Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Celiac Symptoms And Testing

claraZ

Recommended Posts

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

 

 

 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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:/

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    2. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    4. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
    5. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,082
    • Most Online (within 30 mins)
      7,748
    MelanieR
    Newest Member
    MelanieR
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.