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New To Forum, Testing Questions- Have I Eaten Enough To Get Accurate Result?


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6 replies to this topic

#1 Pnballwizz

 
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Posted 11 January 2014 - 01:58 PM

Hi all. For the last couple of years I have been experiencing some symptoms that make me think I could have issues with gluten. I finally have a dr. Who is taking it seriously and had ordered me tests. I just want to make sure I have been eating enough gluten to get an accurate result from blood test.

I tried going gluten free for 5 weeks from mid-sept to mid-oct 2013. Most of my symptoms got better or went away. I started eating gluten again and started feeling bad, so I stopped Jan 1, 2014. Now that I have the test order, I started eating it again on 1/8. Many of my symptoms have started rearing their ugly heads: headache, ab. Pain, brain fog, fatigue, bloating. Just wondering if there is likely enough gluten in my system at this point. Any thoughts would be helpful. My dr. Suggested getting tested when I felt symptoms return, but not sure how long I need to suffer through them in order to get a good test reading. Thank you!
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#2 nvsmom

 
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Posted 11 January 2014 - 02:49 PM

If you were eating gluten from October to Jan 1st, stopped for a week, and have now resumed, I would guess that you have enough gluten exposure if your test is in another week. It's just a guess though. If you want to be more sure of the test validity, you should probably put off your blood test until the 22nd or later. 

 

Some people's antibody levels fall quickly, and it can vary between tests too.  If possible get the full panel of tests so your testing will be as accurate as possible. These are the tests you can get done:

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG (this one tends to fall first after being gluten-free a for time)
  • EMA IgA (detects more advanced disease)
  • total serum IgA (control test)
  • AGA IgA and AGA IgG (older and less reliable tests)

Good luck! Enjoy an oreo and a beer for me while you are waiting to test.  LOL


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#3 GottaSki

 
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Posted 11 January 2014 - 02:50 PM

Tough call.  When you were back on gluten from Mid October - January 1 did you eat gluten every day?  If so, the 8 days you were off gluten recently may not impact the results - unfortunately there is no way to know.

 

The best thing to do is eat at least one slice of glutenous bread per day for at least six weeks - if you can manage the symptoms that long.

 

Do you know which tests the doctor has ordered?  I would make sure that he/she has ordered a complete celiac antibody panel...as it will give the best chance of determining if gluten is an issue.  Often doctors only order one or two screening tests.

 

Total Serum IgA

tTG - IgA

tTG - IgG

EMA-IgA

DGP - IgA

DGP - IgG

 

Hang in there :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 Pnballwizz

 
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Posted 11 January 2014 - 02:54 PM

Tough call.  When you were back on gluten from Mid October - January 1 did you eat gluten every day?  If so, the 8 days you were off gluten recently may not impact the results - unfortunately there is no way to know.
 
The best thing to do is eat at least one slice of glutenous bread per day for at least six weeks - if you can manage the symptoms that long.
 
Do you know which tests the doctor has ordered?  I would make sure that he/she has ordered a complete celiac antibody panel...as it will give the best chance of determining if gluten is an issue.  Often doctors only order one or two screening tests.
 
Total Serum IgA
tTG - IgA
tTG - IgG
EMA-IgA
DGP - IgA
DGP - IgG
 
Hang in there :)



Thank you. It's the tTG IgA and IgG. Also b12 test and a holter monitor to see if eating gluten causes heart palps that I have been having.
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#5 Pnballwizz

 
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Posted 11 January 2014 - 02:57 PM

If you were eating gluten from October to Jan 1st, stopped for a week, and have now resumed, I would guess that you have enough gluten exposure if your test is in another week. It's just a guess though. If you want to be more sure of the test validity, you should probably put off your blood test until the 22nd or so. 
 
Some people's antibody levels fall quickly, and it can vary between tests too.  If possible get the full panel of tests so your testing will be as accurate as possible. These are the tests you can get done:

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG (this one tends to fall first after being gluten-free a for time)
  • EMA IgA (detects more advanced disease)
  • total serum IgA (control test)
  • AGA IgA and AGA IgG (older and less reliable tests)
Good luck! Enjoy an oreo and a beer for me while you are waiting to test.  LOL

Thank you. I wish I could say that an Oreo sounded good. I def was not eating gluten everyday from October to Jan 1, but did indulge a lot over the holidays.
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#6 GottaSki

 
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Posted 11 January 2014 - 03:09 PM

Thank you. It's the tTG IgA and IgG. Also b12 test and a holter monitor to see if eating gluten causes heart palps that I have been having.

 

It might be a good idea to call your doctor's office and ask if it is possible to add these on:

 

DGP - both IgA and IgG (Deamidated Gliadin Peptides)

Total Serum IgA 

 

Especially because you know you have an issue with gluten...you don't want to have to go through another challenge!!!

 

Just saw your note that you weren't eating gluten every day from October - January.  This would be reason to wait longer for your blood draw.  Eating large quantity for a short period is not as good as ingesting one to two slices of bread per day consistently for a longer period.

 

Additionally, once the blood tests are done you may wish to have an endoscopy -- you should not remove gluten before this decision has been made or you'll be looking at yet another challenge.

 

Sorry...the diagnostic process can be very frustrating and gets even more frustrating once someone has removed or partially removed gluten for a time.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#7 simplemom

 
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Posted 13 January 2014 - 10:59 AM

I am brand new here and had my son tested for celiac a couple of weeks ago. My husband has a mild wheat allergy, so for years we haven't eaten many wheat. Loaded meals. I've always given the kids a whole wheat sandwich or toast a few times/week, we eat a meal with regular wheat about once/week, and my son eats regular white bread and cake once in a while at a restaurant or grandma's house. Never had a problem. I knew you had to eat wheat for a celiac test, but didn't know it had to be daily in more than small amounts. So when the MD ordered the test, I didn't mention a low wheat diet in the home because I thought he would have asked how much my son ate if it would hinder the test. Thankfully my ston's test was negative, but his iron was a little low (even though we are health nuts who eat lots of high iron foods and little junk). I later find out from my friend with celiac that she had to eat a lot of gluten before she tested positive. So I emailed my doc, confessing my ignorance about celiac testing (even though he shouldn't assume every kid in his office eats lots of wheat everyday....I LOVE the doctor otherwise). The doctor emailed me back quickly asking me to put my son on a "normal" wheat diet. (Guess it's abnormal to alternate grains) . He is going to repeat the full celiac panel, in a month. Meanwhile, for the 1st time in my son's life he is reacting to wheat with high energy, exactly the way he acts when he has to take steroids. I have an email out to the doctor about that now. So in answer to your question, I would think you had to eat the typical Western diet amount of wheat (which I don't think is healthy with or without celiac) for a few weeks if at all possible. My son also had eaten more wheat the week of Christmas, which was another reason I didn't think the gluten levels would be too low for an accurate test......his possible false negative test was a week after Christmas.
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