to get your Dr. to do the blood tests. Of course, that is assuming the kit isn't too expensive.

claraZ Newbie
claraZ
Posted
  • Author

Yeah, I understand that. Waiting for labs to come back is hard, no doubt about that.

 

You could do the home test and see what happens, if it comes back positive it will make it a lot easier to get your Dr. to do the blood tests. Of course, that is assuming the kit isn't too expensive.

I will probably do it that way…  The test is pretty cheap 50$ I believe the accuracy is 93% so I'm not sure if it might just be better to wait and do testing through doctor.

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nvsmom Community Regular
nvsmom
Posted

I did the Biocard test and had a very very weak positive after upping my gluten intake for two weeks. I took my test to the doctor and he ordered labs for me. I continued to eat gluten heavy and had the equivalent lab run test (tTG IgA) and had a positive that was well over 10X the normal.

 

For either test, I would advise adding gluten back into your diet for a couple of weeks before testing. For some people who would normally have a weak positive, a couple of weeks gluten-free may be enough for a false negative, for others a year isn't enough but there's no way to know which group you fall into.

 

Good luck with the testing.  :)

claraZ Newbie
claraZ
Posted
  • Author

I did the Biocard test and had a very very weak positive after upping my gluten intake for two weeks. I took my test to the doctor and he ordered labs for me. I continued to eat gluten heavy and had the equivalent lab run test (tTG IgA) and had a positive that was well over 10X the normal.

 

For either test, I would advise adding gluten back into your diet for a couple of weeks before testing. For some people who would normally have a weak positive, a couple of weeks gluten-free may be enough for a false negative, for others a year isn't enough but there's no way to know which group you fall into.

 

Good luck with the testing.  :)

Thank you for the input!

I'm going to hold off on the biocard test for a few weeks then, and in the meantime I will eat as much gluten as I can take. It's hard to know how much is enough! I'm on day 5 off adding it back to my diet and I don't feel the greatest:/

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