Jump to content

Follow Us:  Twitter Facebook RSS Feed            

   arrowShare this page:

   Get email alerts  Subscribe to FREE Celiac.com email alerts

Celiac.com Sponsor:                                    


Member Since 12 Jun 2012
Offline Last Active Yesterday, 10:17 AM

#933450 Blood Test Negative, But Still Sick

Posted by nvsmom on 25 October 2014 - 09:38 AM

IBS is often the diagnosis they give to celiacs or those with non-celiac gluten sensitivity (NCGS) before they have figured out the cause of the pain.  Someone around here used to joke that IBS is a doctor's acronym for "I Be Stumped".  ;)


Do you know the ranges for those celiac tests you had run?  The tTG IgG, DGP IgA, and DGP IgG tests look negative but if your range is very small (like 0-1) it could be positive.


I would advise you, if you are satisfied all of your celiac testing is done, to try the gluten-free diet for a few months.  You could have NCGS, which is evrey bit as nasty as celiac disease but does not include intestinal damage, so you may need to eat gluten-free.  Celiacs, and those with NCGS, do not always (or even often) feel better immediately after going gluten-free. Some symptoms can take months or years to resolve so giving the gluten-free diet a trial of around 6 months is often the only way to go.  Make sure you are strictly gluten-free. Trace amounts every few weeks is often enough to set people back and hamper their recovery.


Best wishes to you.  I hope going gluten-free long term will help you and you'll begin to feel better soon.

  • 1

#933423 Want To Know About Anti Gliadin Antibody Test

Posted by nvsmom on 24 October 2014 - 06:07 PM

The AGA (anti-gliadin antibodies) tests are both about 80-95% specific to celiac disease.  A positive result means that there is a 80-95% chance that it is caused by celiac disease.  Look at page 12 of this report for the numbers: http://www.worldgast..._long_FINAL.pdf

Some doctors also believe that the AGA tests can indicate non-celiac gluten sensitivity (NCGS) which is just as nasty, in my opinion, as celiac disease.  I think that account for some of the AGA "false positives" for celiac disease.... but the treatment is the same.


The problem with the AGA tests are that they miss so many celiacs.  There are not very sensitive. If the AGA caught you, you're lucky.


I'm afraid that joint pain, nervous system and brain issues are often the last symptoms to improve.  I'm two and a half years gluten-free and my joint pain is finally now quite a bit better, but still not better.  I get weeks that can be hard, but it is much better than the months of severe pain that I used to get. I was convince that I had lupus or RA because I was still so bad after being gluten-free over 9 months.  Joint pain can take a long long time to get better.  :(


Hang in there.

  • 2

#933421 Celiac In Japan And New Symptoms

Posted by nvsmom on 24 October 2014 - 05:36 PM

There are very basic restaurant cards available for free on the web.

Here is the French version:




Japanese including soy sauce explanation:



My reactions to gluten tend to grow when I am repeatedly exposed. I feel worse as time goes on and it can take many weeks to recover.  For me, part of this disease was feeling flike I had a flu so I would not be surprised if what you experienced was a gluten set back... Especially so early into your recovery.


You'll need to be more strictly gluten-free in order to get well.  If there are no food choices, you will need to skip the food.  :(  You may need to risk offending some people, or standing out, in order to keep yourself safe. :(


I hope you feel better soon.

  • 1

#933014 Dealing With The Fatigue And Head Fog?

Posted by nvsmom on 19 October 2014 - 06:12 PM

Yep, coffee.  I used to rely on coffee a lot.... And occasionally that healthy stuff like exercise.


I hope you feel better come Monday.

  • 1

#932611 Feeling Angry!

Posted by nvsmom on 13 October 2014 - 09:14 AM

I agree with cyclinglady, it usually takes a few days to a few weeks to feel better. Two weeks seems the average for starting to feel well again but quite a few are still fatigued and "off" a month later.


I also agree that he should have his own packed food at the base. They've proven that they can mess it up.  It is better to be safe than sorry, so if it is feasible I would pack him food to eat out of school in re-heatable containers.  If having different food is an issue for him you can always get their menu and try to co-ordinate with what they are serving.


Hope he is better soon!

  • 1

#932500 Is There Medication For Celiac That Allows You To Consume Gluten?

Posted by nvsmom on 11 October 2014 - 12:08 PM

I would look into her medical records.  If she had a positive blood test (tTG IgA, tTG IgG, DGP IgA, DGP IgG, EMA IgA) then she has celiac disease.  If her total serum IgA was low, then her tTG IgA, DGP IgA, and EMA IgA tests will show a false negative and can not be used to diagnose her.  Does she have a positive endoscopic biopsy (at least 6 samples taken)?  She needs to be eating gluten in the 2-3 months prior to testing or the tests could be falsely negative.


Genetic testing will just say if she is part of the population which COULD get celiac disease, not if she has celiac disease.


Oops, Kareng just posted... ditto everything that she said.  :)

  • 1

#932437 Need Advice On Diagnosis

Posted by nvsmom on 10 October 2014 - 07:57 AM

Dr Fasano, one of the leading researchers in celiac disease, states that for a celiac disease diagnosis you should meet 4 of the 5 following criteria:

  1. typical symptoms of celiac disease
  2. positivity of serum celiac disease immunoglobulin, A class autoantibodies at high titer
  3. human leukocyte antigen (HLA)-DQ2 or DQ8 genotypes
  4. celiac enteropathy at the small bowel biopsy
  5. positive response to the gluten-free diet



You meet criteria 1,3,4, and 5.  That's celiac disease, even if a doctor won't state that it definitely is (because he's covering his own... um, backside.


It really isn't that unusual to have negative tests, especially after going gluten-free. Those tests can easily miss people, and for some reason they just don't work on everyone.  My guess is though, that if you continued to eat gluten, and made yourself really, really sick over months and years, that your tests would be positive eventually.... But you really don't want to, or need to, go there.  


You've met the diagnostic criteria. It is time to settle into the gluten-free life, check your nutrients and bones, and get your family to get tested.  :)


Welcome to the board.  :)

  • 1

#932086 Trying To Figure Out What Is Wrong

Posted by nvsmom on 04 October 2014 - 04:52 PM

Oh yeah. That DGP IgG of yours is well over double the normal limit - that is something to take seriously. The DGP IgG is considered to be one of the most specific (to celiac disease) tests out there. A positive result means you have celiac disease 99-100% of the time.  (This is where I got my stats: http://www.worldgast..._long_FINAL.pdf)  It loos like celiac disease to me too!


Low vitamin levels, as well as low cholesterol and triglycerides are common symptoms of celiac disease. My cholesterol and triglycerides were far enough below normal that my doctor is trying (through diet) to raise it some.  LOL


I agree with the others that you need to see a GI specialist and eventually go gluten-free.  When you are finally able to go gluten-free (after testing is complete)  make sure you give the diet a few months to help. The first year of recovery is full of ups and downs, and many symptoms may not improve for many months.


Welcome to the board.  :)

  • 1

#931868 Do These Symptoms/endoscopy Results Sound Like Celiac?

Posted by nvsmom on 02 October 2014 - 03:47 PM

Thanks you two - I'm seeing my GP tomorrow I will ask about the celiac panel. I know I've had some celiac bloods done but I think it was just a subset of the list you cited NVSMOM. How reliable are the results though ?? I hear false-positives and false-negatives are not uncommon??


False positives are very rare.  I think it gets as high as 5% for the tTG IgA test but it would be a weak (false) positive and is probably caused by thyroiditis, diabetes, liver disease, crohn's, colitis, or a serious infection... The positive is caused by something in all cases but 95% of the time it is caused by celiac disease.


False negatives are much more common.  The biopsy can have a false positive rate as high as 20%, especially if fewer than 6 samples were taken.  The blood tests can have a false negative rate as high as 25% based on the test's sensitivity - that's why it is a good idea to get as many tests done as possible.

This report (page 12) shows the sensitivities of most of the tests, as well as how specific the results are to celiac disease (% of positives caused by celiac disease): http://www.worldgast..._long_FINAL.pdf


Hang in there!  :)

  • 1

#931643 How Do You Know You Are gluten-free?

Posted by nvsmom on 29 September 2014 - 01:56 PM

Icelandgirl is right, two months is not very long to be gluten-free - even though we feel like it is.  At two months gluten-free I felt worse than I did at 1 month gluten-free.  A bunch of my symptoms came roaring back in and it took me a couple of months  to get back to where I was.  I had a few more (more minor) dips in the road but I was feeling quite a bit better, and consistently better, by 18 months gluten-free.


I know it is awful to hear (I didn't like hearing it) but you may just need more time. 

  • 1

#931087 Need Help / Advice - Think I'm Celiac

Posted by nvsmom on 20 September 2014 - 01:24 PM

The DGP IgA and DGP IgG are also great tests to get done.

  • 1

#930903 Cross-Contamination Worsens After gluten-free?

Posted by nvsmom on 17 September 2014 - 08:27 AM

I don't think I became more sensitive, but I think my reaction became more obvious.  Before I was diagnosed I was constantly feeling poor - it was my normal. After being gluten-free for many months, illness was no longer my normal so if something bothered me, it was much more obvious.  KWIM?


For example, when I had a stomach ache after almost every meal, some major cramping was not unusual.  Now, if I get that pain, it really stands out because I don't have that high background pain level.


I don't think my gluten sensitivity changed, just my reaction and/or how I perceived that reaction.

  • 1

#930718 Can Raw Food Be Bad For Celiacs?

Posted by nvsmom on 14 September 2014 - 04:09 PM

I think it may be more of a matter of not having the proper gut bacteria that can help with digestion.  


Many people I have talked with about this said that it took them a while to adjust to a greater amount of raw fruits and veggies when their diets changed. Maybe it takes a while to get accustomed to the raw foods.


It could also be other food sensitivities that you are starting to notice.  I did not realiz apples gave me a stomach ache until after I had been gluten-free for quite a while - it was hard to notice a food sensitivity when you usually had a stomach ache after you ate.  LOL  ;)

  • 1

#930598 High Deamidated Gliadin Test

Posted by nvsmom on 13 September 2014 - 09:03 AM

Update time!


Okay, according to our doctor (who again, is the director of the celiac center at a prestigious children's hospital), the deamidated gliadin test is not as specific to celiac disease as I had thought from what I was reading :/  She said that the endomysial abs test was more specific and a positive result on that test would have her thinking more about celiac disease (we did not have this test done).


She also said that a positive result on a deamidated gliadin test could also be caused by some other conditionsā€¦  she specifically mentioned severe acid reflux or food allergies.  So my daughter's result could either be from one of those, or it could in fact be *early* celiac.  


So the plan is to keep a food diary for at least a week, along with noting symptoms, etc.  then continue on a regular diet for 6 months and then test again.  If it's celiac, the numbers will be higher at that point, and we will do a more complete panel of labs.  If her symptoms worsen, we do the labs closer to the 3 month mark.


I wanted to update for anyone who might find themselves in a similar situation :)


Of course I wish I had every answer now, but this is the way things go I supposeā€¦  one step at a time.  I can wait for 6 months :P


Huh. :huh:  I thought the EMA IgA had about the same specifity as the DGP IgG but it's a bit tougher for kids to get a positive on that one as it tends to be positive once the disease is more advanced. It's a very similar test to the tTG IgA and is rarely positive if the tTG IgA is negative - I think I've only seen that around here once in the last two and a half years that I've been hanging around.


Even if the DGP IgG is "only" 95% specific to celiac disease, I would think she would be looking at celiac disease as the culprit rather than acid reflux and food allergies.  I know the ttG IgA can (5% of the time) have a weak positive caused by thyroiditis, diabetes, crohn's, colitis, chronic liver disease, or a serious infection.  It tests fora possible attack to the endomysial layer of the intestines and other health issues can cause some damage similar to celiac disease.  The DGP test (as I understand it - but I'm not an expert) is positive when the body reacts to a deaminated gliadin peptide, which I believe is an artificial gliadin/gluten - the patient is reacting to gliadi/gluten....  would think that would be pretty specific.


But I'm not an expert.


I just get frustrated when doctors want people, especially children, to continue to damage themselves, to an even greater degree, so they can get a positive test result and make the "official" diagnosis.  Six months is a long time to purposefully make a child ill.  :(  I think a better tack would have been to try the gluten-free diet for 6 months, while keeping a food and symptom journal, and then retest all the tests to see if they have gone down, even the negative ones.  If they go down, that's an answer too and you've avoided an extra 6 months of poor health and growth.


A few more articles, in case you like to read this stuff too:





Best wishes with whatever you decide to do.

  • 2

#928418 Starting To Question Celiac In My 10 Year Old Daughter

Posted by nvsmom on 25 August 2014 - 02:19 PM

I think those are enough reasons to get her tested.  Bring that list to the doctor and ask for the tTG IgA, tTG IgG, DGP IgA, DGP IgG, EMA IgA and total serum IgA.  Don't have her go gluten-free until after all testing is complete.


Good luck with the doctor.

  • 1