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Thanks For Sharing Your Thoughts On My Son's Test!

paints

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paints Newbie
paints
Posted

Hi everyone, my first posting!  Please share any thoughts, I will appreciate it so much.

 

And this one is for my son:  He's eight and has been through such a rough time with a broad range of symptoms, from learning issues to emotional problems that don't seem to "match up" with him to low weight and height.  Stranger issues too, like an insane hunger even when eating really huge, hearty meals four times daily, extreme thirst, and frequent urination with high volume.  Thankfully I am hopeful that placing some gluteny puzzle pieces will bring some relief.

 

So far, his tests show:

weak positive TTG IgG

normal TTG IgA

normal total IgA

normal EMA,

normal DMG IgA and IgG

 

The TTG IgG is 8.0 U/ML

negative range: <6

weak positive: 6-9

positive: >9

 

(Schedule for first consult with gastroenterologist for next Tuesday)

 

Do these test results seem to indicate greater likelihood of gluten sensitivity than celiac?

 

Is it unusual to have celiac, yet be negative for each EMA, DMG and TTG IgA?

 

Also, he frequently tests low (just slightly) for carbon dioxide.  The doctor always says it's irrelevant, but it's perfectly consistent in being always low when it's been tested over the years, so I feel it's a clue.  

 

Thanks for your help!

 

 

 

 

 

 

 

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nvsmom Community Regular
nvsmom
Posted

Welcome to the board. :)

 

Did the doctors run an IgA (immunoglobulin A) control test too? About 1/20 celiacs are low in IgA so they will not make enough IgA for accurate IgA based tests (tTG IgA, EMA IgA and DGP IgA) so those tests will almost always end up as a false negative. I mention that because only the tTG IgG was positive. It's not unusual to have only one positive test, but the tTG IgG is not often the only positive test.

 

The tTG tests show that there is damage happening, or being attempted, to the villi of the small intestine. Only celiacs end up with intestinal damage; those with non-celiac gluten intolerance (NCGI) do not have intestinal damage (but they do feel every bit as poorly as a celiac). That low positive tTG IgG means that something is not right in his intestines. The result is probably due to celiac disease but occassionally, for the TTG IgG it's 1-9% of the time, the positive result will be caused by another problem. I know that for the tTG IgA tests, a weak positive can sometimes be caused by thyroidistis, diabetes, crohn's and colitis, liver disease, and severe infections; I don't know if that is the same for the tTG IgG tests though.

 

This report dicusses the celiac tests on pages 10-12. It's a good read and can help one understand more about testing and the disease itself.

Open Original Shared Link

 

So, I think the  positive test is more liely due to celiac disease than NCGI. Are you planning a endoscopic biopsy for further testing? If so, make sure he is still eating gluten until the testing is finished. Check if the total serum IgA was run too.

 

I also think he should be checked for diabetes too based on that test and his greater thiirst and urination.

 

Best wishes.

paints Newbie
paints
Posted
  • Author

Welcome to the board. :)

 

Did the doctors run an IgA (immunoglobulin A) control test too? About 1/20 celiacs are low in IgA so they will not make enough IgA for accurate IgA based tests (tTG IgA, EMA IgA and DGP IgA) so those tests will almost always end up as a false negative. I mention that because only the tTG IgG was positive. It's not unusual to have only one positive test, but the tTG IgG is not often the only positive test.

 

The tTG tests show that there is damage happening, or being attempted, to the villi of the small intestine. Only celiacs end up with intestinal damage; those with non-celiac gluten intolerance (NCGI) do not have intestinal damage (but they do feel every bit as poorly as a celiac). That low positive tTG IgG means that something is not right in his intestines. The result is probably due to celiac disease but occassionally, for the TTG IgG it's 1-9% of the time, the positive result will be caused by another problem. I know that for the tTG IgA tests, a weak positive can sometimes be caused by thyroidistis, diabetes, crohn's and colitis, liver disease, and severe infections; I don't know if that is the same for the tTG IgG tests though.

 

This report dicusses the celiac tests on pages 10-12. It's a good read and can help one understand more about testing and the disease itself.

Open Original Shared Link

 

So, I think the  positive test is more liely due to celiac disease than NCGI. Are you planning a endoscopic biopsy for further testing? If so, make sure he is still eating gluten until the testing is finished. Check if the total serum IgA was run too.

 

I also think he should be checked for diabetes too based on that test and his greater thiirst and urination.

 

Best wishes.

Hi Nicole,

 

Yes, the Immunoglobulin A was normal.  Diabetes has been ruled out.  I found that report very helpful, but confusing when it comes to the TTG IgG.  It doesn't give it's specificity and sensitivity alone, but groups its specificity and sensitivity (last) along with some of the other tests?  Does that indicate the reliability when the tests are combined?  Under the paragraph titled "IgA TtG" it sometimes speaks of "tTG" tests, but it's not clear if that includes TtG IgG or only the IgA of the heading.  It seems to be the most mysterious of the tests?  Is there any other info you can give me on it?

 

Yes, we will do the endoscopy if possible. 

nvsmom Community Regular
nvsmom
Posted

Oh oops, I did quote the tTG IgA specificity instead of tTG IgG specificity, didn't I? Sorry about that. :)

 

Yep, it is a more rarely positive test. I think that is partially because IgA is based in the mucosal linings, like in the gut, whereas the IgG is throughout the body, and not as location specific. Plus the tTG IgG isn't  as good of a test -  I found Open Original Shared Linkthat discusses the sensitivity and specificity of the tTG IgG test. The tTG IgG's sensitivity is only 40%, but it obviously caught your son.  The specificity is about the same as the tTG IgA at about 95% so his chances of it being something other than celiac is only about 5%.

 

The link I just mentioned does not discuss the DGP tests though, and the DGP IgG is thought to be one of the most specific and sensitive to celiac disease. It's a pretty new test that is not available everywhere yet though. Your Ds did have a very comprehensive panel run.

 

Is he having the endoscopy soon? Have you thought about going gluten-free even if the endoscopy is negative (a negative biopsy with positive blood work happens more often than you would think)?

paints Newbie
paints
Posted
  • Author

Oh oops, I did quote the tTG IgA specificity instead of tTG IgG specificity, didn't I? Sorry about that. :)

 

Yep, it is a more rarely positive test. I think that is partially because IgA is based in the mucosal linings, like in the gut, whereas the IgG is throughout the body, and not as location specific. Plus the tTG IgG isn't  as good of a test -  I found Open Original Shared Linkthat discusses the sensitivity and specificity of the tTG IgG test. The tTG IgG's sensitivity is only 40%, but it obviously caught your son.  The specificity is about the same as the tTG IgA at about 95% so his chances of it being something other than celiac is only about 5%.

 

The link I just mentioned does not discuss the DGP tests though, and the DGP IgG is thought to be one of the most specific and sensitive to celiac disease. It's a pretty new test that is not available everywhere yet though. Your Ds did have a very comprehensive panel run.

 

Is he having the endoscopy soon? Have you thought about going gluten-free even if the endoscopy is negative (a negative biopsy with positive blood work happens more often than you would think)?

 

Ohhhhhh, thanks so much for that info!  Incredibly helpful. 

 

His pediatrician ran the test results and thankfully she was willing to order every one I asked for.  He will certainly be going gluten-free regardless of the biopsy results.  Actually, it is almost physically painful for me to give him gluten at this point, but for various reasons, but it will take an official diagnosis to get my ex-husband to follow the dietary restrictions when they are together, so I am holding out for a doctor's degree and throwing a bagel his way every day.  Our first consult with the specialist is Tuesday and I'm hoping the biopsy would be soon after, since it only took two weeks to get a new patient appointment?  but if the dr. is willing to diagnose without biopsy, that'd be great, so a lot depends on the consult.  All in all, I'm hopeful that dr will be helpful, but totally prepared to handle it if he's not.  We get to see the dr who published the list of gluten foods (which I think I found through this website) so it's a good sign that he's knowledgeable overall.  He WILL.... make up for a long string of doctorish disappointments, so long it stretches back to before my son's birth, but that's another story. :rolleyes: No pressure or anything, doctor.

 

You wrote:

I know that for the tTG IgA tests, a weak positive can sometimes be caused by thyroidistis, diabetes, crohn's and colitis, liver disease, and severe infections; I don't know if that is the same for the tTG IgG tests though....

then:

IgA is based in the mucosal linings, like in the gut, whereas the IgG is throughout the body, and not as location specific

 

Any chance you meant to say IgG in the first quote?

 

Wasn't it statistically unlikely for him to be negative on all these other tests if he has celiac?  maybe .....since all these studies were on biopsy-positive people, it'd be statistically unlikely for a biopsy-positive patient to be negative on all these tests....and if that reasoning makes sense (my brain is a bit twisted now), it makes me think a biopsy positive would be unlikely for my son.

 

Based on such high specificity, is there a decent chance the dr. will diagnose based on tTG IgG alone?  I'd prefer to skip the endoscopy since I reasoned (up there) it will likely be negative and start gluten free sooner.

 

Do gastroenterologists typically order the genetic testing?  and is it usually covered by insurance? (we have United Healthcare).

 

Thanks DEARLY for your help and patience with my questions!

nvsmom Community Regular
nvsmom
Posted

Oh, that's a pain that your ex isn't on board. There have been a few parents who have had to deal with that around here over the last year or so.  :( If you check in the part of the forum that deals with treating children (or just do a search for it in the forum) you'll probably find some similar stories... Same thing with a positive ttG IgG test; if you do a search, you'll find others too.

 

 

You wrote:

I know that for the tTG IgA tests, a weak positive can sometimes be caused by thyroidistis, diabetes, crohn's and colitis, liver disease, and severe infections; I don't know if that is the same for the tTG IgG tests though....

then:

IgA is based in the mucosal linings, like in the gut, whereas the IgG is throughout the body, and not as location specific

 

Any chance you meant to say IgG in the first quote?

 

Wasn't it statistically unlikely for him to be negative on all these other tests if he has celiac?  maybe .....since all these studies were on biopsy-positive people, it'd be statistically unlikely for a biopsy-positive patient to be negative on all these tests....and if that reasoning makes sense (my brain is a bit twisted now), it makes me think a biopsy positive would be unlikely for my son.

 

 

No, I'm afraid I did mean that the tTG IgA is known to indicate thyroiditis, diabetes, etc. I'm not sure if the tTG IgG can show the same things; to be honest I haven't researched it much because so few doctors use it. I don't know if those autoimmune disorders affect the IgG portion of the body the same way they affect the IgA (mucosal lining) portion of the body. I would assume it is similar BUT because the IgG often deals more with pathogens, I would GUESS that the tTG IgG would have an increased likelihood of a mild (false) positive caused by an infection rather than other sources. By increased likelihood, I just mean that the 5% of the time that a positive happens and it's not caused by celiac disease, I am guessing that it is more often caused by infection rather than the AI diseases like diabetes.... Does that make sense?  It's just a guess though.

 

 

Based on such high specificity, is there a decent chance the dr. will diagnose based on tTG IgG alone?  I'd prefer to skip the endoscopy since I reasoned (up there) it will likely be negative and start gluten free sooner.

 

Do gastroenterologists typically order the genetic testing?  and is it usually covered by insurance? (we have United Healthcare).

 

I would guess that it is fairly unlikely that the doctor will diagnose on the tTG IgG alone. Just a few days ago someone else started a post on diagnosing celiac disease on blood tests alone and one member (powerofpositivethinking)posted a great lik about how celiac disease is diagnosed. This is the discussion: https://www.celiac.com/forums/topic/104887-cannot-get-diagnosis-from-blood-test-alone/

And this is PoPT's link: Open Original Shared Link

 

Some doctors will diagnose on blood tests alone, but there aren't many. It's more common to get diagnosed with biposy alone, and the most common appears to be biopsy and blood test. Some people do the genetic tests if the blood tests or biopsy were inconclusive or not an option. My doctor diagnosed me on blood tests alone but my results were higher (and considered more conclusive) and I had two positive blood tests.

 

I would prepare for the doctor to want the endoscopy.  :( If it is done, make sure they take at LEAST 6 biopsy samples, if not more. If the damage is patchy, it is very possible that the doctor will miss biopsying the damaged sections - more biopsies make it a more accurate test.

 

I'm afraid I know next to nothing about the genetic testing except they generally look at the DQ2 and DQ8 genes (I believe). Doctors claim that one can not have celiac without those genes but I have seen rare cases where the genes are negative and people still have positive blood tests or biopsy.  Perhaps start a new thread about that to learn more, or do a search.

 

I can't help with insurance either. I'm up in Canada so we don't have that to deal with... we just get turned down and then travel and pay out of pocket to get stuff done.  LOL   :rolleyes:

paints Newbie
paints
Posted
  • Author

Oh, that's a pain that your ex isn't on board. There have been a few parents who have had to deal with that around here over the last year or so.   :( If you check in the part of the forum that deals with treating children (or just do a search for it in the forum) you'll probably find some similar stories... Same thing with a positive ttG IgG test; if you do a search, you'll find others too.

 

 

No, I'm afraid I did mean that the tTG IgA is known to indicate thyroiditis, diabetes, etc. I'm not sure if the tTG IgG can show the same things; to be honest I haven't researched it much because so few doctors use it. I don't know if those autoimmune disorders affect the IgG portion of the body the same way they affect the IgA (mucosal lining) portion of the body. I would assume it is similar BUT because the IgG often deals more with pathogens, I would GUESS that the tTG IgG would have an increased likelihood of a mild (false) positive caused by an infection rather than other sources. By increased likelihood, I just mean that the 5% of the time that a positive happens and it's not caused by celiac disease, I am guessing that it is more often caused by infection rather than the AI diseases like diabetes.... Does that make sense?  It's just a guess though.

 

 

I would guess that it is fairly unlikely that the doctor will diagnose on the tTG IgG alone. Just a few days ago someone else started a post on diagnosing celiac disease on blood tests alone and one member (powerofpositivethinking)posted a great lik about how celiac disease is diagnosed. This is the discussion: https://www.celiac.com/forums/topic/104887-cannot-get-diagnosis-from-blood-test-alone/

And this is PoPT's link: Open Original Shared Link

 

Some doctors will diagnose on blood tests alone, but there aren't many. It's more common to get diagnosed with biposy alone, and the most common appears to be biopsy and blood test. Some people do the genetic tests if the blood tests or biopsy were inconclusive or not an option. My doctor diagnosed me on blood tests alone but my results were higher (and considered more conclusive) and I had two positive blood tests.

 

I would prepare for the doctor to want the endoscopy.   :( If it is done, make sure they take at LEAST 6 biopsy samples, if not more. If the damage is patchy, it is very possible that the doctor will miss biopsying the damaged sections - more biopsies make it a more accurate test.

 

I'm afraid I know next to nothing about the genetic testing except they generally look at the DQ2 and DQ8 genes (I believe). Doctors claim that one can not have celiac without those genes but I have seen rare cases where the genes are negative and people still have positive blood tests or biopsy.  Perhaps start a new thread about that to learn more, or do a search.

 

I can't help with insurance either. I'm up in Canada so we don't have that to deal with... we just get turned down and then travel and pay out of pocket to get stuff done.  LOL   :rolleyes:

Thanks Nicole!  super helpful again.  Off to see the dr in the morning and see what happens.

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paints Newbie
paints
Posted
  • Author

Thanks Nicole!  super helpful again.  Off to see the dr in the morning and see what happens.

Just to update:  When the GI doc reviewed my son's symptoms and test results yesterday, he said that neither pointed to celiac, in fact he is "certain" he does not have celiac (ex-husband trembled with glee that he'd have no inconvenience with dietary restrictions) and he would not waste an endoscopy in this case!  This doctor said it would be too unusual for the EMA and TtG IgA to be negative.  He also said that the TtG IgG was known for an extremely high false positive rate.  He said in a study done at his center (unpublished), it was only about only 20% for specificity.  I asked him how he would explain the 85-95% specificity in other studies and he said perhaps it was due to the population sampled, that they had such a high likelihood of being celiac to begin with instead of starting with healthy controls.  I haven't had a chance to review the methods for those studies (much less info on this test as it's rarely used anyway), but maybe I will check it out later. 

 

Moving on....we have no official diagnosis but now to give a gluten free diet a good try!  Intuitively, it sure feels like a relief for me not to give him gluten anymore.  Hope the payoff will come soon.  Meanwhile, it's very challenging because he cries from hunger even just after I fed him five courses.  He asked today, "How long have I been eating?" and it had been over an hour, full-on eating, not stopping really. 

 

I'd like to keep him off all grains at first and challenge them later, but I can't afford to because he's feeling so hungry after I feed him every thing I possibly can.  I recently switched to white rice from brown, but he says it makes him feel badly, "stopped up and tight", so I guess back to brown rice and oatmeal for starchy, please-god-fill-him-up carbs (he's always been fairly adverse to potatoes)

 

Just so weird, that this white rice causes him more problems than wheat of all kinds and brown rice, neither of which cause immediately observable symptoms.  I had read it would be easier to digest than brown rice.  Anyone else experience something like this with rice?

nvsmom Community Regular
nvsmom
Posted

The doctor's response smells fishy to me... If he thought the tTG IgG test was such a bad test for celiac disease, then why did he order it in the first place? And my cousin's son, who was 10 at the time of his celiac disease diagnosis ONLY had cognitive and attention issues for symptoms and nothing else... nothing.

 

I have seen a lot of people with a negative EMA IgA test with positive biopsies (or other tests). That isn't unusual. I agree with him that the tTG IgA is usually positive in celiacs but the key word there is "usually" and not "always".

 

Hmm. Did he tell you what studies he was quoting from? I would be interested to read it; there's not a lot out there on the tTG IgG test.

 

I hope he does well on the gluten-free diet, and doesn't eat you out of house and home.  LOL  My appetite (and to a lesser extent, my kids' appetite) increased for a couple of months after going gluten-free. My appetite eventually came down again. My boys' eating habits seem to change week to week.  If you can, try to add fats to his diet. Put peanut butter on his apples. Maybe Hemp, avocados or protein powder into banana smoothies. Add extra (coconut) oils to all baking.... stuff like that may help fill him up longer. Carbs generally make a person's blood sugar cycle up and down more dramatically which actually can increase appetite. KWIM?

 

Best wishes with the diet (and the ex's help with it). There are lots of good cooks to ask for advice.  :)

pocahontas30 Newbie
pocahontas30
Posted

I just thought I'd let you know about my son's diagnosis. He was tested b/c his brother has celiac. His bloodwork came back questionable (Iga too low) so they tested IGg. It came back negative so the dr. said he doesn't have celiac. But after letting the dr. know that he still has symptoms (throws up a lot, migraines, complains of tummy aches), he decided to do a biopsy. I wasn't surprised that he was positive for celiac, but the dr. office sure was! The nurse who called to give me the results couldn't believe he was positive and told me she was shocked. Fortunately I have been reading a lot on this site and learned that it is normal for celiacs to get false negatives with blood tests. If I were you, I'd find a new dr. I took my kids to a gastroenterologist, and he was more than willing to go the extra mile to find out what was causing my kids issues.

MominSoCal Apprentice
MominSoCal
Posted

Just to add...my 7yo DD had a weak positive TTg IgA this Sept, followed by neg biopsy results.  This was very disappointing for me, because I felt a diagnosis would be critical to keeping her gluten-free in the future and to have relatives and school take it seriously.

We are on week #2 of gluten-free and she is doing AMAZING.  Her improvements are without a doubt related to eliminating gluten.

Her doctor also felt confident that at this time, she does NOT have Celiac.  But in his opinion, her weak positive test, along with her symptoms were most certainly (at the minimum) doe to gluten sensitivity and that if she didn't have Celiac officially now - she would in her future.  Not to mention, while she didn't show damage from Celiac, she had imflammation of the esophagus and chronic gastritis (both of which can be associated with Celiac)

So how do I handle this with relatives and school?  I tell everyone she is blood (+) for Celiac and that her scope showed damage (I just don't elaborate on the type).  Just makes it easier.

My parents weren't completely on board, but now that they see the difference in her...they are certainly coming around!

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