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nvsmom

Member Since 12 Jun 2012
Online Last Active Today, 02:28 PM
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#940349 How Often To Retest Family Members?

Posted by on 13 February 2015 - 04:01 PM

I agree, first degree relatives should be tested every two years (for life) or as soon as symptoms are presented.  Babies and toddlers often don't test as reliably accurate as adults so make sure all the tests are run, especially  the deaminated gliadin peptides (DGP IgA and DGP IgG).  

 

If symptoms are present, but the kids test negative, it is possible that they have sero-negative celiac disease and should go gluten-free... Just something to consider.

 

Best wishes with the testing.


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#940194 What Thyroid Meds Do You Take?

Posted by on 10 February 2015 - 03:27 PM

I too had to doctor shop to find someone who would prescribe NDT to me. My GP told me his "scientic mind" would not allow him to prescribe NDT.  LOL   :huh:  :rolleyes:  I can laugh now but at the time I was so frustrated with him that I was in tears.

 

Getting the thyroid right is hard.  Hang in there.


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#939976 Gluten-Free Affecting Blood Sugar? Or Vitamin Deficient?

Posted by on 07 February 2015 - 03:50 PM

I agree that your meals are high in starches (which gets changed to sugar in the body) and that will cause your blood sugar to go up and down dramatically. It sounds like hypoglycemia to me too, perhaps being affected by low blood pressure too.  Perhaps switch to whole or 2% milk, get yogurt at 9% fat instead of 1-2%, and try adding more meats or nuts so you have more fats and proteins at every meal.  That should help your blood sugar stay more stable.... But I'm not a doctor, and am just guessing.

 

Perhaps try tracking your macros (protein, fat and carbs) along with calories.  A site like fitness pal can help with that.


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#939883 Advice Please - False Positive Blood Tests?

Posted by on 06 February 2015 - 11:30 AM

A low positive tTG IgA (not double or quadruple the normal upper limits like yours was) can be caused by thyroiditis, diabetes, liver disease, crohn's, colitis, or a serious infection.  Those causes only happen in about 5% of all positive results.  A false positive tTG IgA is not common; a positive result is caused by celiac disease 95% of the time.

 

The EMA IgA only gives a positive result for celiac disease.  I have never, in three years of researching celiac disease and being on this board, seen a false positive EMA IgA test.  They are specific to celiac disease 98-100% of the time.  Also, the EMA IgA tends to detect more advanced disease. After the tTG IgA has started to create problems, the EMA IgA appears and attempts to wipe out the upper layer of the intestines with the intention of killing off whatever is causing the problem.  

 

A positive EMA IgA in addition to a positive tTG IgA is celiac disease - that is how I was diagnosed.

 

See this report (pages 8-12) on the details of testing: http://www.worldgast..._long_FINAL.pdf

 

The endoscopic biopsy has a sensitivity that can be as low as 80%.  That means it can miss up to 20% of celiacs, or 1 in 5.  I agree with the others that you are a celiac and the biopsy missed the damage, and because your small intestine has the surface area of a tennis court, I'm surprised it doesn't happen more often.

 

Also, those tests will not indicate non-celiac gluten sensitivity (NCGS).  The tTG and EMA tests are NEVER both positive in someone with NCGS.  Ever. It is barely possible that someone with NCGS has diabetes, thyroiditis, or some other problem that would cause a slightly elevated tTG IgA, but if it is accompanied by celiac disease symptoms then it's celiac disease.  As somone around here once said, if it looks like a duck and quacks like a duck....

 

Best wishes.


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#939183 Why Why Did I Do It>>?

Posted by on 27 January 2015 - 01:21 PM

LOL  GAH is the word!  ;)


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#939149 New To This Group

Posted by on 27 January 2015 - 08:48 AM

Welcome to the board.  :)

 

Like Cyclinglady said, make sure she keeps eating gluten until all celiac disease testing is done.  Those celiacs who are gluten-free will eventually produce false negative test results.

 

Ask for as many tests as you can get:

  • ttG IgA and tTG IgG - tissue transglutaminase is the most common test
  • DGP IgA and DGP IgG - deaminated gliadin peptides are newer tests that are often better at detecting celiac disease in young children or in early cases.
  • EMA IgA endomysial antibodies tend to become positive as the disease progresses
  • total serum IgA - a control tests to make sure one is not too low in IA to produce accurate celiac disease test results - 5% of celiacs are IgA deficient
  • AGA IgA and AGA IgG - older less reliable anti-gliadin tests that were replaced by the DGP tests
  • endoscopic biopsy - 6+ samples taken

 

If the tests all come back negative, you could always consider going gluten-free to see if she has non-celiac gluten sensitivity (NCGS). Those with NCGS have the same symptoms as those with celiac disease.  Give the diet a good 6 months if you can before judging the effectiveness. Don't go gluten-free until testing is done though.

 

Good luck.  I hope she feels better. 


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#938312 Literally Unable To Gluten Challenge

Posted by on 12 January 2015 - 10:16 AM

I agree that it is a really good idea to test your kids before going gluten-free, and retesting every few years if they are eating gluten.  

 

Hope you continue to fee better.


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#938158 To Test Or Not To Test!

Posted by on 10 January 2015 - 10:22 AM

Yes, the genetic tests just tell you if you are in the higher risk group for getting celiac disease, not if you have it.  Plus it is possible, although quite unusual and rare, to get celiac disease without the DQ2 or DQ8 genes.


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#938078 Newbie Clueless In Pain! Help!

Posted by on 08 January 2015 - 04:07 PM

Welcome to the board.  :)

 

Many, or even most, diseases seem to have symptoms that are on and off again,  Gall bladder problems and celiac disease are both that way.  It's like our body is trying to make it harder diagnose on purpose.  ;)  I don't know about very much about gall bladder issues (beyond that celiac disease can cause some of the problems) but I do agree that your symptoms could be celiac disease so you might as well get tested.  Keep eating gluten until you are tested and try to get the whole celiac disease panel run:

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG
  • EMA IGA
  • total serum IgA (control test)
  • AGA IgA and AGA IgG (older and less reliable tests)
  • endoscopic biopsy
  • dh biopsy (beside rash) - some with dermatitis herpetiformis will not test well in the blood tests

If the problem is caused by non-celiac gluten sensitivity (NCGS) these tests will be negative - the only way to diagnose NCGS is by a positive response to the gluten-free diet (over many months).

 

Good luck.  I hope you find answers soon. It's tough not being at your best when you have youngsters relying on you. Hang in there.


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#937780 Do You Ever Break Down And Eat Gluten Every Once In A While?

Posted by on 03 January 2015 - 02:11 PM

I was at someone's house over the holidays and they were telling me how they had had a celiac over for Xmas dinner and he ate the stuffing and turkey because "it looked too good to pass up.  Now thanks to him our friends don't take the diet as seriously - I felt the mental eye rolls when I wouldn't eat the rice crackers that were mixed in with the regular crackers. 

 

I know people don't think of it at the time, but cheating really does make the (strict) gluten-free into the joke the media portrays it as.


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#937494 Help With My Test Results Please.

Posted by on 28 December 2014 - 11:58 AM

It's possible that other genes are associated with Celiac I guess, but there has to be some genetic component or it's not Celiac.


There probably are other genetic components that cause celiac disease. We have only known about the DQ2 and DQ8 for a few years now, and doctors agree that approximately 3% of celiacs do not have either of those genes.... It happens. It will be interesting what other links they discover in the next few years.

Welcome to the board, nettinpete. It looks like you belong with us. You have the same positive tests that I had. Hope you are well soon.
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#937412 Feeling Sorry For Myself And Confused.

Posted by on 27 December 2014 - 08:36 AM

It is sometimes hard for people to resume eating gluten for 2-4 weeks  for the endoscopic biopsy, or 8-12 weeks for the blood tests, so we often tell people to get the testing done before going gluten-free - it gets trickier when your appointment is almost 2 months away. Have you had any tests done yet? If you can get all the tests run by your GP, it might be a good idea to resume eating gluten and getting the tests done soon and then you will probably only have to resume gluten for 2-4 weeks for the biopsy. I didn't see how long you have been gluten-free, but if it is only a few days you won't need to resume eating gluten for long (most likely) to get accurate tests. If you were gluten-free for a month, I would eat gluten for a good month before testing.... The shorter amount of time you were gluten-free, the shorter the gluten challenge will probably be required.

 

If you get the GP to do the testing, get as many tests run as possible.  These are the tests:

  • ttG IgA and tTG IgG (most popular tests - get both done and not just the tTG IgA) - tissue transglutaminase
  • DGP IgA and DGP IgG (newer tests good at detecting earlier celiac disease - get both - it replced the AGA tests) -deaminated gliadin peptides
  • EMA IgA (detects more advanced damage - similar to the tTG igA) - endomysial antibodies
  • AGA IgA and AGA IgG _older and less reliable tests largely replace by the DGP tests) - anti-gliadin antibodies
  • total serum IgA - a control test to ensure you make enough IgA for accurate tests

 

If you haven't been gluten-free long, consider resuming eating gluten for a time and get the tests done. If you are gluten-free from December to February, you will need a 2 -3 month gluten challenge for accurate tests - why go through that if you don't need to, right?  

 

Best wishes.   :)


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#937367 Feeling Sorry For Myself And Confused.

Posted by on 26 December 2014 - 02:44 PM

Welcome to the board.  :) The new year is a good time to change your health. I hope 2015 is a good one for you.


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#937201 Why Am I Putting Off The Inevitable?

Posted by on 21 December 2014 - 02:13 PM

In my experience, when we think something is up with our kids, we're usually right. We may not be right about the cause but we know when something is up.

 

Good luck with the tests.


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#937079 Endoscopy

Posted by on 18 December 2014 - 07:26 PM

I met with the GI today and she asked if anyone had talked to me about my lab results and I told her the nurse said they showed positive for celiac. The GI responded with, "they're not positive, just slightly elevated and we need to do an EGD to rule it out". 

Sooooo.. if she wants to "rule it out". What else would create these lab results if its not Celiac? Just kind of curious what would come next if my biopsy happens to come back negative.

Nothing.  Your results were sky high, you have celiac disease in the family, and you have symptoms - that's celiac disease.  You appear to have a doctor who wants to cross all of their t's and dot all of their i's before they'll sign off on a diagnosis.

 

About 5% of all positive tTG IgA results are caused by diabetes, crohn's, colitis, thyroiditis, chronic liver disease, or a serious infection BUT it would be a weak false positive - not a positive that is at almost 200.  That's celiac disease.

 

Slightly elevated... hmph! :rolleyes:


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