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nvsmom

Member Since 12 Jun 2012
Offline Last Active Today, 10:27 AM
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#940920 Endoscopy Today

Posted by on 24 February 2015 - 07:58 PM

Most celiacs can't be diagnosed except from the biopsy.  Things usually look good, if sometimes a bit inflamed, while they are doing the endoscopy.

 

Good luck to your son.  :)


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#940801 Is It Celiac Disease?

Posted by on 23 February 2015 - 10:02 AM

Genetic tests aren't really useful, in my opinion.  All they do is show whether you are one of the 30% of the people world wide who have the DQ2 or DQ8 genes; it doesn't tell you if you have celiac disease.  Yes, 97% of celiacs do have the DQ2 or DQ8 genes, but 3% do not. A positive genetic test just tells you if you are at greater risk of getting celiac disease, and not if you have it.

 

I agree with Kareng, blood tests should be done if there is any chance that the biopsy results were not positive because of celiac disease.... but it usually is celiac disease.

 

That doctor sounds like a dolt.  One month?  Hah!  We wish.  My autoantibodies were not even back to normal at 9 months so I KNOW my intestines were still being attacked.

 

I would consider going dairy free again.  Half of all celiacs can't handle dairy when they are diagnosed.  Over 2 years gluten-free, I can have small amounts of lactose, but I pay for it for a few days.

 

Corn and soy are problem foods for some celiacs.  Keeping a food and symptom journal may help you pinpoint a problem.  Just keep in mind that food sensitivity symptoms appear minutes to days after the food is eaten.

 

Thyroid check is a good idea too.  It can slow and mess with digestion too.  Having that treated, if needed, can really help.  TSH, freeT4, freeT3, and TPO Ab are the best tests.  Avoid T4, T3, total T4, and total T3 as they won't tell you as much.


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#940606 Abdominal Pain

Posted by on 18 February 2015 - 07:05 PM

You might want to get tested before going gluten-free any longer.  Celiac tests will become negative after a time on the gluten-free diet, including for all celiacs.  If you choose to test in future, after being gluten-free for some time, you will need to resume eating gluten for two to three months, and not all celiacs are willing to feel badly, for so long, just to get a diagnosis.  Get tested if you can.

 

As for that left side pain, your large intestine runs down the left just before it... exits the body.  Constipation or a change in bowel habits could be causing that discomfort, and that could result from a change in diet.  If you are staying gluten-free, you'll need to give your body more time to adjust.  It can take a celiac months or years before they truly start feeling better.

 

Best wishes in whatever you decide to do.  :)


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#940489 Bad Blood Test Results

Posted by on 16 February 2015 - 06:24 PM

:( Poor kid.

 

Has he had the DGP IgA, DGP IgG< or EMA IgA tests done recently?  They might be worth checking to see if gluten is the problem.

 

The EMA IgA is usually positive only if the tTG iGA is quite active - only positive when the disease is in it's advanced stages.  If he is gluten-free, the EMA IgA will come down before the tTG IGA does.

 

The DGP also reacts more quickly than the tTG tests.  In fact, the DGP tests are often used to test for dietary compliance.  If the DGP tests are positive, it means gluten is getting into his diet somewhere.


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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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#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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